hi everyone , Finally got results in and we are devastated .
Gleason score of 9, and PSMA scan showed that it had spread to lymph nodes a line from prostate to neck . not in any other organs ie lungs bladder kidneys etc and he has been put on erleada and then 3 monthly injections of zoladex .is this right ? systemic treatment they are calling it . whats next for us is this it for him .anyone on here with the same thing .they only saw 2 enlarged lymph nodes on ct and MRI and a couple of spots on t10 and T12 vertebrae which they sid were small . i would really appreciate help i have no idea what questions to ask and truth be told am scared of the answers they are saying not curable treatable .also have said no radiation at the minute .?
thanks carol
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There are many here to guide you and your husband Carol. Sending healing love. Have you gotten a second or 3rd opinion? Something to think about. Best wishes and prayers for both of you.
Carol, I am in my early stages in my journey and cant speak to your condition exactly, BUT can attest to the fact that you need to do two things; 1) study the literature on the condition you are facing and 2) develop a dialog with the physician you ultimately choose to treat your disease. Take a listen to this podcast starting at min 3:03; I cant speak to the rest of the podcast but this patients recommendations are spot on youtube.com....look for the Title; Changing the Treatment Story With Hormonal Therapy in Prostate Cancer...
...you need to be 'boned up' on what your options are before you see a Doctor and you need to participate in the discussion with that Doctor as to how to proceed...this patient waited until the latter stages of his disease before he did that and regretted it; I think he is correct...I tried to establish this relationship with the first and only Doctor I found / choose to use and hit a brick wall...
If I could segway on what this patient suggests, it would be to a) do the research and know what your options are, then b) interview (and I use that term specifically) at least 3 Doctors and find one who will listen to you, not do what you want (which would be nuts), but really listen to your point of view, your concerns and what you would want him to consider going forward. You will know you have found the right Doctor if he can sit and explain why or why not to consider what you have addressed...you should seek other council if he gets frosty and dismissive...this was my experience
...elsewhere in this thread someone identified this phenom...Doctors want to work in their comfort zone...what you want them to do is work in a 'grey zone,' where they are not familiar...in the end its your call; its your cancer! But, you should not in my opinion go with the first Doctor you find...get a 2d and 3d opinion. Before that, know what you know and what you do not know, before you sit with them...then take notes! I had to rely on my notes many times to help me remember what was said and why I choose to proceed as I did...hope this helps...
Wish I'd had this advice way back in the very beginning. Informative, practical and wise... if available early could save many a lot of heartache and worry and give a clear direction towards making good choices. At the beginning you don't realise that once you start on the treadmill it's not always easy to get off and take another route.
This is excellent advice, Carol. The situation sounds exactly like mine, and this is what I did as well. The fear and anxiety will start to dissipate when you take Sun Tzu’s advice and “know your enemy”.
I definitely encourage multiple opinions before launching into intensive treatment. In addition to a urologist be sure to talk with a medical oncologist and a radiation oncologist. If possible get one set of opinions from at least two different major cancer centers. However don’t wait to do anything before all it that, starting ADT now would be good and adjustments to diet and exercise. It’s just good to get the multiple opinions before committing to a chemo or surgery strategy. I’m not a doctor, but with lymph nodes involvement, it seems like radiation and chemo are a likely course of action. Stay strong
He was previously at Umc in Tucson Az . They changed to banner . He moved up to phx..we consider Scottsdale Phoenix . Mayo should offer top care . We all know the feeling of the bad dx. Hang in there . Together you’ll get down the road ..love and compassion rules the day . Peace to you all .✌️
Yes, up front combinational treatments is the strategy, my extreme diagnosis of PSA 1000+ with extensive tumors throughout the pelvic area is currently controlled by Lupron, Zytiga and Docetaxel (Chemo) at the onset.
My PSA went to <0.02 for 18 months, now I'm on treatment vacation since 11/2020, as of 06/25/21 PSA 0.18, not a concern since still have a prostate. Obviously getting tested monthly now, cancer is extremely stubborn...
Yes indeed! At this stage you need a specialist prostate cancer oncologist that you can talk to and trust in judgement. Erleada and zolodex are a good start but they are basically stopping the cancer from progressing while you figure out a plan. Remember that medical oncologists and radiologists tend to talk their own book - give priority to their own specialisations. From the sound of it there are too many mets to qualify for stereotactic radiation and it is likely there are more too small to show up yet. On top of that, there would seem from your description that there are many lymph node mets and if you knock out too many of these there can be effects. So yes, no radiation. Maybe at a later stage and carefully directed at bone mets. For the moment it must be systemic (ie whole of body) treatment.
