Received G9 Biopsy

After my first negative biopsy, I switched urologists and the new Uro wanted an MRI. Insurance refused. A year later I was given a positive diagnosis after a new biopsy. At the time, insurance want approving MRIs unless you had a positive biopsy. Sound fami,iar? If I had it to do over again I would’ve insisted on the MRI even if I had to pay out of pocket. I asked about that, dr said not that important let’s just step up frequencies of PSA’s for now.

Taking the weekend off was a good idea. Just see how it goes tomorrow. Ask your urologist if you can be referred to both a surgeon and a radiation oncologist at IU-Simon and/or if a team would be assigned. That should get you some answers.

One of the reasons the PSMA scan is important at the diagnostic level is that it may detect if there is any spread at the local area (or further) which is something that would be really nice to know before selecting a treatment.

Surgery will remove the prostate and that is that although there should be some sampling of adjacent lymph nodes with your current diagnosis. A surgical scalpel is sharp and will remove tissue on one side of the cut and leave tissue on the other side of the cut. Therefore, if there is any cancer left outside the removed prostate, the cells could start growing again someday, or not.

Radiation is more like spray painting an area so there is not a fine line of treated area vs. untreated area so a better chance of hitting cancer cells around the perimeter within the margin aimed for.

Your current diagnosis is high risk G9 with "an MRI which showed a lesion with extracapsular extension" which means that a tumor has already breached the prostate boundary at some location. That leads to the question of how contained is the cancer and what is the risk of missing some with surgery? So a PSMA scan might tell you and your doctor if surgery is a viable option for your situation.

I had radiation after surgery due to my situation being worse after surgery pathology so you can have surgery followed by RT but most would say just go with heavy duty RT and skip the surgery related issues if you are going to do both. It all gets to be a long story but having a PSMA scan may help make the decisions for you and the doctors. They were not around at my time which was only 2018.

Yes, incontinence is definitely a concern. I have read it can be bad for quite a while after surgery and may get better, but I don't think that's guaranteed. Would certainly like to hear from those who have had the surgery.
Larry

Larry, Although I’m following this thread; I was in an entirely different risk group when diagnosed. I did find the prostatecancerfree.org site helpful in evaluating the various treatment options. That site gives you the option to compare treatment options by risk category. If you go there simply deselect all the options and add those that you wish to compare. Going to the “High Risk” group you can see the success rate of the triple play option is considerably higher than for surgery as a monotherapy. Even as a very low volume Gleason 6 guy my Urologist was ready to schedule surgery following my positive biopsy. What a terrible mistake that would have been for my situation. After following this forum since my diagnosis they’d little doubt in my mind that the ‘triple play’ offers less risk of side effects and a greater chance for a cure than surgery as a monotherapy. That said this is a disease where one size fits no one. I’m glad you’re here an evaluating all your options. You want that first choice to be the very best one for your particular situation. Best wishes…Terry

Terry's Cellar said...
...Going to the “High Risk” group you can see the success rate of the triple play option is considerably higher than for surgery as a monotherapy....

Men who have a high-grade or very high-risk diagnosis should be told upfront that surgery monotherapy is not standard of care if their cancer is not prostate-confined. In my case, I was spared both radiation and years of ADT following surgery, because my G9 cancer was prostate-confined (as it appeared to be before surgery). However, my surgeon explained that SOC required that I would need radiation and possibly ADT as part of my primary therapy if there were negative (adverse) findings in my RP report after the surgery.

**IF** your cancer appeared to be prostate-confined, the chances of surgery (RP) alone being sufficient to control your cancer would be, perhaps 25-30%. However, your MRI indicates there is likely EPE and your biopsy cores indicates a rather heavy cancer burden on the right, with lesions all the way from the apex to the base, increasing the risk of seminal vesicle invasion. If you consider surgery, you should ask your docs about the likelihood of needing radiation and, possibly, ADT afterward to complete your primary treatment.

The prostatecancerfree.org does not offer studies/statistics for the triple-play therapy of RP+RT+ADT, the surgical counterpart to IMRT+ brachy boost + ADT. IMO comparing RP alone vs. IMRT, brachy boost and ADT does not paint a realistic picture. Men who are very high risk/high grade should stop their primary treatment after RP only if post-RP conditions permit it.

Your insurance should cover a PSMA-PET scan, given your specific diagnosis. I would ask each doctor you consult with their opinion on a reasonable timeframe for you to make a treatment decision. From what I have read, I wouldn't be surprised if they advise no longer than 4-5 weeks.

