I have a few questions about Stage 4 Prostate Cancer, which I can't seem to find answers for myself.
So my dad (56 year old) has been diagnosed with prostate cancer in 2021 after several PSA check ups and the out coming Gleason score was 7. They immediately decided to remove the whole prostate with a surgery in 2021. Afterwards his PSA scores started rising again(from 0 to 0,1 to 0,2) but the urologist decided to "observe" the case instead of doing something, because apparently the results weren't "dangerous" and normal to be a little higher after the surgery. However they did do some sort of CTs and PSA score testing (2022) (latest was 0,2) if I remember correctly. A few months ago the PSA seemed to have doubled and they decided to finally take action and did a PET CT last month. Apparently he has a metastasis in one lymph node near the pelvis but it hasn't spread to the organs or bones yet. Now his oncologist decided to give him a radiation therapy. 5 times a week for 5 weeks.
My questions are, shouldn't it be treated with a hormone therapy beside the radiation therapy and isn't it possible to remove the one lymph node that has a metastasis?Are there any chances of healing? His urologist said the chances are looking good, but I have no clue if u can trust his words anymore.Everything of this is honestly shocking me and I have no clue how to cope with it.I hope someone can help me answer these questions.
"shouldn't it be treated with a hormone therapy beside the radiation therapy?" Yes. he should be getting 3 years of ADT and 2 years of abiraterone.
"isn't it possible to remove the one lymph node that has a metastasis?" Only one was detected but there are many more where that came from. They are just too small to be detected on a PET/CT scan. The entire pelvic lymph node drainage area has to be irradiated.They can give a little extra radiation to the one they can see.
I really appreciate your answer and information about this topic. I have actually talked to my dads oncologist today, and he said his PSA Score (0,13) "is low" and therefore it wouldn't be necessary for ADT.
Is this true? I really have my concerns but my dad seems to accept what the oncologist recommended by just doing radiation for now.
.013 is relatively low. But retesting and doubling time tells a lot. Everyone is different as is their cancer. Find a doctor you feel is working for your dad's best outcome. Second opinions are helpful, and you need to feel confident in your doctor's advice. A good doctor will explain everything completely and not blow you off. Good Luck!
Mine was considered "low" (PSA .20 ng/ml at time of ADT decision), but it was aggressive as well, hitting the T11 vertibrate. I did the 5 Wks/5 treatments per week of IMRT, as well as Cyberknife to the T11 lamina. I'm on the STAMPEDE protocol, about half way through. I can't imagine NOT doing ADT/+. In the beginning it scared me, but it's easy to underestimate the resilience of this disease. Hit it hard from the beginning.
He should discuss having radiation to the prostate fossa and the whole pelvis plus a boost to the lymph node found in the PET/CT and 2 years of ADT plus abiraterone, based in the results of Stampede trial.
That is exactly what I think too, however my dad's oncologist told me that his PSA score atm (0,13) would be too low, or it wouldn't be necessary to do ADT or abiraterone.
That is true if he did not have a positive pelvic lymph node that shows cancer. The cancer is disseminated. Hopefully is localized in the pelvis and there are not distant mets.