Where you go from here depends on how well and long the erleada (apalutamide) and zolodex last and to a lesser extent any genetic information. (consider getting a blood germline test) He will be on zolodex or other androgen deprivation therapy indefinitely for now.
There are many options but they all fail at some time and you move on to something else. Staging treatments is important. Chemo done early when young can be effective.
Yes it is incurable. But with modern treatments it becoming more like a chronic disease and the aim is to manage it until you die of old age or pleasure. I was in my early 50s when first diagnosed in 2002. So we can kick this can down the road a fair bit now.
Make full use of this forum and use the search function - there is a lot of info in there. Feel free to ask about the treatments (and the worries). We have some knowledgeable and sympathetic folk here. The important thing is to live life as we go. Stay attentive to any other health problems. Exercise is good.
Thank you so much for your answer it means so much ,they want to send his tissue and blood to America to have it analysed for BRCA and something else my mind has gone blank . the first oncologist said the same we now treat it like a chronic disease so i am glad you said that .the fact you have battled this since 2002 gives me hope , my husband john is the most positive man i know we had the awful task of telling our 6 children yesterday and his mum and dad and his words were "at least i won't die from this im on treatment now ".that worries me im not sure if he is just being positive or burying his head in the sand !either way i want him to remain positive .was your prostate cancer metastatic also . thank you once again .
His is a steady realistic outlook with some optimism . He’s has you and the family to live for . At times I think that we’ve all felt like the ostrich . He will be here many years to love you all🙏
If you get him state of the art treatment, find himA top notch oncologist that specializes in prostate cancer, and he keeps his weight down, and exercises (especially weight training) he can live. Ling time with this disease.
thank you so much , yes im really trying to we have seen 2 urologists not great ones to be honest then a great oncologist from the uk who we really liked he was upbeat and said we treat it like a chronic illness which i could handle better than the c word .he worked in colchester in uk and specialises in prostate cancer but here in dubai you have to have a licence for everything he did all treatments in uk ie surgical , medical , systemic but here DUBAI you have to have a licence for each one . he has just applied for his licence for systemic but hasn't recieved it yet so rather than delay treatment till he gets it he handed us over to a lovely systemic oncologist who is absolutely top of her field but as nice as she is i don't feel as confident with her . its such a shame .im hoping once his systemic licence comes through we can go back to him .
Carol...When Doctors utter the word "incurable" ..it certainly scares us in the beginning. But, once you know that men with mets to lymph nodes and bones can still live anywhere from 2 years to 30 years..that knowledge reduces the fear.Systemic treatment means blocking testosterone (androgens) almost completely by drugs like Zoladex. Erleada is added to block effect of remaining Androgens on prostate by blocking Androgen Receptor. This is standard treatment and and works in almost every men. However, after 2 to 3 years, some men need to change treatment as this systemic treatment either stops working or works partly. But in many men, this treatment can work for a long time (5 to 10 years or more)
One way to prolong effectiveness of treatment is by switching to plant based diet, particularly adding vegetables like Cauliflower, Brocolli, Cabbage, Radishes, Mustard Greens etc. and also increasing intake of Red Onions and Garlic. Regular physical exercise is essential to control side effects of systemic treatment.
In the beginning, it comes as a shock to find out metastases....but it is not as bad as it sounds.
“Utter” is an apt description…. A tech gave me my dx ,I asked is it terminal ? Yes ,she said .. but later her boss the Uro gave me 24 months with adt and 12 with chemo which my pc specialist switched to imrt .. I knew there’s no cure as I saw on the little chart that there is no stage #5 pc …. La de da .Over six years later and I’m still here . I haven’t needed a uro for years . That’s a blessing . Take care .
omg thank you , for that short but precise message im so overwhelmed with it all being in a foreign country doesn't make it any easier and no family here at all makes it hard . im trying to find best oncologist but so many come up and when you look into them they do not always specialise in prostate cancer . but i think we have found a good hospital now . exercise is now in progress as is eating more veggies and lower calories and fats .
