My encounter with Breast Cancer: A list of essays/posts I need to write (an iterative list)

• Information for large-breasted women who have a lumpectomy and are going through radiation: Where do you buy appropriate (especially for work) bras?!
• Information for large breasted women who still are going through breast cancer radiation with breasts: what do we need to know?
• Body positivity and the medical establishment–if I am an overweight person, I am aware that I’m overweight. Why is it on the front of everything you give me? AND, why are you talking about it all the time? I read. I know about optimal weight and recurrence risks. I’m here because of cancer.
• Why do doctors always suggest weight watchers? Why don’t they refer patients to nutritionists/training programs? When are you going to ask me helpful questions? Would you like to know about my dietary issues?

Surgery: Check, Next up? Radiation

Checking in…exactly three weeks after my lumpectomy. Today, I was able to remove the steri strips. The surgical site healed really well. The pathology report was good– There was .9 cm of abnormal cells, they have left the building, margins were clean, and everything was as expected (no invasive cells, further discoveries, etc.)

Now, I can do normal activities without restriction–swimming, yoga, lift more than 10 pounds on the right side. I’ll be throwing myself into as many of those “freedoms” as I can, because I have one week before radiation starts, and my skin begins to burn.

Recovery from surgery was easy. Surgery was on a Friday and I was back at work the next Tuesday. I have been spending lots of time going to doctor’s appointments. I feel like it’s my new hobby. I am very excited, however, to have a week without appointments coming up.

Medical Oncologist Appointment: After radiation, I’m going to start Tamoxifen, which is the anti-hormone medication that pretends to be estrogen and attaches to your cells. I was really nervous about taking this medication (still am), but I’m very pleased that the oncologist agreed to a lower dose. There’s a new study that came out in December which followed patients taking 5 mg, vs. 20 over three years with similar results. Hopefully this will minimize the side effects (all the side effects of menopause, but you’re still supposed to get your period). I went to the gynecologist to learn more about what could happen and what to look for. She was more informative in regards to what can happen to your period, which was helpful.

Radiation Oncologist Appointment: I will be doing 27 sessions of radiation of the whole breast. If I was over 40, I might have been eligible for the accelerated version of radiation. But, I’m not. This is going to be a slog. I’m dreading the next couple of months. Hopefully, I can stay on top of the skin side effects and work to minimize the fatigue through exercise. I’m buying various skincare products that are supposed to help (I’m balancing being prepared with over-buying random expensive creams). I did get a good radiation time that doesn’t interfere with work–7:30 AM. Radiation starts April 3. *

I’m going to try to enjoy my last week of “freedom”!

*You may be wondering how you can help, which I really appreciate. If I’m experiencing significant fatigue, I may reach out for help with daily living tasks (groceries, laundry, cleaning). Otherwise, I am sure I’ll need cheering up because I know I’ll burn pretty bad (fair skin and all). Text me/FB message me funny/cute photos or videos of dogs or other animals (sorry, cats don’t really do it for me) after April 3. Or say hi and tell me about your exciting life (I guarantee it’ll be more interesting than a play by play of my skin burns)

Surgery Week

The wait for genetic testing results was really really long. First I wasn’t thinking about it. Then, I was reminded that if I had one of the 9 mutations, I would have to make a big decision about a mastectomy. A big decision I didn’t want to make. It was more about the length of time the surgery recovery would take than the implications of the surgery for me.

I went to LA a couple days early for a conference, a trip I had planned long before the chaos of the last couple of months. I didn’t do as much planning as usual, since my time was spent working (work has been so busy), worrying or going to doctor’s appointments or mourning my grandpa. But, I love traveling. And my grandpa loved to travel–and loved that I loved to travel. He knew I was going to Long Beach, told me to visit the Queen Mary. (Side note: one of my colleagues got bumped from their hotel and stayed there and apparently it’s no great shakes) And so I went. I stayed in this vintage, very simple motel (also very clean and safe) on the edge of Hollywood, adjacent to Thai Town. A good decision. I saw the real LA: the drag queens, the homeless, the yuppy gay men. (is yuppy still a thing?)

I spent two full days playing tourist–The Getty, Skirball Center to see the RBG exhibit, a walking tour of Downtown LA, and a visit to Cocobella (maybe not so touristy), really delicious vegan ice cream. It was fun and my days were filled. I used public transit almost exclusively (yes in LA) But, I spent my nights worrying about this genetic test.

I was so relieved to get the call (received, of course, during the walking tour) that I had “reassuring results”. I talked to the Genetic Counselor the next day and found out I was in the clear. No prophylactic mastectomy for me. I was in the clear. I’ve requested the second genetic panel, which will give information regarding genetic mutations of moderate risk. And then, they will let me know what they think my family should do (should they test? or no?)

