BRCA2 & CPPS

Hi Everyone. Hope you are having a good weekend.

Does anyone (male) have a BRCA2 Genetic Mutation? I am a 35 year old male who had this passed down to me by my mother. While the gene is considered a breast cancer gene, as a male, I also have elevated risk of other cancers as well - including Prostate.

Over the years I have been diagnosed with 3 'Prostate Infections" - mostly non-bacterial - and only in recent months, due to the ongoing symptoms, came to learn through research, reading books, speaking with CPPS specialist, and believe it or not, in speaking with a new urologist, realized I more likely have CPPS.

I have found that 'sometimes' when I have my flare-ups I do see an increase in my PSA. Given my genetic history, when flare-ups occur I do attempt to manage my symptoms through diet and exercise before going to the Urologist to have them do a DRE and also to draw blood to check my PSA. Reason being is PSA can be used as a leading indicator of cancer, so they want to rule that out. So far, every time I work to manage my symptoms my PSA lowers. If my PSA is elevated at the time of my visit, antibiotics and dietary changes are the initial Rx, and again, when taking that approach, my PSA levels do lower to acceptable ranges.

My elevation is usually small - moving from <1 to 3-4 range, but the symptoms combined with the jump in my score is what causes Urologists to be concerned.

I test my PSA ever year now due to my genetic condition.

In doing my research I have not come across any tie between PSA and CPPS, although I would suspect there is a connection for men given the placement of the prostate on the lower pelvic floor.

Is anyone else dealing with this condition / and have a BRCA2 mutation?

If so, would love to get your thoughts on the topic, and also see if you do DRE's on a recurring basis in addition to drawing blood for PSA. Would also be interested to see if you do other annual / reoccurring tests.

My doctors in the past say if I experience symptoms, to get the DRE test done, but nobody has told me what I should do if my symptoms are always present - i.e. I can't be running to the doctor every week to get a DRE, nor do I want to given 'most' Urologists are quick to associate the dysfunction with a prostate infection vs. CPPS, and I find myself having the same conversation, and sometimes, an argument, that my condition is not prostate related, and as such, I am not interested in antibiotics, etc.

Just seems like a fine line to walk. My "opinion" is that if my PSA is elevated, and I do or do not have symptoms, I should do the DRE. And again, I do the PSA once a year and/or if / when symptoms really flare up bad.

Again, would love to get thoughts from others in this group on this topic.

4 Replies

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  • You didn't mention what symptoms do you have?

  • For this post, I didn't think the symptoms were relevant - more so just looking for any input from the group around people with BRCA2 Genetic Mutation who suffer from CPPS, and if they have seen a spike in PSA when their symptoms flare (whatever their symptoms they may have).

    If the group thinks the symptoms are relevant though, they range from sensitivity when urinating, to swollen feeling in the premium, to swollen / itching in the rectum, to tailbone pain and discomfort.

    BaneBane2424 - I believe you and I chatted recently specifically regarding our symptoms. Didn't we?

  • Yes we did, I remember now. May I ask you, do you have symptoms when you lay down on bed? And can you sleep good? And do you have penile sensation problems, erectile dysfunction and really bad pain after ejaculating?

  • Laying down actually improves my symptoms - which are more aggravated when I sit on harder surfaces. My symptoms do not impact my sleep, I do have sensitivity while urinating - not with my current flare-up though, and I have no erectile dysfunction or pain after ejaculating.