Gutentaug! IMHO you are the good son. Advocating shows this in spades . I’m sorry that he got this young as I did at 53 .MY dad got it at 69. I’m not a doctor . But I don’t agree with “ observing it” ACTION NOW is better . TA tells the path for dad . I was #4 ,T -4 in much worse shape that your father is . The good news is that I did 8 wks imrt . I had two lymph nodes only lit up in the pelvis . My specialist decided not to rt the nodes .yet they disappeared . I did lupron and another now defunct adt pill that’s halted adrenal production . I did an orchiectomy 2017 after 2 yrs adt . I dropped the shots for life .. I went under the radar with my first 1 month shot of firmagon and have held on to that for over 7yrs now . It is possible to put pc to sleep for some Yrs .WE have members that have lived with pc for 20 and more . I am proof Of this . I did high dose vitamin c ivs for my first yrs and much other alt med including a strict diet and nutrition from a nat onco to date . I think the natural path helped save me . Most here dont believe in this . I’d think it’s more common in GERMANY? Each to their own . Please check your, psa starting at 40 . I did not . Although I knew I was 50% more likely to get pc due to my father. It’s pretty typical that we see men after an rp have an uptick and need more treatment . Just support him anyway you can . He should do anything he feels will help symptoms .My nat doc told me to do anything to feel better . Massage , infrared sauna , practice daily happiness. Pc is a drag on our emotions our ego and our strengths . We all suffer to different degrees . The important thing is to slow it down , put it to sleep for many years . 25% go into a long term remission . It takes effort to kill this mo fo . Maybe in the next years some genius will find us a cure? There isn’t one now . But in few years , who knows , maybe it come? At the ending on imrt for me I got chronic fatigue syndrome for three yrs . I popped back some then . Now I’m running in second gear. BUT I thank GOD daily that I’m still here .Especially after MY docs gave me 36 months at tops ! Keep him up and positive along the way . No negative thinkers around him either . The best med is love . Be strong and lead him through this . It’s great to have such a son! 🙏🏼❤️
MY URO almost killed me by making me wait five weeks until he got back from spring break with his kids to give me a biopsy . I didn’t make it . K failure . 8 yrs last month .. AMAZINGLY,I got on a test drug program and I had a pc specialist that made different calls than the uro did . I’m thinking if I had followed the uro I wouldnt be here today ? I’d get a great Medical onco and ditch the uro . But That’s just me . Good luck young man ! !
YOU and he take it day by day . Just get through it! I don’t think surg on one limp node is done now ? TAKE CARE
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I really appreciate u sharing your experiences and I have to say wow, that is really a story of a fighter. I hope you and your family went strong and happy through these harsh times nevertheless, since family is what keeps us strong no matter what after all!
Yet I have to force my dad to eat healthier, since he somehow lost the interest to eat.
Yes I agree with you about the urologist, my father started seeing an oncologist recently, and he is also the one that sent him to do the PET/CT.
The results were a metastasis in one lymph node, but like Allen already stated there is probably way more of them which were not seen in the PET/CT.
They did mark the spots they want to radiate him, it seems to be both sides of the pelvis, so I guess an overall radiation program on the pelvis. 5x5
When I talked to his oncologist today, asking about ADT or any other hormone therapies he refused it immediately saying it wouldn't be necessary because my fathers PSA score (atm 0,13) would be low and it wouldn't be needed to do ADT.
Do I trust his words? My father seems to do so, but I would rather try changing his oncologist instead of blindly trusting an oncologist.
Yours.
