Seeking Hope or Similar Stories - Advanced Prostate...

Advanced Prostate Cancer

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Seeking Hope or Similar Stories

Darbydood profile image
13 Replies

Hello!

I just joined this community yesterday. My husband has been diagnosed with Gleason 8 prostate cancer with cribriform. PSA 18. His clinical dx is T1c. He had 6 out of12 positive biopsies. All were 4+4. 5 were 40% and 1 was 60%. He has the PSMA test on Monday. The doctor doesn’t think it has metastasized but I’m terrified because of the cribriform. Would he just be telling us that now so we don’t worry? I can’t sleep or eat and I’m a total mess trying to be strong for my husband. Any positive thoughts would really be welcomed and needed right now😢.

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Darbydood
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13 Replies
Avanat profile image
Avanat

There is always hope. You will hear from a lot of people here that have been dealing with advanced prostate cancer for years. I can just share with you our story.

My husband was diagnosed in March 2020 with Stage IV prostate cancer at his initial diagnosis. All 12 biopsy samples were positive for cancer and his Gleason score was 8 . The second opinion reading showed more 9’s than 8’s. With all 12 samples being positive for cancer we knew it was bad and likely already out of the prostate. His scans showed multiple mets on his bones and also several lymph nodes. We had consultations with 3 oncologists and they all said he had too many mets on his bones to be a candidate for any radiation and the recommended treatment was ADT and chemo. We elected to go to Moffitt Cancer Center in Tampa where my husband participated in a phase 2 clinical trial which was chemo (Docetaxel) and immunotherapy (Nicomulab a/k/a Opdivo). He had low PSA at diagnosis (3.8) and genetic testing showed no genetic abnormalities.

My hubby is still doing pretty well. He remains asymptomatic except for side effects from ADT. There is a lot more I could tell you about his journey but the main thing for you to know is that even if your husband has advanced prostate cancer he can live for years with it. There are so many different treatments available so if one doesn’t work, there are others to try.

I remember well the panic I felt when he was first diagnosed so I know how you must feel. Just being on this site will offer good support and more knowledge about this disease. Besides this site, I started meditation (which I had never done before his diagnosis). I am also in an advanced prostate cancer support group for spouses/partners via Zoom which helps tremendously. The main thing is to take things one day at a time and remember to take care of yourself too. I wish your husband good luck with whatever treatment he ends up doing. 🙏

Darbydood profile image
Darbydood in reply toAvanat

Thank you so much for your response. Just hearing from others in the same boat is comforting. Best wishes to you and your husband. I’m so glad to hear he is doing well after 4 years. At some point I may also try to join a spouse support group on line.

9020B profile image
9020B

I'm sorry you and your husband are having to deal with this. Most of us here know how you are feeling. Do not despair! It is possible that your husband can receive curative treatment. If not, you and your husband can still have many good years together with modern treatment. Just be there for him as you learn more about his diagnosis and treatment plan. This forum is a good place for you to be.

Darbydood profile image
Darbydood in reply to9020B

Thank you for responding! I can’t tell you how much it helps just hearing from others and the positive words of encouragement and hope

Worked_the_World profile image
Worked_the_World in reply to9020B

Goals and outcomes are elusive. When the sun breaks the horizon this morning (s) you are given a new day. Make it the best best you can and let go. See Todd1963's post. Bless you and give thanks for the day.

Dachshundlove profile image
Dachshundlove

hi Darbydood

My husband’s initial diagnosis was similar, he had mid-high grade 8-9 PC but his had metastasized and this fact was observable on his original MRI. His psa was around 20 at diagnosis.

He was metastatic to lymph nodes (external to the pelvis).

He had hormone therapy/ docetaxal/ carboplatin (2nd line chemo used for people with “repair defects” in DNA) / radiation/ abiraterone —In that order.

He’s doing well today. It will have been 5 years in May 2024. He’s off hormone therapy currently.

It’s a complex disease with many potential treatment paths.

You will get through the awful feelings of helplessness and despair as you better understand scope of the issue once the PSMA results are known.

It’s normal to feel how you are feeling. It gets better, even when the struggle continues. Going through PC with a husband can involve layers of loss depending on what treatments are needed and what side effects one is left to endure. Acceptance is the baseline we tend to settle back to, once we adjust to whatever the new normal is. It’s the old: “How does one eat and elephant? A bite at a time…”

I Hope the PSMA is as clear as can be. If not, know that there are plenty of treatment options. This site is great and it’s also all stage 4 people. Keep that in mind. The sample of PC sufferers here is skewed to the represent people in the biggest struggles as far as PC goes. Seek information and be brave.

Darbydood profile image
Darbydood in reply toDachshundlove

Thank you for responding! I love hearing that your husband is doing so well after 5 years! It gives me such hope. And talking to people on this site is comforting too. I think I need to join a support group to help me as well. Best wishes to you and your husband.

Tall_Allen profile image
Tall_Allen

Cribriform is no different in its riskiness to pattern 4.

Darbydood profile image
Darbydood in reply toTall_Allen

Really? Thank you! This gives me more hope. I thought I read that patients with cribriform 4 had more aggressive cancer than those with 4 with no crib.

MoonRocket profile image
MoonRocket

How old is your husband? I was 53 and dx'd G9 (4+5) myself.If I could impart some advice I learned in the last 4.5 years, don't search for information unless you really think you can handle what you learn. Other thing I did, once I recovered from my treatments, I moved my retirement travel plans to now.

Darbydood profile image
Darbydood in reply toMoonRocket

Thank you for the great advice. My husband is 65. You re right! I need to stop googling everything as it’s definitely not helping. It is nice to hear some real patient stories with good outcomes like yours. It’s an example of so many people doing way better than the sites posting the prognosis of the disease. Best wishes as you move forward.

j-o-h-n profile image
j-o-h-n

65? I'll give him 25 more.............(unless you decide to collect the Life Ins, earlier).

Good Luck, Good Health and Good Humor.

j-o-h-n

FMOH_N profile image
FMOH_N

Hopefully the PSMA PET was clear. It will be nice to hear how you and your husband are doing and what treatment is planned/taken?

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