I have been researching about BRCA2 as my husband has this . The more I study about this the scarier it seems, is this wrong. It says that men with BRCA2 are more resistant to treatments and earlier than men that are not. Does this mean my husband most likely will become castrate resistant sooner because he is BRCA2? It also seems like the PARP and platinum chemo are better treatment once he becomes castrate resistant versus other treatments. Is this going to be our next step when he does become resistant? Or do they try something else first? It is scary if the PARP does not work because what else would there be then ? He only has one chemo left and the doctor who has some training in oncology passes his care back to our regular doctor, so we have no oncologist to refer our questions to till he has a decline at which point our doctor will refer him to someone in B.C for further care.I really would like to have a idea where our next step may be before this so we can get ahead of things. The doctor that we see during chemo does admit that she knows nothing about BRCA2 ??? I'm truly scared and would love to hear from others that have BRCA2 --their treatment, diagnosis, where they currently are, what worked and what did not? Thanks
BRCA2- is it the devil or not?? - Advanced Prostate...
BRCA2- is it the devil or not??
I am BRCA2 positive. I was on Lupron/Zytiga for 7 years and 6 months. I have had three different rounds of radiation during that span. Once it failed I went on PARP inhibitor(Lynparza) and except for some initial stomach discomfort it has been smooth sailing. My father died from this same cancer at 80 yrs. Oddly enough my brother is also BRCA2 positive but has no cancer. I am "healthy as a horse" and life is very good
Made my day. Thank you
I thank you for your reply and am so happy that you are doing so amazing ! May I ask how long you have been on the PARP and if your PSA/scans have showed positive results. I have read that nausea is the most common side effect , god to hear that you have resolved this issue. Curious if your PSA was ever high over the years ? Thanks for the reply as your post does make me feel better
I have been on Lynparza since December of 2023. Just had scans that showed no active cancer and no new metastasis anywhere. Nausea was beat by going to 3 pills instead of four. Initially my PSA was 8, never went any higher, waiting on latest blood test results. MO was more concerned with scans than PSA. Also part of the rationale for 3 pills was low red and white blood cells. As an added bonus my new MO was part of the Lynparza development team and very knowledgeable about the drug. So far very positive outcome
Wow ! This is so awesome for you to have such top notch care !! I'm so scared were we live they dont even want to do any scans unless PSA changes one day and the scans here are only a Cat scan. Very positive new for you , thanks
I am BRCA2 Diagnosed 3years ago PSA 10.5 With G9 T3b N1. Started Lupron and Zytiga accompanied my HDR Brachytherapy followed a month later by EBRT. My PSA dropped significantly after Lupron and Zytiga. (See my bio) and slowly after that to <0.05. Currently been off ADT for almost a year. Currently everything is stable. Have labs coming up in two weeks. If I develop Mets will go back on ADT and a PaRP inhibitor.
Thanks for the response, curious why you would not go back to Lupron and Zytiga if it was working before you got off of it? I see most guys were put on the Zytiga , wonder why this drug was never mentioned at all when we started treatment? Also nothing but Zoladex was mentioned. I think they all work the same ?? Glad you have gotten a break from the ADT, it is so insanely hard on my husbands body already and he just started treatment. Sounds like you are doing amazing , makes me feel better seeing positive outcomes like yours .
Sorry for the confusion. I will restart Lupron and Zytiga and then a PARP if not responding to the Lupron and Zytiga . My treatment was given with curative intent. So after completing 2 years of ADT we are in the wait and see mode if it was successful. MO says it’s about 50:50.
I am BRCA 2, somatically and genetic. Diagnosed 5 yrs ago. G9. Had prostate removed, then radiation. Been off of Eligard for 2 yrs but psa has been climbing. Had Eligard shot yesterday. I hope I am still hormone sensitive. IMHO, you need to find a specialist that knows about this condition like Dr. Antonarakis at the U. Of Minnesota.
I'm from Canada and live very remote area, I wish we had that option , but we don't . I strive to get my husband the best care I can from where we live and am going to talk to his doctor about someone that knows about BRCA2 . The best to you on this crappy journey
Good luck to you both!
Are you in the Yukon? I remember someone is.
Yes we are in the Yukon
You need to get a referral to BC Cancer. You never know how they can help you.
Thanks , we have been referred to them . Yesterday we finally got a call from the genetic specialist from B.C cancer. They did not have too much to say that I did not already know about BRCA2 . She just mentioned that when my husband goes castrate resistant he can go on a PARP inhibitor. We did know this already . We just happen to live where there are no oncologists or urologist . They say no scan is needed at all till PSA shows it is needed. I just get freaked about this as I have seen people with low PSA and cancer is spread . Wish we could look inside his body and see that chemo and treatment has omitted the cancer. Wishful thinking . Good luck to you
I am not sure if you are already aware, but there is a private company in Burnaby BC that offers PSMA scans. I believe they told me PSA has to be above .2 for the scan to pick anything up, but I would confirm this with them. The name of the company is Initio Medical. I wish you all the best.
Thanks for your reply , I was aware of this . Thanks for letting me know though, thank goodness my husbands PSA is still slowly declining during this chemo and at 0.12 last reading a few weeks ago. I wonder how much they charge for this PMSA test? Also I think you have to have something else too , too make the PMSA show up ?
The cost on their website is $3200. I am assuming there is tax on top of that, but I am not sure. You need to be referred by a physician. We haven’t had our intake call yet, so I’m not sure what additional information they will ask for. I probably won’t be on that call with my husband, but I’ll try to remember to ask him what they asked. The call should happen tomorrow.
initiomedical.ca/petct-psma...
