Husband newly diagnosed

This is a great forum. It is populated by men and women who will be with you/husband through the entire process. Post questions/vent/ups and downs. We are here for you.

High risk men (G8 and over) are choosing surgery or radiation in equal numbers.

Studies have found that waiting up to six months to choose a treatment had no impact on later mortality. So, he should take the time to also consult with a radiation oncologist and a medical oncologist. In my opinion, never allow a doctor to describe a treatment that they do not provide. That’s like asking a Ford dealer about Chevrolet cars.

Two top books to buy would be:

Surviving Prostate Cancer by Patrick Walsh

The Key to Prostate Cancer by Mark Scholz.

We are in Oklahoma

Mindful of you and your husband ...

Yes, "the news" is tough to hear.

It triggers a whirlwind of emotions ... disbelief, anxiety, worrisome thoughts, fears, uncertainties ...

I remember that day -- DIAGNOSIS DAY.

Right now --- keep life simple, keep daily routines intact ...

Just focus on ONE DAY AT A TIME. Don't cross any rivers until you get to them.

You have a diagnosis ---- and the upcoming diagnostic scans you mentioned are proactive.

From there, form a bond with your medical team. They will put together a treatment plan. Second opinions can be very valuable.

You will see my case & treatment history below.

In my case, there was no time to lose --- and my treatments needed to begin immediately upon diagnosis.

You will have time to reflect and converse and consult with your doctors.

All of us here stand ALONGSIDE you. We are in this together.

A diagnosis leads to a treatment decision. Treatments bring HOPE.

Remember --- there's no substitute for the importance of family, friends, and faith --- in whatever form that takes for you.

When I was first diagnosed, and was awaiting further treatment results, I found that a walk outside really helped me.

Stay in touch with us here ---- we're rallied around you --- we're here for you !
CYCLONE ~~~ # Iowa State University

BWeaver, Sorry to read about your husband. You will encounter a lot of Gleason 8 and 9 guys on this Board who have been around a long, long time. I see you are in Oklahoma — my wife grew up in Tulsa. If you can swing the travel and maybe insurance issues, the absolute gold standard is MD Anderson. Major cancer centers do not do miracles, but they offer superb staff, deep benches, and more ready access to clinical trials. Best wishes.

I'm sorry about your husband's diagnosis--and such an early age to boot. You've already been given great advice upthread. I also heard the recommendation for surgery due to my age--I was 51 at the time. FWIW, I think there are a lot of valid reasons for surgery, but I'm not so sure I would list age as a significant factor.

As to bone pain and the possibility of your husband having mets--it's very unlikely with a PSA of 9, particularly mets to the point that they're pronounced enough to cause pain. Keep in mind that lots of things can cause back pain. On the subject of scans, Stephen S has posted some interesting info on the PSMA scan--if you have the means of getting to Houston that could be worth following up on.

FWIW, your husband's diagnosis is pretty close to mine. (I was also a G8 at diagnosis, that was unfortunately upgraded to a G9.) After 8 + years, I'm doing really well--I have no significant SEs and my PSA is low and steady. Your husband also has the potential to do really well. Good luck and I hope we can help you through your journey.

I believe the majority treatment recommendation will be surgery due to age. Be emotionally prepared for adjuvant radiation and other treatments. If he is stage 4, call Dr. Klein at Cleveland Clinic.

https://consultqd.clevelandclinic.org/metacure-trial-can-we-cure-more-oligometastatic-prostate-cancer/

ASAdvocate said...
High risk men (G8 and over) are choosing surgery or radiation in equal numbers.

Studies have found that waiting up to six months to choose a treatment had no impact on later mortality. So, he should take the time to also consult with a radiation oncologist and a medical oncologist. In my opinion, never allow a doctor to describe a treatment that they do not provide. That’s like asking a Ford dealer about Chevrolet cars.

Two top books to buy would be:

Surviving Prostate Cancer by Patrick Walsh

The Key to Prostate Cancer by Mark Scholz.

i honestly think it's a shame that high risk guys are choosing surgery in equal numbers to radiation. i am also in the camp that believes if you are high risk i would act quickly. there is no advantage to waiting.

Thank you to everyone who has responded & welcomed us so far. We definitely have a lot to learn and decide.

Hi BW. It goes without saying that all of us are very sorry you need to be here, but we'll do our best to point you to info that should help your huband make the best treatment decision for him. A few initial points:

I want to emphasize the importance of getting a 2nd path opinion on his biopsy tissue. As you may know, Gleason 8 is in its own risk Gleason Grade Group (GG4), so it really pays to either have this confirmed or perhaps regraded by an expert.

An important part of the workup for clinically signifcant PCa is to have imaging and other imput to form an initial impression (N.B and not a verdict) as to whether or not the PCa is currently confined to the prostate.

