about surgeon (and a note on triple negative)

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Hope I'm allowed to say this - I would not wait for my doctor to get back

on the 19th. I'd find another surgeon who took my situation seriously enough

to inform me of everything as he or she learns it and not leave me in the dark

about what comes next. I'm not certain why you had to wait so long for surgery,

but I would not be so patient again!

I had my surgery one week and a half after my initial biopsy (which I knew

was cancer, but had to wait for official results). Those were the longest days

of my life! I called the doctor before the results came in and made my

appointment with him for the day after the results would be in. I did all of

his scans first to make him happy, but that only took a couple of days (tumor

was large and he hoped to get me going on chemo first) but I was determined and

he rearranged his surgery schedule to accomodate the urgency I felt. My

mother, an aunt, and two cousins all had cancer (three of them didn't make it,

including my mom) so I always knew what I would do in this situation, no looking

back.

I made the right choice not to do chemo right away because as we discovered the

tumor was triple negative we learned that triple negative tumors don't respond

as well to chemotherapy agents (and you can't even use the hormone suppressors)

and it could have given this tumor more time to grow. We've been researching

chemo options in case there are some renegade cells lurking somewhere . . .

One neat thing we did was send some of the tumor to precision

pharmaceuticals in Pittsburgh to have chemo agents tested on it. If they are a

legitimate company, the testing they did on the agents came back responsive to

my tumor, which surprised me. What happens in a petri dish doesn't always

happen in a body, but it's more information than we had before, and one can

always hope if one goes that route. The sad thing is, they don't test all of

the drugs we would have liked, and my oncologist ordered testing on drugs in a

study BEFORE I ever met with him, before we determined I'd even be open to

putting them in my body, and my husband will *most likely* end up footing the

bill for 450 dollars a drug test. Just a couple of warnings there . . . they do

try to get your insurance to pay first (that might be why they limit the drug

selection?) but they aren't always successful.

Also, they could just be a company that makes money from cancer patients

without any science behind them. My brother is a cancer researcher and heard

about them from someone, but he can't verify either that they are legit.

e

e

HI, new, intro and questions

HI all, I am glad I found this group. I hope to give and recieve info

and support. I know in the beginning I will probably get more than I

am able to give. I am early 40's with a 2 yr old daughter, Diag with

extensive DCIS. Opted for bi lat mast w/immediate reconstruction. Gene

test is pending.Post OP I learned my tumor was 9cm x 6cm (thought to

be 3cm x 1.5cm) 4 neg nodes,no invasion seen on the samples submitted

but 2 positive margins remain. I have spacers for later reconstruction

as the PS was concerned about the margins during surgery. It took 2.5

mo to get on the surgery schedule and doctor is out of town until

12/19. He left town without telling me he did not get all of the

cancer cell and his staff said he did that so I would not be upset???

He left no info on if he plans more surgery or if I need an oncologist

for rad? If I had a mastectomy,no invasion and DCIS how can there be

any ductal tissue left containing residual CA cells? Any comments or

shared info will ge greatly appreciated.

Thanks,

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