Just diagnosed looking for advice and your experience

mhreed39

Offically diagnosed with prostate cancer 6/21/24. PSA is 15.25 (up from 2.8 six months ago). PI-RADS 5 score from MRI. Biopsy score was Gleason 8 (4+4), Grade 4. 12 of 16 cores involved. Cribiform pattern present. Yes to Extraprostatic extension and Perineural Invasion. PMSA PET scan is being scheduled.

Have met with surgeon who believes surgery is best option. He will be taking both nerve bundles and lymph nodes. I have an appointment with radiation oncolgist next week to get a second opinion. I live in a major urban area so I have access to "centers of excellence" for what that is worth.

At this point I know my inital decision is surgery v. radiation but with a cancer this aggressive I worry that a second or even more round of treatments are in my future.

Looking for advice and what your experience has been with a smiliar situation.

Thank you

Marlon

mhreed, sorry to hear this. I am just a few days past surgery myself. Key question is what is your age and general health?

One of the reasons I chose surgery over radiation is because of what you mentioned I was told that it possible to do radiation after surgery if necessary, but much more difficult the other way around. As my doctor put it, there's a second bullet after surgery. For me surgery was getting rid of as much cancer as quickly as possible.

Clevelandguy

Hi,

With the cancer already at the barn door or maybe sticking its head out I personally would be cautious about surgery without a PMSAPET scan to see if the cancer has metastasized. I had pleural neural invasion and had surgery, so far 10 yrs. later I am still undetectable. I would also go with a second opinion from a different doctor/ hospital network for recommendations. In my humble non medical opinion you need to make sure you make the right decision to avoid problems latter on. Use those centers of excellence’s to get the best future. Some treatment options for a similar situation could be surgery with mop up radiation and ADT, radioactive seed implants with ADT(androgen deprivation therapy) are just a few examples. A good doctor team should help guide you through the best plans available. Write back once you get closer to pulling the plug, other survivors will step in with their experiences.

Dave 3+4

mhreed39

Thank you for taking the time to respond much appreciated. We are in the process of getting a PMSA PET Scan scheduled and there will also be a a gentic test done. .

mhreed39

https://csn.cancer.org/discussion/comment/1716215#Comment_1716215

Thanks Marlon, am 65 and in general good health except for hypertenison that is well controlled with medication. My Surgeon said he believed my age and health tilted the decison toward surgery.

MJH320

I agree with Clevelandguy; I'm surprised your doctor is talking about treatment plans before truly knowing if there's been any metastasis. I was diagnosed May 2024, age 70, good overall health, PSA 3.8 to 9.4 in one year, 8 of 12 biopsy samples showed cancer (four Gleason 8, one Gleason 7 (4+3) and three Gleason 6; balance benign), PSMA-PET showed no metastasis; MRI of Prostate showed tumors still within the prostate. Just visited with Johns Hopkins urologist/oncologist yesterday; said if there was metastasis, they would not operate. I've heard similar statements online. Sounds like you may be familiar with Dr Scholz (Pancreatic Cancer Research Institute)? I don't have a rich supply of great surgeons/radiologists everywhere around me (as apparently you do), so I'm trying to find my best option and still haven't decided between surgery and radiation, which is why I'm following these discussion boards. Greatly appreciate hearing of others situations and experiences.

csjchas

https://csn.cancer.org/discussion/328192/just-diagnosed-looking-for-advice-and-your-experience

Similar diagnosis here… 4+4 with crib. One year post surgery and PSA still undetectable. The scan before anything else is essential… mine was good. My PSA was 8 at biopsy and five weeks later… a week before my surgery it was 13.5. Makes me wonder if the needle biopsy caused a spike in PSA. But with how aggressive it was I wanted it out and fully expect I'll have more decisions to make within the next 12-24 months.

The side effects from surgery are real but I don't regret it. I'm 64 and just want to see my grandson grow for as long as possible. Please post again and ask anything you want from me.

Steve1961

i hate to say this but cribiform is said now to be radiation resistant.i am living proof six years ago I had PSA 7.2 score of 73+4 cribiform did radiation and brachytherapy.6 years later .psa started ro rise tumor is now 8 4+4 cribiform i had 2 surgeons tell me that cribiform is apparently radiation resistant now the POS radioogist still wont admit but its true …i am living proof I am recovering from salvage surgery as we speak cancer is right next to the marker where they targeted …

Stewartc

I hope this helps with your decision on 11/23 I had a PSA test it was 3.4 my previous test which was 2 years prior was 1.2 I was 69 at the time and I felt I was in good health you would think those numbers are good but I was always told to look for the jump which I had and I was concerned so I started to make appointments with specialist. I moved as fast as I could first appointment I could get was 12/ 14 /23. I live an hour from the University of Penn but I was going to Florida and made an appointment down there with the Cleveland Clinic in Weston. By 1/15/24 I found out I had prostate cancer and half my prostate I was a Gleason 4-3 I wanted the cancer out I made an appointment at the Cleveland Clinic in Ohio with a surgeon that did thousands of robotic surgeries of the prostate. Before I went out he wanted an MRI I've already had a CT scan and a bone scan after my initial visit with him I scheduled surgery he also wanted a PET scan after my pet scan it showed a spot on my sternum at that point there was questions on surgery I still chose to take it out they told me if I do radiation surgery could be a lot harder if needed later. And there was still a question whether the spot was cancer being going into this I had a PSA of 3.4 well on 5/16/24 I went to Cleveland and had my prostate removed I stayed in a hotel that was a joint to the clinic which was really convenient. Stayed there for about 10 days the test on the prostate removal showed some cancer cells on the last margin now we're assuming the spot on my sternum is cancer. So the first week of July I'm starting hormonal therapy I'm still struggling with incontinence but I feel some improvement but very frustrating I'm meeting with the radiologist about the spot on the sternum and hoping the therapy and radiation may be a cure good luck I hope this information helps your decision

