Cancer Journey

JJclay

First of all thank you to everyone here that shares their experience and expertise. I have learned so much from this forum. Like many wives of husbands diagnosed with prostate cancer we become their biggest advocates and cheerleaders. Here is our ongoing story which started 13 years ago. My husband was diagnosed with prostate cancer after PSA's hit around 5 or 6. Standard biopsy at that time found the cancer confined to one side and gleason scores were 3+3 with one area 3+4. After looking at all treatment options he decided to have HIFU. I don't see that on this forum very often so thought some people might find it interesting. He had a hemi ablation performed in Bermuda by Dr Scionti scince at the time it was not approved in the US. Oh forgot to add that prior to the procedure he had another MRI guided biopsy with Dr Scionti. My husband chose HIFU because of the limited side effects and he was in his early 60s. We always knew the cancer could reoccur. But he still says if he did it all over he would still have opted for HIFU.

Fast forward to last year when PSAs started to rise. I won't go into all the numbers but went from 2 to 4 within 18 months. Meanwhile we have moved to a rapidly growing area with not enough doctors for all the people. He had to wait for a Urology appointment for 6 weeks and this Dr wanted to do an old school in office biopsy. Well, just no. When my husband requested an MRI fusion biopsy, this Doctor got mad (probably because he doesn't know how to do them) and referred my husband to another doctor- guess what? another several weeks for an appointment. Then another few weeks for the MRI and another few weeks for the biopsy. Nothing moves fast here. MRI showed adenocarcinoma 2 lesions both RAD5- one with seminal vesicle intrusion.

Biopsy -I will need to try to add the report, but the short version was most cores showed adenocarcinoma, gleason score 3+3 with no seminal vesicle intrusion. This doctor wants to do cryotherapy. We are a bit baffled about the wide disparity between the MRI and the biopsy. We ask for the slides to be sent to Johns Hopkins. Six weeks later we get the results. Most cores are still 3+3, but 3 have PI. And, OMG, one is 4+5 with extracapsular extension! How could the first pathologist have missed this??!! Doctor says he'll have his lab recheck that one result. Sure enough they now have an addendum on the pathology report saying they tested "deeper" and agree with Johns Hopkins findings. And this doctor still wants to do cryotherapy! Now, what worries us is that this is the fragmented sample that the local lab said had "benign" seminal vesicle tissue. Johns Hopkins worded it differently. "No definitive" seminal vesicle intrusion. I feel that they left this open that maybe they just didn't have enough tissue to say that there wasn't involvement. So, we have gone from first biopsy saying mild cancer (where that doctor wouldn't order a bone scan or a PSMA even though we asked for both), to now having an aggressive cancer. We have no faith in this doctor or the whole system here. We are scheduled to see someone at Duke next month. I'll feel much better with having them look at everything.

Old Salt

Yes, going to a 'center of excellence' is the right thing to do. I would want to know whether surgery is still possible and which radiation therapy they recommend.

Your husband's path is quite uncommon, but it looks like he had a good decade with respect to prostate issues.

Clevelandguy

Hi,

Got to agree with Old Salt on this one, you need another opinion from a very good cancer network that specializes in Prostate cancer. I would think a PMSA PET scan would be another tool needed to help you chart your next treatment path.

Dave 3+4

JJclay

Thanks Old Salt and Clevelandguy! Yes, we felt he was not getting the quality of care needed. I will update after the appointment at Duke. Hopefully the oncologist there will order the PMSA Pet scan we have been asking for.

JJclay

Also forgot to add my husband did ask for a Decipher Genomic test and the score was very low- so that at least is good news.

Josephg

One of our regular members here periodically states, "Great facilities plus great doctors give you the best opportunity for great results." This is as true today as it ever was.

JJclay

Thought I would update. Met with a medical oncologist at Duke who specializes in prostate cancer. They also rechecked the biopsies and got the same results as John Hopkins. PSMA scan scheduled for later this month. They are suggesting HT and radiation regardless as to what the PSMA scan shows. Then if the scan shows mets to deal with that as well. With 3 biopsy cores showing perineural invasion, and the 4+5 core with extraprostatic extension and possible seminal vesicle involvement they are concerned there is a chance there might be some local lymph node involvement, but we'll see what the PSMA scan shows. The doctors there were a bit appalled that the previous urologist wanted to do cryo. They suggested my husband should find another local urologist. Will update more when I look up what HT drugs they are recommending and after the PSMA scan.

JJclay

totally agree, Josephg!

Old Salt

The recommendation (radiation + 'hormone therapy') from Duke makes sense. I do hope that the PSMA scan will not turn up anything 'new'. You may want to find another urologist for the 'hormone therapy' or can this be done at Duke as well? Orgovyx is an option for the latter; no injections in a urology office necessary.

Steve1961

i agree my first PSA test 50 years old psa was 5.1. My doctor referred me to a urologist. He said let’s do a biopsy just to make sure I didn’t know any better. The doc said good news no cancer, but you do have a large prostrate.. well three years later PSA goes up to about 6.5. I think we should do another biopsy. I’m like damn that really hurt but I guess I better do it once again no cancer long story short later now I’m 57. My PSA is up to 7.0 another biopsy I said the heck with this I’m gonna see another doctor and what he suggested another biopsy I said OK and this time finds cancer . So going over the results with my doctor he looks at the first biopsy. The prick only took five samples second biopsy. He took six samples well the last doctor he took 12 which is the minimum maybe if the guy took 12 the first or second time he would’ve found it somebody’s doctor just like to make money off of you . maybe if I had MRI done the first time they would’ve found it really really early but you know what you need to have doctors know what the heck they’re doing I wish I would’ve gone to a big institute or foofled prostate biopsy Maybe it would’ve led me to a Institute and I would’ve questioned it MRI thing.

Oldernow

https://csn.cancer.org/discussion/comment/1717767#Comment_1717767

My story - Never give up -

Starting in the late 1990's, due to constantly rising PSA and a huge prostate, I had FIVE biopsies with 3 different urologists - none found cancer. After another jump in PSA my 2019 doc decided I should have an MRI which showed suspicious areas (PI_RADS 4). Again, a biopsy showed no cancer. A follow-up MRI in 2021 showed PI-RADS 5 areas.

My 2021 Doc sent me to a "specialist" who charged my insurance a bunch to meet with me for a few minutes only to tell me that he was unwilling to treat me (at age 76) due to the fact I had developed sepsis with a 10 day hospital stay after one of my many biopsies. He referred me to a doctor at Cleveland Clinic who FINALLY used the MRI results to do a targeted transperineal biopsy that found cancer (Gleason 3+4) with a Decipher score showing high moderate risk of spreading.

My urologist wouldn't consider surgery at my age so I was referred to a radiation oncologist. I was put on Lupron and completed 28 radiation treatments in June of 2023. My PSA remains undetectable (<.03) so it looks like the treatments kicked cancer's butt. I continue to be monitored - next PSA test is in early October.

It's been a hell of a journey…

Oldernow