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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
Drugs:
April 25- Left breast mastectomy and lymph nodes removal. Asked for both but surgeon said no.
June - July 25
Radiation:
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!
October 13
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.
Other info:
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.
Renee
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Renee,
I live on the West side of Michigan and I was diagnosed with ILC in L breast and IDC plus a vary small DCIS in R breast in Dec. of 2022. The ILC was TNBC. My husband and I were not happy with how things were handled at our local hospital, and so I asked my primary care Dr for a referral to Mayo Rochester. She said she suggests any of her patients with TNBC go to UofM in Ann Arbor or to Mayo. The Radiologist who did my MRI guided needle biopsies at our hometown hospital said she thought Mayo would be the best place for me to go. My husband and I are both very glad that I had my treatment at Mayo. All has gone very well. I had a bilateral mastectomy at Mayo and I am doing my follow up care there for 5 years. Everyone at Mayo is kind and very knowledgeable about everything. They are some of the very best Doctors that are available to us. Even the lady who called me back from Mayo about my initial appointments was so kind and helpful. Mayo is a very special plaice. Yes it's a long drive but it's worth it. We stay overnight in WI at the 1/2 way point for us so our drive is not all in one day. We are in our 70s so that makes the trip easier. With all you have been through I know that you would get excellent care at Mayo. Sending love, healing, and wellness wishes your way❤️
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2 ReactionsThank you for this info! I do love a good road trip. Happy to hear you are getting such great care. May you continue to heal and live a life of adventure.
I did run into someone over the weekend that had cancer and went to UofM and she said that they consulted with Mayo, M Anderson, and sloan Kettering to find the best treatment for her rare cancer. She is now 6 years cancer free. I’m also not sure how my insurance works. As far as I can tell, Mayo takes my insurance but UofM might not. I will be calling for more info Monday morning.
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1 ReactionBest of luck! I go to Mayo in AZ. My primary had me started somewhere else and I switched after diagnosis. This helped me a lot mentally knowing I’m getting the best treatment.
I don’t understand how the surgeon would refuse to do double mastectomy. I was suggested single and had no resistance when I opted for double right away.
Hello. I will simply say, go to Mayo, or even consider Cleveland Clinic. U of M ranked 40th.
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3 ReactionsHi @mamarene, I thought I would check in to see how you are doing. You have quite the case. As you likely know, Mayo Clinic specializes in complex cases. Did you contact Mayo Clinic? Here’s the contact info if you need it: http://mayocl.in/1mtmR63
What treatment are you currently on?
I did contact Mayo but my doctor had sent my referral to UofM by the time they called me. I don’t think my insurance covers Mayo. I have Oscar. I am still waiting to hear from UofM. She said that I can change if I’m not comfortable but they are confident that it’s a good fit for me at this time. I am on Zeloda right now. I just finished the third three week cycle. I have my pet/Ct scan tomorrow morning. The ultrasound had showed that it was growing quickly but now that I’ve had another round of the zeloda we will see if it’s still growing or not . 🙏
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2 ReactionsMy son lives in Az not far from Mayo Clinic. I had thought about going there. I know that my blood counts and neutrophil were always low. My doctor said that my body needed all my healing to go to the one side. If I had both, many times problems arise with the side that was fine and takes away from healing the other side. I have inflammatory breast cancer triple negative so as everything and as much skin as possible had to be removed. I don’t understand it all but they really did not expect that it would be in the right breast, at least not at this stage. They say it’s very rare. 🤷♀️
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