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March 17, 2011

So, I'm either brilliant and a bit

brave or I'm off my rocker and about to make things worse.  We had a second opinion with a radiation oncologist today.  I had been given a recommendation for a particular person at the same hospital, however, she is no longer with the group.  Despite that small setback, the RO we were to meet with had experience at one of the top cancer centers in the nation and her current hospital recently became a part of a larger, well-reknowned hospital group.   We threw caution to the wind and kept the appointment.  I had no idea what to expect and feared the worst, given last week's appointment.

I was grateful to be pleasantly surprised.  

We were first met by a nurse who reviewed my basic information.  She touched on everything from medications to my recent weight loss (yes, that 13 lbs since last October was intentional).  She was very kind, not at all pushy and left us alone to review departmental information and guidelines while we waited for the doctor.  

After a few minutes, she stepped into the room and greeted us.  With a rather pixie-like figure, she was not nearly as forbidding as her picture led me to believe.  She asked for a brief history, though she had gotten a bit of information from *the* oncologist and was curious as to why we were there at this point in time.  I explained how I simply couldn't make a decision regarding radiation.  Everything from the way my skin might react to the length of time and side effects worried me.  More importantly, given that I had been told I was in a "grey area" I just wasn't sure how to proceed.

She admitted that I was indeed in a grey area (score!).   She then went on to indicate how despite the fact that I had the close margins with the DCIS (vs. the invasive cancer), this was actually a bit more...worrisome.  It was just too close to the chest wall and could easily turn into something else, given time..or, it may not.  However, the five weeks of radiation would bring down the chance of recurrence significantly and would nearly guarantee that my natural lifespan would not be affected. Not that I have any doubt it would be affected, but something about the way she spoke was far less frightening and more motivating than our visit to the last RO in late November.

Instead of fearing the treatment, especially given the shorter length of time, I felt as though it might be doable.  She reassured rather than bullied and reiterated that due to my health and lifestyle, I was unlikely to be affected by the treatment in the long run. She offered that side effects such as exhaustion could occur, but would not likely be debilitating.

She did not scare me and did not talk down to me.  She didn't stare at me with bug eyes, nor did she look at me like I was nuts.  We also touched on the Tamoxifen issue and while she (of course) encouraged it, she listened to my fears and offered that perhaps a visit to a hematologist might be in order.  Given that I don't fit the profile of those who normally have clotting issues on Tamoxifen, a hemotologist could give me a truly thorough work-up that could put my fears at rest regarding an inherited disorder.

Did I mention she also listened to the entire sordid story of my mother's death?  She didn't just blow me off, but wanted to know all of the details and was appropriately horrified at the lack of care Mom received just prior to her last day.  Why my own oncologist couldn't think to do that is beyond me. The fact that the RO took that much time to engender my trust today went a very long way.

Peter and I somewhat silently discussed as the appointment neared a close and realized perhaps it might not be so bad.  It's not what I want to do, but especially given my concerns about Tamoxifen (and who knows if I will tolerate it?), this will give an extra measure of cover if the drug does not work.  The length of time is better, the location is much nicer and the doctor worked so hard to ensure that I was informed, but not scared.  I felt like I was actually making a rational decision versus being frightened into something that would just make me worse rather than better.

We are still working on the financials, as we realize we have to have everything insurance-related settled before we start this procedure on March 28. (I simply can't handle any more scary you-know-what bills showing up in the mailbox, so we are certifying everything in triplicate.) I also have a pre-treatment MRI next week, which will just ensure that there isn't anything to be concerned about.  The doctor is sure nothing will show up, but always does this as a failsafe.  She was even thoughtful enough to be concerned about whether I could tolerate the MRI....all things considered, that will be a cakewalk.

So, there we have it.  I am either brilliantly killing off some stray cell that managed to escape the butcher's knife or I am brutalizing my skin and what's left of my breast for no good reason.  I suppose the only good news is that I will likely never know.  I think in this case, that's probably for the best, as I'm already quaking in my boots about this plan and whether it's truly right for me...




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I am so glad to hear about a doctor that actually has some compassion and kindness. You deserve to have doctors like that in your life.

Yay for finding a GOOD doctor who really listened. It sounds like you are now able to make a well-educated decision. Best of luck to you with the treatment. One day at a time, you'll get through it.

I am so glad you found a doctor that listens and that you could connect with!

Wow. Well it sounds like you found a doctor who's a MUCH better fit for you - that's great news. I'm sorry you have to continue to fight this battle though. I know you can't wait till it's over - it will be before you know it - just a blip in your past! :)

And that right there is the experience you should have had in the first place.

I am soooo glad to hear that this doctor had a much better "bed side manner". That can seriously make a HUGE difference!! Sending prayers for peace your way!!

I have to second Kristen's comment - a caring doctor with good bedside manners does make a big difference. Too bad they are not all like that. Hope it goes well for you!!!

That's how a doctor, in any specialty, should be... reassuring and attentive. Not, a condescending bully. Good for you seeking another opinion. Good luck with your decision making.

I know the stress you've been feeling about this ... but I am thrilled that you DID find someone who really "got" you and your situation and realized that you were more than "just" a patient. Or worse, just the word you despise hearing.

No matter what your decision in the end, at least you now have an advocate and a place to turn.

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