Kathy here, spouse to Ed living with stage 4 PC with mets to lymph nodes and lungs. Dx NOv 2020, Gleason score 8, initial PSA 286. I have been silent observor on this site for about 8 months, and have learned SO much about treatment options, SE and prognosis from this site - thank you.
My question: I am gathering that prognosis and treatment options differ, depending on whether mets are found in bone, or in soft tissue/organs. Can someone please explain if one type is more difficult to treat, and/or has more limited options, than the other?
My husbands oncologist was a little surprised to find cancer all the way in the lungs, absent anything in his bones.
Thank you -
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MIkamom
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Lymph node mets have a relatively good prognosis, bone mets a poor prognosis and visceral mets have the worst prognosis. With the exception of the lung! A chemo can reduce lung mets very effectively. Or radiation with SBRT.
Hi GP, would one single met to the pelvic bone still be a bad prognosis? I am left wondering because on one hand that means that it is still localized but on the other hand... it is still a bone.
There are other factors that determine the prognosis too, e.g. Gleason score, initial PSA value. If there is a bone met detected on a bone scan the tumor is not localized, it has spread. You could try radiation of the prostate according to this study:
Thanks GP. My father has two close lymph nodes with cancer and one suspicious spot on the pelvic bone which in my opinion is likely a bone met considering he was Gleason score 9 and a PSA of 226 at time of diagnosis.
They redid the scans and still the same situation, pelvic bone shadow still not conclusive. They told us that these scans came back with FANTASTIC results. I was happy and relieved to hear this as they are telling him that it is still localized and that they are AIMING for a cure.
After hearing this I thought well best-case scenario is they cure him. and worst-case scenario is that they treat him for life but that the life expectancy would be 10+ years given the optimism and choice of wording after these last scans.
BUT over the last few days from what I am reading It sounds like even with only 1 met on a pelvic bone and no distant spread.. that the prognosis is 5 years as it is still considered metastasis cancer regardless.
He just completed 5 weeks of Radiation to the whole pelvic area while he remains on ADT. SO they said now we wait 6 months with blood work once a month and we will see how well the radiation treatment worked I guess
The recommendation of the guidelines is to apply at least 18 months of ADT after radiation. In your case I would see if you can combine that with Abiraterone.
hmm tall Allen just mentioned this as well. and below was my response. Regardless we will ask the docs about their thoughts on this too !
When looking this up to educate myself I see it is for advanced prostate cancer that is most commonly offered to men whose cancer has stopped responding to other types of hormone treatment. Basically second-line therapy.
Though it goes on to mention that so men may be offered it as a first line treatment although it doesn't mention any pros or cons of using it as a first treatment.
and the other mention for it being prescribed is if you are no longer responding to chemotherapy OR if you can't have chemo or if you've opted against Chemo.
So for my fathers situation. localized and responding to Firmagon, it appears that it is not necessary?
The PCa of your father is not localized. If you would get a more sensitive PSMA PET/CT scan, it will show further lymph node and bone mets.
When a patient is diagnosed with bone mets, the standard of care is now ADT plus Abiraterone or one of the similar drugs. Studies have shown that this combination does increase overall survival. Not all docs seem to have attended seminars to learn that this is the standard of care now.
Ah shoots. It may be because we live in Canada and they insisted that he does not need a PET scan. If a PET scan showed the same results as his current CT and Bone scan then I guess then it WOULD be considered localized ?
Can I also ask, how can you be so sure that he has other bone mets and lymph node involvement?
I thought the Gleason score 9 just tells you the likelihood of it spreading is higher than say Gleason score 7.. but the patient with Gleason Score 7 could have it spread whereas the patient with Gleason score 9 does not have it spread.
As for the high PSA of 226 at time of diagnosis, I was thinking that the large tumor in his prostate could have been the cause of this high number (His was very large)
Maybe I am reaching for something positive, but I really believed that he is clear of any distant spread despite the odds going into it?
You mention there are two lymph node mets and very likely a bone met on CT/bone scan. This means the cancer has spread and is not localized.
If you continue monitoring with CT/bone scan patients can become resistant to ADT and no mets show on CT/bone scan. This is called non-metastastatic CRPC. However, studies showed that about 90% of these patients have mets which can be detected with a more sensitive PSMA PET/CT.
