First biopsy - transr or transp? Post-biopsy Decipher? - UPDATE
First, thanks again to all of you who responded to my first post (started 10/3). The comments were very helpful, and it's good to know there are others going through the same/similar thing who care enough to give advice.
I had my biopsy on Wed. (10/14). I think it went well. I had almost no adverse effects except for pain in the backside (using polite language) for about a day. The pain was not significant.
The results were unfavorable intermediate. There was one spot that was 4+3, involving 25% of needle core tissue, and measuring 2.5 mm, 2 mm, 1.5 mm, and 1.5 mm in length. Two other spots were 3+4, and one was 3+3. The doctor called us at home with the results. He said he would schedule a discussion. He also wants to do a PET scan and thinks that a combination of radiation and 6 months of ADT is the likely treatment option (although he did briefly mention removal).
He's already scheduled the PET scan, which seems wise to me (I'm scared of metastasis), and the discussion soon after that.
As I noted before, the doctor is resistant to second opinions and also resistant to getting a Decipher or other post-biopsy test. I asked one question about radiation: will they pinpoint the 4+3 (and perhaps other) spots? He said no - they irradiate the entire prostate. Is that normal? Also, remember, although there are other places (for a second opinion) in town, they are limited, and I'm concerned about upsetting the doctor. I also really would like a Decipher test.
Any tips on how to approach the doctor? Does the treatment plan sound reasonable, especially the part about irradiating the entire prostate? How important do you think it is to get a Decipher?
Thanks again!!
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Radiation is a pretty standard treatment for what you have. Yes, they always radiate the whole prostate and even some lymph nodes usually. You should ask the doctor about that, How many lymph nodes they will hit, if any.
Did they mention if whether or not the cancer was found in more than one spot than the prostate? If it’s all in one spot, you might do focal therapy, but I’m not sure it’s available to you.
Unfortunately, you live in a place where you can’t question what’s going on. If you don’t have the ability to go somewhere else and get a second opinion, then you’ll probably have to live with the doctor you have.
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3 ReactionsI am 4.5 weeks post-RP surgery.
You cannot worry too much about your Doctor not wanting 2nd opinions.
1. You need to find excellent doctors and treatment center(s). A general urologist who does some radiation and some surgical treatments may be a good doctor. However, I would want to be treated by a specialist for the different options. Travel long distance, if needed. The quality of the rest of your life is intertwined with the treatment decisions you will be making. Feelings of other people (like your doctor) are moved to the side, as you do what is best for you treatment outcome.
2. To evaluate radiation options, you want to find a great radiation treatment center with incredible radiation oncologist(s).
3. To evaluate RP options, best to find surgeons trained and have experience with Retzius and nerve sparing procedures.
4. I would insist on obtaining a Decipher (or similar) test. Good information as you weigh treatment options.
5. Prostox test is very valuable to evaluate possible radiation treatment. There are two different prostox tests. One for 20-40 day lower dose (per treatment) radiation and another for 5 day SBRT higher dose (per treatment). Obtain this test after you have consulted with the best Radiation Oncologist(s) you can find.
6. Genetic testing for BRCA or other genes is important.
7. Join the next Ancan meeting for your group. I think you would start with the low/intermediate group.
Best wishes
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Hug
4 ReactionsNormal to radiate the entire prostate and usually SVs. May include some lymph nodes especially if the percentage of type 4 was high. Were the 3 cores with type 4 in the same area of the prostate or different areas? Were any aggressive factors indicated in pathology report (you may not have this yet). Very important if Cribriform, IDC, etc noted.
The PSMA PET scan is the most important post biopsy test for 4+3. Decipher would be more important for 3+4 if considering active surveillance. If RT will be your treatment should get Prostox test to estimate chance of late side effects. The Radiation Oncologist can order this test (as well as decipher). If doing radiation, the urologist is not going to be designing the treatment, the RO will. You can also discuss the need for ADT, length and what agents (Orgovyx vs. Lupron, etc.) with the RO. You do not want to start on ADT until after PSMA PET and a treatment plan is confirmed. Also discuss use of spacer, fiducials, etc. with RO. These are usually placed by urologist. If you want to do RALP than you will need to find a surgeon that does that treatment. If the PSMA PET shows spread that will preclude RALP.
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4 ReactionsThe entire gland is irradiated, but a boost can be given to the lesions. Get a second opinion and Decipher. If you doc gets upset.....you have the wrong doc. When my wife had lymphoma her oncologist immediately sent her for a second opinion at a Medical College 3 hours away.
Stay Strong Brother, We Got This
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3 ReactionsI just finished radiation and it was the entire prostate. In fact, I'd say slightly more - the technician showed me the area after one of my treatments since everything is recorded.
Edit: the Decipher score is important. My PSA was 25, Gleason 9, PET Scan was clean the Decipher score provides another data point that can influence treatment recommendations. Mine was barely in the Intermediate range which is likely why the recommendation was 24 months of ADT.
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1 ReactionI'm going to chime in with at least what I found. The PSMAPETscan definetly can show at least where there is enough to measure any potential areas that have cancer, very reassuring for me since it was all contained within the Prostate. I also would look at ARTERAAI again very reassuring and provides two measurements one is a prognostic report and one is a biomarker report indicating positive or negative impact of adding ADT.
I had multiple of 4+3 a couple of 3+4 all on one side, the PSMA scan showed no seminal vesical, no lymph node, etc. ARTERA showed a 2.2% chance of DM (Distant Metastasis) in 10 years and a 1.0% risk of mortality. The ADT score came back negative indicating minimal added value of doing hormone treatment.
With that said the radiologist wanted to do either SBRT or IMRT and ADT. I I've opted for SBRT no ADT. This week I get a SPACEOAR and markers and am tentatively scheduled to start SBRT on November 2nd.
I think the ARTERA was another data point in my decision making along with having a very candid and thoughtful discussion with my Radiologist and her Resident.
Good luck and stay positive!
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4 ReactionsFor non-metastatic disease you should consider low dose brachytherapy (LDR-BT), a/k/a permanent seeds. The name is misleading because it provides the optimal dose if you 'fold in' the exposure time to the isotope's radiation which decays over 6 to 8 weeks. The external beam versions (SBRT, IMRT) have to be suboptimal because the gland must be targeted from various angles which go through healthy tissue outside of the gland. The LDR-BT radiation is confined to inside of the gland. It
is provided in 20-40 minute 'one and done' procedure. You will likely have to travel to get the best clinicians. I suggest going to the pcri.org you-tube sources for more information.
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1 ReactionI find it interesting that radiation is being preferred since the research urologist who diagnosed me suggested that for intermediate unfavorable I was better to begin with Ralp (surgical removal) so I could keep radiation in reserve for later use if and when needed. So far it is still in reserve at 4.5 years. As best I can tell based on what they found in the pathology once the prostate was removed I have about a 75% chance of biochemical recurrence, so I am grateful that that has not yet come to pass! AND while I wish it had been caught sooner I'm glad it had not metastasized at least so far as we know.
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