Maria's Story: Knowing More About My Screening Options Caught My Recurrent Breast Cancer
Maria Michele Martinez is a Breastcancer.org Community member in Tuscon, Arizona, USA.
I found my own density in my right breast, February 2021. It had no distinguishable borders, just a fullness/density. I had a diagnostic mammogram with ultrasound done in March 2021 that confused both the interventional radiologists as it was not a typical image. Four core biopsies were done later that same month. The results were negative for breast cancer. As a result, my husband and I planned a 6-week trip up the west coast for August.
Meanwhile, I lost my COBRA insurance in May. I went online to obtain my new private insurance with Healthcare.gov. I was unable midyear to obtain insurance coverage for both my PCP (primary care physician) and breast surgeon group that had done all my mammograms and biopsies over the years. Believing I was breast cancer free, I went with the PCP insurance coverage, and lost the coverage with my breast surgeon group.
On August 1st, 5 days before our trip was to start, I awoke with a huge amount of nipple discharge on my breast and sheets. I knew this was bad news! I sent a message via my patient portal, even though it was Sunday to arrange an appointment with my PCP. Two days later I was seen by the NP (nurse practicioner), who, with considerable concern, sent me back to my breast surgeon I had seen prior to my biopsises in March. I elected to do this, hoping to obtain continuity of care later, thinking that it made sense to go back to the group who had done my biopsies and had all my mammograms for almost 20 years.
After my breast exam and ultrasound by the PA (physician's assistant) in my breast surgeon's office, I knew I had breast cancer, and my tears flowed. I was angry, as I am a retired RN (registered nurse). How could I miss this? I cussed myself out. My husband who was with me, said to me, "How would you know? Your biopsies were negative."
August 26, I had an appointment for more biopsies this time under mammography. I sat in a chair with the mammogram machine clamped on my right breast for 45 minutes, while I underwent six biopsies, this time with enough local anesthesia. After the six biopsies, the interventional radiologist asked if he could do another six. I quickly agreed, wanting to make sure the cancer was captured this time.
On September 3, 2021, late Friday afternoon, I told my husband that the 5 o’clock call would come. As I just knew that bad news was always given at the end of the day, to allow the physician the time it was needed to give to the patient. Sure enough at 4:55, the phone rang, as my caller ID announced the physician’s office. I told my husband to answer it. It was my breast surgeon. She took the 30 minutes to answer all our questions with a great deal of respect and sympathy as she told us that I had ductal carcinoma in situ or DCIS, which is considered noninvasive, typically requiring a surgical excision only. However, we needed to do an MRI to fully see the entire right breast and to check and make for sure there was nothing in my left breast. The MRI was scheduled for September 7th.
My MRI confirmed the left breast was fine, however the right breast cancer was quite diffused from 1 mm from my chest wall to a centimeter from my nipple. After much more (including trying to negotiate a continuity of care, which I lost, as I Iost my insurance between the two biopsies as well as my initial breast surgeon; needing a referral for a new breast surgeon; and trying to get my insurance to authorize a plastic surgeon out of network to perform a DIEP, instead of my new insurance trying to get me to go to an in-network plastic surgeon who would only do an implant post my mastectomy) my mastectomy with DIEP was scheduled for Oct 21, 2021.
It was an 8-hour surgery, as a DIEP requires a plastic surgeon with extensive training in microsurgery. (As a reference, a cardiac transplant is about 4-6 hours). A DIEP takes the artery and vein from a vessel in the lower abdomen along with the belly fat and implants them into the area where the breast tissue was, connecting the abdominal artery and vein to the mammary artery and vein. My ICU experience required at least 48 hours to ensure assessment of both the vein and artery every hour for 24 hrs then every 2 hours for the next 24 hours to make for sure the new connection to the mammary vessels are patent and not clogged or leaking. I also had three pulmonary emboli, with a heart strain, on my first day post-op that required an additional day in the ICU and blood thinners to dissolve my clots. [This] resulted in a huge hematoma in my new belly boob, from the resulting leaking of the ”thinned blood." (All that is in addition, but not my main point of my story, however important to my recovery.) Post my long recovery, I had a follow up with cardiologist to make sure my heart strain was reversed and my heart was back to being stable. All was good.
Now to the big point of my story, my second breast surgeon had ordered a mammogram of just my left breast 5 months after my mastectomy, saying I did not need a mammogram done on the right belly boob, as there was no breast tissue left. Then, 10 months post my right-breast mastectomy to assess my left breast to ensure there was no new cancer showing up there, my breast surgeon order an MRI to be done. I purchased my new insurance In Jan 2022, when I could purchase new insurance again, after my mastectomy, [they] denied the MRI even though I had a history of breast cancer. What the heck! I was paying $1,300 per month for my new insurance. It was a well- nown national insurance company. I soon found out that this was not an individual case, as I attended a breast cancer presentation at the University of Arizona at about the same time. Two of the breast surgeons on the panel confirmed that they get denied breast MRIs for breast cancer patients frequently. My MRI was finally approved only after my breast surgeon called my insurance company personally to advocate for me!
