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initial treatment question

FredNick profile image
33 Replies

I am posting for my husband. He is newly diagnosed and we have spoken to the urologist/surgeon only. We were told surgery or radiation were the options. The surgeon said he would remove the prostate, seminal vesicles and 2 lymph nodes. (Said these would be teated for cancer because although the scans were fine it is the only way to be sure). Gave us the option to talk to the radiation oncologist. We wanted to find out more so asked to speak with the RO and that appt is this coming week. Any advice/insight or suggestions on what to ask or even where for us to learn more would be great.

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FredNick
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33 Replies
Justfor_ profile image
Justfor_

Typical American. In Europe the surgeon would take out more than 10 lymph nodes depending on staging. I was Gleason 8 and they dissected 20 of them. In the US it is less than half, yours is on the low side even for local norms.

NanoMRI profile image
NanoMRI in reply toJustfor_

Based on my lessons fighting this beast, if lymph nodes are to be taken during RP, IMO the frozen section pathology method should be used, perhaps starting with the common iliac nodes. (As I share, I traveled to Belgium for this procedure during my salvage ePLND - my third treatment).

Here in the US it seems the tide is turning more and more against RP, with intent to treat this beast more as a chronic ailment and not so much as a disease - relying on ADT as primary treatment method.

Tony666 profile image
Tony666

can you let people know your specifics (eg psa, Gleason score, % of cores, health status, age etc)

FredNick profile image
FredNick in reply toTony666

To date had PSA 15, biopsy with five 3+3=6 and three 3+4=7 Gleason scores, CAT scan showed the prostate was enlarged and bone scan clear. Diagnosed in June. 58 years old

FredNick profile image
FredNick in reply toFredNick

Oh and general health status very active, exercises regularly including running and weigth lifting. Working full time. No health issues except has had kidney stones and a few polyps removed during colonoscopy.

Tall_Allen profile image
Tall_Allen

It is called "unfavorable intermediate risk" PCa. Radiation has a better chance of curing it vs surgery. Here are typical cure rates:

prostatecancer.news/2018/10...

Tony666 profile image
Tony666 in reply toTall_Allen

I thought 3+4 was “favorable” intermediate risk?

pd63 profile image
pd63 in reply toTony666

Might be the psa greater than 10, not 100% sure, I'm UK based and the parameters for fav/unfavourable are different

NanoMRI profile image
NanoMRI in reply topd63

IMO semantics when dealing with this beast. I was guesstimated to be favourable, turned out, unfavorable.

tsim profile image
tsim in reply toTony666

Not if you're out in the seminal vesicles, and since my PSA was in the 40s I was in unfavorable high risk.

Tall_Allen profile image
Tall_Allen in reply toTony666

"Favorable intermediate risk" has to follow ALL of the following conditions:

GS ≤ 3+4 AND

PSA<10 AND

T stage < 2b AND

< 50% of cores positive AND

at least 1, but no more than 1 intermediate risk factor.

Derf4223 profile image
Derf4223

Has he had a PSMAPET/CT scan yet? Highly recommended.

babychi profile image
babychi

Radiation (so far) has allowed us to return to a full, active, travel life! Incontinence was his greatest fear and he has not ever had that issue. Ask surgeon how many of his patients are incontinent after 6 months post surgery.

USAFproudmom profile image
USAFproudmom

My husband is similar in diagnosis and age, activity. We opted for radiation therapy. This has worked out well so far, no nasty side effects or anything. He finished treatments in September 2023 and last PSA test was .06.

Mgtd profile image
Mgtd in reply toUSAFproudmom

I echo the same results with radiation. It has been one year post radiation and PSA is .05. No lasting bad side effects. I only did 5 months of ADT. - 1 prior and 5 post.

Bruins11 profile image
Bruins11

I was in your shoes 6 years ago. Had RP and have been dealing with mild incontinence ever since. Also ED . I never checked out the radiation option as my surgeon told me RP was my best course of treatment. Big mistake on my part. I would suggest the radiation option if it’s found to be as effective as surgury. Good luck!

janebob99 profile image
janebob99

Radiation is the way to go, plus ADT treatment. Surgery has too many bad side effects, including erectile dysfunction, even with robotic surgery.

dhccpa profile image
dhccpa

Did he have a biopsy?

addicted2cycling profile image
addicted2cycling in reply todhccpa

FredNick wrote -- " To date had PSA 15, biopsy with five 3+3=6 and three 3+4=7 Gleason scores, CAT scan showed the prostate was enlarged and bone scan clear. Diagnosed in June. 58 years old "

dhccpa profile image
dhccpa in reply toaddicted2cycling

Thanks. I was going from the original post.

CarverD profile image
CarverD

I had treatment almost 4 years ago. HDRBrachytherapy for very similar diagnosis w/lower PSA score. All good, no side effects to speak of. Best of luck. You might want to check out inspire.com, ancan.org, yananow.org.

jethrotullag profile image
jethrotullag

Initial surgery recommendation. Is the urologist worried about metastasis? Did he mention a PSMA scan? Second opinion is absolutely needed. Glad you are pursuing the opinion.

Decipher genetic test of biopsy tissue?

Radiologists will have opinions on brachytherapy or beam radiation—local or whole prostate.

Has HiFU or other focal therapies been explored?

