Biopsy results back finally and first step of treatment.

[FormulaRob]

Hi all,

I updated my profile for my father with all the info now that he finally has received his biopsy results with his first step of treatment. I don’t really have questions this time around but just sharing since so many people have helped me on this community and just want to lay out the info now as I never know if something could be of help to anyone in similar situations.

My 65 year old Father diagnosed with prostate cancer.

June 2022 he received a PSA test of 226.

September 2022 he had a CT Scan and a Bone Scan. Bone scan detected no spread to any bones .. spine was clear and pelvic bone was clear. The CT scan detected no spread to organs. Although it did detect a 10mm right external iliac node involvement.

Biopsy November 3rd 2022. Results: All 12 cores cancerous with 88% of the tissue involved by malignancy. This was a grade group #5 cancer.

First part of treatment: Firmagon 240mg dose to start followed 80mg every month to follow. After 4-5 months of this he will likely switch to a longer acting agent such as Eligard to decrease the frequency of his visits

All this testing and hormone shots have been done with a urologist. He will now be meeting his oncologist and radiologist for the first time next week. They will assess everything as well to best course of treatment.. and when to start radiation as at the moment the rumour is too large

[tango65]

If one pelvic node is involved you could discuss adding abiraterone to firmagon.

[FormulaRob in reply to tango65]

thank you tango I will mention him to ask his team about this too

[tango65 in reply to FormulaRob]

Some info from the Stampede trial

urotoday.com/conference-hig...

[Tall_Allen]

First job is to get a PSMA/PET scan. That will tell you whether the cancer is curable with whole pelvic radiation with a prostate boost, or whether he has the kind of cancer that will be maintained.

[FormulaRob in reply to Tall_Allen]

thanks Allen. He is meeting his oncologist for the first time today .. and then meeting the radiologist next week for the first time. I told my father to bring this up in his meeting today.

[Atdabeach in reply to Tall_Allen]

Hi Allen -

I should start a new thread on this, but because this case sounds similar to mine, I'm curious as to just what aspects would determine whether the cancer is curable vs. treatable?

[FormulaRob in reply to Atdabeach]

Once the cancer spreads outside of the local or regional area I believe it is no longer curable.. but treatable in that case. There may be exceptions but i believe generally. Let Allen respond though this is all so new to me and I am not at a knowledge level to give any sort advice right now.

If it spreads to lymph nodes in the surrounding area then I think it can still be stage 3 and possibly curable.

[Tall_Allen in reply to Atdabeach]

Whether it has metastasized outside of the prostate and local tissue (stage T2-4) or regional lymph nodes (stage N1). So, to be incurable, it would have to be stage M1.

[FormulaRob in reply to Tall_Allen]

They just confirmed that this has spread to my father to his lymph nodes, Dec 13th will be the next bone scan and CT scan.. with grade 5 and all cores being cancerous.. tumour is huge.. 88% cancer.. i assume at this point we can assume it has spread to bones.

I'm completely numb and in shock and fighting the urge to throw up despite not eating anything today.. Allen can you just tell me.. if it is stage 4 and spread to his bones .. is is still expected that they can treat this for many years? is the 30% 5 year survival rate really what we can expect. gut wrenching news today

[Tall_Allen in reply to FormulaRob]

There are several on here who have managed bone metastases for 10-20 years so far. Don't borrow tomorrow's sorrow. Your imagination is not your friend right now.

[FormulaRob in reply to Tall_Allen]

Thank you Allen. I am hoping for the best and trying to prepare for the worst. I just figure I may emotionally be stronger if I ask questions ahead of time rather than panic post on here the day of news> appreciate you

[Tall_Allen in reply to FormulaRob]

I've never found it possible to "prepare" myself. If it's bad, it comes as a shock. If it's good it comes as a relief.

[RayVarella62 in reply to FormulaRob]

Not necessarily. I was T4bN0M0. All cores 90%-100% cancer. Seminal Vesicle invasion. No spread outside the local/regional area. We are working on a cure using the STAMPEDE model. It's tricky when we assume anything with this disease.

[Hidden in reply to Tall_Allen]

I didn't know that, either. I was T3b. Thanks Allen

[TylexGP]

From my experience I would also suggest at some point to have genetic testing. My biopsy results were similar (in my profile) and genetic testing was positive for Brca2, mutation. I wish you well as you decide the best path forward.

[FormulaRob in reply to TylexGP]

Hey Tyler, I read your profile and initial biopsy sounds very similar. He has to do another CT scan and bone scan next month to see if any spread since he last did these tests in September. Nervous how fast it can spread in these 3 months.. assuming while on firmagon that the cancer will no longer spread ?

As for the genetic testing, this is new to me I will read up on this to see what benefits this brings and will have my father bring it up to his team

[strummer in reply to FormulaRob]

I agree re genetic tests. It can tell if certain treatments may work better and if it is hereditary. Important info for sons.

[FormulaRob in reply to strummer]

hi there, yeah my father is going to take this test. They recommended it to him too and they are setting it up

[rsgdmd]

Also consider somatic testing of biopsy sample to see if anything actionable, esp. if PET scan shows further spread.

[FormulaRob in reply to rsgdmd]

Hi friend, oncologist checked him today again and said the same thing other doctor said .. which is that he has to repeat all tests next month to see if it spread and then see what treatment. All tests involve CT scan and Bone scan. Not sure why they don’t use a PET scan if it is more accurate.

[WillowHawk]

So good to hear from you with all the details , treatment underway and oncologist too! Hugs xo

[FormulaRob in reply to WillowHawk]

Thanks Kate. Spread to nearby lymph node confirmed just now so it is definitely not curable. new bone scan and CT Scan Dec 13th to see if any further spread since the september scans. If so it will be stage 4.. and with any luck no spread to bones or organs leaving it at stage 3. as a group 5 cancer I am worried the new scans won't be very positive.

I really really hope it has not spread to his bones or organs in the last 3 months. but if it has i really hope that this would still be treatable for many years. I was feeling so positive and now completely knocked on my ass again. Time to wait and mentally prepare again for more tests

[WillowHawk]

holding positive thoughts for all of you. I’m briefer now as I broke my wrist but always thinking of you ❤️❤️

[FormulaRob in reply to WillowHawk]

Hope you heal quickly Kate thank you for the support ❤️

[Atdabeach]

Rob, as a result of comments on this thread, I started another asking about the topic of curable vs. treatable. I think you might find the comments helpful -- search "Plain English" ... .

[FormulaRob]

Hi fellow beach lover, appreciate that i will check it out now. The doctors did come back yesterday saying it has hit his lymph nodes so it will no longer be curable. That is bad news to hear but what is worse is that his CT and Bone scan which were done 1st week of September and came back clear....... need to be redone to make sure it has not spread further from 1st week september till now. (Firmagon started Nov 10th) so a full 2 months between september scans and first hormone treatment .. really hoping that is not enough time to spread to the bones. Now we have to wait for Dec 13th to do the new scans.. anxiety has me completely wrecked right now. I'll still read your new thread as i want as much knowledge as possible. thank you my friend