I’m scared. Yesterday my husband (53) was diagnosed with high grade prostate cancer (Gleason 9 & 10) but he also has a low psa of 2.1. It was the pain that made our GP push for the mri. Its spread to seminal vesicles and 2 lymph nodes.
Our urologist and RO said there are still curative options. a lot of what I read doesn’t point in that direction.
Our kids are so small. 5, 8 and 11. My heart is breaking for them.
I guess the cure post before this (which I didn’t totally read) had me spiralling. Anyone out there with a Gleason 10 living disease free.
I’m sad too that he’s got such a long road ahead of him.
RO said maybe surgery and radiation and adt (even though he’s not convinced it will be as effective with low psa)
Uro said he doesn’t think he would operate based on local spread.
Written by
Peculiarshade
To view profiles and participate in discussions please or .
His best bet is brachy boost therapy (not surgery)= whole pelvic external beam radiation with boosts to the prostate and affected lymph nodes with 3 years of ADT and 2 years of Zytiga.
thank you Tall Allen and thank you for the sight! I found a compelling study that shows significant reduced mortality when docetaxel is added to the SOC in men with low psa/high Gleason cancer. Our cancer team first said no to chemo. Any thoughts on this and how to potentially persuade them to consider.
My husband is 57 with Gleason 9 and spread to a few lymph nodes both in and out of the pelvis. We met with a few different MO as well as RO and urology. Ended up pursuing triple therapy with Lupron/Nubeqa/Taxotere. We are nearing the end of chemo and his PSA is undetectable after a high of only 11 at diagnosis. Planning to move forward with radiation once chemo is completed. I'm unsure what the radiation protocol will be at this point. Happy to talk with you if that helps in any way! Best of luck!
Yes! This is the hope I’ve been holding on to! Chemo sounds rough and sadly he’s lost a lot of weight because he’s been in pain for 4 months - doc always chalking it up to cpps. Another outlier symptom. But yes to chemo!
I was diagnosed in 2017 as a G10. I have gone through RT, Brachy and 2 years of Lupron. After a 2 year break, I went back on Lupron and added Zytiga the last 3 years. My PSA has been undetectable since 2022, so there is hope.
that was the route my drs took. Spent 8 months on lupron and zytiga before radiation to shrink the tumor. Then radiation. In 2019 they were saying 18 months of drugs was as good as 3 years. Mine was stopped at 20 months. That was Feb of 2020. Guess we will see if they were right. Psa .1.
TA - I wonder if you have any thoughts. RO just called and told my husband to meet with the MO on Friday. Because his case is so nuanced they don’t know if they want to give chemo first and then radiation or vice versa. Any anectodes?
I don't know if the sequencing matters. My personal thoughts (without evidence) is to do the chemo first (called "neoadjuvant") because it might weaken the prostate cancer and make it easier for radiation to kill it.
I am very sorry to read about your husband. It is unusual to have prostate cancer with a low PSA. Maybe a second opinion is warranted? I’m no doctor but I have been dealing with this for many years.
My husband has meta spread to bones but PSA has never been above 10. It’s now under 1 with doublet therapy started this spring. There is a sub-type of prostate cancer like this.
Hello. I am kind of new here too, wife of 54 years old. 6 months into it. Still worried but way better than before. Reading posts here helped me a lot to come down and start our new life with cancer. Guys here have tons of knowledge and very supportive.
So sorry you're here. My husband did not have a low PSA- but did have metastasis, gleason 9 at diagnosis August 2017. He was 49 and very healthy otherwise. Kids were 14, 16, and 18 at his diagnosis. I wish I'd gotten them into therapy asap. Mostly because I was reeling and lapsed in helping them deal. They all did enter therapy- but I wish I'd done it sooner. I'd suggest that for yours. And, as a former teacher, I'd let their schools know so they can be understanding. Your house 'tone' will change. The kids will notice. It was such a shock and has been difficult to deal daily (well, at least every couple of months with PSA and oncology visits every couple months for the last 7 years) with the fear. I started keeping a journal- i write my fears, questions for drs, appointment notes, etc. You can read my bio for treatment details. It REALLY helped for my husband to find some sort of things he could 'control'. So, even though he was in good shape already, he started upping his workouts, eating better etc. Seemed to help him feel he was helping- and maybe made his body stronger to help treatments work. We are still fighting. He has had PSA blips upward, spot radiation and couple of times, there's never been a 'break'. But we are a very strong family out if it- and have tried to live each day as intentionally as we can. I do take days here and there to mourne what our life was before this was hanging over us- but my husband is just as loving and our relationship deeper from it. It was always a good relationship- but maybe more meaningful now? Not sure how to describe it. It helps me to keep informed- settles me. So I'm the one on sites and researching. But I have to limit myself to an hour in the mornings. It consumed me the first couple of years. I hope some of that helps- this site is the best one- most of the guys here are honest and truly helpful- with a side of humor. It's really helped me! Find yourself an outlet- yoga, lunch with a friend 1x a week, time for yourself. 💙
I feel you were talking about our life. The only difference is our husband's ages. Mine was diagnosed at age 70. We are still living each and every day as best we can. We say, "If we worry about tomorrow, we lose the JOY of today"
Some great advice and comfort as always on this site. Thanks to all of you for supporting Peculiarshade and her family on this beginning of her journey. Some truly great words of wisdom.
Only thing I can add is that at some point once you get past the fear, anger, sadness and anxiety there is light.
I can not speak for all of the people with prostate cancer but my wife and our family has come to accept our “new normal.” Honestly that has brought peacefulness and a renewed sense of purpose to live our lives in joy and love.
You will have ups and downs alone the way but you have weathered the hardest one. “You have cancer!”
Life definitely moves on with your new normal- but it's totally fine to mourne what life you had- and create new optimism. Our relationship is deeper in many ways because of the struggle. And it's ok to be the one on this site. In my relationship I'm the one who can delve into the research and read the uplifting as well as sad news here. He also does not enjoy reading lol. My husband has a great attitude and optimism. I did not share some scary stats I read in the beginning with him- I knew he needed optimism at the beginning and not bad 'maybe' news. You know your husband best to know what your roles may be in this. I was diagnosed with breast cancer after his diagnosis, and our daughter has crohn's- in all I'm the one who managed research etc. Knowledge calms me. You'll find your pace- but free-falling in the beginning is definitely how I felt too!💙
Go to Prostate Cancer Research Orgainization videos on Youtube. They cover a lot of information, and have positive video's about patients with Gleason 10 prognois, and will help you make educated health care choices going foward. And of course this great site.
