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Prostate Cancer under 50 years old

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Posted 1/10/2018 7:27 PM (GMT 0)
Recent diagnosis with PSA of 34.9 and Gleason 4+4. Had RP and first PSA after RP 5.2. Second PSA 5.9. It had spread to seminal vessels but not lymph nodes yet. Scan shows clean on bones and lymph nodes but PSA steadily rising. The Urologist is telling us I don't need an oncologist just yet. I am only 47 and worried waiting is the wrong thing to do. Tried getting a second opinion but urologist took it personally. Will not give referral for oncologist. Any suggestions? Should I worry?
Posted 1/10/2018 7:35 PM (GMT 0)
Welcome to the forum.

You were diagnosed as a Gleason 8. That could be high risk disease. You didn't mention your post op pathology.

Your PSA after surgery is high enough that further treatment might be indicated. Despite what your urologist says, you would be wise to get another opinion. Start with a urologist, but find a radiation oncologist experienced in PC next. You probably need to talk about next steps.

More of our forum members should be along soon to add their advice.
Posted 1/10/2018 7:38 PM (GMT 0)
Post op path shows grade 4 high risk. Biopsy prior RP was Gleason 6 grade 3, but that was raised to grade 4 Gleason 8. We have called several radiation oncologists here and none will take him without the referral and the urologist is refusing at this time.
Posted 1/10/2018 7:51 PM (GMT 0)
That's interesting. I had made an appointment at Mayo Oncology without my urologists referral. You need an appointment and should make it your top priority.
Posted 1/10/2018 7:53 PM (GMT 0)
Yea..Scott not sure why you need a referral from the URO to get an RO appt. They are competitors for crying out loud! nono
Posted 1/10/2018 7:55 PM (GMT 0)
With your high risk profile high PSA following surgery, I would be looking for a true prostate cancer medical oncologist as well as a radiation oncologist that specializes in PCa.

As for the urologist and his attitude about second opinions, I would fire him/her. You are in charge not him/her. I have always put right up front with every doctor I have ever seen that I will always seek other assessments for anything major or that I am not convinced of. If this is a problem then I will find other doctors who are more open to my needs and concerns.

How long after RP are these PSA reading? If you are 90 days out they should be undetectable. Where are you located? You can call most any large practice or center of excellence cancer center and get a consult without a referral.

Should you be worried? I would be. You are very high risk at a very young age. It looks like surgery wasn't successful and that would end the job of the urologist. Has he discussed Androgen Deprivation Therapy?
Posted 1/10/2018 8:03 PM (GMT 0)
I agree with JNF, first Fire the Urologist! You are in charge of your health.
Call your Insurance Co and ask them if you can go to any Dr of your choosing without
a referral. If no, find a Urologist that will give a referral, if yes, as was suggested...go to
a Prostate Cancer Specialist of your choice.
Sounds like you need to get moving with a medical team that you trust and has your best
interest in mind asap.
Mike
Posted 1/10/2018 8:19 PM (GMT 0)
Micah68, is there still a group for T3 people?
Posted 1/10/2018 8:29 PM (GMT 0)
Scott, I don't know where you live but with post op numbers like that you need to hook up with a radiation oncologist pronto. You no longer need your urologist and if he doesn't want to refer you to a radiation oncologist with those numbers you don't want him. I know the Mayo Clinic system would look at you with those statistics don't know your insurance situation and how long ago you had surgery you might include them in your signature but just going from my personal experience you should probably already be on some sort of ADT! And yes to answer your question you should be worried! PCA is a slow growing cancer but with numbers like that if it is still possible you want to try to stop it before it metastasizes. Wishing you the best and keep us informed

Larry
Posted 1/10/2018 8:37 PM (GMT 0)
Scott—
Everything Larry just said 3 minutes ago!
Whenever a doctor takes offense at a second opinion, it’s time to leave.
Anyway, stop reading and start making calls.
Posted 1/10/2018 8:59 PM (GMT 0)
I'm not a doctor, but I think you need to find a radiation oncologist or a medical oncologist. Clearly, surgery has not been curative for you if you have had two post surgical PSA readings that were that high. You need to take control here, not your urologist.

A few questions: 1) can you post details of your post-surgery pathology? 2) What type of insurance do you have and do you need a referral or can you self-refer 3) What part of the country are you in since we might be able to make a recommendation on who to see.
Posted 1/10/2018 9:04 PM (GMT 0)
Progressing,
At one time there was probably 25-30 people that showed interest.
I think it would be great to have a group...I don't know how to set it up, do you?
Mike
Posted 1/10/2018 9:06 PM (GMT 0)
We need to start new thread, Scottomus needs this one for his answers/info.
Mike
Posted 1/10/2018 9:07 PM (GMT 0)
Scott,

Take the good advice here and do not settle. Here's why:

I am 49 and was diagnosed with Gleason 9 and multiple margins. I initially went to a satellite clinic for oncology. The doctor was going to wait 3-4 months, perform radiation, and then perhaps hormone treatment. On advice from a good person here and my wife, I went to the main campus and saw a different doctor. With the first one, the remaining cancer would have continued to grow for another 3-4 months. I fear it would have spread. With the second doctor, I left his office with a 6 month lupron injection that made the cancer dormant (as proven via later PSA testing).

