Continuing Journey Into BRCA2 Gene Diagnosis

In November of 2021, my first breast MRI on my new plan to monitor aggressively for any sign of breast cancer yields an all clear result. Yeah, I am free to enjoy life. Another six months goes by and my regular mammogram is scheduled for May of 2022. I have no more than gotten home for a few hours and I make the call back to see if more imaging is needed. “Yes,” says the voice, “you need to call to set up a time for more imaging.” You have got to be kidding me. I return the next day to the clinic for diagnostic imaging of my right breast where they can’t quite make out what they are seeing. Afterall, I have dense breasts which makes for challenging imaging anyway. I am not all in the mood for this. My breasts tend to be sore on a good day without someone putting them in a vise. Now for the diagnostic imaging, a 6×6” plate or even smaller is used to depress that area of breast tissue even further. I grit my teeth and make it through the first round the best that I can. Then I am asked to wait until someone checks the images in case they need some more. Pretty soon, the tech is back again for more. I grit my teeth again and sob my way through the next round of torture. I am about to totally lose any emotional control that I might have had. Whoever said that mammograms are only “pressure” and not pain do not know what they are talking about. All I want to do is get as far away from this place as possible. I mentally make the decision that if the tech comes back the third time, I am going to get up and walk out.

“You can go,” Finally is sent my way.

The images are read as normal, and I am able to push this trauma out of my mind for another six months. I diligently set up for the yearly breast MRI in December. I ask my primary doctor for the pre-medication orders of methylprednisolone and Zyrtec to try to prevent the allergic reaction I have previously experienced. She insists that the protocol is for methylprednisolone and Benadryl, the standard antihistamine. I try to explain to her that this is not what I used the prior time or what worked. Finally, I give in and agree to try the meds stipulated by the protocol.        

The day of the MRI, I do my pre-meds as ordered and proceed through the procedure with no immediate reaction. Well that is done! I breathe a sigh of relief. I am done for another six months or so I think. But as I undress for bed a couple of hours later, I show my husband the red raised rash and hives developing on my arms and legs. They are just beginning to itch. This will go on for several days. So much for the pre-medication working to prevent this.

And then one day later, I read the MRI report. “Interval development of a curvilinear nodular non-mass enhancement in the subareolar right breast, slightly lateral, slightly inferior anterior depth. Differential considerations include an intraductal process such as papillomas or possibly inflamed periductal fibrosis; however, atypia or malignancy cannot be entirely excluded.” Why would I think that I would be home free? It has been nothing but agony since I agreed to this path of aggressive monitoring for cancer. And of course, the recommendation is for a right diagnostic mammogram and a second look ultrasound examination of the right breast finding. If there are no correlating mammographic or ultrasound findings, MRI guided biopsy is recommended. I am in a panic. I can’t tolerate another breast smashing mammogram. Is there no way to escape this lunacy? I ask, if it is going to end in another MRI anyway, if I can just do the MRI in spite of the allergy and get it over with in one fell swoop? “Oh no,” is the response, “we can’t do that without doing the other tests first.” Totally frustrated at the lack of flexibility of all involved, I finally give in to all the pressure to follow the protocol and schedule the diagnostic mammogram and ultrasound. The mammogram shows nothing, but the ultrasound is able to see the area identified by the MRI. “It looks like inflamed periductal fibrosis,” says the radiologist who checks the results. “I don’t think it is cancer. You can have a biopsy now or wait another six months and see if anything develops further. But I don’t think you need to worry too much.” I am relieved. But in the radiologist recommendations, he writes, “recommend an MRI guided biopsy.” Really? So we are right back to doing the test I am allergic to with no real reason to do so at this moment. Didn’t I offer to do this before we wasted money on the mammogram and the US? But no, that just was not possible.

