Log in to post a reply
Jun 30, 2007 10:16AM
Beth I am in such an odd situation and testing would mean allot to what decision I may make make as well as to my nieces----
My fathers family medical history is unknown except for my aunt who died of BC. Since his other sister died of Diphtheria at 6. the family history is scant.
On my Fathers side also my grandmother's sister also had a child die of Breast cancer.
I would think that this along with my Ashkenazi background
would at least warrant some genetic counseling.
The other sister we know nothing of because when she arrived at Ellis Island she was diagnosed with tuberculosis She not allowed in and was sent back to Latvia.
On my mothers side is an array of oddball cancers and although, not breast cancer I have read that there could be some component or variaton of the BRACA gene ---My mother died of Parotid Cancer (salvary gland Cancer) and her sisters of Pancreatic cancer.
And My sisters daughter died at 13 years old from a crazily
rare (for the age) ocular melanoma.
My oncologist literally poo- pooed the whole idea of
any BRACA involvement with any of this stuff. So, I doubt he'd be my advocate regarding testing.
But here is my true dilemma--and I've wanted to talk about this but I don't even know what thread to put it in.
This takes some prefacing so please hang in there with me and it will all tie together
I fell shortly after I completed rads with so many breaks in my shoulder they just decided to do a shoulder replacement (Arthroscopy) because of the severity---(The orthopedists said the severity of the fractures were due to chemo but of course the oncologists don't agree)---At the same time I had dislocated the shoulder (and tore the rotator cuff)----
For whatever reason (and I did have xrays) The ER decided to pull on my arm and try to put it back in the socket ----not realizing that my shoulder was smashed to bits -and "all the kings men couldn't put Humpty dumpty together again"
The result was massive nerve damage and something called a brachial plexus stretch which would have been bad enough on its own but the Brachial Plexus stretch caused something called RSD Reflex sympathetic Dystrophy or the new label
CRPS Complex regional Pain syndrome which has been a nightmare to treat. In fact I am a Physicians worst nightmare. When you are a Physician you know you are having a bad day when you have an RSD patient walk through the door. LOL
Now since, about 1/2 hr of being in anything but a half reclined position starts my pain ratcheting up to crazy levels -and twenty minutes with my arm hanging down just trying to get grocerys sends my pain levels zooming and recovering from the short outing can take days.------
Well my Pain management specialist whom I love dearly and with whom I probably would not be alive, at this point, has come up with a unique way of cutting back on my pain levels.
Oh yes we've been through dozens of off label use anti-convulsant medications trying to treat the nerve pain component, but to me the only thing worse than having to perpetually lie at an angle----to stop gravity from affecting the pain levels is to loose your brains and lay in a zombie like fog from these neuropathic pain meds for weeks and months on end.----Believe me, I'm familiar with every medication out there used to treat pain whether it be anticonvulsant, antidepressant, muscle relaxants, salicylates or short or long acting opiates. I'm a bouncing board as to what works and what doesn't due to my medication sensitivities. I'm allergic to sulfa and NSAIDs.
And yes I've had the stellate ganglion blocks by anethesiology/neurology and I left when they started talking sympathectomys
Anyway the whole thing has been a balancing act try to control pain with the least amount of side effects. I can't tell you what it means to me to have a Doctor who can think out of the box and keep looking for new solutions and since he just happens to be head of rehabilitaion. I do go in and out of occupational therapy until insurance refuses to pay. Lately he wrote for aquatherapy which was really helping till I overdid and flared the whole thing up.
Yes there is something that may work but it would involve me going to Germany and being put in a 5 day Ketamine Coma and kind of rebooting my sympathetic nervous system---like a computer and its not covered--And in my case since the whole RSD is being ticked off by the brachialplexapathy it may not work anyway.
So as I say my Pain Management specialist thinks if we can
stop the gravity of my breast from putting additional strain on the brachial plexas. He thinks I may get some pain relief from a breast reduction----the less breast the better! Less breast=less pain.
I've seriously been considering his suggestion, and he is going to explain to my breast surgeon. So, my first step would be a consult with my BC surgeon, and then one with a plastic surgeon.
First thing I asked Physiatrist is would they pay for one to be size A or B and leave the DD sitting there. He assured me they wouldn't, but then my PCP said it sounded like something they'd try although he was laughing.
But I'm not the best surgical candidate. They have to take me in early and perform a sympathetic block to stop my body from knowing its being operated on even if I'm getting anesthesia so you don't spread the RSD.
I'm worried that I could do this operation only to find a local reoccurrence within a short time.
Add to that that I've already had rads and my surgeon had said that expanders are not an option once you've had
radiation. I don't feel I could recover at any other kind of reconstruction and may run the risk of sending my RSD full body.
If I was to get the genetic testing and should be BRAC2 I would want to get them removed----I can't help but look at these breasts as my enemies.
BBS-- Do you mean I can bypass my oncologist to get genetic counseling or testing by using Myriad---this is what I don't understand?
I'm so confused as to what to do and what can be done.
Thanks Beth for not making me sound like a loony tune. I mean he's the oncologist and I'm the patient. So I feel like like I'm making much ado about what he feels is insignificant.
I like your soapbox!---I have a soapbox too but its about
inadequately and under treated pain.
Hopefully, we'll get to meet at one of your get togethers.
I'm starting to think if they can take these boobs away I may be able to function upright for more than a half hour
and actually get to King of Prussia without worrying if I can get back.
Susie, member since Jan. 2003
12/12/2002, IDC, 2cm, Stage IIB, 0/1 nodes, ER+/PR+, HER2-