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The waiting is terrible: Husband has Stage 4 prostate cancer
My husband just got diagnosed with stage 4 prostate cancer.
This is how it started.... He's 55 and in good shape/ works out and eats right etc. The last year or so he's had urinary problems or frequencies and ED, but all of last year was super stressful, he lost his job and his parents passed away after he/we were taking care of them (in their 90s) He finally went to the doctor and thought he just had enlarge prostate etc and wanted it checked out. PSA was 251!! Then that triggered him getting a CT scan two days later and that showed cancer and in the lymph nodes (googled it and it shows stage 4 or 3), met with a urologist a few days later and he confirmed LATE stage prostate cancer (stage 4) but want to do a biopsy, which he got gone a week or so later and Gleason scores were mostly 8 and 9s and groups were 4 and 5s....referral to oncologist still, then in the meantime the PSMA PET scan two days ago and at night the results showed heavily in the lungs, lymph nodes, bones, skeleton, pelvic area etc...(again we google stuff and knew it was bad) we can't see the oncologist until 10 days from now! the waiting is terrible!!
We don't even know if they can do anything!!
The only symptoms are frequent peeing (or at least trying) about every hour and ever since this started I noticed a slight cough, nothing major but I immediately thought LUNGS (and was sadly right)
Just really sad....
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@jeffmarc
Thank you for the encouraging message. My husband has had high PSA numbers - 11-13 - for six months now, but the MRI wasn’t clear, and prostatitis was considered. We didn’t realize the cancer was diffused through his prostate. He saw Dr. Nabavizadeh at Duke, and although he said my husband’s cancer is aggressive, the PET scan (sorry, I did use the wrong letting) is a month from the biopsy. We requested the genetic testing, so we’ll see. I am so grateful for your words of encouragement, and I hope you are feeling and doing well.
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1 Reaction@scary1
While I got prostate cancer at 62 I am 78 now and have been undetectable for the last 27 months.. I’ve had surgery and then radiation and four total reoccurrences. The drugs we have today keep people alive way past when they used to.
Because I have the genetic problem, I have a drug to use when what I am taking now fails and I can also get chemo or Pluvicto When that fails.
Like I say a chronic disease. There are new drugs, coming out all the time.
@scary1
Just so you know, 11 or 13 is not too bad. At meetings I have been to I have heard of people that had 300 and 1500. At the Mayo clinic monthly meeting It was mentioned that they had people come in who had a PSA of over 20,000.. Many of the NCCN guidelines call for over 20 before certain treatments.
@jeffmarc
I read that PSA numbers can be low and deceiving with diffused cribriform cancer cells - the MRI indicated only inflammation because the cancer is like salt and pepper throughout the prostate. (I know I shouldn’t dive too deep in Google and AI.) Your story made me feel better, though. May I ask: when you were first diagnosed, was your cancer slow growing and contained?
@scary1
This definitely appears to be correct “ PSA numbers can be low and deceiving with diffused cribriform cancer cells”. There have been discussions on ancan.org in the last few weeks about cribriform And how to properly treat it, but this was never addressed in any meeting I have been in.
Must admit this is the first time I’ve heard about this. I think you saw me mention that large cribriform does upgrade the Gleason score to a five because of its aggressiveness. I don’t remember if you said that your biopsy was reviewed by Dr. Epstein, If so, he might’ve brought that up.
In 2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two and isolated to the prostate. 3.5 Years later it came back, I had a Lupron shot 2 months before 8+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 27 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 2.5 years ago. I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back, I’ve had four reoccurrences.
You should sign up with ancan.org. The next advanced prostate cancer meeting is on Monday at 5 PM Pacific time. It would enable you to get a lot of feedback for what to do with your case. If you got there about 10 minutes early, they would record your name and speak to you first and give you at least a half an hour to talk about your situation and advise you. They have been helping people for 15 years, There are usually at least three doctors in the room. They send out a newsletter every week that has some really great information about the latest discoveries. Just getting that alone is worth Signing up. They have a meeting for care partners a couple of times a month. They also have meetings for speaking freely twice a month, where men discuss their feelings about what’s going on, but not about their treatment.
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2 Reactions@becsbuddy Hi Becky. Your profile picture, was it taken at Mayo Clinic? I noticed a bell in the background, and I have read in several posts about PC patients ringing the bell after they completed their prescribed number of treatment sessions. Above the door frame, there are missing letters, but I figure the complete test is "Happily Ever After. Grow old along with me. The best is yet to be." Is that correct?
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2 Reactions@vircet Wherever it started, I think ringing the bell after finishing a round of radiation or chemo is nearly universal now, at least in North America. In Ontario, I know of it at two hospitals with major cancer centres that I've visited.
(I didn't ring a bell after my first round of post-op radiation to my spine, probably because I was still a paraplegic in-patient at the time and they were busy enough just trying to find enough people to lift me off the table and onto my stretcher, then order a porter to get me back to my room, but my friend did ring the bell at the same location after his chemo, so I know it exists.)
@vircet You can see those things?? No, not Mayo Clinic, it’s my kitchen. Now I’m going to hunt down the picture and see what you can see! And I see that someone has answered your question .
Nice to virtually meet you! Becky