Post Edited (DjinTonic) : 4/9/2024 12:55:42 AM (GMT-8)

P.S. **IF** further imaging does not reveal any positive regional lymph nodes or more distant metastases, you may want to discuss with your docs the benefits of having a Decipher test done. This test looks at the RNA of your particular cancer and tells you its risk of metastasizing within 5 years in the form of a score that will fall in the low-, average-, or high-risk range. You can have this test done on either:

(1) Your already biopsied tissue ("Decipher Biopsy"), if you opt for radiation therapy OR if you want the Decipher results to help you make a treatment decision. (The test can't be done on a prostate after it's been irradiated.)

OR

(2) Tissue taken from your prostate after surgery ("Decipher RP"), if you opt for surgery. This is the more accurate test.

Insurance should cover the test--your uro (or surgeon) takes care of ordering the test and having the tissue sent off if you decide you want it. If your workup imaging finds either positive nodes or metastases, there is obviously no point in having the Decipher test.

UNLESS you want the result to help you make a treatment decision, there is no rush to have the Decipher test done now--it can wait.

All the very best to you--we are here to answer your questions as best we can. Remember, we are not doctors, but we can bring up topics that you can research yourself and discuss with your doctors.

Djin

Post Edited (DjinTonic) : 4/9/2024 12:51:23 AM (GMT-8)

Yes, as a Gleason 9 patient, I agree with the logic outlined by halbert (and implied by several others in this thread).

The PSMA tracer PYLARIFY® (piflufolastat F 18) is promoted by a company, there are couple of other tracers as well.
https://www.pylarify.com/patient/resources
https://www.pylarify.com/site-locator

If insurance gives you trouble, give them a call and they may be able to help and assist with cost.

Did you discuss IU Simon with the doctor? My limited experience is the bigger cancer centers will do a better job lobbying on your behalf and should help get this through insurance. They will also have the most experience with the newer technologies and reading the results.

CT scans, bone scans, and MRI's are not very good in finding small amounts of prostate cancer nor are normal cancer tracers which is why the PSMA scan is a game changer. Doctors can quit wasting time with the "economical" scans and go to a scan that is designed to locate PCa. That does not mean another scan might find something (blind squirrel finding a nut) but a negative finding means little to nothing.

Michael_T said...
PSMA scans didn't exist when I was diagnosed, but I would have guessed that they would now be SOC for G9 diagnoses. It seems quite critical in terms of your treatment decision tree.

I'm not sure why your uro indicated that brachytherapy would not be indicated for your diagnosis, although I had an oncologist tell me the same thing. And then I ended up having brachy as one of my treatments. You'll get better info about your radiation options from an actual radiation oncologist.

Glad you're making some initial progress! Keep us posted.

If for whatever reason insurance declines the PSMA-PET scan, I would appeal the decision with the backing of one of his doc.
-----------------------------------
Yes, but brachy as a RT boost--AFAIK, it's not used a the sole RT modality for high-grade PCa.

I am a fellow G9, Stage 3.......PSA went from a 4 to 36.......the VA failed twice in taking biopsies 36 needles, 50 total) to find my cancer before they actually did by getting an actual Urologist involved. I attributed (these delays) to my ending up G9, Stage 3. Thankfully, it was still localized. It really rocked my world hard to get that news so I totally understand where your head is right now. Thankfully, I was aware I could ask for community care to get away from VA and I wanted UT-Southwestern-Dallas Oncology to handle my treatments. I decided against removal due to hearing stories of side effects. I did some homework and decided on brachytherapy in 2020. In April 2020, they threw the kitchen at me....HDR followed by 25 EBRT treatments. I only spent one night in the hospital. I was given Lupron for 2 years after radiation. Today, I'm still cancer free and still a patient under UT-Southwestern care. I stick get a bit antsy come PSA testing time but not as much as the first few years. So stay positive as many of us (G9) have been exactly where you sit today and still around. Modern technology towards prostate cancer has helped so many to survive much longer than many before us. .

Post Edited (WayneTX) : 4/10/2024 3:36:28 PM (GMT-8)

The PCa journey and the medical system will have many days that are not productive. It is like climbing a sand dune with weary legs. It never goes fast enough to satisfy anyone. Stay focused on the end goal to get your PCa treated with the best possible information available by the best doctors.

Your doctor said she would have you see a different urologist/surgeon and RO for treatment discussions. No reason that they cannot be at UI Simon when the time comes? That would be the obvious next question when you get to that point. Hang in there.

Haven't been on here for a long time, think I joined about 14-15 years ago when my father was diagnosed.

Just wanted to chime in and say he was diagnosed with some gleason 9, and some gleason 10, with some spread to the seminal vesicles. He was treated with Lupron, IMRT radiation and low dose of taxotere (sp?) chemo as part of a study. They cured him, has been in full remission for over a decade.

So keep spirits up, you can def beat this.