I have now entered a new phase of my life. Everything before February 7, 2013, is BC, before cancer. On February 7th, I was diagnosed with breast cancer. I had felt a lump in my left breast for two months. It seemed round and smooth to me (I’m a doctor, I should know, right); I thought it was a cyst. But my breast seemed to be changing. My nipple seemed to be tilting a bit, and I could feel the lump when I moved my arm.
I have never really had breast tenderness or changes in my breast associated with my periods. But both breasts seemed to be more tender and sore especially premenstrually. My left breast, in particular, felt heavy. I finally came to the realization that I needed to be evaluated. I started by seeing a general surgeon, who did an ultrasound exam of the mass. It was clearly not a cyst. I then had a mammogram and another ultrasound. The mammogram just said dense breasts. The ultrasound showed the mass, but it did not seem to have much blood flow. Bottom line, nothing suspicious.
So I went on my way for another week thinking I had nothing to worry about. The next week I had a breast biopsy on Monday. The general surgeon who did the biopsy said the lump was very firm. I could tell by how hard he was pressing on my chest to pass the needle into the mass. He felt like this was a good sign. Cancer is usually mushier, he said. So for a few more days I still thought I had nothing to worry about. I am low risk, young, no significant family history, no suspicious findings on imaging, and the mass itself seems favorable. Three days later I found out differently.
I knew I did not want to be treated at the hospital where I work so I was referred to a breast center about two hours from where I live. They got me in a few days later. I met Dr. L, who I immediately liked and felt very comfortable with. She thought I would be a good candidate for a lumpectomy based on my exam and imaging. We then had an axillary U/S, which showed a few borderline lymph nodes (in other words, cancer may have infiltrated my lymph nodes) and the decision was made that a lymph node biopsy would be low yield. Two days later I had an MRI. 45 minutes face down, couldn’t move, couldn’t even take a deep breath during it. I was told that breast MRIs are very detailed. It generates approximately 2,500 images, so it takes some time for the radiologist to read it. They thought I would get the results the following Monday. The Nurse Practitioner would call me then, and I would have another appointment with Dr. L on Tuesday.
On Friday, I got a call saying after my appointment Tuesday I was scheduled for a lymph node biopsy. Huh? I thought that was going to be low yield. What happened? Of course, the nurse who was on the phone to schedule me could not or did not tell me why. I spent the weekend feeling very unsettled. Someone had changed their mind about the lymph node biopsy. Did they know more than I did? Was it because of the MRI? Monday was a holiday, so I did not get a call with any results. On Tuesday, I found out that it was the MRI. The MRI showed a lot more disease than was previously thought by my exam and imaging. It also showed probable multicentric disease (that is disease scattered throughout my breast) which would eliminate the possibility of lumpectomy. I was frustrated that I had spent the long weekend wondering what had changed. I had gotten increasingly anxious and uncomfortable that something had happened to change the plan. I wished that someone had called me about the MRI, but then again it was much nicer to be able to talk with Dr. L face to face. In the end, I guess there is no better way to deliver this news.
I have just returned from two full days of counseling. Thursday I spent the day at an internationally recognized cancer treatment center. While I was there, I saw a surgical oncologist, radiation oncologist, and a medical oncologist as well as numerous radiologists. I had already seen a surgical oncologist, Dr. L at the large academic medical center closer to my home. She initially thought I would be a good lumpectomy candidate. However, my MRI obtained after my first visit was very different from prior imaging and showed multiple areas of concern. Much more disease than had been previously thought based on my exam, mammogram, and ultrasound. I was now no longer a good lumpectomy candidate. I had started thinking that this was not going to be so bad. Somehow breast conservation, saving my breast, had seemed like a simple fix. I don’t care about the cosmetic piece. The surgery seemed so much easier, and I felt that for the long term I would be able to tolerate the continued surveillance. Symmetry and continued surveillance are the biggest things to consider when decided to have a lumpectomy. As a physician, I have seen patients who have had breast reconstruction. It doesn’t look or feel much like a normal breast. Just when I was beginning to think it would all be OK, it now seems like it is going to be worse than I thought.
Dr. L told me most women in my circumstances just wanted to remove the entire breast and usually both breasts. I wanted whatever would have the best clinical outcome and get me back to my life the fastest. There is also a recent study that shows that women who have lumpectomy and radiation have slightly better outcomes over women who have mastectomy alone. So not only did it seem like a much easier surgery and recovery, people do better. But, it doesn’t matter because it is probably not an option now. However after going for a second opinion at the renowned cancer center, the possibility of lumpectomy is again suggested, and I start getting my hopes up – again.
The second surgical oncologist, Dr. S, says that after review of my pathology, the cancer is lobular adenocarcinoma instead of ductal. She also reiterates what I have heard before that all of the suspicious findings on MRI are not necessarily cancer. She seems to think there may be less disease than I was led to believe by the MRI result. Later in the day the medical oncologist, Dr. B told me that because of the way lobular cancers spread in fingerlike projections, there may be even more disease. One of the radiologists, who I saw during the day, agreed that MRI can have limitations and all that looks suspicious may not be. But then she said not likely in my case. I have a primary lesion at approximately 3 o’clock (if looking at the breast is a clock face) with multiple satellite lesions otherwise known as multicentric disease. Most are in the same area, but one is at 8 o’clock. If this lesion is cancer, then I will most definitely require a mastectomy. The only way to know if it is cancer is to biopsy it. I was about to have it biopsied two days earlier, but Dr. L had said I was not a candidate for lumpectomy under any circumstances, so why bother. It is all coming off regardless. Now, Dr. S thinks to be able to answer that question, lumpectomy vs. mastectomy, I need to know if the 8 o’clock lesion is, in fact, cancer. So after seeing the three oncology specialists, I went to radiology to have the suspicious lesion biopsied as well as have a fine needle aspiration of one of my lymph nodes. A very long, exhausting day. Then, on our way home, we went back to see Dr. L and discuss all the information again.