I agree with what TA said. That is the path I would want for my husband. Please do not lose hope. Your husband still has local spread, and local can be arrested if the treatment is intense enough. Read the Stampede Trial. Has be also had a PSMA scan?. My husband is more advanced and I still have hope, You are fortunate that this was found a such a low PSA. I have a lot of faith this will be an excellent treatment for him and may very well be curative! Best wishes going forward!
My husband was diagnosed 7 years ago with nearly identical features as the OP husband. My husband’s psa was even lower at 1.25 at diagnosis. ADT has worked very well as he is still hormone sensitive.
If this were me, I would do immediate Germline testing to see if there is a mutation such as BR1 and BR2. If so, I would ask my oncologist about adding a Parp inhibitor such as Olaparib to his doublet therapy of ADT/ABI/PRED. I would also ask my oncologist the particulars of why or why not he is not in favor of chemo. I know that the therapy is best when it is used all together up front (Triple Play) rather than staggered, but my understanding is also that chemo is most effective when the metastatic burden is higher, and your husband has only evidence of local spread despite the adverse Gleason score. If the pathology is adenocarcinoma, the systemic therapy to weaken the cells combined with the whole pelvic radiation and brachy boost should be really effective in my opinion and from what I have studied. Good luck. I will be praying and please keep us all posted how he is doing!
This was a good idea. There is one you can do yourself called Color. They tell you whether you have any mutations, not just for Prostate Cancer, but other things. But it would be good to know ahead of time, especially the BRCAs and PTEN. Some mutations are problematic for PCa. At a minimum, it can give you some confidence if it comes back no mutations. There are likely other companies also
I feel for you and your family. I remember when I was first diagnosed and how overwhelming the diagnosis was. I too had a low PSA at diagnosis (below 3), and I had distant mets in my lungs (in addition to those in the prostate bed).
My recommendations are:
- Take it day by day. You are all reeling right now, but we have many members who had mets spread throughout their body at diagnosis, and they are living good lives years later. Anticipating grief can dominate your thinking and keep you from enjoying what you do have (your kids, etc.). Of course you are going to worry, but the worry and fear do not have to dominate your lives. Find a support group and maybe even counseling for your kids.
- If you haven't already, see a medical oncologist that specializes in prostate cancer. My urologist and oncology generalist (my term), scared the @#$! out of me with a dire prognosis and conflicting recommendations. They told me that I only had 18 mos to 2 years to live, yet here I am over 4 years later living a pretty good life - with many more years to come. ADT did the heavy lifting and is still working for me.
- Learn to accept that your husband will have good days and bad days, but just as the good days don't mean that he's cured, the bad days don't mean that his death is imminent. You too are likely to experience big emotional swings. Again, these just indicate what you are feeling at the time, and nothing more.
Your husband and your journey is a marathon, so get some comfy Hoka's and pace yourself. We're always here rooting for you.
I am so sorry to hear about your husband. This is a very scary time for both of you.
I too was diagnosed at age 53 with a high Gleason score. Mine had already spread to pelvic lymph nodes at diagnosis. My PSA was 30. I have documented most every treatment and PSA that I achieved along my journey in my bio. Feel free to check it out as may help. I just turned 60 a couple months ago.
This is a great forum with many wonderful , helpful people.
Have faith and turn to Jesus with everything you have! He brings good out of suffering and he knows what he is doing! When God allows us to suffer then we are more like his Son Jesus! He died to save us! Saying prayers for you all! God bless you and yours!
Hi - I’m am sorry that you and your husband are joining us here. This group has been hugely helpful and there are tons of smart people here.
I am also a wife of a younger man diagnosed at 61 with Gleason 9 that had metastasized to his lymph and bones. He was diagnosed in February of this year. His PSA was never above 9 and was referred to a urologist at 6 who took his sweet time and in 3 months it was a 9. My best advice is to take a deep breath and take it a day at a time, but also advocate and push for your husband’s care.
Couple questions - what did his biopsy say? Cribiform or anything else? Does he have any family history? PMSA scan?
I would also suggest having a medical oncologist that specializes in prostate cancer oversee his care. The MO can coordinate with surgeon(urologist) and radiation oncologist. They are much more knowledgeable on treatments for metastatic cancer than most urologists. Many of the ones at the national cancer centers are involved in trials and studying this disease.
I would also request germline and somatic (tissue) genetic testing. It will allow your MO to see if your husband has genetic mutations in his DNA or in his cancer cells. Some often these mutations respond better to certain drugs. It will allow them to make informed decisions. This explains these tests. nccn.org/patients/guideline...
As far as treating it, I would rely on medical oncology and the doctors to guide you, but always seek a second opinion if you feel it’s needed.
Before you jump into any treatment (surgical, radiation, or chemo) they need to start him on ADT. Our doctor started my husband on Casodex (oral) to prevent a tumor flare. Then after a month or two he got a shot of Elligard. The cancer feeds off testosterone and it will slow it down. Then plan treatment from there.cancerresearchuk.org/about-...
My husband had chemo, and is on Nubeqa and Eligard now. His PSA is .1 and his Mets are not showing up on a PMSA scan.
Many men in this group have been living with this disease 5,10 years, or longer. I follow all the news on it and they are discovering things regularly. Don’t lose hope. Sending you a hug. Feel free to PM me if you want.
This is so helpful and so much info! I likely will pm. Thank you.
Unfortunately low psm doesn’t respond as well to ADT and it doesn’t usually show spread on psma pet (the cancer doesn’t produce it so the dye has nothing to latch on to)
But apparently docetaxel can improve outcomes for this subtype.
Why does your treatment have doce? I hope ours does!
We are in Toronto and already at one of our top cancer centres with a multidisiplimary team. I’m definitely signing him up for th promise study - did it help you guys?
What were the results of his biopsy? Is it Adenocarcinoma? If it is it will show up on a Pmsa scan. It’s important to share those details because they have meaning for treatment. There is a lot of knowledge in this group so please let us know.
