From MRI to Plastic Surgery: Breast Cancer Update
Settle in, because this is going to be a long one. Last time I posted about my breast cancer diagnosis, I had been biopsied and was waiting for an MRI. That was less than a week ago and in the span of seven days so much has changed. I’m starting to realize that with cancer, things change constantly.
Over the past seven days many things have happened and I’ve received a lot of news. I’m not going to call it bad news because my definition of bad has shifted a lot since this diagnosis was given to me. I no longer measure things as bad or good based on my own fear in facing them. I measure them in terms of bad or good in terms of survival rates and lowering my percentage of a recurrence.
Genetic Testing
My genetic testing results came back on Thursday as negative. It’s amazing how getting a check in your favor after having so many not in your favor can feel foreign and I was shocked when the doctor called to give me the news. You forget how good it feels to let out a breath of relief when you’ve been letting out sighs and sobs for weeks.
The MRI
To say this was terrifying would be an understatement however in hindsight, after what I’ve been through emotionally in the past five days since getting the MRI, it was not a big deal at all. It was nothing compared to Thursday. The MRI was not what I had expected. I’ve had four previous MRIs, all on my back. This one was on my stomach in a strange contraption that allows your breasts to sit in pockets where they can be scanned and imaged. Your head goes in a hole, like what you put it in on a massage chair. Then, you wear earplugs, headphones, and are put into the machine. I was expecting none of this. I’m learning that doctors don’t always give you all of the information and oftentimes assume, perhaps, that you know what the treatment/procedure entails. I wish they would not do that.
I didn’t realize I would be getting a contrast MRI. I didn’t realize I’d be on my stomach in this strange contraption. If the doctor told me these things at our previous appointment, I didn’t remember, probably because I’ve been in a state of shock for weeks.
The technician performing the MRI was very nice. She had to do the IV twice because my vein collapsed, and I did my best to hold it together even though I hate IVs. Then, they put me into the contraption. But as they were putting in the earplugs, a strong wave of anxiety washed over me. This was too confining. To not be able to hear, be in such a small space, and in some sort of strange device was too much. I made it about 20 seconds and said I needed to go back out and get myself together. They were very nice, very patient, and let me calm myself down enough to go back into the machine. I had to take out the earplugs, and the machine was very loud, but it was the only way I was going to be able to get through this 30 minute procedure.
Looking back, I think I’d rather get back in that machine with the earplugs then go through Thursday’s appointment with the oncologist again.
The Results of the FISH Test
If you recall from my last post, I was still waiting for the results of the FISH test which was checking to see if one of my two tumors is HER2 + or -. The surgeon had assured us that there was only about a 10% chance it would be positive given the fact that the other tumor had come back negative. She was wrong, and I wish that doctors would stop giving percentages for things because it just sets patients up to be let down. This was the bad news I didn’t want to hear. A positive for the HER2 protein equals chemotherapy, the one thing I’ve been trying to avoid.
The Results of the MRI
The surgeon called me to give me the results of the MRI as well as the FISH test Wednesday afternoon. I knew when she started with the MRI results instead of the FISH test that it was positive for the HER2 protein without her even having to say it. Because I was too busy perseverating on the HER2 positive, I listened to about 10% of the MRI results. They had found two other masses in my left breast, and one small, .5cm visually unremarkable, potentially benign mass in my right. All I was thinking as she gave me these results was get these boobs off my body now. All of them. I was sobbing, shaking, alone, and terrified. She continued to read the results as I cried and barely listened. Something about two more biopsies, potential MR guided biopsies, and I had had enough. I said I didn’t want any more biopsies or tests. I wanted a double mastectomy and that was it. Then I said can you just give me the results of the FISH test and she said it had come back positive and she was so sorry.
We had an appointment scheduled for Thursday morning to go over the MRI results in more detail. I hung up the phone and was delusional. I cried and I perseverated and I reached out to friends who have had breast cancer, or had loved ones who had it. Then I called back over to the doctor’s office and said I wanted to know when I would be seeing the oncologist. I wanted to know why I was having my results read to me by a surgeon not an oncologist. And I was mad. I was really mad. The nurse let me be mad, she let me have what I wanted, to see an oncologist the next day instead of the surgeon, and I regret that decision entirely.
Fast forward to Thursday morning. My appointment with the surgeon was canceled and I was seeing the oncologist at The Elliot. First, I met with a financial person who tried to make me believe I would need financial assistance (I know my insurance policy and I know how this works, I’m not falling for your lies, lady), and then I met with the oncologist. The good news, even with a mask on, my oxygen saturation was 98%, thank you, hiking.
