Pathology 2nd opinion

You are at one of the best care facilities in the world. I had my done at Mayo also. I had multiple areas with cancer with worse being 3+4=7.

You have not met with oncologist/radiologist yet which go over the results and treatments. In my opinion and please it is just an opinion not medical advise it would be good to have the appointments first then second opinions. This is what I did was to meet with Mayo radiologist/oncologist and then UFPTI radiologist/oncologist.

Can I suggest an important test to have as soon as possible? It is called a Decipher test. This test uses your already taken biopsies that are sent to Decipher which does a special lab test that does genetic testing on it and comes back with a low, intermediate, or high risk of metastasizing.

You probably have been told 3+4+7 is intermediate risk. This is what mine was. Then I had the Decipher test and came back low risk. This changed the treatment plan from hormone and radiation to just radiation. A good test to have prior to making decisions.

I had my biopsies done at Mayo Jacksonville but had my radiation treatment at UFPTI as Jacksonville did not offer proton radiation.

I think your reasoning is good. You are at the stage where you will have a lot of questions and worrying about doing the right thing. You are doing to get a lot of suggestions from MCC and all will say you need to make decisions that are best for you. You did not mention your age. That is important in deciding treatments along with any other medical conditions you may have.

Mayo can take care of sending the Decipher test for you. You just need to asked them to do this. My urologist referred me directly to oncologist/radiologist who suggested the Decipher test.

I know waiting is a great worry but most will say prostrate cancer is slow growing and you are not at a high risk Gleason Score is a intermediate one. If it were me (and that is all we can give is suggestion) I would keep your appointments coming up and asked for the Decipher test. In fact I I would asked for Decipher test now.

Then if you are in doubt or just want another opinion then get a second opinion. If you have your appts. you probably will also hear about PSMA test and bone scans. This two are also very important test to have when deciding treatments. If you have ever looked at a slide for prostrate cancer it shows normal, and abnormal cells it is subjective and that is why you will find different opinions.

Can I asked which Mayo you are using?

I agree with what jc76 said. I too had the Decipher test done and it makes a difference with doctors. If you have copies of your biopsy report, you might want to send them now to whoever RO doctor you or John Hopkins has chosen for a consultation. By the time you get to your November 20 RO appointment, you may or may not have already had a zoom/phone consultation appointment with John Hopkins. This way, you keep things moving forward and between the Decipher test and another separate consultation, you will have more information collected in a shorter period of time which may help you process the issues and your decisions regarding radiation or removal, or whatever, more comfortably.

I too, had 3+4, as well, confined to the prostate and had narrow margin (2 mm), 5 hypo fractional linac treatments in February. When you have your appointments, ask about the specifics of margins (healthy tissue treated outside the prostate) and the machine used, if you choose radiation. The more healthy tissue impacted, the more side effects that you may feel, generally speaking. Ask about spaceoar. My choice was first given to me by my urologist, radiation or removal.

@jamesharrison, I hope you saw the helpful posts from @jc76 and @bens1. Were you able to submit for a second opinion? Have you decided to postpone your appointments to give yourself time to consider your options?

Ms. Young:
Thanks for your helpful questions. Yes, I saw the helpful posts from @jc76 and @bens1 and I am going to reply to them after I write this reply to you.
Yes, I had Mayo Pathology send my slides and pathology report to Johns Hopkins on Friday for the second opinion. I will keep my oncology and radiology appointments because I have waited quite a while for them and they are the first time I am able to talk to a doctor about my diagnosis and treatment options.

@jc76, thanks very much for your reply to me. I’m using Mayo Rochester. Thanks for the info on Decipher; I will explore that.
I am 71 and in reasonably good health. I’ll keep my two upcoming appointments and see what they have to say after answering my questions. On Friday I had Mayo pathology send my slides and biopsy report to Johns Hopkins for a second pathology opinion.
If I may add, last week I attended my first prostate cancer support group at Mayo Rochester, and it was very worthwhile. Coincidentally, the presenter that day was the radiation oncologist I will be seeing November 20. The meetings are held monthly, and I encourage anyone with this disease (family members are also welcome) to consider going if you are within driving distance of Rochester. It’s great to know you are not alone, and much good information is shared.

@bens1, thanks much for your reply to my first Mayo Connect posting! I will investigate Decipher. I’ve done quite a bit of research already, and I am familiar with SpaceOar.
By the way, I am not doing anything with Johns Hopkins besides sending them my slides and biopsy report for a second opinion on the biopsy. They will send their report to me and to my urologist.
By the way, if anyone is not familiar with PCRI (prostate cancer research institute)—they are an excellent resource with dozens of well-made video interviews with experts, and they have a volunteer staff of people who’ve had prostate cancer or their family members, who are available to answer questions by phone or email.
Onward!

James: you’re welcome. You are clearly taking as many steps as you can to make the best decision for your own circumstances. Feel free to private message me if you have any other questions from my own “cancer adventure”. I am happy to help, where I can. Even after your decision, there are “in the middle of it all and thereafter experiences” that research and doctors help with but does not shed light on except through the eyes of a patient. Good luck and good health!

Thanks so much, @bens1, for your kind words and awesome support. By the way, how do I go about sending a private message to you?

James, as a new member, you'll be able to send a private message in a few days. We restrict private messaging to new members to prevent spammers from spamming the community. You can however receive private messages. @bens1, can send you one to get the private conversation started.

I would remiss if I didn't say, that by sharing on the forum, your messages benefit many, including current and future men diagnosed with prostate cancer. 🙂

Nevermind, @bens1— I see now the instructions for doing a PM!