Based on CT/bone scan it was correct, and I think it would have been correct even if a PSMA PET/CT showed more mets, to radiate the prostate and the pelvis. It is correct to continue with ADT now. But you can do more by adding Abiraterone and have ADT plus Abiraterone for more than six months. Often docs recommend a longer period of ADT after the six months are over.
Thank you for simplifying that for me. I put so much time into researching prostate cancer for the last 6 months and yet I still get confused and some of what I think I know is wrong. Frustrating !
The told him 2 years minimum of ADT but it could very well be for life.
I've taken up a lot of your time but I do have one last question based on your previous reply.
I do not understand the "If you continue monitoring with CT/bone scan patients can become resistant to ADT and no mets show on CT/bone scan"
Does the radiation of these scans impact / cause resistance to ADT?! I am googling this and don't see this mentioned
You misunderstood me. If you continue with CT/bone scan you may not detect mets all the time and still the patient will become resistant to ADT. The CT/bone scan is diagnostic and will not cause resistance.
After two years of ADT following RT docs will usually stop ADT and see how things develop. They hope that the patient can live for a long time without ADT. If your father mentions this study he may get away with 18 months: pubmed.ncbi.nlm.nih.gov/299...
Okay thank you, you have been a tremendous help. That first part makes a lot more sense now and the second part I understand as well and we will present this to his team.
I was 73 when my PCa was detected. The PSA was 253 and the Gleason was 9/10. There was one extra capsular extension, seminal vesicle invasion and peri-neural invasion. However, thankfully we can get a PSMA Pet CT Scan in India quite easily and it showed not lymph nodes or metastases. However, this only means that there were no lymph nodes visible over 2 mm. That I understand is broadly the limit of detection with PSMA Pet. I had IMRT covering prostrate, pelvic nodes, seminal vesicles and prostrate bed. I had 33 months of ADT. Thereafter in month 28 I saw an increase in PSA. It went on increasing till month 37 to 1.47. Nothing was detectable on PSMA Pet scan so it was characterized as a Biochemical Recurrence. I had an Orchiectomy and am now on Darolutamide as my PCa was staged as Castrate Resistant non metastatic or CSNM. Let us see how things go. I have also been taking medication to keep bone growth going and so regular daily 5 km walking, weights (light weights with many repetitions) to keep up muscle mass. I play 3 rounds of 18 holes of golf - all walking. Life is good.
Hi Binati, I read your profile and your earlier posts. Keep us updated I will be following your journey. I thought they continue ADT for like but it appears it is just for 2-3 years based off what I see throughout this forum.
So after Radiation did your tumor in the prostate dissapear and if so how long after radiation did it take to disappear?
I presume that the radiation fried the tumour in the prostrate and seminal vesicles. The killing process goes on slowly for some time. The proof of this is that the PSA keeps declining till it reaches a nadir. Either it remains near or about the nadir and you have a remission or it starts increasing indicating a BCR - biochemical recurrence.
You will have a lot more credibility with your MO if you ask if they are familiar with trials, specifically CHAARTED, LATITUDE, STAMPEDE and PEACE-1. Of course you need to know a bit about these trials.
one is better than many. My husband had his single pelvic bone met irradiated when they zapped his prostate. So far so goo 2.5 years later except they see a suspicious lung lesion, which they think might be primary lung ….probably will be biopsied soon.
Thank you ! By your username I feel connected to you haha. Concerned Wife and I am a concerned son. You are right when you say 1 is better than multiple so that part is still a relief considering how bad it could have been.
I have read your bio, and I wish you guys success in this journey. It sounds like they can treat lung mets very successfully. I am on a few different forums and have come across multiple people that are still here and doing well 8-9 years after finding lung mets + spine mets. Keep us posted. Much love ♥️
Hi Kathy, I also have PCa lung Mets & in nearby lymph nodes. I‘ve been in treatment since 2010, on and off androgen deprivation + radiation but still androgen sensitive. Also had several scans including PSMA Pet. In addition had a few lung biopsies & a partial lung removal. I know, sounds scary but I’m still very active, skiing this week. If your husband would like to discuss possible paths, respond to this reply & I’ll share my email. Best to you both. Phil
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