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

@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 :))

@jeffmarc
Yes, of course, for somebody with indolent cancer that will maybe cause BCR in 10 years seeking MO's advice is not urgent. However, as Melinda mentioned, for breast cancer or any other cancer MO is always involved from the beginning, busy or not. My advice was for Melinda since her husband has cribriform OUTSIDE of the gland, IDC and bladder neck invasion which all point to aggressive cancer.

As a perfectionist I always give my best and expect the same from other which is ridiculous, I am aware of that lol. BUT, wouldn't it be great if everybody gave their "best", and especially doctors ??? 😉 None of them works for free - right ? MO in any other oncology department is busy too.

Also, MO has the best knowledge about medications and medication interactions and most seniors are on MULTIPLE of them. His oversight is very important.

@surftohealth88
It’s interesting that the biopsy that she supplied mentions nothing about cribriform Being outside the prostate. It could be the doctor told her that, but it sure isn’t clear from the biopsy.

@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.

@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.

@guybe
Thank you..
I've contacted 2 Med. Oncologists today.
I'll wait 48hours & call again..

If it wasn't for this site & doing our own research, we would be completely in the dark..

Wishing you well..❤️

Melinda