← Return to Prostate cancer, pathology report after RPR & Lymph nodes removed.

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@bikeman1
Hi..
It's nice to hear from you..
I was told that I might.🙂

I'm sorry to hear that you've had a recurrence. You seem to be on top of what you need to do.

How are you feeling?

You're right about feeling 'Shell Shocked'.

My fiance is very angry & distraught. And I'm kinda feeling the same way.

I'm trying to fight that feeling-so we can focus on key follow up appts, and address what is going on Right Now.

Since he's still healing, I can schedule future appts.

The surgeon, that is a huge part of the so called, "Care Team", is rather difficult to speak with..
Not just because he's very busy but he's kinda crude & really doesn't like to be asked questions.
Instead of a Telemed to discuss Pathology results, he sent a simple health chart message. And it didn't say much of anything. And he doesn't believe that anything but a PSA and a follow up w/his NP would be necessary.
??????
This kinda made us see RED...

I've requested additional testing & will pay out of pocket, if necessary-(upsa, genetic & genomic testing).
Prostate cancer & metastatic breast cancer run in his family.

Also, because of the lack of information & inability to have a simple discussion with the surgeon, we are trying to schedule w/the Medical Oncologist & Radiation Oncologist at the Cancer Center.
They are listed as part of the "Care Team".
Scheduling is a few months out.
I'd really like to be ahead of this.. And not miss any additional Red Flags.

We foolishly listened to the surgeon when he said that he would be the Medical Oncologist & follow-up for 10years.
Are you seeing a Medical Oncologist?

I know that if this was breast cancer, a Medical Oncologist would be instrumental in follow-up care..And a Radiation Oncologist.

Our goal is more information, consistent testing, meeting with Medical Oncologist & the Radiation Oncologist-(if needed in the future-we would like to establish a relationship with these doctors).

I'm sorry, that's ALOT of venting..

I appreciate that you reached out..
And hope you are feeling as well as possible..
Melinda

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Replies to "@bikeman1 Hi.. It's nice to hear from you.. I was told that I might.🙂 I'm sorry..."

@myboo2u
You have correct reasoning - one needs to establish relationship with RO and MO before problem arise.

We were actually denied access to MO just after surgery with explanation that MO works with metastatic patients only but we were insistent and we got app.

Oh yes, all appointments are always at least 6 to 8 weeks apart and that is maddening but it is like that unfortunately in most big centers. 😣 There is a "theory" that PC is slow growing and it takes time to spread and develop and yes, that is the case for most PC patients but for high risk patients it is different - it comes back without much warning and that it grows fast 😢.
My husband's uPSA started doubling every 4 weeks and only because we did tests every single month the trend was "proven" and obvious and even after that we had to wait for new PSMA scan for 6 weeks and we refused to wait. We scheduled PSMA scan in another local hospital to catch the window before uPSA reaches 0.25 . We were told that scan will not see anything at that level and guess what - couple of nodes were glowing !

They do all of those studies and than point blank ignore protocols and findings - just unbelievable *sigh. Also, if we did not have established contact with MO we would have waited for app. even longer. This way it was easier and faster since we were "his patients" already and he already knew our case and we had preliminary plan of action.

I am really sorry to hear that your urologist is so aloof and unpleasant, how disheartening : ((. Just be persistent - as many members told me here " a squeaky wheel gets all attention" and that is so true *sigh.

Thanks for asking - we are doing OK now. We finally did all scans and got all meds that I wanted for my husband (had to insist on those), and we have preliminary plan for RT that will happen mid July. Medications worked fast and well (*knock the wood) so we can relax somewhat. Hopefully you will never need anything done in the future, don't forget that that is VERY possible too ! 👍

May your fiancee heal fast and completely and be cancer free for life 💗

@myboo2u
Hi Melinda,
Thanks for asking about how I am doing. I am feeling fine, 1.5 weeks on bicalutamide, one of the prostate drugs available. In fact, I had a great bike ride yesterday 🙂
I forgot to include in my last (unduly long) message, that surgeons are just that--surgeons. They are urologists too, but consider yours a surgeon, and other than questions related directly to the surgery (like issues with healing, incontinence, etc), you are pretty much done with him. I asked my surgeon if I needed ultra-sensitive testing and he told me no, so I delayed it for several months until reading postings by these and other folks convinced me I should do it.
Again, you are on the right track by getting appointments with a radiation oncologist and a medical oncologist to establish relationships with them (I have both). Don't be frustrated if it takes a while to see them; it is not an emergency that must happen right away.
I don't want to downplay your fiancé's (I guess I jumped the gun by calling him your husband) disease. It is serious, and you want to get things lined up. Also you have to remember that what applies to the "average" prostate cancer patient may not apply to him. But at this stage you don't want to drive yourself crazy by thinking everything must happen "right now".
PS, I found these abbreviations online and added a few myself. Hope it helps.
Take care and don't let this get in the way of your wedding planning :))

Shared files

ABBREVIATIONS (ABBREVIATIONS.pdf)

@myboo2u It is important to have a relationship with a Medical Oncologist, someone who is in a position to say "Hmm, wait a minute...." about decisions made by people whose roles are more circumscribed (ROs, surgeons) in your treatment. Placing treatment recommendations completely in the hands of an RO or surgeon is to eliminate consideration of other treatment paths or any critical review of what they want to do. That broader, more holistic view of your situation is needed and, to me at least, is the role of the MO. I sought one out on my own after I became uncomfortable with everything being in the hands of an RO. Having someone in the oversight role, a "go-to" person with whom I can ask any questions I want, knowing their responses are not limited by their particular technical specialty, gives me considerable reassurance.