IBC TNBC left breast, one year later in right while still in treatment
Any advice at how to advocate for myself would be much appreciated.
Inflammatory Brest Cancer with triple negative receptors was diagnosed October 2022.
My treatment plan:
Chemo: 6 month
April 25- Left breast mastectomy and lymph nodes removal. Asked for both but surgeon said no.
June – July 25
6 weeks for 5 days each week. Bolus added to burn skin.
First visit I had noticed a rash above incision close to center of chest and showed radiologist. He sent a picture to surgeon in the first week. She said it looked fine the second week he insisted she see me.
She did a biopsy and it is triple negative cancer again. Radiologist added one extra week targeting just that area.
Breast surgeon added a Pet/CT scan.
June 25 had pet/Ct scan to see if it’s anywhere else. Has not spread, is what they told me.
Finish radiation on July 25
Started Chemo Aug 29
After radiation was finished and skin had time to heal my oncologist added six months of Xeloda chemo pill.
2 weeks on one week off.
I finished my first two weeks of the Xeloda on Sept 11 less than 3 months after a clear pet/Ct scan) and had my first mammogram for right breast (the one I asked to take off and she would not) on Sept. 14.
Had to go right in for ultrasound and then biopsy and it is triple negative cancer. 12mm in size. I could feel the pea size lump.
September 26 I finish my one year of Keytruda Yay!
Had another ultrasound just one month later because I feel the lump in my breast is getting a lot bigger!!!
I was right.. Something is in there that feels more like a plum size now. It’s the weekend so I have to wait till Monday to see what the plan is now.
I need to get into somewhere fast so they can figure this out.
I feel like all of my treatment I am an odd duck and have the 1% of something not working right or they have missed a very important detail of how to care for me.
I am going to UofM Rogel Cancer Center here in Michigan for a second opinion.
Should I also check into Mayo, M Anderson, or Sloan Kettering cancer centers? I want the best. I am told that UofM consults with these three to give the best care and have heard only good about UofM but will travel if need be.
My daughter 41, half sister 71, and her daughter 51 have all had breast cancer in the last three years. Left breast, Different receptors but the daughters both had double mastectomy, and the right breast also showed cancer cells that had not shown up in scans when checked after surgery. Not sure of my sisters but she also got a double mastectomy.
Mine was the only one that was IBC TNBC.
We had genetic testing and showed no genetic mutations??? How?
I have POTS and have had trouble with dizziness, partial blacking out, and high heart rate when first moving positions. They say can be from all my treatment too. My POTS was not often or bad before chemo. Started when 19-20ish and I noticed more when not hydrated well. It helps to have more salt in my diet
The following is results from my last echo. I have had three all staying close to the same results.
Anyone have wisdom to share?
Thank you for getting this far. I know it’s a long one.