SFN, chemo, BRAC1 positive, visit to new oncologist

St George 2013 · 12-04-2013, 09:41 AM

Boy......what a day yesterday. Short story: 'normal' hysterectomy lead to a small Serous uterine cancer found during pathology. 6 rounds of chemo (taxol/carb) and a month later I couldn't walk due to the SFN which was confirmed via skin punch biopsy in Sept 2013. No dr to suggest the path I needed to take to treat this so I jumped around from dr to dr. When I went to my Gyn last month she was livid that no dr had helped/followed me through this journey. She no longer does surgery so back when she said I needed to see a dr that does surgery we picked one together. Unknown to me because I've never been through anything like this, she called the dr we picked and discussed my case with him. I wound up choosing another dr that would get me to a closer hosp for my family. I did not tell her I changed. Didn't know I needed to. So she has just heard everything I went through from me. Suggested I see another oncologist who would work directly with her (mine won't) and I went to him yesterday.

He had studied my records and said he would NOT have done chemo for the cancer I had.....it was Stage 2 and since it was removed, along with everything else, he would have just watched me and possibly sent me to a radiologist for his opinion on a small amount of radiation. And on top of that he asked me did I know I was BRCA1 positive ? He wanted to know if my oncologist had discussed the results with me concerning a high possibility of breast cancer occurring due to this BRCA1 or how it might affect my son and daughter ? And the answer is no......I was never counciled on this. Just blew me away....so much to take in......Could I possibly have done the chemo, went thru that hell, lost my hair and now have severe SFN for nothing ?

He said for me not to worry about the cancer....my main concern now needs to be this dibilatating neuropathy. He was also upset that I had been denied disability and am in the reconsideration stage. He said it's obvious to me that you are unable to work and won't be able to again. He said he would call my GYN who I've known for over 20 years and ask her to act as an advocate for me along with his findings. This guy really seems to care......they are now going to the lab that would have my BRCA1 lab results.....he can't find them in my records. Wants to be absolutely sure the blood test was done. If confirmed positive he will do other genetic tests to see what other markers I may have. Also have to immediately have a mammogram and then a MRI of my breasts. Also made me an appointment with the Neuropathy Dept at Emory in ATL. It must be a good place...I can't get in until March of next year.

Wow.......that was a lot take in don't you think ?

Debi from Georgia

mrsD · 12-04-2013, 09:46 AM

Yes, it is alot to think about. So take it easy, and do one step at a time.

I am sorry you have to go thru all this.

Hopeless · 12-04-2013, 01:38 PM

Totally agree with Mrs. D's response.

hopeful · 12-04-2013, 07:24 PM

I agree it is a lot to go though. Thank goodness your GYN suggested going to another oncologist. I sounds like she is on the ball.

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