John_R

I've heard everyone's Prostate Cancer is different, so I'm not sure how alike this is. I have a Gleeson 9, grade 3.5, some local lymph node incursion and also spread to a seminal vesicle and the bladder neck. I've had a radical prostatectomy and I'm about to begin 2 yrs of hormone treatment and also radiation. I chose surgery after hearing from both the surgeon and the radiologist, and doing research in "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer," which had very clear information on all forms of treatment, side effects, medications, etc. It is a good book. For instance, the book told me about a different medication besides Lupron shots. It's taken orally and has lesser chance of creating cardio problems (and the side effects go away much faster when you stop the treatment). My oncologist didn't mention it until I brought it up. She said it's wonderful, but insurance doesn't always cover it. I asked her to try for it, and the insurance is covering it. But if I hadn't read about it in the book I wouldn't have known to ask. The point being do as much research as you can. I chose surgery because, like some have said, I wanted it out and fast, and the side effects seemed more manageable that the side effects from the radiation that was being offered. I will be starting the beam radiation after the hormone gets going for a couple of months. My PSA came down to 0.12 after the surgery, which really pleased all three Drs treating me, but because of the aggressiveness of my cancer, they all think the follow-up hormone treatment and radiation is the way to go. And that being said, I don't know about the Cribiform pattern you mentioned, so take this as just my experience. In any event, I hope you come to the decision that makes the best sense for you to have a complete remission.

MJH320

mhreed39 - on June 24 you said you were going to meet with a radiation oncologist ‘next week’ to get a second opinion. Would greatly appreciate hearing what the RO had to say and where you stand with your treatment plan. I’m in a similar situation, but I’m 70, so I have a great deal of interest.

Also - what were the results of your PSMA-PET scan?

Thanks and continued best wishes as you move forward.

mhreed39

https://csn.cancer.org/discussion/comment/1716834#Comment_1716834

Thanks for asking @MJH320 and sorry I have not been back with an update. Things have been kind of crazy here. PMSA Pet Scan showed that there was a spot on my left arm of about 3 cm. that "lit up". Biopsy of the bone showed it was indeed prostate cancer and therefore a new diagnosis of oligometastatic prostate cancer and the staging moved from Stage 3 to Stage 4. Am now working with a medical oncologist and a radiation oncologist. Will do 20 sessions of IMRT and will be on hormone therapy for 2 years. Started hormone therapy this week, got my Eligard shot on Wednesday and started taking Abiraterone and prednisone on Thursday. This is the protocol laid out in the recent STAMPEDE clinical trial which showed good results. The docs are still talking cure vs. management which makes me hopeful. Am working hard to ramp up my exercise and revising my diet to meet these new circumstances. I have been at this now since late April when my PSA went through the roof and my thinking has gone from this is a bump in the road> this is a serious health concern>to "I have cancer and it's trying to freaking kill me" ! But I am staying positive so far though I know there are going to rough waters ahead. Thanks for checking in on me.

Josephg

https://csn.cancer.org/discussion/comment/1716837#Comment_1716837

I finished a very similar 2-year 3 drug cocktail (Lupron instead of Eligard) treatment protocol along with receiving SRBT for a local metastasis in my pubic bone. I finished the 2-year treatment protocol 18 months ago, so far, every 3-month PSA test has come back undetectable. There are no guarantees, of course, with any of these treatment protocols, and I live each of these 3-month intervals to the fullest with an acceptable quality of life.

I wish you the best of outcomes on your PCa journey.

Marlon

mhreed39, please elaborate on the bladder neck intrusion. Was that in itself difficult to treat, or just part of the overall IMRT and hormone treatment plan?

MJH320

https://csn.cancer.org/discussion/comment/1716837#Comment_1716837

Thanks for the followup @mhreed39; not what I was expecting to hear, but that’s where we are. Best wishes with your plan; very encouraging to hear the doctor talking in terms of ‘cure’! Looking forward to your updates as things progress.

MJH320

Very encouraging status update @Josephg after all you’ve been through. Best wishes for many more of the same to come.

mhreed39

https://csn.cancer.org/discussion/comment/1716858#Comment_1716858

@Marlon I did not have any issues related to the bladder or any kind of bladder neck intrusion. My issue with the cancer was that it had escaped the prostate and metastasized to at least one location (bone in arm).

Steve1961

so so sorry to hear that. Did you bring it up to the radiologist about Kapor being radiation resistant? I definitely would just to see what they have to say because like I said I’m living proof to see you go through all this for nothing just so they can make money off of you. Take care.