Hi all! My dad has Gleason 8 w/ Extracapsular extension and a suspicious looking spot on his pubic bone (was read by 5 radiologists) on PSMA. We've been to Hopkins, MSK, Dana Farber, Mayo Clinic for opinions and have gotten some mixed recommendation. 2/4 recommended considering surgery. I have read different outcomes but feel as though I have not read a single anecdote of a case similar (advanced disease with ECE +/- oligometastasis) where surgery has not ended up requiring salvage radiation and hormone therapy. If that is the case, it seems like taking on the side effects of all 3 therapies would not be a wise decision. Looking for any anecdotal evidence otherwise? We would seriously consider surgery if there was even a modest chance it could mean he didn't need the hormone therapy/salvage radiation, just haven't seen even one story that makes it seem remotely likely. We're stressed about the decision and would love to hear thoughts from the community, anecdotes, words of wisdom, etc.
Has Surgery Cured Anyone?: Hi all! My... - Advanced Prostate...
Has Surgery Cured Anyone?
Please see my bio. I am being treated at MSK. I did not have surgery but went with Hormone treatment , HDR Brachytherapy and External Beam Radiation. Almost 4 years since DX. Feel free to reachout to me.
If there is a bone met, he is looking at delaying progression, not curing him, by "debulking" the prostate. It is usually done with radiation, not surgery. There is a clinical trial at MD Anderson to see if debulking surgery is as effective as radiation. It would certainly have more side effects with a prostatectomy.
prostatecancer.news/2018/09...
Thanks! I think the docs that recommended surgery were not impressed by the bone lesion. What is your opinion as to whether it matters where radiation is done? How much is it operator dependent? We're debating having it done at a local center or if it's worth traveling to Mayo Clinic for it.
If the bone lesion shrinks on a CT scan while he takes ADT, it is prostate cancer.
He can use a local RO if he is experienced.
The indication of a single bone met with a PSMA PET/CT is very often a false positive finding. I would ignore that for now when deciding on the therapy. Important is the extend of the ECE. Is it infiltrating the bladder or the bowel? If not, surgery may offer some time without hormone therapy.
Here is a study elaborating on what GP24 says regarding single bone mets and psma pet/ct scans. It was helpful in my decision making process.
RP short-coming, besides finding a skilled surgeon that specializes in PC and the obvious chances of SE's, is progression outside the gland. With the findings that your father has I would be more inclined to investigate RT of some sort. Also, what's his age? Comorbidities? These 2 things are a large consideration in treatment with surgery as well.
He's 61, active and healthy otherwise. Any thoughts as to whether it matters where RT is done? Is it worth traveling to a center of excellence?
At his age and health status, I'd definitely go to a center of excellence. No matter surgery or RT. I elected RP due to urinary issues and the fact that I had 4 clear MRI's and 3 biopsies that gave me confidence my cancer was contained. I have no SE's other than lack of ejaculate. Also, no recurrence as of 40 months post treatment. I had 4 consults, 2 surgeons(high-volume, PC specialists)and 2 OC's(1 RO, 1 MO). I wanted HDR Brachy/Boost but due to my urinary issues, was advised against it. If I wasn't damn sure my chances of cancer being outside the prostate were minimal I would have still elected RT due to the SE's of RP. You can look at it two ways; I did my homework and picked the correct surgeon or I got lucky. Good luck to you guys and thanks for taking care of your Dad!!
To provide input to your question Is it worth it.
They are “Centers of Excellence” for a reason. They offer a comprehensive approach to care for ALL cancers.
Now ask is it worth the cost? Some people have money to burn and always choose the brand label over the generic brand. Others have “run of the mill” cancers that do not require the specialized care of a center of excellence.
A buddy and I live in the same town and were diagnosed at the same time with identical levels of cancer at the same place. He chose the “I want it out approach”. I choose the radiation track. He went to Mayo. I took the local route.
He spent a huge amount on room and board because he had both surgery and then followed by radiation and 6 months of hormone treatment. I had the same hormone treatment and radiation without the surgery and drove 30 minutes each day for 26 treatments. I drive my 30 minutes for follow up visits. He goes to Mayo for his. Six houses round trip.
So far the results have been identical but I feel the treatment was easier on me and my family and besides it did not impact my wallet.
So your choice generic vs brand treatment. It may actually not make a difference. ONLY YOU AND YOUR DAD CAN MAKE THAT DECISION.