Also, don’t push for chemo. It isn’t always necessary, my husband has lost a lot of quality of life due to chemo. He has chemo induced neuropathy. I am not telling you this to scare you but it’s something an oncologist should factor in. His current oncologist said that he isn’t even sure if the chemo was necessary because of his spop mutation. So that is why I say get as much information before hand. Again, please let us know the cancer type and any other details. Thanks
My husband’s low psa has responded extremely well to adt. Diagnosed at age 52 in 1/2018, Gleason 9, psa 1.25 (yes that low). He is still hormone sensitive and is doing very well despite 7 years of treatments on and off.
My husband was diagnosed at age 70. That was in 2016. We are still here fighting this together. I as well do all the research. I have learned so much from this wonderful forum. I'm the one that ask the questions at our monthly Oncologist appointments. I love the look on the oncologist face when I ask some of the questions. He knows then that I do the research. What he doesn't know is most of the questions I'm asking has come from suggestions from many of the amazing warriors on this forum.
Wishing you and your husband the very best on this journey together.
It is scary Your right to worry and have fears for your husband, for his kids and for all the hopes and dreams....
It's a scary time.
Try n talk to each other, try to keep close(good) friends and family in your picture.
Accept it's a scary time for you all.
But also accept it is fear and it won't kill you guys it's a feeling and accepting its just a feeling
Fear usually doesn't help me much, can imobolise me, warps clear thinking.
You guys need to breath,
It's cancer, this cancer isn't as fast as other cancers.
I'm gleason 9 and started out at 49 with stage4 over 2y ago.
My twins hadn't taken GCSEs
I had many fears...
I still have some of those!
Breath, you don't need any rash decisions(don't let him spend life savings on a silly haircut, full body tattoos or an overpriced motor bike, actually, he's probly done all that at 50!!!
Breath, you will be ok.
Breath, your kids will be ok.
Breath you guys will be ok.
Keep clear head, write notes, get a folder for all medical stuffs that's all together and can be put away.
Hello and Welcome to this club that no one wants to join. My husband has had 4 types of cancer . The latest being recurring prostate cancer the earliest at age 58 was stage 3 colon cancer. . I am here to say I feel YOUR pain. I know how hard it must be for you to look at your kids as they learn Dad is sick . In addition to your other tasks you must now become an expert in cancer treatments.
Find the best center for his treatment " trust but verify " The docs have hundreds of patients you have one. Read the reports keep asking questions.
My husband was diagnosed with G9 at age 53 with mets in lymph and his ribs.
He just turned 59 with an undetectable PSA and no further spread. Our kids are now teenagers and he is doing great.
The key for us was getting in as fast as possible with a medical team who is on the cutting edge of the research. For us, that was at Johns Hopkins in Baltimore. They run a multi specialty clinic specific to prostate cancer and we have had excellent care from the doctors there.
His doctor said his recommendation was to hit it hard and not let up. So, he started ADT and Zytiga immediately. Once the PSA began to drop after about 6 months, he did radiation. Then his PSA continued to drop and has stayed low. He is still on Zytiga and ADT and is basically in remission. He has a PSA test and meets with his oncologist every 3 months.
So, my number one recommendation is to find a rockstar medical team and focus on health. If he isn’t exercising, get him moving.
I’d also recommend therapy for you both if you can. It is a lot to process emotionally and if he is on ADT, his moods and thoughts will be all over the place!
My husband’s moods have evened out over the years, but the first two years were rougher for him with lots of ups and downs.
Another recommendation is to do the research yourselves and understand the disease and what else you can do to help lessen side effects and make the meds work better. Maintaining overall health is important!
Anyway, good luck to you both and stay strong together!!
I respectfully but totally disagree if the cancer spread is localized only to lymph nodes and some of vesicles. I am a Gleason 9 stage 4 locally metastatic prostate cancer patient who underwent prostatectomy this year to remove the prostate in lymph nodes, went through 35 sessions of IMRT, and am on first and second generation ADT. All the tests I’ve had including the decipher test indicate that the likelihood of me being in remission for 5 to 10 years is 90% once I finish ADT. There is hope so unless you’re a medical doctor that can treat her husband‘s prostate cancer don’t destroy this woman’s hope.
Read my profile to see what I’ve done over the past 10+ years, I was dx right around your husband’s age, Stage 4 Gleason 9, I’m still here. IMO it’s time to move away from uro to an oncologist that specializes in prostate cancer, not a general oncologist, someone who is familiar with the latest treatments and has a lot of experience treating PCa. For me a specialist made a big difference.
And don’t forget the power of prayer, it works, it really does.
I am so sorry for your situation and your husband‘s health. Respectfully, one of the problems with these forums is that a number of men who mean very well share opinions that are based only on their own experience and should not to be recommending treatment options since they are not medical professionals.
I can tell you from my own experience as a Gleason 9 stage 4 metastatic prostate cancer patient with localized lymph node involvement that depending on certain factors, your husband‘s best bet for cure and long-term survival may include what my oncologist called “throwing the kitchen sink at it”. In my case, that meant starting by getting two types of genetic tests done, including the Decipher test to help determine what the best action plan would be based on the types of mutations present. Once those tests were done, they removed my prostate, seminal vesicles and all the local lymph nodes they could reach. After I recovered, I had 35 sessions of IMRT radiation and also started 18 months of ORGOVYX for first generation ADT and ZYTIGA for second generation ADT.
I am currently in remission and doing well all things considered. The decipher test indicates that as long as I complete the 18 months of ADT, the odds are in my favor that are in my favor that I should remain in remission for another 5 to 10 years at which time I can go back on ADT of some kind and pursue new treatment options that are not available now but will be available then.
if you and your husband would like to talk to me about any of this outside of this forum, please email me at RobertsLuthiery@comcast.net and we’ll set up a time to talk on the phone. I can give you recommendations of an oncologist and surgeon at one of the top cancer treatment centers in the country to talk to for a second opinion.
I have no financial interest in whatever options you pursue. I just want to help another family deal with the struggles of prostate cancer treatment.
Ditto with "throw the kitchen sink at it". I did not have surgery but 'over' treated to hopefully cure or at least add many years before the next treatments. I would also give some thought to second opinions and at least try 1st and 2nd gen ADT before assuming it won't help.
