Help, bad Decipher results, this changes everything, please advise (NE WI area but will travel)

[AliceinW57]

Hi everyone~

I just wrote recently but this Decipher test seems to have up-ended our lives.

My husband, 75, overweight w/Watchman, was dx'ed late Nov. w/what was originally classified as Favorable Risk Intermediate after random biopsy; we went to a urologic oncologist out of Froedtert in Milwaukee (saw elsewhere, we live near Green Bay) and their take was Gleason 4+3 instead of 3+4 & noted perineural invasion. Dr. Sivaraman ordered Pylarify PET scan, which came back clean, and the Decipher. Weirdly, his most recent PSA had dropped, from 8.97 in late August to 5.13 (the urologist said it was the inflammation going down.)

My husband has been on a Foley due to retention that worsened after an infection and the BPH tests showed his bladder was still functional, so our working plan recently has been to look into getting a HoLEP for the retention and then do some form of RT, brachy, etc. for the cancer. We were very hopeful he could avoid many of the worst side effects of all this.

Well, this afternoon the uro onc, Dr. Sivaraman, called and told us the Decipher results show high risk of aggressive cancer. I haven't seen the actual report yet so all I know is he said the number was 90something although I see the scale is NOT 1-100 so I suppose he meant .9??? Frankly, NO ONE we have seen thus far has inspired us w/confidence...

We are stunned and feel our world has turned upside down. I registered him w/University of Chicago Cancer and a patient coordinator will call-tomorrow if possible. I want to see Dr. Scott Eggener who is a urologic oncologist and Director of the High Risk and Advanced Prostate Cancer Clinic there. I have watched videos and lectures with him and get a good feeling about his approach, skills, credentials etc. We have yet to see someone we feel we can trust and really need that, even if we eventually go somewhere else although presumably this now means SURGERY is our only option for BOTH the cancer and his median-lobe obstruction.

What we don't know is WHAT ELSE he is likely to go through now...will they want to do adjuvant RT and/or the dreaded ADT???!!! You know, it's bad enough at 75 to be told your life expectancy is <10 years but the prospect of suffering for a long, long time while you treat something you have no symptoms from is hard to face. He may not be trim or physically "fit" but my husband is still working (he just stopped full-time teaching last year but is subbing this year and in great demand for his Spec Ed experience) and we sail in the summer all over. His worst fear is not being able to do either soon and frankly, we should have moved several years ago as the taxes and maintenance where we live aren't supportable.

Anyways, I am just starting to re-tool the research to deal with this shock and need some guidance. IF MONEY WERE NO OBJECT, WHAT SHOULD WE DO??? MORE TESTSI??? WHERE SHOULD WE GO/WHO SHOULD WE SEE??? ARE THERE ANY NEWER TREATMENTS TO CONSIDER??? WHAT TYPE OF DOCTOR SHOULD BE OVERSEEING THIS?

Thank you all in advance as always; how do I tag Tall_Allen??? It sounds like his takes are invaluable.

God bless,

Jeri (Alice is just for here :))

Written by

[Tall_Allen]

(1) Get a 2nd opinion on the biopsy from Johns Hopkins. Don't muck around with other pathologists. Johns Hopkins is the Gold Standard:

pathology.jhu.edu/patient-c...

(2) IMO, PNI kicks his risk level up to "high risk" anyway. The high Decipher score just confirms that:

prostatecancer.news/2018/03...

(3) It's a good idea to rule out distant metastases with a PSMA PET scan. It may be difficult to get Medicare coverage with his current biopsy report. If not, assume it is still localized.

(4) Begin hormone therapy immediately. Check urodynamics now and in 2 months. If improvement, continue hormone therapy for 6-9 months. If no improvement, get HoLEP, and begin radiation in 6 months.

(5) Hormone therapy may include include apalutamide if he is upgraded to high risk and joins this clinical trial:

clinicaltrials.gov/study/NC...

Or darolutamide if he is not upgraded and enters this clinical trial:

clinicaltrials.gov/study/NC...

(6) Radiation therapy should be High Dose Rate brachy boost therapy.

Alvaro Martinez in Detroit can do the 1-day HDR brachy boost, and the external beam part of the treatment (25 days) can be done locally.

[ToolBeltZia in reply to Tall_Allen]

These are all suggestions of what Tall_Allen thinks is the correct treatment plan. I do not know if he is an MD with the appropriate specialty, but he certainly is not your MD. There should have been a disclaimer at the beginning of his post. The only people that can decide what is best for you is the doctors you finally choose, you and your husband.

[Cateydid in reply to ToolBeltZia]

Dear ToolBeltZia:

I’ve never heard TA suggest he is an MD, but he has provided my husband and me much better advice more often than any of the docs we’ve seen.