Glad the urologist did not use the "tired" argument that it must be surgery first as radiation makes surgery difficult. Archaic thinking 10 to 15 years old dies hard.

Was a CAT scan done or a PSMA scan done? Both are related. PSMA more precise for prostate metastases.

Best of luck,

FredNick profile image
FredNick in reply tojethrotullag

The urologist comment about PSMA…..

National guidelines recommend soft tissue and bone imaging for your risk of prostate cancer. KP guidelines utilize CT scan and bone scan. An alternative is PSMA PET scan. Neither one gives significant information about the cancer within or around the prostate.

What they can show is cancer spread to other organs. Fortunately, this isn't seen. Neither sets of tests impacts the decision making between radiation and surgery -- more curative versus non-curative treatment.

We talk with the RO this coming week. Hopefully, this will help us get more idea of options.

Urologist didn’t seem concern that it had spread but noted removal of the prostate, seminal vesicles and 2 lymph nodes would be tested to see if the cancer was outside the borders. Said the scans can miss this.

NanoMRI profile image
NanoMRI

Offering my insights, suggestions, and rare advice. I faced this decision and all the disparities/misinformation on this beast nine years ago. Sadly, it seems to be more difficult today.

I strived to not have surgery for all the fear mongering, but this became my best choice, based on findings from two multiparametric MRI’s indicating there was insufficient margins for radiation – all flavors. In addition to the genomic testing I had (before it was approved here in US), today I would be adding blood biopsy testing and imaging with PSMA, fluciclovine or Choline contrast agents. Also, I would be having lymph node removal using the frozen section pathology method (as I mentioned in my reply to Justfor_, this is very uncommon in US).

Based on my experience I am most grateful I had surgery. This said, I am sharing two concerns for your urologist’s comments: 1) removing only two lymph nodes 2) “(Said these would be treated for cancer because although the scans were fine it is the only way to be sure).

Removing two nodes, regardless of which two, is just not enough to verify spread or no spread. Also, there is no possible way to “be sure”, no possible way. No imaging will pick up all spread (six years ago I traveled to Europe for what is likely still “the best” imaging”). And no matter how many lymph nodes are taken there is no way this can assure all the cancer is removed.

I strive to not offer advise – but I am compelled to be direct; based on what you shared, I would immediately be seeking a different urologist.

Hope this helps. All the best!

WilsonPickett profile image
WilsonPickett

I had a 3+4 Gleason unfavorable intermediate tumor in my prostate 2 1/2 years ago. I saw two surgeons who were more than happy to remove it. There was no discussion of lymph nodes as pathology report claimed it was contained.

I went to the top radiation oncologist at Sloan Kettering and this is the question he posed: “if you knew that the outcomes were statistically the same between an invasive procedure and a non-invasive procedure, why would you choose to have the invasive procedure? “ After confirming, the claim was correct, I went with MRI guided SBRT. So far so good, although I think we will all look over our shoulders for the rest of our days. It comes with the territory. Best of luck to you.

NanoMRI profile image
NanoMRI in reply toWilsonPickett

I concur we all should be looking over our shoulders with this beast.

Being supportive of surgery, I ponder, unlike your two surgeons, your top radiation oncologist was not happy to radiate you?

And you were convinced the biopsy path report was 100% accurate on containment?

Surgery offers a final complete pathology and the means to test for <0.010 soon afterwards. Post my RP my 3+4 was determined to be 4+3 and within four weeks we knew my cancer had indeed gotten out.

pd63 profile image
pd63 in reply toWilsonPickett

Damned if you do damned if you don't, somewhat of a lottery either way

MyStarburst profile image
MyStarburst

Are you near a facility that offers MRI guided SBRT? My husband had a similar profile and was treated 18 months ago. PSA dropped dramatically and and side effects were temporary (he has a flare at 6 months post).

He also had a PSMA scan…clear…and a Decipher test (low risk). He did not do ADT. I would see a radiologist and ask about the scan and test. And results vs surgery. No need to rush…

tsim profile image
tsim

You made a wise decision. You should never rely solely on the opinion of a urologist.

Teacherdude72 profile image
Teacherdude72

I was 67 when diagnosed: PSA 20.6, G9, aggressive, ogolionedstic, good health, not diveticor smoker.Had discussions with surgeon and Chief of Radiology. Surgeon said would take some lymph based on his viewing & would not be able to do surgery if I had rdition first.

RO sid 25 sessions on IGRT followed by two sessions of HD Brachy.

She added that side effects for both treatments were possible but rad they oul be much later and surgery immediate.

In 2030-2023 I was on both Lupon and Nubeqa because osa rose to 3.0. while on those treatments osa dropoer to <0.02.

In Dec 2023 ceased both meds per To recommendation, and now PSA is 0.14

My suggestion is you choose and don't look back. Be Positive

CrackerOcala profile image
CrackerOcala

I had a similar cancer. My suggestion is to seriously check out all treatment options and likely side effects. I did and confidently circled back to radiation. That’s the short of it. Finished last week, dealing with some collateral effects but sure beats having a catheter etc. Was borderline for ADT, decided the benefit was marginal for the time being.

Xavier10 profile image
Xavier10

Seems like radiation has more advancements than surgery. I would favor doing radiation.

groundhogy profile image
groundhogy

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.

prostatecancerfree.org/comp...

It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

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