The relatively large number of positive biopsy cores may or may not be concerning in this regard because this was a targeted (plus, I presume, saturated) biopsy, so there were likely multiple cores taken in the same lesion(s). This is a topic you can discuss with your docs -- the number, size, and location of the biopsy cores, the percent cancer in each core, and what this all means for the likelihood of current spread (extraprostatic extension, seminal vesicle invasion, extension into fatty tissue surrounding the prostate, bladder neck invasion, etc.).

A follow up bone scan for the presence of mets will probably be advised, along with a CT scan. The latter can highlight any enlarged lymph nodes, which do not necessarily mean they are mets. (One or two slightly enlarged nodes were noted on my pelvic CT; however all 16 of my removed nodes were negative.) As mentioned, more advanced scanning such as PMSA-PET/CT or Axumin (18F) is superior, but may not be geographically convenient for you or may be declined by your insurance.

I had out-patient naso-sinus surgery today, but in a few days I'll link recent studies that make the case that surgery + RT +ADT and some combo RT + ADT have about equal oncological outcomes. This fact is in the the treatment guidelines from major prestigious institutions. However, for some men who opt for surgery and whose PCa is prostate-confined (which, please note, can be know accurately only after (!!) surgery), it is possble that both RT and ADT can be avoided. This has been -- at least up to now -- my case. Whether or not I will need RT and even ADT at some point is something I live with.

A note about ASA's stat about men choosing active surveillance, RP, and RT in about equal numbers. This may apply to G 6 (3+3) men, but it's misleading for others. A very recent study reported that a national database showed high-risk men (for whom AS is off the table) slightly preferred RP, with the trend increasing in the latter years leading up to 2016. But don't read too much into this, and please don't take my remarks about RP as my advocating it for your husband! I only want to balance the viewpoints about RP vs RT in our Forum. Two men with identical cancer situations can make diffferent primary-treatment choices, weighing factors differently for personally valid, reasons!

My uro/surgeon, in the first of two post-biopsy visits to discuss my treament choices, stated right off the bat that RP and RT were both options for my situation, I should take my time to make my choice, and he offered to set me up with a radiation oncologist.

BTW, just how old is your husband? I didn't see his age.

Please keep posted. We try to be helpful, but we, too also learn from newbies like you!

Djin

JNF said...
The age 51 should have nothing to do with favoring surgery over radiation. Radiation is safely used in many childhood cancers and in many cases favored over surgery. In some situations it is the only effective treatment.

And remember, about 35% of PCa surgeries fail and then need salvage radiation. The percentage is probably higher with the higher risk men like your husband.

JFN, I'm fairly sure it is much higher than that for high risk, but I would say the word "failure" may not be apt. I believe Dr. D'Amico said that Gleason 9 and 10 biopsy men should be told up front that if they opt for surgery and the final path shows even one of LN+, EPE+, SM+, or SVI+, they should think of subsequent adjuvant therapy (RT/RT+ADT) as an integral part of their primary treatment -- In other words, what the literature is now calling RPMAX, the counterpart to RTMAX (external RT + RT boost +ADT). (When discussing MAXRP with my uro/surgeon, he said he would add LVI+ to the other four adverse findings.)

Confirmed G8 seems to be in an adjuvant vs. salvage limbo, especiall in light of the three recent studies that lean toward early salvage over adjuvant to prevent overtreating while still affording similar ourcomes. From what I gather from Forum Brothers, some G8's opt for very early SRT, pulling the trigger at a PSA of about 0.1 or even just under, depending on the their specific, such as pre-op PSA, number and extent of post-op adverse features, and the dynamics leafing to their BCR.

Note that my comments exlude the case of persisent PSA (0.1 or higher after RP), which usually warrants adjuvant for any Gleason score regardless of any adverse findings.

Djin

In response to JNF question "Why use surgery at all," I can respond with my reasons for choosing surgery with little hesitation.

I had a G10 biopsy, but for several reasons I was fairly certain we had caught it early and that there was a reasonable change it was still prostate-confined. In other words, removal would give me a decent shot at stopping the cancer. However, RT and ADT would still be (and currently are) in reserve if and when needed. My uro/surgeon has very good outcome statistics for continence and potency (for which I am now evidence). He was able to spare both nerve bundles (prior to surgery he was reasonably certain about one side, but unsure about the other based on my workup.)

I was not happy with the toxicities associated with RT, nor the fact that I might not know the If and When of them for years. Nor did second primary tumors of the rectum or bladder excite me, however small the chances. I was concerned about metastasis formation in the period before primary RT exerted its full effect. There are a number of salvage treatments for failed of primary radiation does have salvage treatments, but to my knowledge, none of them have very good outcome stats. Among them is re-irradiation, which obviously ups the chances of bowel or bladder cancer. Then there is ADT, which is no walk in the park for many men, especially when it is long-term or even life-long. And the jury is still out on the question of whether ADT can cause cognitive impairment.

Again, I am speaking about high-risk disease in particular. It isn't cricket only to compare those of us who fair well after primary RT with those who do poorly after RP. I would again point to, say, the ASCO treatment guidelines for what they say about RP and RT for high-risk disease.

Djin