I appreciate that research IS what he does, while some of our docs don’t bother.

In fact, along the way, I’ve taken TA’s suggestions to our docs and they’ve adjusted my Joe’s treatment plan accordingly!

[ToolBeltZia in reply to Cateydid]

That is great. I just wanted to be sure you had your eyes open. I don't like I when anyone says "this is what you should do".Stay Strong

[AliceinW57 in reply to Tall_Allen]

Hi T-A,

Thx so much for yr swift reply! So I was upset last night and my post was all over the place, but a couple things:

Steve DID have a PSMA, with Pylarify, on 1-3. The main findings seem to be:

1.Diffuse, mild and heterogeneous radiotracer uptake throughout the prostate. No definitive focal area to correlate w/the patient's known disease. [So am I correct in assuming this means there aren't as yet "foci" of cancer? There are NO words in the report indicating tumors, cribriform, intraductal, expansile etc.]

2.Prominent left external iliac chain lymph node without significant radiotracer uptake. Continue attention on follow-up.

3. No evidence of tracer avid metastatic disease in the chest or abdomen.

Believe it or not, neither the urologist NOR the uro onc has literally gone over this report with us to explain things. We finally had a phone consult just a few days ago before the Decipher results came in yesterday; Dr. Sivaraman was clearly using a cell with glitchy coverage and we couldn't understand him that well, we repeatedly had to ask him to say whatever he had just said, again. He STILL hasn't put his 'review' of the test results in the chart, which is astonishing to me. And BTW, I had to REQUEST the Decipher when we met with him the 1st time in December [I think I asked about genetic tests generally] and he honestly didn't seem that familiar with it when he called, it was unnerving

II. So we know Dr. Epstein is not reviewing slides for Johns H, do you still feel they are the best?? Or should we wait until we meet with Dr. Eggener at UC and get his take...he is presenting at the 2024 ASCO Genitourinary Symposium this weekend in San Francisco.

III. This is beginner stuff, but WHAT TYPE OF DOCTOR would prescribe the hormone therapy???? A medical oncologist? We don't have anybody yet who has even brought this up (and I assure you, my husband does NOT want to do ADT but if he does, he needs a doctor he trusts) and so far, we don't have one. The urologist who DID order the random-core biopsy before we ever saw him has stuck to his assessment of the cancer as Favorable Intermediate because ..."I think that the overall approach works better and view this as a favorable intermediate risk prostate cancer" because he says Steve only has "one core that included a grade group 3 disease". He spoke rather dismissingly of our 2nd opinion visit w/an actual uro oncologist, Dr. Sivaraman, and defended his and the 1st pathologist's "under-grading" of the biopsy. So I just don't have ANY faith in this guy.

IV. Do I understand your post to be saying you DO NOT RECOMMEND SURGERY for my husband, think the ADT would help w/a MEDIAN LOBE OBSTRUCTION, and that he can safely delay other treatment including HDR brachy for several MONTHS despite the scary Decipher result??

Our understanding generally is that radiation is contraindicated because it would WORSEN the retention/obstruction; also, the uro onc said both HoLEP AND RT could cause urethral stricture which would obviously be counter-productive.

Thank you for any further help, T-A and others!!

[Tall_Allen in reply to AliceinW57]

I. Great news on the PSMA PET scan!

II.It doesn't matter whether Jonathan Epstein is at JH or not. His lab is still the Gold Standard. Eggener is not a pathologist.

III. The JH will definitively grade the biopsy.

IV. He can avoid TURP+radiation+ADT if he has an RP. And RP is reasonable if it is downgraded by JH. However, discuss the risk of incontinence with the surgeon. If he has to cut out the entire bladder neck, how will continence be preserved?

[AliceinW57 in reply to Tall_Allen]

I'm an idiot, but WHY would a surgeon cut out the bladder neck???

[Tall_Allen in reply to AliceinW57]

To eliminate the median lobe.

[KocoPr]

If i was you I would listen to TA. Not someone who has a gripe with him. Of course he isn’t a doctor. You’re not on this site to seek another doctor’s opinion your here to gather informative information from experienced warriors. Take this information study TA’s recommendation and present informative questions to your OC. TA also generally knows the best places/doctors/procedures around where you live. Good luck and keep fighting for your husband.

Oh and get on the medical portal so you can see all of your tests anytime including doctors notes/summary of visits etc.

[Scout4answers in reply to KocoPr]

I second what Koco says. Get a good MO at a center of exelence. Tall Allen’s knowledge is priceless. Knowledge is power.

Had my radiation done at U of Chicago by Stan Liau highly experienced I was his 1200th patient .

See my profile for details.

[AliceinW57 in reply to Scout4answers]

Thank you so much! Although we are seeing Dr. Eggener first (just got appt. made late yesterday for 2/19), if RT is somehow still on the table, Dr. Liau was my choice for rad onc!!!