I understand what you are feeling and I’m sorry. It is very difficult. Not only are you dealing with this diagnosis but also your kids. We have 5 kids and I understand the mom-worry in addition to the medical worry. Please know there is hope.
My husband had nearly identical features to yours when he was diagnosed 7 years ago. The young age and low psa makes these situations a bit different, but definitely not uncommon once you get established with an experienced medical team.
While you will find a plethora of opinions and input on this forum, my advice would be to focus on getting an experienced metastatic prostate cancer specific team at a center of excellence. Well meaning members online speak with great authority but are often incorrect for my husband’s particular case. Your medial team with your husband’s history should be your guide to answer questions and research. That’s just been my experience.
My heart hurts for you as the beginning was the worst for me. My husband still works full time (his choice, he loves his career), enjoys the family, travels, and is very active. Yes, there have been some challenges as we opted to treat his serious disease very aggressively. However, the emotional trauma of the initial years has calmed as we’ve learned how to navigate all this. Out life is full.
Feel free to reach out privately if you’d like. I’m happy to chat!
We are in Kawartha Lakes. My husband is waiting for a trial at Princess Margaret hospital. Is that where your husband is going for treatment? It is #1 in Canada and #5 in the World.
There isn't one going on now. We have his Oncologist sending request on a regular basis. As soon as one is available they let us know if my husband will be accepted.
so sorry to hear about your husband’s PC. Which is your PC now too…
My husband was diagnosed in May of 2019 stage 4 spread to distant lymph nodes (out of pelvis)
He did chemo, including carboplatin, because he was found to have a Braca mutation. He also did radiation and hormone therapy (lupron and abiraterone)
He’s been off medication for 2 years this coming May BUT
His PSA is rising again so odds of more treatment are increasing for him (us)
I was devastated the first year or so. My husband’s dad had died from PC so I was incapable of illusions about its course in some people.
It gets better. Not because we control what happens but because we adjust to the roller coaster of treatment (things work and it’s high and higher and things don’t work and we sink)
We move towards acceptance with time. My husband’s PC didn’t respond well to hormone treatment or first line chemo. And here we are, almost 6 years later, because it responded well to other treatments, but I was terrified when his PSA rose as he did initial treatment!
I joke to he and his oncologist now, that I’m not dating, YET!
Please keep reaching out. There are treatments that work really well, remission is real, and it’s not uncommon with PC. Stay in the moment as much as you are able. The over-thinking and fear-of-the-future Sabotages quality of life today.
I understand how you feel because I’ve been there. I was diagnosed at 53 as well, but I had over 15 bone metastases throughout my body even though my PSA was only 10. My children were in their early teens and I never thought I’d see them graduate from high school.
After 5 years, I’m in remission with undetectable PSA. I’m healthy and I’ve never had any severe side effects from treatment. Not only will I see my kids graduate from high school, I’ll see them graduate from college as well.
I realize that I have been very blessed with my results, but your husband could be as well. He could even be cured. Never give up.
I know many on this site have strong opinions about various treatments. My advice is this: Get treated at a major cancer center. I am treated at MD Anderson, but there are several other terrific centers that may be closer to you. After that, the best thing your husband can do is to keep healthy by exercising and following a good diet. Jesus is a powerful ally. If you seek him you will find strength and courage. I hope you and your husband find both. Celebrate Christmas with your kids knowing that none of us have an expiration date and there are many who have had miraculous results.
Not sure of your location, but Neil Desai, RO, at UTSW in Dallas is absolutely top notch. I am a Gleason 9/10, 2-1/2 years cancer free following my participation in his clinical trial. 214-645-8525
my husband was also diagnosed with Stage 4 metastatic prostate cancer when he was 53. His Gleason score was 8. That was 14 years ago!! Praise God🙏🏻. He did not have surgery, did radiation and ADT. Then immunotherapy . Currently we are going to Austria for LU-177. We know 2 other men with Mets who went for this and were cancer-free for 5 years. There’s always hope❤️✝️🙏🏻
I was diagnosed with advanced aggressive disease at 53 as well, with Gleason 9 and multiple bone Mets in my spine and hips. However my PSA was extremely high. 318 at diagnosis and got 796 at one point. I’m currently at PSA 6.6 and having no problems almost 3 years later. I am only treating with hormone therapy (Lupron and Casidex) and diet. The cancer industry’s goal is to scare the crap out of you and they are good at it. Do your own research and do what is right for you. Draw close to God and He will draw near to you!
Others have given their thoughts, not sure why the urologist and radiologist would use the term "curative.." While with the advances in imaging and treatments since I was diagnosed in 2014 at the age of 58 have been exponential, mine is a "manageable" prostate cancer, my medical team has not used curative in our discussions. My clinical data - GS 8, GG4, 18 months to BCR after a very "successful" surgery, PSADT and PSAV, generally put me into a high-risk category.
I have passed the 10 year point, roughly three years on treatment, the other seven plus off . Both daughters have graduated from high school and college and gone on to lead successful lives. Those 10 years have been filled with birthdays, anniversaries, vacations, holidays....
I have been fortunate, no involvement of organs or bones, why, I don't know.
Your husband's clinical data is indicative of a high-risk prostate cancer and consideration of aggressive treatment is certainly a discussion to have with his medical team - urologist, radiologist and oncologist, also, consider other specialists such as a cardiologist.
You will likely find divergent literature and views on removing the prostate. That is indicative of a plethora of choices when deciding on treatment.
Medical researchers have brought a vast array of advances in imaging and treatment, that's the good news. When I said plethora, that's perhaps not the good news since reaching a consensus on which treatment, when, for how long is difficult.
Attached is my clinical history. I'll also attach an article about the changes in the treatment landscape once I figure out how. There are other resources - the NCCN Guidelines, the Prostate Cancer Foundation, Prostate Cancer Research Institute, all have valuable resources to inform you and your husband.
All of understand the "panic" associated with our diagnosis and recurrence(s). Yet, onice the dust settles, we have come to deal with this, you can too!
Your husband has an amazing GP. My PCP was dismissive of a PSA of 11.5, essentially telling me to ignore it as my overall health was excellent. All the while I had a very aggressive Gleason 9 tumor in my prostate. After we pressed, he reluctantly referred me to the urologist and that's how we found out.
