The Cancer Center’s Story Project is an effort to capture stories from our community of patients, friends, family, clinicians, and staff who have been affected by cancer in some way. This is Anne's Story.
- We previously shared Anne's story, from Breast Cancer diagnosis through treatment, but here Anne tells her story in her own words, and shares how she is doing now.
- "Very often I think, I did everything I could, this is in the hands of the universe now."
How did your story begin?
"My diagnosis was in March of ’11. I’ve thought about this before, and the starting point is hard to find. The sickness part started in February of ’11 when I found a lump in my right breast. I was breastfeeding on a one-year-old, so I thought that it could be something to do with that but it felt different than what I had felt before. That started the process of getting a biopsy, getting an invasive in-depth cancer diagnosis that kind of launched me down that path. But the real starting point is my mom. My mom had died of pancreatic cancer when I was two, so cancer had always been a part of our story. My whole life I was told. 'Oh my god you’re so lucky that you don’t have a hereditary cancer, that your mom had pancreatic cancer, that’s just bad luck, not bad genes.' But when I was diagnosed I had the BRCA test and tested BRCA1 positive, and there is a dotted line to pancreatic cancer with that diagnosis. So I realized then that I did in fact have a hereditary cancer and that I was reliving history a little bit. My mom died when I was two and my brother was six, and my kids were one and five, so it was this haunting kind of déjà vu feeling that I felt; I could really see my dad feeling it at this point. I called to tell him that I had cancer and he said, 'I’ve been waiting for this phone call.' So it had been years and years of anticipating this happening."
"Instead of a lumpectomy I had a mastectomy, and that was followed by chemo that lasted for eight cycles, and then radiation in the fall, and then surgery to remove my ovaries in the spring of ’12. And during that time I was in a clinical trial for a drug that helps with bone density that would be impacted by all my treatments and by my ovaries being out. Because of that my contact with MGH stayed more regular then it would have had I just been on my own path, so I was able to see Dr. Moy once a quarter, which, from a cancer patient’s perspective, was a little bit of a gift. I liked staying in touch and feeling that somebody was watching me; I wasn’t just out in the wild west waiting for the cancer to come back. And then, time went on. You know, the first year was pretty intense with all of the treatments, and then kind of being done with treatments, then I thought, 'What do I do now?' This had been a full time job. I did go back to work and I worked for a couple of years and then decided to stay home with the kids who were growing up. I wanted to be with them. And now I feel well. I see Dr. Moy every six months now. I still call and say 'I feel something weird.' You know, this or that, and she tells me it’s probably a pulled muscle from yoga, or whatever. It’s never a tumor in my liver or whatever I think it is."
"I think my story starts with this hereditary piece. You know, my mom died and her parents had already died, so there wasn’t anyone else in her family. We did track down an uncle of hers, first cousin I think actually. He was a lot older. When I was sick he was in his nineties and he did a family tree for us and you could see the cancer come down through the men. It was all stomach cancer that came down and then my mom had pancreatic cancer, so you could really see the path. It was really fascinating to see this ancestral piece move through the generations."
Has your life changed since the point you were diagnosed?
"I wasn’t waiting for the cancer. But I have met through my experiences at MGH some families who know about the BRCA gene, know that they have it, that their kids have it. They are making decisions to have mastectomies or have their ovaries removed. I wasn’t living quite that way, but yeah I think there is a real pressure on families and on women, and I didn’t have that, happily. But I did know the intensity of losing a mom."
"But I did feel, when I was diagnosed, that it was a little bit of destiny. You know when that happened I went, 'Of course that happened' but I didn’t; I wasn’t waiting for it. My husband and I and the kids were always really healthy people in terms of eating kale and limiting our red meat and exercising and all of that, so we were doing that piece really well. And I think we continue to do that. I think what the cancer diagnosis made me do was to unpack a lot of that stuff. To think about why is this relationship so complicated or what does it feel like to not have this love or to have this love in a different way than someone else. To do that work, and it's not necessarily therapy - I’m not a great therapy person. I did work with Dr. Joe Greer here, who I really loved, primarily because well, I liked him for a lot of reasons. I liked the terms cognitive restructuring where it wasn’t just me on a couch saying that my mom died; it wasn’t that. What I perceive as therapy, which feels kind of decadent and self-oriented and indulgent or something, which I don’t think it is, that is just my impression of it, but this was a lot of homework. It would say, write about when you got your cancer diagnosis, or write about when you realized that your mom had died, and it was a different topic every week that was really intense, really emotional work to do."