[Scout4answers in reply to AliceinW57]

Another good oncologist at U of C is Szmalowitz who I have consulted with.

Maha Husien at Northwestern is one of the top MOs in country. She might be worth consulting with as well.

Not sure of spelling of either name ;-((

[lpol83712]

You can see different doctors at different places with different opinions. Statistically his greatest risk of dying in the next 5 years is cardiovascular (weight, lack of exercise, Watchman (? AF secondary to coronary artery disease?? Make sure his cholesterol, blood pressure is closely followed as all forms of ADT tend to worsen those and increasing doses may be needed. With his comorbidity Radiation is certainly the better choice. It will increase problems with urination. I have a somewhat similar history. I had moderate BPH but had urinary retention after prostate biopsy and after back surgery. A Holep can be done with the known diagnosis of prostate cancer which is what I elected. I had biopsies at Mayo read as Gleason 8 but downgraded at Hopkins to 4 plus 3 by one of the "guru" trained associates so it was hard to know which was correct which changed the duration of ADT for me. I am 78 without significant cardiac morbidity other than controlled hypertension. To keep things at bay while getting the BPH treated I started my ADT using orgovyx. which appears to have less cardiovascular risk and fewer side effects. I then had MRI directed SBRT at UCLA. I had a previous biopsy 10 months before the Mayo one that was read as Gleason 6 or 7 depending on lab and Decipher that was low. I was told repeat decipher wasn't that helpful so it wasn't repeated with the worse biopsy. My last and worse biopsy was read at Mayo with perineurial invasion and at Hopkins there was no mention of it. From my reading no one likes to have it but other places essentially ignore it . Even my first biopsy read at two other places had PNI read on one and the other specifically said there was no PN I so I personally don't place to much weight on it. There are several appropriate radiation options all with different proponents. Adding a second drug to the ADT appears to be in clinical trials and the push to add it would be the pathology and/or decipher. It doesn't appear that the second drugs add much in way of added side effects so could be considered at a center of excellence if desired. Adding a second drug doesn't appear to be a part of standard of care so it may not be universally recommended if you get several opinions.

[London441]

Agree that his overall health should be addressed and improved as diligently as possible. His cancer appears to be highly treatable. His ability to withstand the consequences of that treatment are much more in question.

TA’s advice is always driven by highest level evidence data along with some very extensive knowledge and expert ability to navigate to the best doctors. For that alone he is invaluable here.

[AliceinW57 in reply to London441]

Your sentence about "withstanding the consequences of....treatment' made my blood run cold. Reading bios on here, what everyone has been through, I have absolutely NO IDEA how we're going to navigate all this. Clearly this cancer is one where dying with it is terrible, but so is "living" with it.

The takeaway I'm getting is that, just as Dr. Scholz from the PCRI videos says, there are NO GOOD OPTIONS. I don't think, for example, that the risks to his cardiovascular health [we just had the Watchman put in last spring, for paroxysmal AFib, last spring!!!],his bone density, his sleep [he's always been able to sleep well, I've been envious for years],are worth the trade-off. But it's not up to me, although I, as the main support system, will go through it all with him,

I suppose we are still mourning the Loss of Normal when all he has wanted for 7 months is to pee again

[London441 in reply to AliceinW57]

Stay as positive as you can. You can be sure there are many of us on this site and elsewhere who are thriving with more advanced disease than your husband. We empathize. Each new challenge brings initial grave concern if not outright despair. Then we count our blessings, utilize the gift of modern medicine, and strive to enjoy what we can, so as not be a burden to anyone.

Your position is the toughest in a way, your feelings of helplessness are understandable unique to caregivers. Join a support group for them if so inclined. At the least I hope you have trusted friends and other family to talk to.

Navigate it one step at a time. No matter what path you choose, he should be moving as much as possible, CV issues taken into account. No amount of exercise is too much, done safely. It is his best friend and the one thing within his control.

Perhaps not helpful, but remember that 'loss of normal' at 75 not so long ago was to have been dead for a long time. Advancements in medicine are happening fast nowadays. Great luck to you!

[conbio]

TA is right on with reasonable options. I would only say that RP is not your only option. But your urologist and medical oncologist together should inform you of the risks, complications, and outcomes. The bladder issue is a weighting factor in choice of treatment. And for high risk PC the combination of ADT, brachy, and EBRT has better long term survival and less need for followup radiation than RP.

As usual, you will need to filter this all through your lens of risk and potential side effects. Take a deep breath and follow through with your health team. REALLY GOOD - clean PSMA!

Best to you.

[groundhogy]

besides holep, i think turp or greenlight are similar in that they cauterize as they remove tissue?