So for me the process started: tests, consultations, MRIs, a biopsy, a PSMA, the pre-surgical MRI with the endorectal coil in my butt, and then finally the robot assisted radical prostatectomy 2 days later.
The surgery was 2 weeks ago. Having a catherter was very difficult. Now I'm dealing with wearing diapers and pads for who knows how long. And things aren't the same down there obviously. I'm not talking sexually, which is a given. Doing both #1 and #2 aren't the same. And these things may be permanent.
Yesterday we got the pathology report from the surgery indicating no spread to the lymph nodes or anywhere else and negative margins. All in all the best news possible.
Like your husband, I'm in my 50s and have 3 kids even younger than yours. It turns out that what I fear infinitely more than dying is leaving my kids without a father. That's what motivates me to do ANYTHING to stay alive as long as I can, at least until they're in their 20s. I'm already planning for the cancer's recurrence and hoping newer generations of meds are available then. Unfortunately, Gleason 9 and 10 don't always respond well to hormone treatments. If you deprive the cells of testosterone they create their own. That's how you get castration resistance. I believe there are some meds that address this now. Hopefully better meds are in the pipeline.
You've already seen how sneaky these high Gleasons are, essentially trying to kill us while not producing enough PSA to make anyone suspicious. I'm sure most of my PSA didn't come from the cancer itself, but from BPH and prostatitis.
I want to wish you and your family all the luck in the world. Be very thankful to your GP. Local spread is better than full spread or a spread to organs. With some men with our kind of potentially lethal cancers, when they finally find out due to pain or discomfort, they only have a few months to live.
Our GP is so amazing it was her that ordered the mri after the urologist fobbed my husband off and told him to see a gastro for his intense pelvic pain and weight loss. They can’t understand the pain part - also very unusual since the spread is contained - perhaps my husband just has a really sensitive body.
His Ct and mri were clear other than the prostate and seminal vesicles. Two lymph nodes were enlarged.
Did you have psma pet? Not recommended for my husband.
I’m so happy to hear about your margins!! Good luck to you and I’ll be following your story.
Last comment, promise, likely yours is a long journey. Over my time, through the school of hard knocks, I have developed "rules" for myself as the patient and my medical team,
For my medical team:.
1. Know your stuff. As part of my medical team, you must have a thorough knowledge of my cancer and of the latest developments in research and be ready to formulate a plan of attack. If what I ask about based on my research is not familiar with you, then admit it, say you will look into it and discuss on my next consult. Better yet, call me!
2. Do your homework. I expect you to have reviewed my medical records prior to my appointment, talked with other doctors I have seen that day.... You’ve looked at my x-rays; you have my pathology report, labs. I can tell when you're looking at my clinical data from tests for the first time!
3. Respect my point of view. Listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I’m sure you can help me to feel confident about the plan you and I have shaped for me.
4. Don’t close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Rid yourself of the temptation to make your day easier by delivering perfunctory care.
5. When it’s decision time, please decide! Care for me with a dogged determination to get me healthy.
6. Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.
7. Please talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions?
And yes, the front desk is key, sets the tone, pleasant, efficient on check-in and scheduling on the way out...a kind word, smile...and don't call me "honey." You have my records; I am ok with you calling me by my first name or Mr. ____
Rule for me
1. Once I make an informed decision and carry it out, I never look back. Well, that is not entirely true, I look for lessons learned from that decision. The path is always forward: I continue to learn about PCa and always look ahead. What counts is today and what lies in the future. Kind of like the "sunk cost" you learn about in business school. Yesterday is gone, so forget it, well, learn from it.
2. I educate myself as completely as possible and take the time I need. I always know that no matter the outcome of a particular choice, I made the best possible decision. That knowledge that I have thought my decisions through carefully is what is really important—and may be more important than the decision itself.
3. I am in charge, not my doctor. They need to be consulted, and their opinions and ideas should carry weight as I make my decisions. But I never forget it is my life, my today, and my future. I have made the best possible, fully educated decision that makes sense for me, with the focus on long life.
4. Don’t Walk in Cold to an Appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself.
5. Knowledge will empower my BS detector. When my urologist and oncologist told me ADT monotherapy is what I need and did not want to talk about imagining and combining other therapies such as radiation and chemotherapy, I didn’t just have to accept their advice on faith.
6. I walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particular treatment for my cancer, my likelihood of being cured, and risk of side effects.
7. I won’t blindly accept the opinion of a non-specialist – I know that my cancer requires a team approach.
My husband has the same LOW PSA, stage four cancer. I suggest you get with the highest rates specialists you can find. If you can get on AnCan Foundatiin zoom call AND reach out to the prostate cancer research institute, they both can recommend the best specialists for your husband. This is a disease the requires doctors who specialize in Prostate Cancer - it needs to be what they do, not a part of what they do. I am happy to share more on our journey. My email is: Roslyn@C21TimGauntt.com
first of all relax. I’m stage 4 with lymph nodes involvement and am going on 7 years undetectable and living life to its fullest. It is scary but nowadays there are many amazing options to put a stop to it. If you’re a believer, talk to and put your trust in God. Beyond ADT treatment I also do many natural things that help in the battle. Take a breath, it’s going to be ok. 🙏
First of all I'm not a doctor, but I played one with my neighbor Joanie when we were 6 years old. I'm just an old guy with the Big C and just want to assure you that your dear Husband (named blank) and you will make it to see your 5 year child get a PHD from a great university in Toronto. Live every day and enjoy your family cause time flies faster than you think.
It's a good idea to update your husband's (and your) bio. You can start one by copying and pasting from some of your posts above. (It will help you and help us). Note: all information is voluntary. Thank you and keep posting!!!
BTW Where were all these members and their advice when I was dealing with my first wife, the witch?
Please consider all treatment options before acting on any one. Each has benefits and side effects. Consider finding a medical oncologist. Ask what both the short term and as importantly, the long term consequences of each treatment are.
Look at my bio. I was diagnosed many years ago and was in panic mode. I started showing my wife how to flush the water heater, turn off the outside spigots, turn off the central air and turn on the heat. I was asking every doctor I met, how long I have to live. Thankfully none of them gave me an answer. I suspect that's where you are.
