I just got diagnosis last week of prostrate cancer. My psa was 5.25. Had slight blood in pee sometimes. Major constipation in April 25. Went to er. They saw a 1.9 cm nodule on right lung.
got biopsy. Cancer in 6 samples. One was Gleason 9. Another showed intraductal component.
I always said if I had prostrate cancer just take it out.
now it’s too late. I am in tears. I always positive and now no chance.
Pet scan shows no advance onto bones or liver etc.
Now shows three lymph nodes in lungs. The 1.9 cm has grown to 3.2 cm. The other is the same. Another one .06 cm has shown up.
This has happened since the 04/24 scan.
is there any positive news here. Chances I can beat it better that has not gone into my bones and pelvic region?
or does not matter at this point?
seems I could stop 1. the spreading from the lymph
2. take out prostate
I already sat back enough. I fell so ashamed this has happened and I not stop it earlier.
anyone with positive thoughts that may help me?
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Cp014
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BTW, you posted twice on the forum. First, stay calm. I know it is hard, but panicking will effect the choices you make. Find a good MO and start planning... There are plenty of folks on this forum who are thriving with stage 4 for a long time. You got this!
If you look over to the right side of the page, under pinned posts, you the abbreviation list. Unfortunately these will all become very familiar to you.
First, ask for a genetic test, BRCA2 sometimes goes to the lungs. Firmagon and Nubeqa will knock your mets out, it did for me. Hopefully, the genetic test can be done quickly to satisfy your stress. If no genetic mutation, they should add chemo too. If there is a genetic mutation, no chem or radiation for now. You will be fine.
Great idea! I would get both germline (through saliva. I used color and was super easy) and somatic on the biopsy sample. Both genetic tests tell a different story.
Do you get a genetic test on that indication? In my country you have to fill some criterias, like diagnose before 55 and family members with cancer. I had a test since my dad was diagnosed early, had aggressive cancer and his father died from it, but lung metastases was not an indication, he had them too. Maybe it's different in other countries. Anyway, they didn't test him before he died, I don't know why, the criteria were there from day one. Since PC share some of the genes with breast cancer I got tested, and when they first test, they test for 57 different genes from many types of cancer, but only the ones who can be prevented with tests etc. Didn't have any, but if you get the test, and you have one of the genes, have in mind that your relatives can ask for a test too.
CP 104 I DID THE JOE TIPPENS PROTACOL HAD STAGE FOUR PRSTATE CANCER AND SPREAD TO THE BONES MY PSA WAS 143 AN HAD A9 ON THE GLEASON TOOK THE FENDBENDAZOLE AND THREE MONTHS LATER PSA WAS 26. FOR THE LAST FOUR MONTHS HAS BEEN ZERO WITH NO SIDE EFFECTS. DID HAVE RADIATON FOR THE CANCER ON THE BONES CANCER FREE IN LESS THAN FOUR MONTHS ON THE JOE TIPPENS PROTOCOL. CALL TO HERE MY STORY. WOULD LOVE TO PAY IT FORWARD.512-586-3161
I don't know what TXO stands for. You wrote that you would go to a bone scan next week. If you had a prostate specific PSMA-PET then you, probably, wouldn't need to go to a bone scan. But bone scan is still useful because clinical trials are based on number of metastases on "conventional imaging" which is bone scan, CT scan, MRI.
You may know which type of PET scan it was based on the patient preparation before the scan:
FDG-PET patient preparation: For 24 hours before the scan, avoid sugar intake and follow a low-carbohydrate diet. For 6 hours before the scan, avoid foods and only drink water.
PSMA-PET patient preparation: You can eat as usual.
FDG-PET scan not only shows any kind of cancer but also infection and inflammation. PSMA-PET is specific for prostate cancer. Ask your doctor whether you will go to PSMA-PET and not to old technetium 'bone scan'. It may be a silly question for him, but for example in Europe and in the UK many doctors still don't use PSMA-PET scan.
PSMA-PET scan is much more precise and shows prostate cancer tumors larger than approx. 5 mm everywhere. Technetium 'bone scan' shows cancer only in bones and is not that precise.
Plus if the lung lymph nodes will be 'bright' on PSMA-PET scan then you will know that there are prostate cancer cells. If the lung lymph nodes won't be 'bright' on PSMA-PET scan then the problem with lymph nodes is something else than prostate cancer.
Thankyou. I am sure it is the psma more advanced scan.
Will post findings this week.
Hoping no further findings.
Other than confirming the source of those lung modules. Which I am pretty certain we already know.
So we MO can start planning the next moves, strategy now, this week.