Harun
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Thank you ! Right now , let him eat what he loves . It’s better than losing too much unless he needs to lose weight . No man likes to be told what to do . I don’t agree that there are way more Mets than seen . But I’m not an expert ..I Don’t think like that ..always project optimism to him . Even if in doubt . This pc is nothing but a crap shoot to survival . I had two nodes lit up , no more . One is mild . Since you have trust in the mo go with him or her . Follow the expert . We are not doctors here . You must trust someone unless they give you reason not to . Pc is a convoluted disease that no one has figured out . Keep his spirits up if you can . Cheer , & laughter even in the face of disease can help out . With chronic fatigue emotions ground me down for three years . If you can get him up even to walk at first 100 ft ,it could help emotionally. My wife pulled me up and got me on my feet when I was in chronic fatigue . If she hadn’t ,I wouldn’t get out of bed . I’d get depressed and sleep for three days at a time . Not eating not drinking or taking meds . It was bad . Please Keep him out of the phase . We can’t sugar coat pc or it effects . Just day by day , lots of love and prayer to you both ! HE NEEDS YOU NOW . It’s so good that you are there . ❤️🙏🏼
Hello,. I do not have anything to add medically, follow TA's advice. My comment and advice to you, find a Medical Oncologist as soon as you can. My Urologist, did good with finding my cancer and did start me on good path, but then did not give me a good path forward from there. Very glad I got an MO. This journey can become discouraging at best, keep positive and walk close to your dad. He needs a son like you. I have a son who has been an advocate for me also. There is so much to be thankful for and I try to thank God every day for what I have, and not focus on what I do not have. All the best to you and your Dad. Thanks Keith
I feel your concern. My 68 yr old husband was diagnosed with metastatic non-surgical prostate cancer with psa of 32 rising in one month to over 60. He is now 82 and still enjoying life (with a few changes). A urologist is first source but you need a good pc oncologist to call the shots. Each person is different n needs to be evaluated separately compared to other studies. They used hormone therapy and many different treatment infusions, bone therapy, amuno-therapy, chemo and pills. He was lucky and tolerated all except for first chemo which lasted a long time. We kept it positive n he said his discomfort reminded him how we need to fight this. We never asked or allowed ourselves to think of "how long?". We just gratefully went from one new chemo therapy to the next (and thankful for any quality of life n more time with family). Now he is at the end of the "standard approved care available". We are thankful for a the years but still kicking, so have joined a "Trial drug" study in hopes (ALWAYS have HOPE) it will give us even more time cos he's just not finished yet! If not, it will help research advancements for others in the future. Be there and fight with love and hope along side your Dad against this as long as it takes. God bless
thank you for sharing your experiences, and I totally agree with you.
We have to try see everything as positive and make the best out of every situation. Which for me would be finding a right oncologist that cares, since the one we have, doesn't seem to care at all.
Keeping my fingers crossed about the Trial drug study!
You are right, we have to do what we can to support our partners/parents.
I really wish you and your husband a long and fulfilling life with a lot of joy, no matter the circumstances.
i was in a similar circumstance, but I should have done the short term ADT along with radiation. I regret it now so now im on ADT for life. Also like mentioned above it’s time for an oncologist! Demand it!
Hey KocoPr! I agree with the adt . I was so against pc that I stayed on adt for over seven yrs and and six years after an orchiectomy . I feel the docs and patients that drop adt too soon are much braver than I was . I was chicken to drop it , thing pc would rage back on me . . Although I hate adt effects . I hate pc more . I hope it goes well for you from here. . ✌️
My RO did not do ADT prior to or in conjunction with my radiation. His reasoning: the ADT with shrink with met(s) and make others undetectable. He also said that he did not want to “blindly bombard” me with radiation. My PSA numbers were also low at that time. So I had 3 sessions of high dose radiation to the met and that took care of it.
if your dad will go, get a second medical opinion. Go to a different specialist, preferably a medical oncologist. Ask your questions and they should be seriously considered, not dismissed. Based on our experience second opinions can be lifesaving.
The evidence for benefit of ADT with salvage radiation is not as strong when the starting PSA is low as your father’s is. And ADT causes its own harms. So it might be reasonable to not use it or go for a shorter course such as six months rather than 2-3 years. These considerations should be discussed with the RO and MO. There is no reason for him to continue to consult with the urologist unless he has some other urologic problem.
I guess everyone missed what you wrote...... you already have a medical oncologist for your dear Father. It's just a matter if you wish to replace him......Ask here if anyone knows of a good M.O. in the area of Germany where your father is located.... Good Son!!!
j-o-h-n <===<<< Senior management is about to spike my spikes....
Because your dad has systematic disease, he does need ADT treatment. I had a similar diagnosis and I am being treated with Abiraterone and Eligard which has kept my PSA in check.
Not unusual even after surgery. They removed the prostate, but it takes a while to detect if any tiny cells were elsewhere and undetected. That's why radiation follows surgery. I know others who didn't have ADT right away though. Depends on individual case.
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