When you read people telling you to relax, know their heart is in the right place but it's so hard to do when you hear those words "you have cancer".
We get it. We were all there once.
Aside from seeking multiple options from multiple providers, knowledge is power and it's the fastest way to ease your anxiety. I have spent many years educating myself at the scientific level, as best I can, to understand my disease, right down to the microscopic level.
I personally stick with standards of care (SOC) treatments and focus on treatments that are proven to work on humans with a high success rate and are already approved and in use by the medical community. I don't get caught up in studies as any treatment will require testing via clinical trials which typically take 10 years to get from study to market. You can kill anything in a petri dish.
I also avoid sites that end in dot com as they're always selling something. I ask myself, if it worked, wouldn't we all be doing it?
Yes it's true that there is no cure for our cancer, only long term treatment to prolong life and I'm proof, along with many others that those treatments work and will continue to work. Our cancer is curable only when it's found early and still within the prostate.
There are options for your husband. Please look into all of them. Take care, we are here to help.
To swwags, Great advice!!!If you don't mind what is (was) your occupation? Very thorough and precise bio. I got a kick out of how it begins as written by your doctor (or by you LOL). "Mr swwags is a 63 year old pleasant gentleman". I guess you're 67 years old now and still pleasant. My doctor's assessment of me was "Mr. john is a 66 year old pain in the ass".
Keep up the caring and informative posts. Thank you on this day of infamy...
Yeah those words were from the doc. Clearly he's only known me for 30 minutes. I'm the biggest jerk I know. I worked many jobs John but the last one I had was Program Manger in IT. I had to communicate upward to senior VP's. Had to learn how to dumb things down for them.
Birds of a feather...............I too managed a staff of programmers (main frame dinosaurs) and was a programmer/analyst and consultant for financial institutions.....I'm so old and out of it that I still refer to I.T. as D.P. Yep keeping senior management in sync with technology was bullshit mixed with politics.....As I used to say "How can I soar like an eagle when I'm surrounded by turkeys".....Keep up the good work and remember never divide by zero.
You can always divide by zero if you remember to carry the 1. I retired @ 57. Best decision I ever made for my health. I still have lunch with my old boss from time to time. He watches as my cancer ages me and I watch as his job ages him. Legacy main frame job huh? Oof, a lot of work and too much abuse I imagine. On this day of infamy, I remember my dad who joined the navy the day after the attack.
I am Gleason 9 please see my bio as I had seminal vessel involvement and pelvic lymph nodes. I am 3 . 5 years out and doing pretty well! I was 55 when diagnosed.
If he is lucky he can start on Zytiga and prednisone early enough he may go in remission for a long long period. - i also had multiple lymph nodes and seminal vesicle invasion - was a PT3b Gleason 8 (surgery in 2012) followed by Adjuvant radiation, lymph node surgery in 2015, but have been in remission since early 2017. Was on Zytiga + prednisone for 12 months. my PSA was 4.3. Try and get treatment at one of the best hospitals - not sure if u r in NYC but Memorial Sloan is a great option.
You probably should read my bio. My husband is now heading into year 21. He still receives Lupron/Eligard every 6 months. His cancer remains in check with a PSA of zero.
Ma’am, I feel your pain and your fear. When I saw the biopsy report in which a Gleason was unreported it was devastating. The low PSA cancers tend to be extremely aggressive but my personal experience with multiple lymph nodes and a lesion on my pelvis is the cancers have responded well to Zytigs and 2.5 mg of Prednisone. The cancers once five inches in diameter are like dime size for my lymph nodes. When a fellow doctor, not my oncologist, walked me thru the initial CT scan, man I thought it sure looked like I was a goner. I flunked docetaxel getting pneumonia after only one round. While I get the same exhaustion as everyone else I am out racing my doctors and palliative care nurse. I have been going at this for two years. So begin exercise immediately.
Your husbands low lymph node involvement seems like the potential for a cure. I suggest y’all watch some of the videos by Process Cancer Research Institute. They go for the most aggressive treatment possible, My recollection is that their statistics showed as much as a 50 percent cure for patients with low lymph node involvement,
Your husband needs chemo and lupron and possibly zytiga to have the best shot to heads toward taking the turf back from the cancers, That’s referred to as triplet therapy,
Most of all put your faith in God and if you have friends who are fellow believers, send out an update every one to two weeks. I have about 50 friends I send an update out to. These are your encouragers. Think positive!
I was slotted to be in palliative care by my current oncologist who doesn’t believe in a cure . The naysayers on this blog assume that my label says I can’t be cured. We will find out soon. When your husband is stabilized, find an oncologist, seek out the very best who will support your belief that he can be cured if your current one does not. Never give up!
Any questions message me, I’m not as learned as the smart ones into all the studies and technical papers out there, God bless you, your husband and your family in your quest for a cure. Forget the word journey that’s used by those who think you are terminal.
I’ve been at this for over 7 years now. Diagnosed at age 58 - Gleason 9 with mets in my hip/pelvis bone. My 4 kids are older than yours. When I was diagnosed, one was grown and married with kids of her own, two were seniors in HS (not twins, one is adopted) and one was a sophomore. One of my biggest concerns was to at least see my youngest in college before I departed. I was convinced I only had a couple of years. Now my youngest has graduated from college and is in grad school. I’m now hoping to see my grandchildren in college.
You can read the details of my treatment in my profile. My treatment has been ADT and one round of RT (20 sessions). My cancer is under control. Not gone but well under control. I have no symptoms besides the SEs from the ADT. I realize things can take a turn for the worse at any time but I stay optimistic. I actually look to the future. With cancer it’s easy to become obsessed and stuck, and if that happens one misses a lot of life.
My advice is to first take a breath. It’s all a terrible shock but all is not lost.
Find a good medical team that you and your husband likes and trusts - a good MO and RO, if at some point he needs RT. At this point the MO is the primary caregiver. The urologist steps back. My urologist who dx’d me immediately passed me to my MO. I still see him for more general urological health. Oncologist’s are experts in cancer. It is their primary focus. You want that.
