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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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I try to avoid the waiting mindset. I work hard to approach each and every day as a new and unique opportunity to live.
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3 ReactionsExactly, squeezing the most out of every single day one day at a time.
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3 ReactionsI have stage 4 prostate cancer. When I was diagnosed my PSA was 326. Extremely high. I changed my eating pattern and my last PSA was 1.10 after 6 months. I just completed 21 days of radiation. I’m also on Lupron and Erleada (apilutimide) . I do have hot flashes like no tomorrow but I feel that is a minor thing to put up with considering.
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8 ReactionsI had severe hot flashes for the first year on Lupron. As a hot flash was hitting I would feel a lot of fatigue. After a year, my oncologist prescribed a depo-provera shot every three months and it really stopped those hot flashes on Lupron. There are other hormones that can do this, speak to your doctor.
I know one person that says eating tofu every day really controlled his hot flashes, another person in this forum said the same thing. Can’t hurt to try it. Black Cohash is also said to help. Acupuncture works for some people.
I have an embrlabs.com wave product (wave 2). I’ve used it for Over three years now. It’s like a refrigerator that looks like a watch and sits on the inside of your wrist. You could set up one of the buttons for their night mode . Hit the button twice and It Produces cold waves at measured times during the night and prevents hot flashes and night sweats. They used to bug me, before I got this device . When you start to feel a hot flash coming on, you hit another one of the buttons twice and it sends cold chills through your arms and it reduces the intensity, shortens the life and can stop the hot flashes if hit quickly enough.
https://embrlabs.com/
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4 ReactionsA desk fan is a very good investment. Whenever you feel a hot flush starting, just sit down in front of it for a few minutes, and you'll feel much better.
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4 ReactionsI’ve used a little desk fan with a clip and it can also just stand on a flat surface. I can clip on something even an 1 1/2 or so inches thick. It is variable speed and rechargeable. Battery lasts for many hours, I probably end up charging it less than once a month.
If I get a hot flash I turn on my Wave 2 and the fan, if it’s close by.
When I just looked for the same thing on Amazon. It was almost double the price and now three speed not variable speed. Tariffs any one.
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1 Reaction@laffcris
Hello, my husband was just diagnosed with aggressive cribriform, Gleason 9 prostate cancer and we live in Chesapeake, VA. We have a SMAC PET scan scheduled for March 4 at Duke, but everything seems to be slow moving. Do you have any oncology recommendations based on your medical journey? The waiting is absolutely awful. My husband is 61 and I never thought this was possible. Thank you.
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5 Reactions@scary1 I feel for you and will message you privately.
I'm near chapel hill/durham. we go to UNC chapel hill and see a good oncologist there but I read that DUKE is good too.
If you want to text or even meet while down here, let me know.
We're a year into this nightmare and it hit me differently now actually, I think we were in shock for so long. My husband is doing GREAT btw so treatment works!
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9 Reactions@beaquilter wrote "… so treatment works!"
Yes, it certainly does. There are many of us here with metastatic prostate cancer who have been doing great for years, thanks to new medications and treatment strategies.
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5 Reactions@scary1
Your husband should have genetic testing since he got prostate cancer so young. I got it at 62 because I have a father that had it and a mother that gave me a genetic problem called BRCA2. If people and his family have had breast or prostate or pancreatic cancer, this could be genetic related. Do you want to know this because your children could have inherited it? Genetic testing is covered by insurance.
I think you’re trying to say you are going to have a PSMA pet scan. That’s the one people get to find out if cancer has spread in their body. The results of this test will tell whether surgery makes sense or should you have radiation or even triplet therapy?
A real good doctor at duke is
Duke
Dr. Dan George
I really highly respected oncologist in Washington DC would be a good one to see
Sibley Washington DC
Dr. Channing Pallor oncology
Dr Deville Radiation oncologist
Prostate cancer is very slow growing, so you are not going to miss out by getting a second opinion and spending a few months trying to figure out the best thing to do.
One thing people don’t realize is that prostate cancer these days is not usually a deadly disease. It is more a chronic disease.. I know many people with Gleason nine that are still around after 20 or 30 years.
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