An update and a question on treatment plan

waltk

I first posted last month when I was initially diagnosed with prostate cancer. The comments from everyone were very helpful. I finally saw the oncologist this past Friday (3/21/2025). I wanted to give an update on where I stand and ask what you all think of my oncologist's proposed treatment plan (knowing that you are not physicians, but other people who have gone through this).

Here is where I stand. After all the biopsies, scans, and bloodwork, I am at Stage IV-B with metastatis to multiple bones and lymph nodes. Specifically:

Primary malignant neoplasm of prostate (disorder) ( Stage Date: 03/21/2025, Stage IVB (cM1b, 5)-Pathological

Extent of Disease: Evidence of metastatic disease; Disease State: Initial diagnosis; Lymph Node Involvement: Retroperitoneal; Metastatic Sites: Bone; Gleason: >= 8; Histopathologic Type: Adenocarcinoma; Bone Scan: Performed; Gleason Score-Primary: 5; Gleason ScoreSecondary: 4; Gleason Status-Sum: 9; PSMA (Prostate-specific membrane antigen): Positive; ICD-10:C61 ;Malignant neoplasm of prostate

Gleason score is 9 out of 10, indicating a high-risk tumor. Grade group of 5

PET scan and bone scan revealed positive findings in lymph nodes and bones, including bilateral ribs, L2, L5, and multiple lymph nodes. There are also foci of increased activity in the neck, chest, T12, and extensive activity in L5. Multiple foci were noted in the retroperitoneum as well.

So, yeah, not good.

I do think my oncologist is pretty good. She does not have the best bedside manner, but she is definitely knowledgeable and experienced. I will take knowledge/experience over hand-holding any day. Her recommended treatment plan is essentially going at this all out. I have already started HRT (Lupron and Darolutamide). I am scheduled to begin chemo on 4/10 (Taxotere every 3 weeks for 6 cycles). Radiation therapy, particularly for the lower back, will be scheduled as well. Bone-strengthening medication (Zometa) will be added as soon as I get a current dental exam. She is also doing genetic testing as my father had prostate cancer as well. Unlike mine, his was caught early.

Given the severity and quickness of the spread, I do believe I should get treatment going as soon as possible. However, I did want a second opinion. My problem with obtaining a second opinion is that I am seeing my present oncologist through VA Community Care. I have reached out to my primary care and Audie Murphy VA hospital (which is about 2 hours from me) regarding a second opinion. Unfortunately, in order to get a second opinion, I would have to cancel my current community care oncology referral, get scheduled at oncology at the VA, let them do all of their scans, bloodwork, etcetera, then they can tell me what their proposed treatment is. If, after that, I still want to go with my current oncologist and her treatment plan, I would then have to cancel care with the VA, and start the referral process over again with Community Care. Jumping through those hoops will take a lot longer than I want (or even have) to wait.

So, I figured I would post this to the brotherhood. What is your opinion on my oncologist's treatment plan? Let me add that at least one of the lymph nodes is "in close proximity" to my jugular and another is pressing on my pericardium (sac around my heart). I do think her "go all out" treatment plan is probably the best way to go, but basing that opinion on just one source simply makes me a little nervous.

Any thoughts, input, or suggestions will be appreciated.

Thank you.

Walt

Clevelandguy

Hi,

Sorry to hear about your dire consequences, sounds like cancer has spread to multiple parts of your body. The choice is really up to you, I would still go for the second opinion just to check your 1st course of treatment. The chemo and ADT drugs will not eliminate the cancer from your body but weaken it. The combo of the ADT and chemo could really make your quality of life pretty nasty, but again thats up to you. If it was me I would go with the newest milder ADT drug(s) and radiation, ditch the chemo. From what I understand about ADT drugs is the cancer will learn how to live without testosterone so you might have to switch ADT drugs over months/years to suppress the cancer. But that’s just me and not possibly the best treatment for you. If the radiation and ADT does not do the job then another path would be Proton therapy. Proton can be used after you have reached you maximum dose of radiation to kill the cancer. The current forms of External beam radiation are very accurate which should help in your tighter areas. Good luck……

Dave 3+4

centralPA

The care offered sure seems right in line with what's recommended.

https://www.nccn.org/patients/guidelines/content/PDF/prostate-advanced-patient.pdf

I'd not go through the goat rope of all you described to get a 2nd opinion from the VA. A lot of churn and delay for them to point to the same NCCN guidelines.

Perhaps you could ask your doctor to get someone else at her practice to weight in? You really just want a warm and fuzzy that your course of action is reasonable.

I'd also definitely start digging around for trials that could potentially give you access to the next new great thing in care. You have a very serious case, for sure.

How is your health otherwise? @Clevelandguy 's comment on the chemo is on point. A tradeoff on QOL versus duration of life.

Wheel

i definitely understand trying to get your second opinion at no cost through the VA, but with your overall significant disease if you are financially able to consider gathering cd’s of all your scans (Pet, Bone, Ct’s), copies of biopsy and bloodwork and going out of pocket maybe $500.00 to get that opinion from a Doctor at a comprehensive cancer center if you have one close by. The Doctor can review all your existing material without ordering duplicate scans and bloodwork so you won’t have the thousands of dollars to pay out of market for those which is where the big money cost is and the cost is just limited to the Doctors visit.

swl1956

https://www.google.com/search?q=high+volume+metastatic+prostate+cancer+dr+mark+scholz&client#fpstate=ive&vld=cid:2d9e258b,vid:-jB1Ghs7d14,st:0

Walt,

I think this video by Dr Mark Scholz might answer some of your questions. Hitting it hard from the get go will likely give you much better odds of putting this disease in remission. My situation is not nearly extensive as yours but with spread to my lymph nodes (Stage IV-A) I was put on ADT immediately, after which Orgovyx and Zytiga /Prednisone has reduced my PSA in just a couple of months from 9.3 down to 0.32. Lupron and Darolutamide should have similar efficacy. I chose Orgovyx due to it's just a one a day pill instead of a shot. I'm also undergoing 40 pelvic radiation treatments. Anyhow, first and second generation ADT, along with Taxotere chemotherapy sounds like your VA doc is on the correct course. I believe it's referred to triplet therapy. Radiation treatments should also be more effective with the weakening of the cancer from the ADT.

Hang in there! As worrisome as this all seems, it's not a hopeless scenario

swl1956

https://www.google.com/search?q=high+volume+metastatic+prostate+cancer+dr+mark+scholz&client#fpstate=ive&vld=cid:2d9e258b,vid:-jB1Ghs7d14,st:0

waltk

https://csn.cancer.org/discussion/comment/1721875#Comment_1721875

Thank you. Very helpful. Best wishes on your continued remission.