I got back from the conference (in Long Beach) in the wee hours of Saturday morning. The conference was good, one of the best I’ve attended.

I had the pre-op appointment today and I’m in the clear as long as I don’t get a bad cough in the next couple of days.

Surgery is on Friday. I get a radioactive bead placed at the site using a Mammogram on Thursday (I’m taking the day off because, really, who wants to go to work with a radioactive bead in their chest? I don’t). My parents will be here. The recovery is supposed to be relatively easy. It’s not a big deal surgery. But, it’s real. This is a real thing that is happening to me. And hopefully it’ll continue to be “not that big of a deal.” But, it’s still annoying and time consuming and sucky. Oh, and I’m sure I’ll meet my out-of-pocket maximum on my health insurance this year. So there’s that.

I’ll let you know how it goes. Don’t worry, I don’t do photos!

It’s Stage 0: The Surgeon’s visit/Where we are now

I was referred to the head of the Breast Center at NorthShore University Health. Dr. Y has a good reputation. My aunt reached out to her network to see what people thought (I was also looking for a dr. for a second opinion). And they liked her.

I liked her. She was very business-like but kind. She tried to put me at ease (not really possible). She answered our questions. My aunt came with me and my parents were on the phone.

She told us about DCIS. She talked about the lumpectomy, getting genetic testing, radiation (starts after at least a month after surgery), etc. She talked about a national “wait and see” study. The thing about DCIS is that it is diagnosed a lot. And since it’s non-invasive, they don’t really know when it jumps over the barrier into Stage 1 or invasive cancer. They used to do mostly mastectomies, but now many people get lumpectomies. If you start reading the forums and message boards, though, you do see a lot of women doing aggressive surgeries, especially in light of genetic mutations that put them at high risk.

My age puts me at high risk. And, I didn’t qualify for the study immediately because I’m under 40. (I suspect that other things would have disqualified me anyway). I would have been interested but it would have required discussion with my family (and there were already concerns).

I left the appointment with my head spinning. But, I feel like I’m in good hands, and the hospitals are convenient and high quality. After taking time to process and do more research, I decided to NOT get a second opinion right now. DCIS seems to have a fairly normalized treatment and NorthShore is a good institution. And I don’t have to drive downtown for treatments or appointments. I might change my mind further in the process or if I get a new/different diagnosis down the road (fingers crossed that doesn’t happen)

How I feel:

I’ve been sharing the news with friends and co-workers including my boss. Everyone is supportive. I’m overwhelmed and still processing things. I mostly feel annoyed by the inconvenience. My career has recently taken off and I’m really enjoying the work. Now, my health is going to be more of a priority. Like many people, taking time for myself/prioritizing myself is not my tendency. I’m also not super surprised, due to family history and my experiences with autoimmune diseases.

Important dates

• Genetic testing (results arrive in about 10 business Days): Thursday, Feb. 7
• Surgery: Friday, March 1

It’s Stage 0: Continued

On Tuesday night (January 22, 2019) I went to bed early so that I could read my book. At 9:45, my phone rang. It was my Dr. (Dr. S). She asked if she could talk to me about my biopsy. Obviously, yes. And then she said the words abnormal and Stage 0 and more. I got out of bed and got my notebook and pen and started to take notes. The biopsy showed that I have Ductal Carcinoma in Situ. This is a Stage 0 Cancer/Pre-Cancer. Some people say it’s cancer, some say no. My surgeon called it a dangerous lesion. It’s 100% curable, but you are at risk for further breast cancers. It’s noninvasive and slow growing. (for reference, mine is Grade 2 and hormone receptor positve (both estrogen and progesterone0. Dr. S went on to say that she was referring me to a surgeon, that I would have to have a lumpectomy, and radiation, and then go on an anti-estrogen drug. Oh, and get off your birth control immediately. (Sidenote, I am one of those people who uses birth control to never have a period, which probably hasn’t helped the situation.)

I did cry on the phone. (Yes, mom, I did cry). Silently. I got off the phone. Texted a friend. Debated calling my parents. Decided not to, because my parents have been through enough lately and they deserved to sleep. After talking to a friend for while, I decided that I needed to do something else. So I hung up and then did all the research (that my friend told me not to do, but I always do all the research!). Unsurprisingly, I didn’t sleep much. And called my parents right away in the morning.

The surgeon’s office called me the next morning at work and offered me an appointment on Thursday at the end of the day. I was surprised how urgently this was treated for non-invasive, not-life threatening cancer that isn’t quite cancer.