looking for guidance?dad’s Biopsy diagnosis Gleason 4+4

[Cafu6]

Update on my dad’s biopsy results. Again, I am so appreciative of this groups response to my first post, I am interested in hearing any optimism (please! Hanging by a thread here), guidance… anything at this point. We are new to this “club” and just getting started.

Results:

Gleason score 4+4

12 cores taken, 6 had cancer

Clinical Stage T3b or T4

Type is adenocarcinoma

MRI said involvement of seminal vesicals

MRI showed lymph node “lit up”

The urologist is recommending radiation vs surgery at this point as they think it’s spread. They are referring him to Radiation Oncologist. He is booked for a bone scan next week, and the CT was ordered (will also get PSMA PET). After CT, they will start him on hormone therapy (I guess they don’t want to start it right now incase it shrinks cancer, making it less visible in the scans to check spread). They are also going to do genetic testing.

We are in Canada (Toronto area), but willing to travel to the US to a centre of excellence. Any recommendations? I know they (my parents) were interested in surgery (or whatever yields the best results), but sounds like it isn’t an option it has spread. What about da vinci robotic surgery? Proton ration therapy?

Thank you again

[Skippy3]

You can check out my profile. Regarding your dad, it is possible, likely, that it has spread to the bones. The bone scan will confirm that. If so, surgery is a waste of money and energy. Possible side effects like incontinence would not be fun. The cows have left the barn so to speak. The standard of care is ADT, Lupron + 1000 mg Abiraterone daily and 5 mg prednisone daily. Lupron will probably be a 3 month shot to see how he tolerates it. He may transition to Eligard, a 6 month shot after that. I've been living with it 3 years this month. I've lost 90% of my body hair. Loss of energy is a huge drawback. Testosterone is knocked down to very low values with this drug regimen. Exercise and weight lifting help battle the energy and bone density problems. My doctor is Dr Sartor at Mayo Clinic in Rochester, MN. He is world renown prostrate cancer doctor. I travel from Florida every 6 months to see him and get my Eligard shot. Right now there is no magic bullet. He would tell me.

Radiation is good for going after hot spots. If it's everywhere he probably needs to go the hormone treatment route. The PSMA PET scan will help identify where it's at. Good luck. You are welcome to contact me directly by chat then phone.

[Derf4223 in reply to Skippy3]

@Skippy3 Isn't SOC more like "ADT, Lupron + 1000 mg Abiraterone daily and 5 mg prednisone daily, /and docetaxel/"?

[GP24]

You doctors have the right plan and do everything that's available. No need to travel to the US for treatment.

[Justfor_]

Two to four weeks of Enzalutamide (possibly Bicalutamide) before PSMA PET/CT aids detection as cancerous cells put out more PSMA.

[Tall_Allen]

It is too soon to think about therapy. The bone scan/CT and the PSMA PET/CT will determine what comes next. If there are no bone metastases, and only pelvic lymph node metastases, it is still curable.

Where in Canada are you? Andrew Loblaw at Sunnybrook in Toronto would be my first choice there for a radiation oncologist, which is likely the next step.

[Cafu6 in reply to Tall_Allen]

Thanks for the info, right now he was referred to Dr Andrew Szehsun Chiang; however, I have been looking at different reports etc for Dr. Andrew Loblaw and I am going to try and get in touch/get a referral to him.

[babychi]

We are higher Gleason score and feel your pain however calm down and wait until PET scan results. ADT is awful for most men. But is is often recommended. Surgery is not a great option for high Gleason score. Targeted Radiation will probably give your dad great results like it did for us. 7 years since diagnosis and 6 years since 39 Radiation treatments. Dad needs you positive. A good Radiation Oncologist should allay your fears.💜

[Derf4223 in reply to babychi]

@babychi "ADT is awful for most men /who do not exercise./" There, FIFY

[babychi in reply to Derf4223]

Oh we exercised!! He said it was still awful! I saw and heard what results were and further research might show it is not necessary! I have not seen proof that limiting Testosterone is beneficial. The ADT treatment we had was Zoladex implant for 96 weeks. He endured it but maybe he did not require it.😰

[MarkS]

I was in a similar-ish position a few months ago, except I have Gleason 9 (4+5) and T2c/T3a. I opted for radiotherapy rather than prostatectomy with the da vinci robot, the more I read, the happier I am with that decision. I set out my reasons in the prostate cancer board. I had a PET CT scan and that evening started bicalutamide (Not before) for 1 month. After 2 weeks I had a prostap injection (leuprorelin) that lasts 3 months. This is ADT which is OK so far, 2 months in. My radio therapy starts in a month, I've just had a spacer fitted which helps reduce the risk of unintended radiation of delicate surrounding tissue. If the radiotherapy available is the latest, e.g. VMAT, then there would be less reason to use protons, in my view.

The best of luck!

[NanoMRI]

Because you are seeking ‘guidance’ and perhaps looking broad and wide, I am sharing further, hoping my experiences may offer a bit useful information in your search. Through my diagnostic investigations and consultations with independent multidisciplinary team I accepted my cancer was possibly spreading and I also accepted true ‘cures’ after spread are not very common. Being only 58 and otherwise very healthy and active, if it came to it, I wanted to defer/delay ADT/chemo/castration resistance for as many years as possible.

So, I sought wide range of guidance which took me beyond SOC thinking and approaches. I began reading extensively into purposes of removing tumor burden (surgery), including the seemingly rarely discussed procedure debulking (radiation and/or surgery). For me, and yes others will disagree, even strongly, I found surgery to be my first choice to remove as much tumor burden as possible; even though I faced likely risk of spread. Well, the RP did not get it all. After considerable deliberations I tried salvage RT to my prostate bed, no ADT. That did not get all the remaining cancer either, for it had spread further than docs had thought (guessed?). Before deciding what to do next, I wanted further investigations so I took what some would say was an extraordinary step and traveled from US to Europe for the Ferrotran nanoparticle MRI, at usPSA 0.10. That imaging identified suspicious pelvic lymph nodes; (note PSMA PET did not identify any cancer). Still not wanting ADT I again turned to removing tumor burden; salvage extended pelvic lymph node dissection surgery.

If I could do it all over knowing what I know today, I would seek out the procedure I learned about and had with the ePLND. Sharing as just a patient: at the start of robotic RP, knowing I faced risk of spread, the common iliac lymph nodes would first be removed and an immediate frozen biopsy performed. If cancer were found, as was in my case, the lymph node surgery would be extended. Mine went to the para-aortic nodes, where cancer was also found. Then the prostate would be taken. Yes, this is ‘unconventional’, especially in Americas, and I am absolutely not suggesting nor recommending this for anyone. Simply sharing my experiences, having learned, that becoming aware sometimes leads to what we are looking for, even when it is very different. All the best!

[Hailwood]

I made the decision to go with surgery after 11/12 cores showed cancer. Once the PSMA/CT scan showed lymph node involvement with distant mets, I have been on Erleada/Lupron for almost 4 years now, with some obvious side effects, but working full time at the age of 68, coming on to 69 in May. I agree with TA, that at this moment, you don't need to travel as there is excellent care here in Canada. Good luck with the journey and feel free to contact me if you have any questions that you think I can help with.

[SpencerBoy11]

4+4 dx 4 years ago. I had radiation and am on ADT. My urologist at the time had me get a SpaceOr which I think saved me additional damage from radiation. Very rare, the radiation can also cause myelodysplastic syndromes as it did to me.

[j-o-h-n]

How old is your dear Dad?

Good Luck, Good Health and Good Humor.

j-o-h-n