"But I think that the cancer diagnosis and the treatment, you know, the consequences of all of that, pushed me towards self-evaluation. That is really helpful to having a happy and prosperous life in any case. You know people say that their cancer diagnosis was a gift, it made them appreciate everything a lot more. I think that concept is nice, it takes it a step too far for me, personally. I think that there were some silver linings of the cancer diagnosis, I wouldn’t go so far as to say it was a gift in any way. It did make me open my eyes to how lucky I am to have the life that I have and to say here are some issues that I should work through, to be happier, be healthier. Because I have kind of hippie-tendencies, so the concept that I caused my cancer I don’t quite go for, but I don’t not either. I think there were these places where I let the cancer get in. If I had done the work on figuring out the emotions around my mom’s death or worked on controlling my anger or whatever, the cancer wouldn’t have had a place to sneak in. And Dr. Moy would say that is not how science actually works. Anyway, I think that it has been helpful for me to go through the process in that way."
"I talked to a nutritionist right after I was diagnosed who was an energy healing type of guy. I had just been diagnosed and hadn’t begun any treatment and he said, 'Well, we need to figure out how you caused this.' And I thought, 'I didn’t cause it. I am not talking to you again.' It made me think, I know I didn’t cause it but how could I make changes so that, even if that concept isn’t true, that I feel that I am doing everything that I can, and that it’s in the hands of the universe, but I am doing what I can to protect me from this happening again."
A few years ago we spoke with you about your diagnosis and treatment; looking back now, what has changed?
"I had short hair so it was probably ’13, but the story, luckily, hasn’t changed that much. The emotion around cancer has changed for me. I consciously went back to work after I was sick, after all of the treatment. Numerous people have told me you have to go back, your whole story right now is this cancer thing. You need to go back and get your feet under you again, realize that there is a whole lot more happening in your life. And I did that for a couple of years, but I did think, and this is probably cancer related, that I wanted to stay home with the kids, and if I got sick again that I didn’t want it to be when I was color coding a spreadsheet, I wanted to be home."
"Leaving work was a big deal. The emotion surrounding it, the fear around cancer coming back, luckily all of that fades. I was told it would fade. And it really does. If I think about it and I get worried or I feel something or if I have a weird something going on, I see Dr. Moy quickly, or see Dr. Specht. So there is still some anxiety around the cancer coming back but that definitely has faded, I don’t think about it too much. And I do like how quickly I can see the doctors. I felt a weird lump that ended up being one of my stitches with some fatty deposit around it, but I think I saw Dr. Specht in a day, maybe. I like the TLC, or maybe it was just the schedule opening, you know it was just like a fluke schedule opening, but it just felt as if I am still getting a lot of attention which I think is important for a lot of patients."
Is there anything else that you would like to say?
"I felt very supported by my doctors here. At the end of my treatment we were in the room, in the basement of Lunder, and I said, 'What am I supposed to do now? I come here every day to Lunder, every day for months and you just see me out? That’s it?' And a very good doctor would have said to me, 'You know what, this is a very big deal and you have been doing this a long time and there is a great social worker who you should talk to. And it would be good as part of the transition anyway. You know, this is a trauma that you will be working through for a long time.' Instead, he sat down, he had his, you know he had his jacket on. And he sat down in a way that’s totally open to me and he said, 'Lets talk about it. You have choices here. You could go home and be so worried about it, you could just stay up all night, the cancer could come back! You’re right. Or, you could know that you did everything that you possibly could, you had the surgery, you had the chemo, you had the radiation, and go home and give your kids a bath. Go home and watch a movie. You make the choice here. You did everything you could, it’s really in the hands of the universe that it could come back, or not. So, you decide.'"
"And it was a little bit, a teeny bit of tough love, but also totally true. You can go home and be up all night worried about this. And envision what it will be like when the cancer comes back and you go through this again, or, don’t do that. So, it does come up. Not even in terms of the cancer coming back, but very often I think 'I did everything I could, this is in the hands of the universe now.' And it is this comforting, reassuring thing that came from this one moment of a doctor being the very best. And at MGH I have found that - treating me as a person, who has real concerns and real worries and real anxiety over whether or not that scan result is clean. The prime time treatment is something that I have found really incredible here, and I don’t think that every hospital delivers that."
Very often I think, I did everything I could, this is in the hands of the universe now.
This interview was conducted in December of 2017 and has been edited for clarity.