Search about fasting. Dr. Eric berg on youtube has very informative videos. I am on my 3rd long term fast, 4 days. After about 15 hours, glucose and glutamine are gone. No fuel for cancer. They die or starve. It does work. Greg
Hi! We all know the trauma of a prostate cancer diagnosis. Take a deep breath. This is a chronic illness and you two are on a journey.
Looks to me like you are off to a good start. And you have received a lot of good advice here. I think the best thing you can do right now is to start reading to educate yourself. I remember when I was diagnosed. My head was spinning and I had no idea what everyone was talking about. There were so many acronyms and terms (i.e.,, ADT, castration resistant, clinical trials) and I did not know what they meant. (There is a glossary of frequently used terms at the bottom of our site here that is very helpful.)
The other advice I have is to make sure your husband exercises daily. Even just walking and some light weights makes a huge difference to protect muscle mass and bone health. This makes a big difference with quality of life.
Finally, read the posts here daily. You will learn a lot. And don’t stress if you don’t understand everything everyone writes. I’ve been here 4+ years and still don’t understand many of the highly technical posts. But you and your husband will learn a lot … to allow you to become educated health advocates for him over time.
Best wishes on your journey! And please feel free to ask for advice. That’s why we are all here - to help one another.
Incurable does not mean death sentence. It doe mean he will likely be on treatment for life, but that life could be a decade or more. I celebrate the anniversary of my diagnosis by running a half marathon.
I've since received lots of bad new since then (neuroendocrine differentiation, very aggressive) but am still here almost 3 years after initial diagnosis and 18 months after the neuroendocrine bomb.
It is far from an easy journey, but there can still be some very good days, especially while the cancer is hormone sensitive. As Tall Allen suggests above per the PEACE-1 study, hit it with docetaxel chemo then a second generation anti-androgen. There are several members here who are in earlier studies involving early use of the second generation anti-androgens who have had stable disease for 7+ years. They probably will go a lot longer but the studies were started less than a decade ago so we don't know the upper limits yet, only that the mediation time to progression approaches 5 years.
Had similar Gleason score, but metastasis was limited to lymph nodes in lower pelvic area. Treatment started immediately after diagnosis: 40 radiation sessions over 8 weeks + 45 mg. Lupron (every six months). The radiation and lupron combination brought things to manageable level, that is an undetectable PSA, which has since started to rise slowly. Be happy it's only in husband's lymph nodes. In my opinion, he has a fighting chance..........I'm not a doctor, but that's been my personal experience. Good Luck!
I was shocked and depressed when my Gleason score of 4+5=9 was revealed.I was put on Firmagon, then had 39 days of EBRT and am now on Zoladex. I refused Docetaxel. My PSA had dropped to 0.01. I have started doing weights and resistance exercises for a short period every day. I take a melatonin tablet to help me sleep at night as I sometimes have hot flashes. It has been a year since I was shocked and depressed by my Gleason score. Good luck!
I had 6 cycles of Taxotere (Docetaxel), even when Lupron/Zytiga took my PSA from 1000+ to <0.02. In fact, asked my oncologist for chemo, the rationale was to sweep brewing cancer cells and catch any before mutation.
Side effects were tolerable, my taste buds was useless and inner mouth cheeks got sore. Hair started growing back after a few months, would do it again if need be.
Hair on the head? Maybe not . Body hair ,most likely. These are minor losses compared to the rest … we all suffer to different degrees..this is a fight for survival . Don’t delay ! Good luck 👍
Congrats on the first year.It was hell for most of us . I was an 8 and did the imrt also . Still on adt over six years in..Now let’s go 20 more ..QOL and staying out of the pain zone are goals . I’m not really pushing for 20 but ill shoot for five more . Of course APC is a fickcled bitch that after time always swoops back out of hiding for its dinner . Us ..so let’s stay off its plate ? Live in the moment Enjoy what we can . 👍🏋🏽♂️
Hi, I had a similar diagnosis 5 1/2 years ago Gleason score of 9 Mets to bones and lymph nodes and the outcome looked grim. But I’m still here and answering you from the gym having had a sauna and looking forward to the day. The best thing I was told was ‘there is grounds for concern but no grounds for panic’ good luck and stay positive.
Hello I did before 2016 psma pet ct /F18 in germany. they discovered that time 3 spot in my lymph nodes and i was treated for 22 times session and now i did again psma pet ct this time in sweden ,no metas... just iam controlling my psa which has been 0.99 .Recommendation from my oncology in germany to take bicalutamide 150mg until next psa control.Good luck,by the way yoou can read what i wrote about my situation from beginning.