The oncologist clearly hadn’t read my MRI results prior to meeting with me and I don’t hold this against him, the appointment was made the afternoon prior. However, what I’ve been told by everyone since receiving this diagnosis is two things: advocate for yourself and your treatment plan should be unique and customized to your exact cancer because every cancer is unique. The oncologist started at the beginning, to finding the lump, and talked through all of the things that have happened since. When he got to the results of the MRI, he confirmed that I was planning on a double mastectomy and reconstruction instead of a lumpectomy and I said yes. Then he got to the important stuff: the medical treatment post-surgery.
I don’t know if this is normal and I have never been through this process before. However, I do know that it’s better to find out all of the information before making major decisions. His treatment plan was all based on the one tumor with the HER2+ protein. One out of five masses tested positive and we don’t know the pathology of the other masses. In fact, that tumor originally tested neutral and that’s why it was sent for further testing. In fact, the other tumor was strongly negative for the HER2 protein. This didn’t matter apparently.
His treatment plan was as follows, and bear in mind I didn’t write any of it down because he said it so fast I wouldn’t have been able to keep up. He stated that he would want to take an aggressive approach. That post surgery I would begin with six weeks (I think?) of chemotherapy with _____ types of medicine, and receive infusions every other week. Then, I would receive an additional six(?) weeks of chemotherapy with ____ and Herceptin every other week, followed by Herceptin every 3 weeks for the remainder of a year. I don’t remember what any of the drugs' names were because he said them so fast. All I remember is a year. A year gone. A year sick. A year lost.
I am stubborn and I don’t trust most doctors. I don’t think they know what they’re doing or care and I know that isn’t true of all. After he told me all of this he went on to say that there was no reason to test the pathology of the other three lumps because all he needed to know was that one was HER2+ to make his recommendation. I straight up told him that I wasn’t going to do that much treatment without knowing the pathology of all of the tumors. I said I didn’t agree with his treatment plan because my lymph nodes were still not showing any signs of cancer. That I would want to know if it has spread to my lymph nodes. I said if it can skip over the lymph nodes and go into my body, then why even bother testing them at all? Why not give every patient the most aggressive treatment because it could spread in every case. Most importantly, I said that I wanted more information.
I felt like I was talking to a sales’ associate trying to sell me the most expensive car. That I needed all of these bells and whistles just because. Without knowing what my lifestyle was. It was horrible. Looking back, maybe I do need the most aggressive treatment. But without data to back his decision, because he couldn’t even give me percentages of likelihood that it would recur or not, I wasn’t going to buy his “car”.
Thursday was rough. It was rough for me and it was rough for Jason. I realized that there are going to be big changes that I have to make to keep my sanity and his. I can’t hike until I know the rest of my life, including graduate school and my treatment are settled. But, I realized for the first time, I think, that I’m not in this alone, I’m not the only one going through it, and Jason is in this just as deep as I am.
The Plastic Surgeon and A Glimmer of Hope
I love my plastic surgeon. I told him that I want him to be my oncologist. He was in no rush to get me out the door, he talked to me about my lifestyle and was genuinely interested in helping me. I went into the appointment with the idea that I would be getting a one and done surgery because that is what was presented to me by the surgery team regarding a mastectomy with implants. WRONG
The nurse who met with me before the surgeon talked extensively about what a double mastectomy with implants entails and I was terrified. First they do the mastectomy, then the plastic surgeon puts in expanders, which are hard plastic things that are sewn to the muscle in the breast and then filled with fluid to expand the pocket in order to fit the implant. There are drains, no showering for two weeks (eh, not a big deal), and then another surgery. After the treatment is done. In other words, based on what the oncologist presented for a treatment plan, I would have expanders in for a year, then another surgery, then a six-week recovery after that surgery. She was adamant that I wouldn’t be able to continue grad school with this surgery because I would need the full six weeks to recover.
If the goal was to change my mind about a mastectomy/implants, then man it worked. But, what the plastic surgeon did that gave me so much joy, was he treated me like a person, not a patient. After talking to the nurse, seeing the expander and implants, the doctor came in. He asked me about my hiking. He said, how much hiking are we talking about and when I told him that I’ve done almost 900-miles this year alone, I felt proud that he thought that was a lot of miles. Apparently I am sort-of an athlete.