I elected RP but also did a thorough research on RT for down the road treatment. My bottom llne: Go with the newest and greatest linac (at the time of this writing is the Elekta Unity). They will BS you with theories that it is RO that makes the difference and not the machine. Those that have the means to acquire the top gear have also the know-how to appoint the right personel as the driving team. You will not meet any air force cadets flying F35s.
I was diagnosed in November 2017 with Gleason Score 8, PSA 2.222, and extracapsular extension. At that time, triplet therapy was not the standard of care. My doctors recommended starting with ADT and chemotherapy, followed by surgery in May 2018. Their goal was to remove the “mother ship” to reduce tumor burden.
In 2022, a PSMA PET/CT suggested a possible recurrence, leading to a restart of ADT (for 24 months) along with 25 sessions of IMRT/VMAT radiation.
For unrelated reasons, I later underwent a total orchiectomy, leaving me with a testosterone level of zero—but my PSA remains undetectable.
Would I have achieved the same results with triplet therapy alone, without surgery? I’ll never know. But looking at where I stand today, I couldn’t be more grateful.
Thanks for your input! Triplet therapy is still not standard of care now for this level of prostate ca. What was your experience with the side effects of these procedures? Surgery vs. radiation? r/t incontinence and ED
I have had all three treatments modalities. The advantage about surgery is that it’s easier to monitor the PSA and not worry about if the prostate is causing any issues in the future, I guess but don’t take my advice, check with your doctors.
Once you have metastasis you are never cured even if you are cured It can always return.
Guys who are “cured” typically don’t share in forums like this, so it’s not surprising if you haven’t seen any. Every case is a unique journey, so he should trust his own personal choices based on inputs from the outstanding oncologists he’s seeing.
So many nuances to each of our stories. When I was dx in 2021 I don't think PSMA scans were widely available and I did not know about them to ask. I was also diagnosed Gleason 8 w/ Extracapsular extension and surgery was recommended. I had the normal pre-surgery bone scan (not as sensitive as PSMA) which showed something in my left hip (per report: focally increased uptake localizing to the medial left acetabulum which could be degenerative/arthritic in nature, though an osseous metastasis is also possible).
Follow up MRI indicated: "1. Mild left hip chondrosis and osteoarthrosis with cam femoral acetabular impingement type anatomy. 2. No evidence of metastatic disease to the pelvis." so I went through with the surgery and post surgery PSA had only gone from 13 to 3. Axumin PET indicated uptake in lymph node (SUV max 2.4) and left acetabulum lesion (SUV max 4.7).
Docs said it was not safe to biopsy spot in the hip, so I never got absolute confirmation my my Onc said it was likely metastasis. And so my advanced PCa journey began....
Greetings Keropi,
Has Surgery Cured Anyone? Yes, the doctor's past due mortgage and car payments...
BTW would you please be kind enough to update your dear Dad's bio. All info is voluntary but it will help him/you and help us too. Thank you and keep posting!!!
Note: Pca patients consider the word "Cure" a four letter word....
Good Luck, Good Health and Good Humor.
j-o-h-n
G8 diagnosed at age 69 in 2021. Elected RP after extensive research and second opinions. My reasons: I wanted the cancer removed. Wanted RT held in abeyance should I need it down the road.
My RP path report showed extra capsular extension with seminal vesicle invasion. My PSA went down to 0.016 around 6 weeks post op but then climbed to .37 at the 6 month period. PSMA PET revealed a solitary T8 bone met treated with radiation-SBRT. My PSA rapidly doubled over the next 4 months with another PSMA PET revealing a new pelvic node.
At this time I was looking at systemic therapy. Again, I did a lot of research and MO opinions. I found an article from Johns Hopkins titled "Total Eradication Therapy". Short version-in patients with limited metastatic disease (oligo) they treat the primary tumor in the prostate with either RT or RP, begin triple therapy (ADT, Docetaxel, Darolutamide) and 8-10 weeks after the chemo they radiate the pelvis. They published preliminary reports several years ago but now have a more expanded data base.
I immediate responded to the triple therapy with undetectable PSA.My Lupron was discontinued after one year. My T never fully recovered and I have been placed on TRT. PSA remains undetectable. The change overall well being with normal T again is night and day.
My understanding is there are MOs aggressively treating newly diagnosed oligo metastatic disease. It will be a number of years before published long term data is available to determine if this approach extends survival or even results in a cure in selected patients. A number of highly respected oncologists believe it might.
Good luck to your husband.
Treatment Decision: Now considering surgery
First steps for treating bone mets
Post Surgery Report :(
42 yr old prostate cancer