You can't be shy. Dump that urologist.
Posted 1/11/2018 1:20 AM (GMT 0)
Scott,
You need to be your own advocate. Any doctor that won't give you a referral or who takes offense because you want a second opinion, should be fired. Get rid of that guy. A friend of mine was my urologist. He said surgery right away. I said I was going to the best in the area. I really don't care that he took offense. It's my life and I wasn't going to have some urologist carve me up when radiation was called for in my case. i didn't need a referral. I contacted MSKCC directly and they got me set up to see surgical and radiation oncologists. Both agreed radiation was the treatment plan for me. Your insurance may require one, so find a urologist in your plan and get a referral from them. Or call your insurance company and try to get them to let you see another doctor.
Post where you live and some of your details. You can get more info on here with details posted.
But first, fire that "doctor"

Post Edited (Dogdays) : 1/10/2018 6:23:35 PM (GMT-7)

Posted 1/11/2018 1:30 AM (GMT 0)
Scottomus-

Where are you located? In the US on an EPO plan you would not need a referral. However, in some countries (e.g., UK or Canada) they may require a referral, or if you belong to an HMO they may require a referral.

Perhaps you can talk to your PCP about a referral to a radiation oncologist. I don't see why the referral has to come from a urologist - urologists often get in the way of timely salvage radiation treatment.

If you mention your nearest large city, we may be able to recommend someone.
Posted 1/11/2018 9:58 PM (GMT 0)
I fear for Scottomus.

I am 21 months past ART and still flat lining at 0.1. Going back to Uro Onc tomorrow for six month check.
Glad we won't have much to talk about. Should I be getting ultra-sensitive PSA tests?

I would enjoy a T3 group.
Posted 1/11/2018 10:53 PM (GMT 0)

Brook58 said...
Should I be getting ultra-sensitive PSA tests?

No, because there is nothing different you would do with the extra decimal point.
Posted 1/12/2018 2:11 PM (GMT 0)
Thanks T.A.
I appreciate reading your knowledge here.
At this point, in my case, what should my Uro Onc and I be talking about?
Posted 1/12/2018 3:48 PM (GMT 0)
Well finally got the referral. When the radiation oncologist reviewed the records he couldn't get me in fast enough. What I have is Persistent PSA believed to be microscopic Metastases probably in the bones or a higher distant metastases and it is not curable. Treatment by radiation and hormone therapy might buy me a short amount of time, but at what cost? Pet Scan next to see if any distant areas reveal itself since lymph nodes show clear and bones clear so far, and if nothing it is likely in the bones in a microscopic level but at a high degree and in time it will be prevalent on scans. Then the big decision, to try or to not try. Either way the end result will be the same.
Posted 1/12/2018 4:06 PM (GMT 0)
Scott...so sorry to hear about your update! Your are in my prayers brother! TA or some other vets may give you some words of advice, but I can only give you good thoughts and prayers! Keep positive, stranger things have happened! There are some miraculous stories circulating around here!
Posted 1/12/2018 4:51 PM (GMT 0)
Scott,

You would seem to have an uphill battle ahead. However, this forum has a number of members who have G8 and G9 disease, but are doing fairly well years after their initial diagnosis.

One of our members will hopefully add you to the subgroup of high risk members.

Don't give up hope. Good luck!!
Posted 1/12/2018 4:54 PM (GMT 0)
Scott,
Get a medical oncologist specializing in PC now. That high of a psa post op is an indicator of systemic mets. radiation will be of little use in that case. You need a PET scan to identify either a local occurrence or systemic mets before you do anything else.
Posted 1/12/2018 5:08 PM (GMT 0)
Scott...glad you got into the RO and have the Per scan scheduled. You mentioned hormone therapy--it can actually buy you quite a long period of time--many years in all likelihood. And then there are therapies to try after that--with new ones coming online all the time. There are guys here with PSA scores in the thousands that have been going strong for more than a decade.

I'm sure this must be a crazy jangle to you, but please take some hope. I hope we can help.
Posted 1/12/2018 5:10 PM (GMT 0)
Scott I'm saying this from a gleason 9 guy to another gleason 9 guy. You had surgery because I'm sure you wanted to live and be around for your family and friends for many more years? Why wouldn't you want to go on ADT or Chemo to continue living? There are guys on here that have lived more than 10 yrs with these treatments and are doing fine. One of the more encouraging things is that seems like almost overnight they are coming up with new treatments and ideas so yes we may have gleason 9 prostate cancer sometimes curable sometimes not but sure doesn't mean were ready to check out! Get yourself into one of the top cancer centers or hospital systems find a team and go after that darn cancer!!!! Your gonna be just fine!!

Larry
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