And my breast clinic doctor, whom I have asked to see for her opinion, now gloms onto the recommendation and can’t let it go. If I have to do another reaction producing MRI, I wonder if I can wait the six months until June, have the MRI and do the biopsy at that time if necessary to limit my exposure to the dye. But again, the answer is “No, we can’t do that?” I feel unsupported, unheard, and am left swimming with no acceptable options. I remind her that our original plan was to move forward with the bilateral mastectomies if anything was ever found. “Can I see a surgeon?” I finally implore, “Mastectomies would solve the need for all these tests.”

With resolve that this is the right path, I show up at the surgeon’s office a few weeks later for a consultation. He sits down and addresses my hubby and I, “The statistics show that for a woman your age, intensive monitoring and other interventions we have these days will result in your life expectancy being just as great as if you have the mastectomies. Mastectomies will result in your being numb, can result in infections, and you might not like the cosmetic result. There is no statistical benefit to having mastectomies. If it is the MRI allergy that is your primary concern, there is molecular breast imaging and contrast enhanced mammograms for screening.” Nothing like dumping a bucket of cold water on one’s head. I just stare at him over the top of my suffocating mask.

“You look skeptical?” he questions. I don’t know what to say. I think there is something missing in this research, something this young surgeon is not acknowledging. What I am hearing is that the end point of the research was length of life. The studies have totally missed quality of life. When I get cancer, THEN I can have surgery, then chemo and radiation, and finally I can take the toxic verzenio and aromatase inhibitors for the rest of my life. That sucks! And why would I want a life like that? Is it because I am old? At 65, I am being written off?

 But I cannot escape the bias being thrown at me and I begin to think that maybe these other tests (the MBI and Contrast enhanced Mammogram) might be acceptable options, allowing me to avoid surgery. By the time we leave, I have agreed to hold off on surgery and consult with my breast doctor again about these other options. Maybe there is an answer besides surgery that is tolerable. After leaving the surgeon’s office, I go home and do some research. Both of the recommended alternative tests involve mammograms with injectable substances. One involves IV contrast and the other involves radioactive dye. I suspect that I might also react to these substances as I have started to react with these types of rashes and intense itching to strange and unknown conditions over the last several years – too many mosquito bites in a short time span, sunshine alone, and who knows what. Sometimes, the insanity rousing itching will last for up to 6 to 8 weeks during which nothing provides relief. I am not sure I want to attempt any of these.

Back in the breast physician’s office a few weeks later, I am met with the same attitude as the prior visit. Behind the scenes, there has been much discussion about my situation between the surgeon, genetics, and her with little agreement between parties about the best approach. Dr. Breast is reluctant to allow me to try the MBI. She mostly is stuck on having me do an MRI guided breast biopsy.

“They didn’t find anything on the ultrasound,” she declares, “so an MRI breast biopsy is necessary.” I am totally frustrated. What part of ‘I am allergic to the dye’ do you not understand?”

“That is not true,” I repeat to her several times, “They did see the area on the ultrasound, and it was not thought to be cancer.” Certainly, I am not the only one with this issue. There must be other methods of doing a biopsy. But the doctor offers no other choices and I feel backed into a corner. I finally agree to schedule the MRI guided biopsy. But I feel like I have totally lost control of my life and am getting closer to refusing any interventions, of just going home and living my life until I die from whatever it is that is my fate. By the time I get home, I realize that I have just gone in a big circle. I am back where I started. I want relief from this craziness. I call to reschedule the mastectomies.

To top off the madness and add stress to the process, I discover that Medicare has denied payment for the visit to the surgeon because “the visit didn’t indicate why it was medically necessary.” I have only been on Medicare for six months and already this. I chose Original Medicare plus a top-of-the-line supplement because one supposedly doesn’t need pre-authorization to see a specialist, and everything was supposed to be covered except a $226 deductible. Now I find out that they can willy nilly deny coverage for just about anything if they can deem it “medically not necessary.” Where does it end? At the grave, I guess. I have begun to question all choices, but I am determined to follow the only path that seems to offer some freedom from constant contact with the medical system and their inflexible protocols. I think I am developing a panic disorder that is activated every time I see the inside of a clinic. I am hoping there is sunshine and happiness on the other side of this surgery.