Thank you so much for your reply . The thing is the only symptom john has had is low flow urine that’s it he is in no pain and doesn’t feel any different he is working full time we run our own business in Dubai we build sets and scenery so he builds everything with the lads etc . I think that’s why it comes as such a shock but I’m listening to every kind person that has replied . The only thing I’m struggling with here in Dubai is finding the best prostate specialist to have a second opinion with .
Over 4 years ago - I got the SAME diagnosis - except for the bone met(s).
I had a BCR (a recurrence) in the last 8 months and one small bone met was found (T5).
I had taken a 2 year treatment 'vacation', although I was advised NOT to do so.
In my mind, I wanted to see the results of the initial treatment (hoping for a cure). My primary treatment was systemic ADT and Radiation to the prostate and 'pelvic' region.
The (BCR) cancer had spread to most of the abdominal lymph nodes as well from the initial 'hot spots' - about 3 of them I was told at the time. A PSMA/PET scan was the imaging 'tool'. My PSA had risen to over 11 during my vacation.
I restarted a form ADT monotherapy (I'm NOT advising you what to do !) and within 3 months my PSA has been reduced by 99%. My doctors are elated - telling me my response is great and that I 'should' be around for a long time - something I never heard before.
Usually the doctors don't want to give 'estimates' !
I feel good and play golf at least 3 times a week - good appetite - positive attitude. I'm feeling
better - slowly but surely - almost back to 'normal'.
What is my message ?
Don't PANIC and don't pre-judge your 'fate'. There should be a lot of runway ahead of you.
Get educated and make the best decisions you can as your own best advocate.
There are many 'advances' that we'll see in the not too distant future - don't despair - there are options now and later - the fight is far from over.
It is hard NOT to be scared of the big words that many doctors throw at patients and families. "Systemic" means treating the whole body. Your doctor is proposing a medicine that blocks hormone at the cell level (zoladex) and a second that also works against the male hormone (erleada). There are plenty of easy-to-read sources (like cancer.gov/types/prostate) about prostate cancer and its treatment. That is how you educate yourselves so that you can talk to the doctor or to the second opinion doctor. Best thing I can tell you: this is not an emergency and you do not have to rush into a decision.
I’m on a similar path as well with Gleason 8, surgery to remove the prostate and then started in Lupron and Erleada after a PMSA scan showed 7 metastatic lymph nodes in the abdomen up to the diaphragm but no bone involvement and no prospect of radiation treatment as the area is too broad as well as that also limits surgical response. Advice from this site concurs with my MO, who stated that ai have a 25% chance of surviving 5 years ( which I take with a pinch of salt, although not a very big one), but right now PSA is 0.02 and Testosterone is minimal, so it’s just monitor regularly and wait to become castrate resistant in hopefully several years and then deal with what happens then. Always have hope and put your trust in good medical advice and research and enjoy life.
Hey Carol, you can click on my profile to see what I’ve done. I was diagnosed over 7 years ago. Hopefully you have a good oncologist, one who treats a lot of guys with prostate cancer and stays up to date on the current treatment regimens. I’ve found it extremely valuable to have a prostate cancer specialist on my treatment team. Learn all you can, be your own advocate, don’t be afraid to seek out a second opinion and remember the power of prayer, God works miracles and has given me direction throughout my journey.
short versions of other's replies:1 calm down and stay calm
2 get second opinions
3 see # 1
4 would say " living with " rather than " dying from " prostate cancer
5 see # 1
6 enjoy every second of every day - especially the " nothing exceptional or out of the ordinary " - how great a cup of coffee is - or a walk - or weeding the yard - when I am down there touching the weeds and smelling the earth and the vegetation I pause a second to enjoy it - it's life !
7 see # 1
8 " At some point you just have to let go of what you thought should happen and live in what is happening. "
I was in the same boat as you 5 years ago. Absolutely devastated was my reaction too. You can read my bio for the particulars but I was diagnosed with Gleason 9 PC that spread to lymph nodes throughout my pelvic and thoracic regions. My PSA was only at 8.5. After I was told it had spread, my Oncologist went on vacation for 2 weeks. OH MY. I had a panic attack because I didn't know any better. Take it from me, your husband will be fine. PC is a slow growing cancer. He is being treated with a drug similar to the one I am given - Lupron. This along with chemotherapy has made all of the PC undetectable for 5 years now.