They were really helpful when I called initially to ask questions, so if you have questions you could reach out to them. I hope your husband’s PSA continues to decline.
Thanks for the reply and this information , it seems wrong that this scan is basic care outside of Canada and not here . That's a great deal of money for most people , especially these days . Currently I'm searching to insist on an oncologist at the B.C prostate centre that will see my husband now and than and follow his case . It is frightening to only have a regular doctor going forward . Best of luck to your husband as well.
I agree. There is a PSMA scan at BC Cancer, but I had read that it’s mostly used in clinical trials and high risk cases. The issue is there is a 6-9 month wait. I’m not sure how that’s at all useful for someone dealing with cancer.
I reached out to Island Health this weekend to see if we have access to their patient navigators. It is scary going through all this without someone who really understands the disease and the system. Why will the oncologist who treated him not follow him long term?
We had 2 telephone calls with an oncologist since being diagnosed in October of 2023. He was in a huge rush to get off the phone and the 2 calls probably totalled 5 minutes . He apparently has taken time off to go golfing from the practice and left us to the urologists care. My husband met the urologist before diagnosis of it being in the bones to discuss having prostate removed. After he got home and was called to tell him it is spread , we have never heard back from this urologist . Good luck to you and do lots of research , I have had to fight to get the current care he is getting
I am so sorry you’re dealing with this. Our health system is very broken right now 😟
Very broken . Has your husband got genetic testing yet ?
No, we just talked to the oncologist for the first time on Friday. We are three weeks into this journey since diagnosis. At that appointment, my husband was invited to a clinical trial (GUN) that involves sequencing his genes and then treatment prior to RALP focuses on the outcome of those tests, but he hasn’t decided on whether he wants to participate in the trial or not. I asked if he could get the testing even if he doesn’t participate and they said yes. We haven’t delved into that further yet. Does knowing the results of genetic testing outside of a trial change the treatment at all? What I understood from the initial conversations was a lot of these drugs haven’t been approved yet, so they aren’t available outside of trials. I need to better understand how knowing the results outside of a trial would help direct his treatment.
My husband had the genetic testing and was confirmed BRCA2 , it does not currently change his treatment as he is responding to the triple therapy treatment he is currently on ( thank god ! ) but later when he becomes resistant to treatment ( castrate resistant ) the BRCA2 will make a huge difference in his treatment as than they will use treatment that best responses to that ( PARP inhibitors ) . Worth knowing and also if you have children they can be aware to get tested and maybe catch things early .
Do you know if the testing was specific to finding the BRCA genes? Or did they do widespread genomic mapping to look for all genes that could contribute to prostate cancer? Was this testing freely available to him as a cancer patient?
It tested all genomic mapping and they did it for free , blood work was sent on Nov 29 ,2023 and we did not hear back till Feb15th ( which was a quick phone call from oncologist) . Genetic counsellors just called us to talk by phone on April 4th. They answered the questions oncologist did not as he was in a rush and spent 3 minutes talking to us. Apparently they are backed up with so much testing
Thank you for the info. Yes, they did mention in the trial paperwork that it takes about 8 weeks to run the sequencing.
I have a BRAC2 mutation which I suspect I inherited from my mom who got breast cancer at 35 or 37 and died at 45.My diagnosis and treatment are in my profile and too long to copy here.
I agree with you that having that gene mutation is a scary thing.
The treatment I underwent was with curative intent and ended in May 2023. I am not on anything since then and though things didn't look good at the time because of the ravages on my body from the treatments, I have reclaimed much of my health over the months since my treatment ended.
The only symptoms I still have is the neuropathy in my feet which flares up whenever I take a break from the ketogenic diet and a new sadly a new weird one. On two occasions, once in February and then again about a week ago, my big toe has begun to rise all the way up on its own, ignoring my mental commands to remain on the floor. It kind of feels like a cramp you would get in a thigh or a calf during sleep but it happens when I am awake.
Otherwise I am good now and in shape. It is now a waiting game as I get tested every two months for the psa to see if it will stabilize at an acceptable level now that some of my testosterone is half back or if it will require further treatments.
Best of luck to you and your husband.
the only thing that comes to my mind is to check a trial called BRCAAWAY where they verified that a combination of parp and arsi (I forgot which names) once castration resistant led to a progression free survival of 39 month median, which is not bad al all considering the speed of research and development of new treatments
I have an atm mutation and I have also done triplet therapy to which I have responded really well from what the MOs say. And from what I read your husband responded even better! Speed of PSA decline and testosterone reduction seem to be an independent prognostic factor. These mutations are scary and from time to time I really feel bad about this…but it’s a matter of probability, not a sure thing. Intense workouts and good diet play a part as well.
I thanks you so much for this information and your honesty , I will look up this trail . Wish you the very best .
I've been using an AI search engine (perplexity.ai) to get information and find it very useful. It's free and you get the result in seconds. I typed in the question "What are the treatments and prospects for BRCA2-positive prostate cancer patients?", and the reply included 5 links to professional articles and 3 suggested further questions.
Thanks this is interesting, I may have to see if I can figure out how to use this also
Glad to help, let me know if you need more info.
Thanks for this great tip. I find perplexity.ai to be better than the others I have tried. Always citations, and new paths to dig deeper. Am using the free version as of now.
Glad I could help. I also use only the free version. I'm amazed at how fast their response is!
It's taken my amateur research to another level, it's awesome!
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