Accept that things have fundamentally changed but also realize that life goes on, for your husband, for you, and for your family. Cancer shouldn’t define anyone’s life. That’s not easy sometimes but it’s really important.
my advice would be don’t get ahead of yourself. You don’t even know if it is advanced yet, so the posts on here may not reflect your situation at all.
He should at least get a PSMA PET scan to determine if it has spread (metastasised) and if it has, to what extent.
If it’s any comfort, I was diagnosed 12 years ago with Gleason 9, with Mets to my spine. I’ve done a lot of ADT, plus EBRT (pelvic radiation), and stereotactic radiation to spots as they appear. Also chemotherapy 7 years ago
Just came off a 7 year break from ADT and started darolutamide (Nubeqa).
Some people are long term survivors, even with advanced disease, why shouldn’t it be you?
I'm just reading this thread, so sorry for the Dx. You can read my profile, I too am G9, 3 local lymph mets and my PSA was 3.5. My local team and the head MO at MD Anderson were satisfied with the results of my PSMA. I have completed ADT and am now in the watchful waiting phase. Both teams are going for a cure as the final result.
it is about you too. Your life as you know, it is going to change sometimes bad sometimes good you feel like there’s a lot on your plate and there will be. So you need to cry or scream go do it Turn around and say no way will this C destroy our joy❤️. Every person here has felt exactly like you were do now, Believe me, you’re the best place for support and answers. I started this journey with my husband. six years ago. and we’re still here.🙏❤️
I was 54 when diagnosed as Gleason 10, stage 4 PC with max PSA of 2 this last April. I had spread to lymph nodes and possible micro Mets to pelvis and spine (didn’t know that until after several months of treatment when sclerotic lesions were found in those areas that are not currently cancerous).
I work for a Pharma company in this space so immediately knew what this all meant. My wife and I were devastated and shocked.
We decided to go see Dr George at Duke to make sure we got the best care (we live in NC).
We did genetic testing, but it was negative for anything out of the ordinary for PC that we could target with immunotherapy.
We decided against RP due to the spread.
I immediately went on Orgovyx and Xtandi with no idea if my cancer would respond based on my low PSA. Dr George said based on my profile to forget everything I knew about PC at our first visit.
Fortunately my cancer responded very quickly to treatment and PSA was at .1 after only 6 weeks of treatment and tumors had shrunk or in some lymph nodes completely disappeared.
After 6 months in therapy, we did a course of low dose IMRT to prostate bed. Minimal side effects from that or my doublet therapy other than usual ADT related ones.
PSA currently is .001 and holding and recent FDG PET (didn’t do PMSA due to virtually undetectable PSA) showed I’m currently “cancer free”. We have no illusions about being cured as we know this beast will come back.
Plan is to closely monitor PSA with periodic scans and continue doublet therapy until I’ve been on it for 18 months.
I also improved my diet and exercise regimen. Luckily have been able to keep from gaining weight to date and my CV health still good. This is a huge part of treatment. I still work in a high pressure job, but have to prioritize me over work!
Dr George is encouraged and many new treatments being studied all the time. It’s delay and hold this at bay until something potentially curative is found.
Our 3 boys are all in their 20’s, but it still hits hard. We have good and bad days, but try to live by “take it one step at a time” and not get too stressed playing the “what if” game.
Like your husband I went to Dr. due to extreme bone pain. I'm Gleason 9 with extensive bone-mets, diagnosed in Sept 2024. I'm responding well to triplet-therapy (ADT, Androgen Receptor Blocker Abiraterone, and chemo Docetaxel). No Surgery yet my PSA has decreased from 56 to 0.11!! I'm surprised and grateful. Leave the door open to HOPE for life extension for him too. BTW I was too sick for two months so chemo was delayed til my platelets recovered. So I was getting DOUBLET for two months and that alleviated my pain and then the third month I received a 20% reduced-dose of docetaxel.
I was really scared like you when they said I wasn't a candidate for surgery nor targeted radiation of prostate either. Cause it felt like we weren't doing enough, but doublet or triplet therapy is research backed treatment. Ask if you can record your Oncologist appts. as you may need to relisten more than once. Write a list of questions for your Oncologist in a notebook.
Its so much new info to hear and absorb. Two Cancer Centers confirmed this and more places that we have researched online too. Patience is hard especially when you are scared. My wife and I also send you a hug.
Manage each symptom and follow Dr. directions if they want you to take high dose calcium for example: Here's a link to info on getting enough calcium healthunlocked.com/advanced...
Don't believe that surgery wouldn't be beneficial and or radiation wouldn't be beneficial.
So I too had extra prosthetic spread and seminal invasion. PSA around 60, post RP PSA of 2.3. Grade 4/3. 7 with some grade 5.
I believe not treating the prostate directly is giving up on potentially cure or out living PC.
My top surgeon at MD Anderson said he would take out my prostate regardless if he found spread to lymph nodes. This was to prevent any future spread of PC from the prostate. He didn't find any.
Having my prostate removed was a long process to recovery and becoming free of incontinence.
Radiation was expected after regaining continence. I had pelvic bed and whole pelvic IMRT. PSMA scans showed 5 known PC pelvic soft tissue spots prior to radiation. They were all killed
I went on two years Lupron. My nadar was <0.01 during Lupron.
PSMA scan in 2023 showed 1 pelvic lymph node I radiated it with SBRT.
PSMA scan in 2024 showed another lymph node I had SBRT to that in Aug 2024.
Subsequent scans show no new cancer, and dying PC at the lymph nodes. SUV vales dropping, PSA dropping. 0.6
My plan has been to go for best chance to live a full life with chance for cure. Live as long as possible without ADT treatment. Always scan detect and kill.
My success to date has been very very encouraging allowing me to remain off ADT enjoying a normal as possible life.
Where is the pain coming from, bone? That may indicate more advanced spread than I have had.
I went down the rabbit hole reading all the responses to your post a few nights ago. I know I am a few days late, but I felt compelled to follow-up.
I am a new member to this group, as I now am in the "PSA recurrence club." So hello everyone - I will fill out my profile details at some point.
At 47 in 2022, I travelled for a second opinion at one of the well-known, major US cancer centers - they told me metastatic cancer, Gleason 9 or 10 (experts could not agree), statistics say no to removing prostate, sign me up for a clinical trial that will basically send me down the bad drug after bad drug program and they will monitor me to see if I outlast the expected 56 months of life. No hope.
