1. < Prostate Cancer

The waiting is terrible: Husband has Stage 4 prostate cancer

Posted by beaquilter @beaquilter, Mar 7 11:05am

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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beaquilter | @beaquilter | Apr 4 3:54pm
In reply to @sue678 "My husband was diagnosed with stage 4b prostate cancer last November. He is undergoing a triple..." + (show)
@sue678

My husband was diagnosed with stage 4b prostate cancer last November. He is undergoing a triple protocol treatment comprising ADT, abiraterone, and docetaxel chemo. His doctor told us that his cancer is treatable but not curable.

He just had his 4th chemo infusion and is struggling with side effects, such as nausea, constipation, mpsore mouth, and fatigue. It really hurts to see him struggle. But his doctor tells me that he can provide the medical care but my husband desperately needs support from his family.

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Yeah the chemo is what terrifies my husband! He can't do the second part (zytiga?) ADT pills because his liver enzymes are high....I'm hoping he'll do chemo soon to get some relief. He's weak now, tired, can only sleep about an hour and a half at a time at night, has pain other places too. I lost my mom a week ago and I'm dealing with that too, then thinking about losing my husband because he won't do the protocol treatment....life really sucks but I have my faith and know God will get me through it all.

REPLY
hikergal61 | @hikergal61 | 3 days ago
In reply to @beaquilter "We're going to see a urology something oncologist at UNC on the 17th... He came highly..." + (show)
@beaquilter

We're going to see a urology something oncologist at UNC on the 17th... He came highly recommended.
I'm tempted to try DUKE or Mayo here, but want to at least talk to ONE person first!
We really feel like it's so wide spread, I don't know if they'll even have an answer or just deal with symptoms.....

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You need to see an oncologist for advanced cancer, and not just a urologist. Definitely make sure you go directly to the right type of doc so you don’t waste time. With his widespread tumors, I think they might recommend aggressive systemic treatment of chemo.
Pluvicto works best for tumors in bones, but not as well for soft tissue tumors. Possibly ADT immediately, then chemo asap, then down the road, Pluvicto for remaining tumors. My husband is at the end of 6 years of numerous types of treatments.

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2 replies
beaquilter | @beaquilter | 3 days ago
In reply to @hikergal61 "You need to see an oncologist for advanced cancer, and not just a urologist. Definitely make..." + (show)
@hikergal61

You need to see an oncologist for advanced cancer, and not just a urologist. Definitely make sure you go directly to the right type of doc so you don’t waste time. With his widespread tumors, I think they might recommend aggressive systemic treatment of chemo.
Pluvicto works best for tumors in bones, but not as well for soft tissue tumors. Possibly ADT immediately, then chemo asap, then down the road, Pluvicto for remaining tumors. My husband is at the end of 6 years of numerous types of treatments.

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It's a urology oncologist

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1 reply
bobkowal | @bobkowal | 18 hours ago
In reply to @hikergal61 "You need to see an oncologist for advanced cancer, and not just a urologist. Definitely make..." + (show)
@hikergal61

You need to see an oncologist for advanced cancer, and not just a urologist. Definitely make sure you go directly to the right type of doc so you don’t waste time. With his widespread tumors, I think they might recommend aggressive systemic treatment of chemo.
Pluvicto works best for tumors in bones, but not as well for soft tissue tumors. Possibly ADT immediately, then chemo asap, then down the road, Pluvicto for remaining tumors. My husband is at the end of 6 years of numerous types of treatments.

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I had a prostaectomy, very thankful, no side effects and I have a penile implant that works great and I never have to be concerned about losing an erection, even after orgasm. My wife and I are very satisfied with it. I almost wish I had it 40 years ago.

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lag | @lag | 17 hours ago
In reply to @beaquilter "It's a urology oncologist" + (show)
@beaquilter

It's a urology oncologist

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A genitourinary (GU) oncologist is an oncologist who specializes in cancer of the genitourinary system, including prostate cancer. I think that is what you mean.

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