Nothing has changed for me. I still have a week to go for my first meeting with my Oncologist. The wait seems forever
We’re here, hanging in with you.
I never had a prostate, but I have had cancer, and I do understand that feeling.
What I’m saying is the that ultra sensitive PSA has yielded (essentially) the same results since the first post-op test a year ago. The lab accidently did the normal test the time and it came back <0.1 The re-test came back .0124. It should be 0 if all the cancer cells were removed. I don’t think there is an infinity low sensitivity. I’m asking what the limit of the ultra sensitive test is. If my numbers were the equivalent of 0., I’d hope someone would have said that.
Regarding multi-focal positive margins, below is exactly what was in the report. I take this to mean margins were positive in more than one place.
Margins
Margin Status: Invasive carcinoma present at margin
Linear Length of Margin(s) Involved by Carcinoma: Greater than or
equal to 3 mm (non-limited)
Focality of Margin Involvement: Multifocal
Margin(s) Involved by Invasive Carcinoma: Right posterior; See
comment.
Margin Involvement by Invasive Carcinoma in Area of Extraprostatic
Extension (EPE): Present
In the end, its watch and wait and hope for the best.
Aah …
Said another way the biopsy itself wasn’t curative; the cancer blob is bigger than the biopsy sample.
Which is, in and of itself, not a surprise. Once in a blue moon a biopsy gets it all. But that’s neither the intent of the procedure nor the way to bet.
Good luck, but I would not be unduly worried about that sentence in the report. There’s plenty of time to worry later after your doc explains the real significance of the overall report.
I guess I haven’t been clear. This wasn’t a biopsy report but rather the pathology report post- prostatectomy. I’m not too concerned, in any case. Clear margins would have been better but that wasn’t the case. It definitely could have been worse.
More like I got confused about who was talking about which event in their journey. Best of luck regardless.
My Dad had it by my age and I don’t have an issue yet beyond BPH, but it’s sure something I / we are watching carefully. My own play-by-play may be posted here in a few years.
I had my first meeting with my Oncologist this morning. It went well. His office contacted my Urologist and she prescribed the hormone medication that will get this whole thing started. In four weeks I see her for a small procedure for the installation of the Barrigel and then a couple of weeks later I will begin my radiation therapy. This will go on for the rest of the summer, ending probably the first week in September. I still have moments of impending doom, but on the whole I am feeling positive.
@longhair75 Sounds like overall good news for your situation; you also seem to be getting the same treatment I opted for. I continue to be happy with my choice of treatment, despite the side effects.
My hormone blocker was leuprolide, for 18 months. Each shot lasts 6 months. In less than 3 months now my 3rd shot of it should be finally wearing off.
Barrigel placement was not bad at all.
My prescription is for Bicalutamide 50mg. I am to take one pill a day for the next thirty days. I haven been told yet what the injections will be.
Yes, I started on bicalutamide too. It jumpstarts the process of hormone suppression fairly quickly, and then the long-acting injection takes over the job. I’d almost forgotten about that bit.
As always, I appreciate your help.
I missed this the first time. 0.0124 is the same as zero. It’s below the threshold of the test. Anything below .02 == zero. And yes, someone should have said that to you. It took me 3-4 tests (about a year) before someone said that to me. I’m so sorry. 
Well, I guess sorry for the good news 
So my COBRA insurance from my last job after I retired last year runs out at the end of August, and I found out via my ACA consultant (thanks for putting me in touch with one, @hajario!) that moving to new insurance means losing my medical group that’s been looking after my cancer since 2017, Stanford Medicine. Ouch.
I don’t have any urgent cancer needs ATM – my cancer is in a “let’s watch it in case it gets angry” stage. Do I just talk to my GP (who is in my new insurance once I switch over) and get a referral to a urology/oncology guy who can keep ordering my PSA tests? New insurance is likely Blue Cross/Shield.
Speaking of watching the cancer, here’s my last few “ultra sensitive PSA tests 'cuz I don’t have a prostate” results, every 90 days:
.048
.10
.04
.08
.07
.06
That “.10” sure stands out as a WTH? number. Or maybe the .04s. Not sure. I got an extra digit of precision on the latest test because I switched from Quest to Labcorp for the new test after my number swung so wildly the previous test.
Seriously, are the error bars this flipping huge? Approaching 100%?
Things have been moving pretty slow for me. On May 6th I had my meeting with the Urologist to explain the diagnosis and start the ball rolling for the Oncologist. The Urologist called in a prescription for a 30 day Bicalutamide The first meet and greet with my Oncologist was on May 31st. On June 17th I had my first injection of Leuprolide Acetate and this will repeat every 90 days.
Today I saw my Urologist for the installation of Barrigel to confine the radiation to just my prostate. This was not a very pleasant experience.
In 8 days I have my first session with the Oncologist to begin the treatment.
{{{{{{{{{{ HH75 }}}}}}}}}}
ETA: a complete sentence to make discourse, with its lack of imagination happy.
@LH75, you seem to be set up on the same treatment program I was. Feel free to PM me if you want to discuss side effects and how to minimize them. They’re not horrible, but they do present some challenges.
My pace treatment was similar to yours, also.
Thanks
Thanks for the support. So far I haven’t had much in the way of side effects. Today was awful. I was not in very good shape when it was over. The recovery went pretty quickly though. I think that the physically invasive stuff is over at least for now.
I got over the barrigel placement pretty quickly, in less than 2 day. So hang in there.
This is my first exposure to the word “barrigel”. Googling finds me this happy joy page about it Barrigel Spacer | Minimize Prostate Radiation Side Effects
What do they do, slice open your perineum and stuff this thing inside?