I will also be meeting with others to id the MOs, RO,SO and uros I need to use for just starting this journey. Though I would like to depend one main MO, I am reluctant to put all my rags in one basket. So I suspect I will be ysing multiple doctors and they will be changing. This concerns me too. As no one will ever be up totally on my journey and will have to learn which I am not in position nor have time for folks to learn from me. My life is not an experiement. I dunno maybe it will be, is.
Hoping we can at least hit those lungs now. Stop spreading. Seems the main lesion Has doubled in size in only three months. Afraid the iINTRA DUCTAL carcinoma may not be treatable.
First Step - Get a Medical Oncologist to lead your team. Get a radiation oncologist (if they decide it's needed) to treat with multiple options for radiation. I imagine prostate surgery is not going to happen if you're already metastatic (just a quick opinion, i'm not a doctor - just a Stage 4 patient). Begin the drug therapies prescribed. As mentioned, get DNA testing to help determine what you're dealing with as this will potentially affect your treatment regimen.
Second Step - go through the phases of accepting your new situation. It takes a while. You will hear 'everyone is different' related to therapies and responses - it get old hearing that, but it's true. This is where YOU and your family come in - fan out and read everything you can find. It takes time but you have to learn about this disease quickly. You need to know and understand options so you can question your care team on the 'what' and the 'why'. There are so many new terms and medicines and procedures to become familiar with. Everyone on this message board is great and will share what they know and think. If you don't like you care team for any reason, now that you are stabilizing with a regimen, look and find a new one.
I was diagnosed in January 2024. It's shocking on so many levels. The best single piece of advice I received was on Health Unlocked. It was 'no one tells you're you're not going to die in three months' - and it's true. I'm not and I trust you are not, as well. So - get to learning and living as soon as you can. Look at your diet and make changes. Look at your physical health and start exercising. Lose weight if needed. Look into getting an Integrative Oncologist who can help with diet, exercise, and therapies to deal with drug side effects (ie, acupuncture).
Best to you and welcome to the team, fellow Warrior! Don't beat yourself up on not acting sooner. Most of us probably feel/felt the same. Forward!
Excellent response. I will stress the point about educating yourself. I saw 9 different Dr's while picking my team of 3 (Uro, RO & MO). I now have a large 3 ring binder that contains notes from every Dr visit, copies of all of my tests (I find easier to flip a page instead of searching My Chart).
I would go into every visit with a typed list of 10-20 questions to make sure I didn't miss anything. My Dr's now tell me they treat me differently than other patients due to how organized I am and the knowledge that I have. They talk to me in depth instead of in generalities.
This is probably the best advice, the video on PCRI with the guy that is metastatic for 16yrs and has had a total of 5 cancers says to do that. He's 71 now or more
We do that, as well. My wife attends all the significant doc visits with me. We have questions lined up and we hit them all. I listen, and she takes notes. It works really well so I can stay focused on conversing with the doc while she scribes.
this disease is a beast and it is very hard to pick it up and take it out successfully as you say. I am trying to come up with a strategy for my son that has no risk and it is hard. Do not blame yourself. Even if you would have gone in with a PSA of 2.5 I am pretty sure it would already have spread. My PSA was 2.9 and it was already outside the prostate. Your cancer does not make much PSA and that makes it harder. We are all in the same boat here. There are many therapies that will prolong your life. Look at each day as a gift. Make sure you enjoy life. Get an oncologist that specializes in prostate cancer.
I’ll echo what others have said as a fellow stage 4 and Gleason 10 at initial diagnosis 4 months ago. My PSA was only 2. Can’t beat yourself up. Key to fighting this beast is to keep looking forward, take everything one step at a time, and research like others have said.
Question doctors and don’t hesitate to advocate for yourself to include getting 2nd opinions or switching doctors or even centers. I immediately went to Duke once my biopsy results came in due to the rare and aggressive type of PCA I have.
My tumors already shrunk on Xtandi and Orgovyx within first month and next will be undergoing low intensity IMRT this fall on prostate and bladder.
I’m in the learning phase of this damn disease. My husband is Gleason 8 stage 3 PSA 9.96. All genetic tests came back negative. I can’t figure out how your PSA is so much lower than his but it’s metastasized. Is it genetic for you? My husband is worried that with multiple cores at a Gleason 8 it’s going to spread before his surgery in October. Anything you can share from what you’ve learned would be greatly appreciated.
Not yet. Just absorbing the news past two weeks. After this week PSMA bone scan I expect to start doing something ADT this week. I will be demanding it. Hopefully they agree and I don’t have to demand too much.
But yes I also want to remove the original source if this mess. It is nasty and needs to go. I am going to do my best to demand that as well. I am afraid I am in no position to demand much of anything.