He pondered and I love ponderers. Then he gave me hope. I haven’t had hope in weeks. His recommendation was twofold. First he shared that given the amount of hiking I do he was hesitant to do implants because the skin between my pack straps and my implants would be very thin and it may rub right through (gross!). Then, he said because I have so much breast tissue, and if I was willing to lose the left nipple, he had a plan. He asked if I would be open to a lumpectomy of the left breast, removing all the necessary tissue, and then a breast reduction on the right to make them symmetrical. I said, for years I’ve wanted a reduction. And I can tell you, as I type this I’m smiling. He gave me hope.
I left the appointment with several more appointments added to my already busy calendar. He said he would call my surgeon and discuss the plan with her, see if she would be in agreement that this would be ok, and then someone would get back to me next week. Given the fact that she never recommended the mastectomy to begin with, I am praying that she agrees to his plan: a lumpectomy, reconstruction of the left breast, and reduction of the right with a removal of the small mass in the right breast.
Going Forward
My calendar is full and I am ok with that. I am ok with putting hiking on the backburner, heck I’m ok with taking it off the stove altogether for a bit to focus on my health. I have surgery scheduled for the 17th, will have to get COVID tested on the 15th, and have my pre-op appointment on the 14th. Between now and the 17th, I’m praying that the surgeon will agree to my new plan of a lumpectomy only. I’m willing to do more biopsies prior to surgery, if needed. In comparison with the recovery and additional surgery needed for a mastectomy, I welcome more biopsies.
Regarding the oncologist, I am going to be seeing a different one. The Dana Farber Center in Londonderry will be calling me next week and post-surgery I will meet with another oncologist to talk about the pathology and treatment.
In the meantime, I’m learning that the only way to get through this is one step at a time. One day at a time. To not focus on the potentials, not look past today, because things are going to change constantly. To be willing to go with the flow, but never stop advocating for myself. Be open to the recommendations, even the ones I don’t want to hear, because this is quite literally life or death.
A New Perspective
I went to bed last night and laid there thinking like I do a lot these days. If I had to go through chemotherapy, lose all of my hair, be uncomfortable, scared, and sick for a year, because if I didn’t, it would mean I couldn’t hike ever again, there would be no question, I’d do it. If that was what this was all about, then I would do it in a heartbeat. If having chemotherapy will lower my risk of recurrence, eliminate the chances that if a cancer cell slipped through it would grow, I would do it. Rather than focusing so much on not being able to do this, because of my panic disorder, I’m focusing on how I can do this because I have done hard things before, and if this was a hike, I’d do it despite the fear. Because I pushed through lots of panic attacks on-trail because I had to, so I will push through this, too. If I have to be “doped up” and sedated every time I go in for chemotherapy to get through it, then I will do that. I know that my primary care doctor would do that for me, because this quite literally is life or death. Treatment means life.
For now, I’m focusing on today. I’m learning to look at the small picture. My first week of graduate school was an eye-opener, and after seeing the difference between Writing classes and Comp classes, I’m positive that I want to pursue the PhD in Composition versus the MFA in Writing. I will be contacting the school Tuesday to drop down to one class, my comp class, for the remainder of the semester because I can’t do it all, and I don’t want to take classes I don’t need if I’m pursuing a PhD. I am praying that my comp teacher will be willing to write me a recommendation letter at the end of the semester and I’m praying even harder that I get into the doctoral program for next year.
Regarding Redlining
After seeing just how much reading and writing goes into an MFA in Writing or a PhD in Composition, I am convinced I cannot hike more than one day a week while being a full-time graduate student. What does that mean for a single-year redline? It means in all likelihood it isn’t doable. Not while working on a PhD. Not with my hikes planned the way I have them planned at this moment. So what will I do? Will I not pursue a single-year redline? No, I still want to do that. I still want to do a single-year redline. This winter, when I have more time, I’ll look at the routes I had planned originally, and depending on whether or not I get into the doctoral program for the 21/22 school year, depending on if I am cancer-free next year, I will think about how to work in redlining. For now, there are two things I have to focus on: getting healthy and graduate school.
Maybe it won’t be next year that I pursue a single-year redline, maybe it will be in several years. But one day, I will do it. For me. Not for publicity, not to set a record, just because I want to. For now, I will settle into a new, temporary life, spent mainly at home. I will spend time with family and friends, buy mums, burn cinnamon-scented candles, and wrap a blanket around my shoulders. I’ll watch The Office, write, study, and rest. I’ll do all of the things that I don’t get to do while redlining. I’m actually enjoying this slower, more relaxed pace for now. And when I’m all better, when things are more settled again, I will go north to my home away from home.