There is hope and there are great men on this site with great advice and positive encouragement that you and your husband need. Learn as much as you can, get a second opinion, be positive and fight like hell! Your outlook will turn around. You will be in my prayers.
Fall of 2020 my Gleason came back 5+4=9 & 5+5=10 and spread to the lymph nodes outside the pelvic area. In December 2020 Oncologist started me on Eligard, then 2 treatments on the CyberKnife and 25 on the TrueBeam. The TrueBeam was for both the prostate and 4 lymph nodes just below my ribs. In March Oncologist added Zytiga. June 4th PSA was <.1, now it is a waiting game to see how long before I become resistant to the ADT.
I change my diet (scorched earth approach) plant based and I'm working on increasing my resistance workouts. I'm not sure there is solid evidence that plant based diet makes a difference in your outcome, but it helps my attitude. It gives me the feeling I have some degree of control over my life. So far my weight has gone from 195 to 160. Exercise is tough for me because of the fatigue (I am really having major fatigue issues!), but it does help. I feel much better after each exercise section.
To me, attitude is everything. The numbers I have seen with my original diagnoses, was >30% survival at 5 years. I decided that I was going to do anything in my power to be in that 30%. My current goal is 10 years, if I can beat that great, but that's the goal.
Now there is a concern about a tumor growth on my pancreas, It's always an adventure!!
I was also devastated when I found out my PSA was 800 and it had spread to the lymph nodes, organs, bones etc. Ended up on Zytiga prednisone plus vitamins cocktail. Going on 4 years, PSA undetectable. Never given a PSA test. I never heard or knew anything about one. Life changes after being diagnosed. But not so bad. Just turned 70 this week. Lost my super strength. This may not be curable but they can stop it as of now. Just think, many lung cancers are curable today I was told. Prostate cancer may be next.
Thank you paiser1 for the happy birthday. There are so many smart people on this site. I see things from my little world. Any advances at all will be picked up and posted by this great group of people. We are so fortunate to have such a smart crowd to learn from..
hi Carol ... sorry to hear that you are going-through such challenges ... consider checking-out ... envita.com and drgeo.com ... best wishes and hugs ... Nous
Lots of great support and an overwhelming amount of information to digest. Just reviewing; the BEST known approach now at this stage is the PEACE-1 approach. Which means staying on the two current hormonal meds and adding the six cycles of Docetaxel chemo up front rather than later. He will manage it as have so many here. A second thing to pursue, after the chemo is over, would be getting the Provenge immunity (T cell booster) in 3 cycles. This is proven to help in the big picture and has zero side effects for most. Key is getting insurance or Medicare to pay for it. It helps to be on a bone strengthening regimen which also helps prevent the cancer from spreading mets to bones. Either Prolia every six months or Zometa. Stay ahead of skeletal protection.
Further down the road the new treatment with Lu-PSMA (Lutetium isotope targeting the PSMA expressing cancer cells throughout the body). He will be a good candidate for this when it gets final approval, probably around the end of the year. All of the nodes seem on the PSMA scan indicate that he will be a good candidate for this later on. But for now the Docetaxel chemo should be the priority. Please discuss these with the medical oncologist and any consultants.
Wow. Lots to consider here with so many replies. To make your life simple I would consider Tall_Allen's advice carefully. Just add chemo and you are done for now. Tell husband not to worry about losing some hair and just a few other minor side effects. Don't make your husband eat broccoli if he doesn't want to. He will sulk for days. Best of wishes.
Now is not the time to be afraid; you need to be strong and brave. Don’t lose hope; there are currently many options to arrest the cancer and put it in remission. A Gleason 9 is scary but it’s still treatable. I found Dr. Patrick C. Walsh’s books very helpful. I made my list of questions for the oncologist after reading his book. Your husband should have his prostate removed followed by Docetaxel chemotherapy ASAP as well as ADT.
It is important to perform a NGS, finding out what mutations have occured. Additionally what mutational signature the cancer has. Based on that the MD can make the right desicions.
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Need advice - radiation to inguinal lymph nodes and rib
Scan Results and Treatment Begins 
Darolutamide and scan question (2nd UPDATE 1/15/22) RESULTS of Pylarify scan Anyone have any thoughts or advice? Questions we should ask?
***20 Months scans are in ***
Update: results of a recent PSMA PETscan
