Not coping well...I don't know what to do

hi annie,

i didn't realise that was a guideline, i guess i see where it's coming from but i think the doc has a responsibility to let a patient have a test (free!) if they have requested it.

that's great you found a good nurse-navigator at CVH! my dad's initial post-surgery radiation treatment back in 2010 was there and he liked them. but when we went recently the radiation onc was not great in attitude or knowledge and they also don't have SBRT equipment, which delayed us further (the spinal compression symptoms showed up during this wait time, and my dad was rushed into surgery)

our experience at PMH has been great so far. well, the radiation onc's pessimistic view wasn't very encouraging...but we had a nurse who was excellent at explaining and also empathising and putting us at ease. she has also been great with letting me ask questions over email and phoning me to reply. i guess i just feel like we're in safe and understanding hands so far. we meet with a medical onc there tomorrow so hopefully it will go well!

i wish we could connect too...i live in the UK and am only here til the end of the month but am gonna try to come here as often as possible now that my dad's situation has changed. but feel free to message me anytime if you need to! we went through this back in 2010 and this is round 2...we want to kick this thing to the kerb!

i'm so sorry you and your husband are having to deal with this but it's good you have a support network and are dealing with good medical people. i think that makes a huge difference. i think as far as oligometastatic goes, sunnybrook seem more open to it too and had a clinical trial there. they also have a specialist prostate cancer bone met clinic which looks really great. hopefully those are facilities that will never be needed for your husband though, but it's good to have the info in the back pocket if it ever happens down the road.

i hope everything turns out ok! it's great he has such a supportive person on his side!

i think that definitely must be the same radiation onc! we were happy to change and go to PMH. i don't understand why there was so little empathy with her manner. when you're dealing with people dealing with cancer it doesn't hurt to have a little warmth and show some interest and knowledge. for some reason she thought my dad would still be able to get SBRT after his spinal decompression surgery, which ended up not being true at all.

we met with the PMH med onc today and he did mention genetic testing but said he doesn't think my dad needs it.

right now we're at a stage where he's not 100% sure what is is because the original pathology report stained negative for PSA and PAP - though this can happen with poorly differentiated mets like my dad's and also with hormone treatment which my dad started at the time - he is 99% sure it's PC but unfortunately he also thinks it might be the neuroendocrine type which is very aggressive this is something the uro also suspected due to my dad's low psa despite having a bone met. both radiation oncs said it's not unusual for these poorly differentiated/low gleason types to be like this but it seems the uro and med onc are still suspicious and want to double check. we are PRAYING it's not the neuroendocrine type. the path review is upcoming and some bloodwork was done today.

this day has set me back a bit as neuroendocrine is back on the table when i thought it was likely off the table. but i'm trying to be hopeful. i want the results but at the same time it's so scary.

i just wish someone would wake us up from this nightmare, but i know so many people are in the same situation and wish the same. thanks again everyone for all the support and encouraging words and advice.

You met with a med onc at PMH? (not a rad onc or a uro/onc)? I didn't know such a person existed since Dr. Tannock retired. Interesting that neuroendocrine PCa is suspected when your dad was initially a Gleason 8.

Did they offer to do genetic testing? We have been thinking that we will need to pay for it ourselves. If a man has BRCA 1/2 there may be certain kinds of medication that would be helpful that would otherwise not be offered.

How did you manage to get a consult at PMH so quickly?

Bololidat said...
Amazing Grace...snowflake...amazing...to the others as well...what a gift daughter...pure as...well you know... Joy...

Yes, Snowcake, I also feel that you are a total blessing to your dad and those you love. But you seem to be very distressed that you are not also Super Woman who also happens to be a physician PC cancer specialist. You are pitting your research abilities against the advice of your docs and wondering why you can not know enough about this stuff to correctly over rule them. Considering that you can get totally different advice from one of them compared to the other, especially depending on what their specialty is, you getting educated enough to save your Dad from the errors of his physicians is going to be quite the accomplishment(assuming they actually are errors and assuming you are not the one making errors as you try to become an expert in all of this in a short time while in an emotional state).

Snow, you really can not accomplish this super human task. Sure, you ( like us ) can research and read studies and then read a new study that contradicts, and you can make your best shot. But in the end you either have to trust your docs or fire them, and then you have to decide which physician you can actually trust to give you the right advice. I'm here to tell you that is a hard game.