I had RP in my city in June 2022 with positive margins and a positive lymph node (PSA around 5 at surgery and Gleason 9 pathology), been living a full life until I joined the recurrence club in September 2024. I mean no issues post-surgery.
Lots of good comments here. My encouragement to you:
- Everyone is going to be cancer expert. I mean everyone. Qualified or not. I have no patience with these folks.
- Use a tool, such as vitawaves.org, to update my family and friends. I get tired of retelling everything and just talking about it.
- Everyone, even the trained medical experts, have biases. You have to be your own best advocate. This becomes your second job. Take ownership of your treatment plan. Challenge them. Commit to it. Have hope. I found it when I was told otherwise.
- You are going to be in waiting rooms full of people and doctors running late - get a strategy to deal with it. These waiting rooms are full all day every day.
- I am glad I found this group, as 99% of everyone does not understand the 'Advanced Prostate Cancer' club. Don't be surprised at most people minimizing the diagnosis as, "It's just prostate cancer." Everyone just doesn't get it.
I would second the closing paragraph posted by ArchimedesTex.
We are young, and you will find that because many men ahead of us endured much agony, that we still have many good, fun years ahead of us.
I have become a much better husband, friend, and manager/leader. My hope is that your family will come to experience the positives amongst all the challenges.
Sharing, knowing others will disagree and may even raise some ire. After ten years with this beast, four treatments on two continents, many consultations, I have a dislike for such emotional comments as curable, not curable, low/high risk, etc. The reality is we just do not have the means to determine how far this beast has spread, how easy or how hard it will be to get it all, if this is at all possible; so IMO at the individual level some to much of this is a guess.
Nine years ago, even thought I accepted I likely faced local spread, I went for surgery. If I had a do-over I would again have RP but with extended pelvic lymph node surgery (ePLND) using the frozen section pathology method. This is not common in the US and the Mayo Clinic may be one of the few top centers offering it. I had salvage ePLND as my third treatment, nearly seven years ago, and some would consider my current PSA 'undetectable', and this is without chemo and ADT (which has been a key intent of mine since diagnosis). I hope this helps. All the best to your family!
I am sorry to hear of your husband’s dx. In some ways, it reminds me of my own dx more than 12 years ago. The dx was a big blow and of course, the first thing I thought about was my 3 boys. I was dx at age 54 with 3 young boys- the oldest was 9 yrs old. Now, my oldest son will be graduating college this coming May and my youngest will be starting his college journey.
My PSA was in the mid- 30s at dx and likely the mid 40s before my treatment began. My Gleason was a 9. I had about 4 tumors in my bones and one “dirty” lymph node, that was removed (along with 30+ others) when my prostate was removed. The prostate surgery was “experimental” and unlikely to be beneficial but I went ahead with it anyway. It was not the standard of care then and I don’t believe it is the SOC today either. I am unable to offer any info regarding a possible cure but can tell you that there are more than a a few of us who have responded pretty well to treatment. I am still on my original regimen of Lupron and Abiraterone, although I believe if I was dx today, I would probably also be on a chemo drug. There are side effects (SE) from my treatment but nothing I can’t handle for another 12 years or longer, if I end up being so fortunate.
I am hoping for the best for your husband, you and your family.
I'm amazed at how many people responded to your post. I think the most I have ever seen. I'm sure part of it was because you mentioned your young children. Figuring out how to help them get along while your husband is struggling with reality is a challenge. My kids were in college. I waited until after their tests and they came home for summer break before I told them. It bothered both. Thankfully their school offered therapist counselling. They ended up seeing a psychiatrist and getting Adderall. My daughter was in nursing and had to quit researching the disease. The longer I live, perhaps they can deal with better.
I read most of the posts. Several mentioned some of these ideas. My comments:
1. You and your husband must be your own patient advocate. Not all doctors know the latest and greatest therapy. Don't hesitate to get 2nd and 3rd opinions. In one case I got 4 opinions that agreed on therapy going forward. Being an engineer I disagreed with their analysis but accepted. What do I know?
2. Prostate cancer is the number one cancer killer of men that don't smoke. Which means there are literally millions, worldwide, that have it and an equal number of researchers working on a solution. Time will solve this problem.
3. I have told myself that I will live 5 years until the next great innovation. Then I will live 5 more and so on. I'm on year 4.
4. If you don't exercise, start. Once you do, don't stop. Suggest doing something together with your husband. My wife always has too many things to do, so I bike with a friend. Lifting weights is important. Go slow. Exercise helps with energy, bone strength and heart health. Several of the drugs that your husband will eventually take fight cancer but also have side affects that you can't overlook.
5. Join the crowd. We are with you and you have a lot of supporters. We will get through this until something else takes us out.
Easy to say don't feel hopeless. I see Dr Sartor next week. He's never given me a prognosis so I can plan things. I just keep living and dealing with whatever issue presents itself. See my comment below. Get that PSMA scan. If there are hot spots consider radiation to kill them before they grow anymore.
Ps: this applies to my number one comment above. My PSA before getting my first PSMA PET scan was 0.06. You read that right, 0.06. I had to pay for my first scan and then work to get insurance to reimburse me. This was back in the day when PSMA scans were just starting to be a thing. The scan showed many problem areas. So in this case your doctor’s idea that 2. 1 PSA is too low for PSMA scan is flat wrong.
Please educate yourself as much as you can to insure you make the right choices. That was what I did and it has kept.me alive for 14 years. Quality of life is key and it can be achieved with everything out there.
I have Isup5 gleason9 widely metastatic Pca.Diagnosed in august 2023 when psa was 2500 and in a lot of pain. Started Firmagon asap and then docetaxel(chemo)and new drug Nubeqa(daromutamide).So triplet therapy. In august 2024 no pain and psa 0,4.Going to ask, next friday (january 2025) , to change Firmagon injection to Orgovyx(oral adt).So theres lot of hope when in metastatic pca.Many ,many years left to live full life. Dont wait .Live and love.🙏❤️
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Dad diagnosed with advanced PC, Gleason 4+5. Feeling helpless
Looking for advice for my newly diagnosed dad
New and in somewhat of denial
Treatment Confusion