Surgery is scheduled for Friday, March 31, 2023. My scheduled time to show up is 8:15 a.m. This tells me that I am not a first case, and it will be close to noon before surgery begins. Being a six-hour surgery, this concerns me that I have little time to recover afterward before the outpatient unit closes at 9 p.m. But there is not much I can do about it. I can only hope that everything will go smoothly.

My hubby and I arrive at the hospital around 7:30 a.m. The admission proceeds in an orderly and efficient manner. Then the wait begins. Around 9:45 a. m., I am wheeled to the pre-operative area. I send my hubby home to our daughter instead of sitting there anxiously waiting at the hospital. They will be sent texts periodically as the surgery progresses.

I am surprised when I am offered Celebrex, a nonsteroidal anti-inflammatory agent (NSAID) to be taken before surgery. I have been instructed not to take any NSAIDS for 48 hours after surgery because they can increase bleeding, so I find this perplexing. But I guess I am not to question such discrepancies. I do present my list of requests for the anesthesia side of things to the anesthesiologist. My one request is for Emend, a newer medication to prevent nausea.

“Sure,” he says as he walks out the door. “Can you take a verbal order for that?” He directs his comment over his shoulder to the nurse.

“Yes,” she responds but then discovers that she can’t give this particular drug without a written order due to cost. This necessitates a call to the anesthesiologist again to request that he put the order in the electronic medical record. An hour later when it is time for me to go to the operating room, he still has not entered the order. My assigned nurse anesthetist, in order to keep things moving, pulls the drug from PYXIS and comes to the pre-op area to administer it to me. I love nurse anesthetists. Afterall, this is what I have done for a living for 16 years now. They are that line of defense that is always at the bedside in the OR and providing for those small details that are so important to a great outcome for the patient. I drift off to sleep knowing that I am in good hands and will be well taken care of.

The first that I remember nine hours later is my daughter pushing Doane shortbread cookies towards my hand to eat. My brain is confused. I can’t find the words to finish a sentence, so I sound like a rambling idiot. I am told later that I had an adamant conversation with the surgeon about the pain medication I wanted but I remember none of it and his response was, “You are not competent to make this decision right now.” No kidding! Apparently, the nurses have also done all their required teaching on restrictions, drain care, and who to call if necessary but none of that is stored anywhere in my memory. I am thankful for my veterinarian daughter who has taken charge at this point. I have to ask her to repeat all of this information again at home. Within 15 minutes of finally recovering my faculties, I am walking around the unit and headed home. I think they are eager to send this patient home. I also later wonder what in the world I all said to those around me for those two hours that are totally blanked out even though, I am told, I was awake and conversing.

Recovery at home continues smoothly. I am relieved to know that no cancer was found by the pathologist in the surgical specimens. The only task is heal and get back to life. I take only two tramadol pain pills in the first two days. All I want to do is sleep after ingesting even a half of one, so I soon abandon that for alternating Tylenol and Duclofenac, another NSAID. This seems to control my pain well. By surgery day two, my daughter and I decide to take a peak at the result of the surgery. The Goldilocks reconstruction uses the skin of the breasts to make a small mound on each side. I am pleased with the outcome – not too big, not too small, but just right without any extraneous materials or needing to take from other areas of the body. That is why they call it a Goldilocks. Goldilocks tried the big bed, the small bed, and finally, the medium size bed which was just right.  I think I made the right choice. Well, maybe the right choice would have been to never have joined the Tapestry Study. Maybe not knowing one’s genetic predisposition is the right choice for some. And for me, I think not knowing might have been the better choice from a mental health state, even if the intervention might potentially extend my life cancer free. I keep saying to others, “Think carefully about what you really want to know before joining a medical genetics study.”

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