Being spread only to my lungs so far I and I am very healthy and young at heart..:), I am hoping they make an exception and do a RP.
I don’t see how it can hurt. I will fn gladly wear diapers if I have too knowing that thing is gone. I know cancer will still exist may never be gone but..
seems they base this on fact probably won’t live beyond five years so pointless to remove prostrate and deal with impacts of that when cancer spreading via other sources.
Baloney, you don’t know anything for sure much less anything about me. One thing I plan on doing is making sure they know enough about me and my expectations, desires, whatever you want to call them . That they make decisions per my situation, attributes, needs and not just fit me in some decision tee. That sucks!!
At same time I hope to rid if not minimize,stop the lung growth.
My last gf, much younger than me, I was worried I got her pregnant. I was like wtf I thought you learned about this a long time ago.
Yea I don’t really need nor even want that right now, if ever.
I gave my hands full with my own baggage.
Thank you all. I am so sorry we all have to meet here. However it is nice knowing people do care. In fact care so much they are willing to share there journey in hopes it might help.
That means so much to one like me who is all alone. I have lived alone for 15 years now since my divorce from my wife of 25 years. Four kids fully grown. Four fn most beautiful grand kids a man could ever have. They all are so beautiful and healthy and full of life.
if I die tomorrow I am in them. Hence in a way I will never die.
But f that!! I want to live not just to see them grow. Just as important to me I want to live.
"Even longer delays had no effect on outcomes. Gupta et al. looked at very high-risk (GS 9/10), high-risk (GS 4+4) and unfavorable intermediate-risk (GS 4+3) men who had surgery within 6 months of their diagnosis. They compared outcomes between those who were treated in less than 3 months of diagnosis vs. 3-6 months. There was no difference in 5-year biochemical recurrence-free survival or metastasis-free survival."
"Hirasawa et al. found than men who delayed surgery for over 6 months had no worse outcomes than men who were treated sooner in Japan. Zanaty et al. found that delaying surgery only affected the high risk patients in Canada. Morini et al. found no loss of efficacy when surgery was delayed for more than 12 months in Brazil. Aas et al. found no decline in pathological findings, freedom from relapse, or prostate cancer survival after delaying prostatectomy for 6 months with 8 years of follow-up among intermediate or high risk men in Norway"
Sorry to see this. Current standard of care would be triple therapy. That means 6 doses of docetaxel, then ADT for at least 2 years. Genetic testing is also advised.
Although counterintuitive, those with lung Mets do better than those with Mets to bone or other organs. Get a good MO who specializes in prostate CA. In the U.S. that will usually mean going to a university medical center. Everyone is a bit different. Exercise is very important as is a healthy diet.
You don't have lung metastases, you have metastases in nonregional lymph nodes (stage M1a), not visceral metastases (stage M1c).
About the study - the study is a retrospective study, not prospective. And the number of patients is too low (only 10).
As Tall Allen wrote on his blog about retrospective and prospective studies:
"... These disappointing results conflict with several retrospective database analyses. This once again illustrates that only prospective randomized clinical trials can prove a causal relation, and that observational studies are confounded by the vagaries of patient selection; i.e., patients who receive debulking in actual clinical practice are the ones who would do better anyway. It is worth noting that a similar thing had occurred with breast cancer. Several retrospective studies had suggested that resection of the breast tumor plus axillary lymph nodes increased survival even when distant metastases were detected. However, Badwe et al. reported that when women were prospectively randomized to that treatment or no such treatment, there was no survival difference. "
The RP will not change the fact that you have distant metastases. The cat is out of the bag, so to speak. Consult with an good MO who has expertise in PCa. There are several around the country. Triple therapy is, most likely, the way to go. Good luck and let us know how things go.
Even if it had met to my lungs anywhere why can’t we take out the prostrate?
I don’t want it or need it in any way. Seems it will always be a source of cancer, annxiety unless I remove it.
I am very healthy, strong. My age 63 I am more like 43. In better shape than all 3 of my sons. Better than I have been in my whole life. Other than a few nuisances now due to this. Which yes I am very scared are only going to get very much worse!
Radiation should help, but talk to your doctors, don't ever be afraid because it's your life, they may suggest radiation and then triplet therapy since you are in shape and you can take it.
Keep working out, no matter what, that's our best tool at the moment, diet comes second. We are all working on slowing down the progression till I can announce you a cure!! Fight on bro!!
