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Old 11-24-2011, 05:26 PM   #20
JillaryJill
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Join Date: Aug 2011
Posts: 271
Re: support for foregoing radiation?

When I said radiation was not an option...what they meant was you do not have the option of NOT having radiation. I had a tumor in my right breast that invaded my duct and broke through the duct and invaded over 50% of my breast tissue on my right side. I also has 12 positive nodes out of 15. I elected to have my left breast removed. I have dense breast tissue and I don't believe in mammograms for dense breast tissue anymore. I had a clear mammogram 13 months before my diagnosis and that mammogram was clear, however I am 53 years old and had a mammogram every year since I was 40. I went back and looked at all my mammograms and each one had a standard disclaimer on the bottom..."Due to dense breast tissue, certain lesions may not be detected." My tissue expanders were installed at the time of my mastectomy surgery. I had my surgery November 17 and my first chemo December 31, 2010 so the wait was really not that long. My expanders were filled with saline a little at a time to the full stretch they needed to be ( I am a B cup and they were filled to about a C cup, they need to stretch beyond the implant size). Prior to radiation they were drained back down to like less than an A cup size. I ended chemo in April, then started radiation. Ended radiation in July 2011. I only started to burn about round 23 -25, then I had 8 booster doses to the scar only. These were a piece of cake and my skin already started to tan. I found radiation a breeze. My plastic surgeon checked my skin at 3 months post radiation and then told me to wait another month and he would do the surgery but the reason we went with 4 months is my daughter was married October 22 and he did not want to risk surgery so close to her wedding in case there was a complication. He did tell me however if he went in and found the deep layers of the skin were too damaged, he would have to do the trans flap which would be overnight in the hospital, more incisions etc.

Somehow you need to have your plastic surgeon and your radiation onc talk and work out a plan for you. They need to work together. My radiation onc and my plastic surgeon communicated by email, and my primary onc was the quarterback and told them, I want my patient's life to be saved and we are interested in a good cosmetic result. The lowest cut shirt I wear is a V-neck so it was not a vanity thing. I did not want a constant reminder of the amputation of my breast/breasts due to breast cancer. Even though I don't have nipples (not ready for another surgery) I do like that I don't have to use prostestic, special bras etc. I want my life going forward to be as normal as possible.

In my opinion from everything I learned, from my docs, if you want to know who my onc's are they are actually quite famous and alot of info about them on the internet you can contact me directly and I will share that info. My primary onc said, we are going to throw the book at you, Stage IIIc is still considered early detection. The lymph involvement is not as significant as it once was, since A. You removed the cancer via surgery and B. we will radiate the underarm and lymph area since I had some lymph nodes that had areas of extra capular spread C. We have a targeted therapy, that will seek out and destroy the residual cancer cells. But she was very insistant on mastectomy, chemo/ Herceptin and radiation.
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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