Former clinical prostate cancer research here...

What started your process? Urinary issues?

Honestly your age is a huge statistical red flag.

I've known cases / patients that had low Gleason scores and extremely agressive prostate cancer. Honestly, if there is chance of 100% cure, why not do it? Go to a surgeon that does a ton of procedures and you are more likely to not have the severe side effects.

What is your PSA?

Look into cyberknife.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:DH was in the same boat. He was 49 when diagnosed. He was convinced it was no big deal and he shouldn’t have it taken out. I convinced (coerced) him to do the surgery. The analysis of the removed prostate showed extensive tumors and they rated it a 9 instead of the original 6. See Dr. Partin at Johns Hopkins and do whatever he recommends.

Listen to her. It might not be slow growing when found at such a young age. Once it gets into your bones (where it likes to spread) it is not pleasant or easy to deal with.
Sorry that you have to deal with this - best of luck.

PP and OP - how did they find it?

PP - how is your DH’s quality of life now?

I’m PP. DH started to get up at night to pee. At first we thought it was just due to the amount of water he was drinking. He was training for an ultra-marathon. When it got to be twice at night he went to the Dr. They did a psa test and went downhill from there.

Quality of life is hard to determine. Being alive to see your kids grow up, etc. is big. Having to wear pads everyday and going from 5x a week sex to 0 is pretty big also. We are only 8 months out. Things are improving, it’s just slow.

So - is there ever sex again or does testosterone have to stay at 0 forever? Once the cancer cells are gone can he do hormone replacement?

I just entered menopause but I can replace some of what I lost. I can’t imagine being a breast or prostate cancer patient and having zero hormones, though I’m told that there are alternative meds for them.

It is nice to be alive. We just watched a relative die of prostate cancer (not treated appropriately until too late) and it was harsh.

PP here. His testosterone is normal. The surgery damages the nerves that control bladder and erections. Over time the nerves should heal, but it takes a while. Every week is better than the last. It could take 18 months to heal fully.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:DH was in the same boat. He was 49 when diagnosed. He was convinced it was no big deal and he shouldn’t have it taken out. I convinced (coerced) him to do the surgery. The analysis of the removed prostate showed extensive tumors and they rated it a 9 instead of the original 6. See Dr. Partin at Johns Hopkins and do whatever he recommends.

Listen to her. It might not be slow growing when found at such a young age. Once it gets into your bones (where it likes to spread) it is not pleasant or easy to deal with.
Sorry that you have to deal with this - best of luck.

PP and OP - how did they find it?

PP - how is your DH’s quality of life now?

I’m PP. DH started to get up at night to pee. At first we thought it was just due to the amount of water he was drinking. He was training for an ultra-marathon. When it got to be twice at night he went to the Dr. They did a psa test and went downhill from there.

Quality of life is hard to determine. Being alive to see your kids grow up, etc. is big. Having to wear pads everyday and going from 5x a week sex to 0 is pretty big also. We are only 8 months out. Things are improving, it’s just slow.

So - is there ever sex again or does testosterone have to stay at 0 forever? Once the cancer cells are gone can he do hormone replacement?

I just entered menopause but I can replace some of what I lost. I can’t imagine being a breast or prostate cancer patient and having zero hormones, though I’m told that there are alternative meds for them.

It is nice to be alive. We just watched a relative die of prostate cancer (not treated appropriately until too late) and it was harsh.

Anonymous wrote:

Anonymous wrote:DH was in the same boat. He was 49 when diagnosed. He was convinced it was no big deal and he shouldn’t have it taken out. I convinced (coerced) him to do the surgery. The analysis of the removed prostate showed extensive tumors and they rated it a 9 instead of the original 6. See Dr. Partin at Johns Hopkins and do whatever he recommends.

Listen to her. It might not be slow growing when found at such a young age. Once it gets into your bones (where it likes to spread) it is not pleasant or easy to deal with.
Sorry that you have to deal with this - best of luck.

PP and OP - how did they find it?

PP - how is your DH’s quality of life now?

I’m PP. DH started to get up at night to pee. At first we thought it was just due to the amount of water he was drinking. He was training for an ultra-marathon. When it got to be twice at night he went to the Dr. They did a psa test and went downhill from there.

Quality of life is hard to determine. Being alive to see your kids grow up, etc. is big. Having to wear pads everyday and going from 5x a week sex to 0 is pretty big also. We are only 8 months out. Things are improving, it’s just slow.

Anonymous wrote:DH was in the same boat. He was 49 when diagnosed. He was convinced it was no big deal and he shouldn’t have it taken out. I convinced (coerced) him to do the surgery. The analysis of the removed prostate showed extensive tumors and they rated it a 9 instead of the original 6. See Dr. Partin at Johns Hopkins and do whatever he recommends.

Listen to her. It might not be slow growing when found at such a young age. Once it gets into your bones (where it likes to spread) it is not pleasant or easy to deal with.
Sorry that you have to deal with this - best of luck.

PP and OP - how did they find it?

PP - how is your DH’s quality of life now?

No, your biopsy shows a small amount of slow growing cancer. The biopsy only tests a minute amount of tissue.

Thanks for the post. I had more than one biopsy. I had 15 samples during the first and 22 during the second. I feel that my doctor was able to test a material amouint of tissue.

The first biopsy was completely negative. However, after it I got an MRI and it showed a very small spot that could be (and was) cancer. I went in for a second biopsy and that is when my cancer was graded, etc.

Anonymous wrote:Thanks for the post.

My Gleason score is 6 and of the two core samples with cancer each sample had < 5% cancer in the sample. So, I have a small amount of slow growing cancer for the moment.

No, your biopsy shows a small amount of slow growing cancer. The biopsy only tests a minute amount of tissue.

DH was in the same boat. He was 49 when diagnosed. He was convinced it was no big deal and he shouldn’t have it taken out. I convinced (coerced) him to do the surgery. The analysis of the removed prostate showed extensive tumors and they rated it a 9 instead of the original 6. See Dr. Partin at Johns Hopkins and do whatever he recommends.

This link has a wealth of information and offers great support. Good luck!

https://www.healingwell.com/community/default.aspx?f=35

https://www.earthclinic.com/cures/prostate-cancer.html

Pls get all the info you can. prayers and hopefully you will get rid of the problem.

Thanks for the post.

My Gleason score is 6 and of the two core samples with cancer each sample had < 5% cancer in the sample. So, I have a small amount of slow growing cancer for the moment.

This is a bit of a difficult spot to be in being as young as you are. Unfortunately, the medical science is not very good yet about being able to tell which prostate cancer will grow out of the prostate and cause an issue and which will not. Do you know your Gleason score? You may want to consider watchful waiting but that can be anxiety producing knowing you have some type of cancer. There are other options besides prostatectomy. You could look into cyber knife or brachytherapy. My understanding is that while these may have some side effects, they are generally less than prostatectomy.
If you are local, Johns Hopkins has one of the best urology programs in the country and being T1 you certainly have time to go there and get a second opinion. If you choose to go there tell them when you see them you want options and plusses and minuses of each.
Good luck.

My grandfather started out there about 10 years ago (in his mid 80's). He just recently started a series of shots (3-4) that brought whatever score they check from in the 300's to 3.5 (I think under 5 is normal). Between the diagnosis and treatment he has zero pain, just started having issues peeing. We figured something else would take him this past 10ish years but no, he's still with us!

Have you or your S/O been diagnosed with prostate cancer when it was staged at T1C? Based on what I have read, this stage is very low risk and I do not want a prostatectomy for any number of reason (not the least of which is I am only 54.)