CPO14 hi there. Don't feel ashamed. I did the same. as you. Waited and waited to see a urologist as I knew what would be the case due to the fact that my father had PC and died at 60. I have a family and was at first ashamed for waiting. I was fearful of what would happen once I made that first visit recommended by my G.P. for almost five years to just go in. It's over, past, and on to what is now and that's a new chapter and a big fight to beat this for a good fifteen to twenty years. Also I'm super confused by all the lingo too. Who the hell wants to aspire to being an expert at this? You'd be out of your mind. All of this has fallen into our laps for one reason or another and now it's the new language we'll soon be fluent in not by choice. Good luck and sending positive thoughts.
Please take note what Tall_Allen, the leading expert of this community, replied to you in the another post: "Radiation (not surgery) to prostate may slow it down. Consider triplet therapy."
If the bone scan next week shows that you don't have metastases in bones and if the lung lymph nodes are due to prostate cancer, then according to NCCN guidelines the preffered options are either doublet therapy (ADT + 2nd generation hormonal therapy), or triplet therapy (ADT + 2nd gen. horm. therapy + chemo (docetaxel)). See attached pictures.
According to the guidelines you can "remove" the prostate using radiotherapy (RT), but no longer using surgery. It's proven that the result of radiotherapy is same as surgery. How RT works: RT makes a damage to cells DNA. Healthy cells can repair the damage, cancerous can't and when they try to divide, they die. Healthy cells divide normally.
NCCN guidelines for professionals (more detailed, accessible after creating a free account): nccn.org/professionals/phys...
Removal of the prostate when you already have metastases is called "debulking". Read please this blogpost on Tall_Allen's blog about debulking: prostatecancer.news/2018/09...
You can do both: triplet/doublet therapy + to debulk the prostate.
I don't know the best sequence. If RT first or chemotherapy first. You wrote that a lymph node went from 1.9 cm to 3.2 cm in approx. 3 months. So maybe chemotherapy first.
Read please a post on Tall_Allen's blog about triplet therapy for newly diagnosed patients with metastatic hormone senstive PCa (your case): prostatecancer.news/2021/05...
In the blogpost there's a reference to the PEACE-1 trial. In that trial it was chemotherapy before radiotherapy for the subset of patients who had both:
"Radiotherapy to the prostate was delivered ... after patients completed docetaxel if receiving chemotherapy."
thank you to all. I am so grateful. Yes I understand the debunking and metastases protocol?
I plan on some sort of triple threat. But I really don’t want, need my prostrate
I know no one knows full extent of metastasis but from what we all see and they say so far it is in my prostrate and my lung nymphs. Yes it may also be in my right lung Hilar. But it has not invaded my bones or other organs yet.
I would like to prevent the source from spreading compounding things. Hoping the met can be held back if not non detectable.
Am I way out there crazy, unrealistic for wanting this? Though I am a bit late in this journey, seems I still may be a bit in front?
I dunno but I am trying and not giving up or just doing what one person says. I plan on seeing folks at md Anderson.
Seems they are one of the best in the nation. Additionally I read they are one of the few that consider surgery, radiation after met.
I appreciate and take in what everyone has to say. Thank you
My situation is not as severe as yours but I had some unusual diagnosis myself initially. I am being treated at MD Anderson myself in AZ. My RO and MO have been great at investigating and running tests and adjusting my radiation treatment based on my unique circumstances. This whole thing is quite a journey and I am in the middle of it now. Best to you but just wanted to say I have been happy with my treatment at MD Anderson so far
I am doing fine had to adjust ADT myself and will probably be on double therapy soon. This whole thing is a tough beast. I looked at your last post and you have a lot absorb and figure out. I did not see where ended up going for everything. Assume with Casodex you are getting Lupron as your ADT. Hopefully you are at a center of excellence for cancer care and you have good team around you. That makes a difference since you will have many things going on at once. There are many brave men on here to guide and give you encouragement.
Sorry to hear that 🫶 Wish you the best of luck, there are many people here with a lot of knowledge.
My dad went through the whole treatment package, but didn't have any side effects, so treatment doesn't have to be that bad for everyone.
Don't spend your time regretting what you haven't done, it is what it is, and I understand that you are devastated and scared, but a lot of people wait a little too long unfortunately. Look forward, seek advice and stay positive and hope that you get good response from treatment. Use the people around you, I'm sure they want to be there for you ❤️
Edit: Didn't read your last post. Anyway, hope for good news on your next appointment!
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First, stay calm. I know it is hard, but panicking will effect the choices you make. Find a good MO and start planning... There are plenty of folks on this forum who are thriving with stage 4 for a long time. You got this!
PSMA pet scan
PET scan shows mets to lymph nodes
Fallout from PET/CT Scan
PSA 6.9 six years after prostatectomy but PET/CT negative?
PSMA PET Scan Shows no mets?!
