Previous Cancer survivior (cholangiocarcinoma) and now prostate cancer

I can tell you that ten years ago I had an extremely rare kidney cancer and when I got PC one of my first questions is if it is related and my urologist said no. He said that it would be insanely rare to have PC caused by another cancer or for PC to cause a different cancer itself.

Just because I shared this every time something like this comes up: coincidentally, the same urologist took my kidney that took my prostate, and he used the same robot and even re-used the same incisions. Kind of crazy really. I just hope if something ELSE comes up (because I'm apparently perpetually screwed) it's something the Da Vinci can do and it's in his area of expertise, then get three uses from the same robot and incisions 😂

Thanks for your input! I've much perusing to do, and have actually been lurking for about a week up here reading. Collective knowledge and anecdotes are so important to share. I thank you.

I have wondered the same thing. My brother had colon cancer about 15 years ago with a 1% chance of living. Three years ago he had prostate cancer. One year ago he had pancreatic cancer and is still fighting and with each he was treated at a center of excellence care. Given genes and lifestyle, I suspect there is some connection.

There can be mutated DNA that pre-disposes people to get certain cancers. I'm going in for my hereditary test in a couple weeks to start to see if I have that. It's not the PC causes other cancers or other cancers cause PC, but bad DNA can just be allowing cancers to appear in the first place, at least according to modern science.

The only reason I really want the test is to know if I have mutated DNA and if I should warn my brother to get checked, otherwise it is what it is and there's nothing I can do about it. I also see this as an "egg scenario" where today eggs are good, but they've been bad, then good, then bad, then good - the point being that science is always changing their viewpoints on these things so absolutely anything is possible.

This is something that I am having done as well. My cancer burden/ PSA score and Gleason scores are somewhat contradictory (low PSA score relative to burden/biopsy testing). I'm new to the lingo so hopefully I do not further complicate my case. Urologist said he wanted to send it out for DNA testing. My Gleason scores were 5 cores @7 with 4 of those cores as 3+4 and one at 4+3, and 4 cores at 3+3. PSA was 6.9. Regular MRI with contrast showed no cancer in the surrounding areas of the prostate including lymph nodes. Fusion biopsy confirmed this essentially. So, we re talking about clinically local cancer with my choice to have the prostate surgically removed. The only downfall for me (aged 56) is that he does not think nerve sparing surgery can be fully realized as one side of the prostate has the cancer cores lining the area where the nerves are while the other side of the prostate looks to be ok for the nerve sparing attempt.

I'm inclined to speak with the surgeon and see if he/she agrees with the urologist and if so getting a second opinion.

You should, without any question whatsoever, get at least a few more opinions. Urologist, radiation oncologist, medical oncologist. I got 9 before I pulled the trigger.

The testing that your urologist sent your biopsy for is almost certainly Decipher, as the genetic test is a bit more involved than that and is taken outside of the biopsy. In my case it'll be about six months that I've waited to get in to see them because it's detailed and backlogged.

I was also told that I'd lose half my nerves, and I did not. They frankly don't know until they get in there. I am 54 and 7 weeks post-op, so we are very similar (feel free to message me privately if you want to talk about anything).

Your urologist isn't your surgeon? That's surprising. While I know some urologists specialize in things like penile therapy, it's unusual that the one planning your care isn't he one planning to perform the operation.

I had the myrisk gene test but did not show an issue. Not sure if my brother had it.

@survivor5280 ....I'm still learning how to navigate the site and haven't found the message option yet. If I were to message you ( you can obviously message me and I can reply ) I would probably ask why you felt 9 consults was necessary (note : I'm certainly not questioning your thoroughness or self -advocacy, rather what prompted it ).

The mail icon in the upper right of the page, next to the bell icon letting you know you have replies, new topics and reactions is what you use to message someone. Or click the blue text next to a name and you can view the profile and send a message that way.

I did 9 as a "no stone left unturned" methodology. I did it because there are so many paths one can take on this that I wanted to talk to one of each discipline from three different cancer centers of excellence, so it became 9.

As to why I mentioned self advocacy is mostly from reading sites like this one, where so many people told me "urologists want to cut, oncologists want to radiate" (which was untrue in my case) and there are so many options, like TULSA, that I wanted to know the answers to. I had one chance to do this correctly. You read horror stories on these sites, I wasn't going to gamble.

This is just who I am. I don't just take news and wait for the outcome, I spend a lot of time and effort investigating every possible option and finding what, if anything, I can do to impact the outcome myself. When I got PC I was scared out of my pants, the thought of life with a dead fish in my pants and wetting myself was not what I considered "quality". I was literally booking professionals of all sorts, in and out of the medical profession, the day after I got my Decipher score and looked up what it meant.

Very helpful. Certainly the same path I took with my cholangicarcinoma as it is relatively rare to begin with. You need to do everything you can to find out info and advocate on your behalf with such a diagnosis--at least I felt I did.

I am getting a second surgical opinion on the nerve sparing pursuit. My urologist, who does do surgery, just not Davinci, said based on the location of my malignant cores (these are on the outer most interior location) that one side could likely be salvaged while the other may not. For the same reason you stated (quality of life), and while it may be true, it behooves me to verify this with a second surgeon at a center for excellence (research hospital Indiana University) .

Why did I go straight to surgery? You didn't ask but I'll tell you. Because when you are diagnosed with such a rare cancer and you are told up front it is stage 4 and incurable, and then you beat it, you learn to recognize miracles and not play the odds. I would much rather have the cancer out of me while localized to prostate than having it metastasize. Could radiation do that--certainly possible. But then there goes my shot at surgery if it comes back. Additionally, he was almost certain I would have zero incontinence issues. As such, when you weigh the pros and cons of all the procedures, consider your own perspectives and history, life goals, and combine with science it becomes easier.

Your comment on tackling any ED issues down the road is well understood on my end as well. Of the possible rehabilitation processes and treatments, I am perfectly happy to entertain all and 'deploy' as necessary.