My breast MRI was done on September 7, 2022. Breast MRIs naturally do both breasts. On September 8th I got an email stating my results were ready from the radiology office. I pulled up the results, and to my bewilderment, something showed up highly suspicious of breast cancer -- not in my left breast, but in my right belly boob! It wasn’t until late the next day that I was able to reach my breast surgeon who ordered a diagnostic mammogram and ultrasound, which was done September 1. Are we having a déjà vu yet? September 27, I had a biopsy done on the suspicious site.
Well, wouldn’t you know, it’s Friday again, September 30, 2022, about 4:30, and the phone rings. It’s my breast surgeon with news. My biopsy showed ductal carcinoma, an invasive cancer. She of course felt terrible and had tears in her eyes when I met with her the following week. It was not her first time that residual tissue had been left post-mastectomy. I soon found out that this happens more often than is realized with breast surgeons, even the good ones. Research has demonstrated this. The simple mastectomies that are done today can leave residual breast tissue that may or may not still have cancer or where cancer can come back, at times more aggressive as in my case.
After much discussion, I went back to my initial and first breast surgeon that I lost when I lost my insurance the previous year due to my COBRA expiring. She too had this same experience with residual breast tissue, also a highly recommended breast surgeon in town.
So, exactly one year from the date of my right mastectomy with a DIEP, on October 21, 2022, I underwent a lumpectomy in my right belly boob. Pathology showed my original DCIS as well as the new ductal carcinoma. So, on November 30, I started my treatments .
I have had 12 weeks of Taxol on a weekly basis, with all of its side effects, including my peripheral neuropathy still today. Herceptin every 3 weeks, continuing today for a full year, as my pathology showed HER2+. Also, I have had a reduced 6 weeks of radiation, choosing instead 21 days of hypofractionated radiation to my right side of my chest, from the clavicle lymph nodes on top, to under my right belly boob, and from left my sternal lymph nodes to my right axillary lymph nodes. That resulted in the typical radiation burns with darkening of my skin and moles on my chest. In addition, I have lymphedema in my belly boob now, but gratefully not my right arm.
I also have an echocardiogram every 3 months to evaluate my heart from the side effects from the Herceptin, which can cause a decrease in one’s heart to contract effectively.
Thus far I am very grateful as my prognosis is excellent for recovery. During my infusions in the clinic, I witness patients in worse conditions than me. I am truly grateful and blessed!
I have joined the Cancer Action Network, the nonpartisan advocacy affiliate of the American Cancer Society to advocate for more education and awareness, not wanting to promote fear and/or anxiety about post-mastectomy residual breast tissue with the potential of residual cancer or reoccurrence of cancer. I want to see more research in this area.
When we look at the stats of 1 in 8 women will develop breast cancer, that’s a whole lot of potential residual breast cancer for those that have a mastectomy!
Why isn’t there a standard of care for imaging post-mastectomy, WITH insurance coverage for women and/or men!? According to the several breast surgeons, breast oncologists, and chemo infusion nurses I have spoken too, there is no standard of care for imaging post-mastectomy, and too many patients are denied the insurance coverage for an MRI even those with breast cancer history, like I was!
My mission is to bring education and awareness without promoting fear and anxiety to the public for breast cancer patients to advocate for themselves, especially those post-mastectomy regarding the potential of residual breast tissue to discuss with their breast surgeons about follow-up imaging, be that a mammogram for those with reconstruction or with ultrasounds and/or MRIs. In addition, I would like to see more research for statistics on residual breast tissue post mastectomy to prove how frequently this occurs, so that a medical standard of care will be developed and followed for post mastectomy imaging.
Then, insurance will have to follow for coverage for post-mastectomy imaging. I want patients to no longer be denied their right to post-mastectomy imaging to catch any potential cancer early, to avoid potential aggressive or metastatic cancer! After all, what does it cost for an MRI vs. expensive and long-term cancer treatment!
I was blessed. I knew to ask for and fight for my breast MRI, which found my early residual breast cancer early so that my prognosis is very good. But, what about those that don’t get their MRIs due to denials by insurances and they can’t afford to pay? Are they at risk for residual breast cancer -- and worse yet metastatic cancer -- if [they are] not able to get the appropriate imaging or if it [is] never discussed as an option as it is not a standard of care?
Please review the research and statistics done on post-mastectomy residual breast tissue, the lack of a standard of care for imagining, and encourage the right for diagnosed breast cancer patients to continue to receive the appropriate treatment with insurance coverage with continued screening to help prevent metastatic disease!