I spent 36 years in ORs with these guys giving anesthesia- not infrequently for PC surgery or even some RT treatments for various cancers. And in the end, I still made some choices that I regret. And at least one thing that makes the exact correct choice getting picked from what all of these advisors are telling you is the sheer emotion that interferes with clear thinking. At a time when you feel like something- whatever it is- needs to be done NOW. Good luck with all of that.

So what I am saying, Dearest Snowcake, is try really hard to cut your self some much needed major slack. It is going to be very hard for you to make correct cutting edge medical decisions on a subject you knew zero about just a short time ago. All you can do is read up on it and try your best to decide which of these physicians you should listen to. If you later decide you backed the wrong horse, well that is simply not your fault. You are not a PC cancer specialist physician with 8 years+ of post college education and years of experience in this field. Again, considering they often can not agree among themselves about what you should do, how the heck are you supposed to make a guaranteed error free choice among them? IMO, most folks are simply incapable of pulling off such a gargantuan task. So if you think you have decided wrong, try hard to forgive yourself for not being super human. And consider that sense you know so little about this subject, you may change your mind later about what the right choice was. And even if not, the only way you were ever really going to be able to pull that off was with a stout dose of luck. High emotion and rational decision simply don't go hand in hand.

I'm sorry this has happened to you. Hang in there, and God bless!

having said all this i'm feeling myself getting pulled into the dark place again trying to breathe slowly and distract myself, but i can't shake this feeling of impending doom and anxiety.

how do people deal with that sick-to-your-stomach feeling of overwhelming dread? this is the feeling i get when i have nightmares but in this case it's really happening.

i tried tall allen's suggestion of mindfulness but my mind kept wandering and then i got frustrated with myself for not being able to be mindful!

i do remember this sick feeling from the first time around in 2010...the doctor had said that the next 5 years were going to be fine (at that time, that was a real punch to the gut...but what i'd give to hear that now)

that's so awful on the part of the medical people, beth. ever since this happened to my dad back in 2010 we've made a point to make as many people aware about PC as possible. so many men who are friends/family didn't even know a PSA test is something that needs to be done or about signs/symptoms.

i'm so sorry gary was diagnosed at the mets stage. but it sounds like he's doing well from your sig. long may that continue! just awful though that it had to come to that because of negligence.

Dear snowflake I recognise so much in what you have written (although it is my husband who has been diagnosed rather than my dad.)
I have constantly questioned and blamed myself for what I have and haven't done (particularly surrounding him getting a late diagnosis) but this really wasn't helping and I'm now trying to focus on what I CAN do now to support him. There are so many choices and hard decisions to make but I'm just trying to tell myself that everything I do is coming from a place of love - even when I make mistakes.
I hope you can get some peace of mind - and all the very best for your dads treatment x

thanks for your words, sallyyy, and i'm so sorry you've had to go through the same. it's so hard not to wish we could just rewind and it's also hard to come to terms with the negligence and dismissiveness we encounter in these situations from professionals. people's words on here have really helped me to see that sometimes we just couldn't have done more at the time, and there's no guarantee that being more persistent would've done anything since the decision is ultimately up to the professional, and it can be so daunting dealing with them and pushing. in some scenarios, we are ultimately at their mercy and like billybob said, we do the best we can at the time with the info we have.

of course, that doesn't stop me beating myself up but the important thing is we're getting more and more informed now and that will help us with any future decisions.

do you know about the chaarteered and stampede trials? i think those combination therapies may be suitable for your husband, as i know they showed positive outcomes for men with more than just a couple of mets. i really hope things get better and best of luck to both of you. it sounds like he has someone great by his side to fight this and that's a huge thing!

thanks, bololidat. is 5 years statistical? i haven't looked at stats because i am scared and when i did that first time around i found it didn't help me much. but a minimum of 5 years would be so amazing if we could get it! i think the main worry i have right now is the possibility of neuroendocrine that's been brought up by the uro as well as the med onc. it's a weird thing to say but what i would count as "good news" right now is that it's just standard PC that can be managed and controlled long term. curative and/or long term remission would just be the best!

but like you say, we need to make peace with reality and the cards we get dealt. i just hope the stack is in our favour.

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