I am more comfortable with Dr. L. I feel like I can ask her any questions. I feel like we have had a very useful discussion even though she is not telling me what I want to hear. I feel more like a student with Dr. S. I feel like because I am a doctor I am supposed to know the answers to the questions I am asking. Numerous people have said I should be treated where I am most comfortable, and that is not at the renowned cancer center. I have moments where I wonder if I am making a mistake. Am I going to turn down a chance to be treated at one of the best cancer treatment centers in the world? I think so.
Just when I think I have settled on a treatment plan…I just spoke with Dr. S. The lymph node aspiration was negative for tumor. A good thing. Although I know that the aspiration is not definitive, cancer might still be in my lymph nodes. I have been trying to accept the fact that I will likely need a mastectomy. I spent the weekend thinking not only should I have a mastectomy, but I should probably have bilateral mastectomies. I had decided that since my tumor does not image well, ongoing surveillance on the other breast is going to be difficult. Reconstruction will also be easier if they don’t have to match the implant to a normal breast.
The biopsy result that will finally put to rest any question of lumpectomy is still pending. She reminds me that it is the density of younger breasts that make imaging not as helpful in premenopausal women. Of course, I may require treatment that will make me menopausal, significantly improving the ability of mammography for future surveillance. And thus removing the need for the bilateral procedure. I have been told that most women who have a unilateral mastectomy come back sooner or later to have the other side done. Both because they are tired of ongoing surveillance but also because they are tired of the asymmetry. One breast is sagging, one breast perky. One up, one down. So, if I am eventually going to want it done should I just do it now?
Maybe I don’t even want reconstruction. Seems sort of liberating to have them both cut off. I know it is a good thing that I have choices. It is the nature of today’s medicine for a patient to receive as much counseling as they can process and then make the best decision for themselves. Back in the day, I would have been told what procedure to have. So I know it is good. It also is a perfect illustration of how important patient education is. But trying to make this decision is so hard. It is crushing me.
We saw the plastic surgeon yesterday. Even though I am still waiting for one biopsy result, I know I am going to require mastectomy. The more I think about it, the more I realize that even if that last biopsy is negative, mastectomy is going to be the only choice. The plastic surgeon was lovely. At first I was surprised because she looked older than I thought she would be. But then I realized it was not her age. She was a bit of a hippie. I never expected a hippie to be a plastic surgeon. Never the less, she was terrific. We discussed all the different options. I had been thinking I might want to see what going flat was like, but that is probably not going to be a good choice unless I am sure I don’t want reconstruction at all. They use the skin from your current breasts for immediate reconstruction and, especially if I end up needing XRT (radiation therapy), which can shrink the skin, delayed reconstruction while possible does not have as good results. I should decide now. The bigger question is whether to have it done bilaterally. Bilateral mastectomy seems quite extreme when there is disease present in only one. However according to both Dr. L and the plastic surgeon bilateral mastectomy is more practical. People who do only the one side with disease end up coming back for revisions and thus end up with more surgery over time. I like to think of myself as a fairly practical gal, but I am not sure if I can do both. My primary concern is, what if I hate it. I know for one side I don’t have a choice. So I’ll have to live that. Once it’s done, it’s done. No going back. I can always have the other side done sometime in the future.
I spoke to the medical oncologist, Dr. B, from the cancer center today. She called to see if I wanted to participate in a clinical trial. I am eligible to participate in a trial using a new chemotherapy. But only if I do the chemo before surgery. It is in addition to the standard regimen. She thinks I have more disease than we can see by MRI, even though, that is already a lot. And that not only will I need chemotherapy, but that I need neoadjuvant, or before surgery, chemotherapy. I have been told that the only indication for neoadjuvant chemo is to downsize a tumor for lumpectomy that I cannot have no matter what. I certainly may end up requiring chemo or even choosing to have chemo. At my age, given the options of under treating or over treating, go with over treating. So chemo is likely in my future, but I want to make that choice based on the data from my final pathology. Even if it means passing up a potentially beneficial drug that I would have access to only through the clinical trial. I can’t help but think the oncologist is just trying to get people to participate in the trial.
I woke up in the middle of the night last night and started to panic about having surgery. I started to think about waking up from surgery in pain with a drain in and this weird fake thing on my chest. It made me cry. I have always had a love/ hate relationship with my breasts. I don’t even know if I would go so far as to say, love. But the thought of losing one is bothering me. More so than I would have expected. I know there is only so much I can do to prepare. And I am likely to shed more than a few tears while in the hospital. I have started to think more about neoadjuvant chemo. Chemo first would delay surgery and after dealing with chemo I think surgery won’t seem so bad. Pretty sure that is probably not a good reason to do chemotherapy first.
I am ready to schedule surgery. While it thinks it is highly likely that I will need chemo, I am going to have surgery first and get all of the pathologies back before making that decision. Now I am just waiting for a date. I was given the date of March 29th last week. Then yesterday, the nurse said maybe March 11. I had been happy with the 29th at first. Even though it seems like kind of a long way off, I felt like I had time to relax. It seemed far enough in the future that I don’t have to think or worry about it now. It was almost like it wasn’t happening. Then when she said maybe the 11th, even though that is in less than a week, I realized how much better it would be to get it done. Unfortunately, the 11th is out. Now it could be the 29th or maybe the 22nd or maybe the 15th. I want to know. My husband wants to know so he can plan his life. Unlike me, he is still working.
I ended up having surgery March 22, 2013, seven weeks after my diagnosis. I stopped writing during that time. I started again during chemotherapy. You can continue reading here.