My DCIS experience from Surgery to Tamoxifen

LittleLori

I thought I'd share my "not as awful as anticipated" DCIS experience, for those who are starting from a similar place as me regarding diagnosis, age and health. I'm including my health history, as it seems that other medical conditions can be a factor in severity of side effects, and I was generally healthy to start. I won't say this was a walk in the park, but fortunately several of the fears I built up in my head never materialized. I know everyone is different, but perhaps I can help alleviate some fear.

Background: Diagnosed at 49, I'm somewhere between pre- and peri-menopause; 5'2" and slender with A-cup breasts; history of Atypical Lobular Hyperplasia--benign surgical biopsy in November 2014; history of osteoporosis (hereditary); seasonal allergies; otherwise in good health.

Family history: Sister diagnosed with Stage II, HER2+ breast cancer in November 2016, no other family history.

Diagnosis: Received the dreaded call on November 9, 2017 after a stereotactic core biopsy showed DCIS (100% ER+/PR+) in the upper-outer quadrant of my left breast.

Surgery: After 2 opinions resulted in the same recommendation of lumpectomy, radiation and hormone therapy, I decided to proceed as recommended. I had the lumpectomy on January 2nd. The needle localization was the worst part of the surgery, but I think that was because I had developed a very large hematoma from the stereotactic core biopsy (they didn't like the chip placement, so they did it twice), so the mammogram to place the needle was quite painful. The surgery itself was uneventful, and the surgeon was able to remove the cancer cells with a good margin, along with what was remaining of the hematoma, through an incision along the edge of my areola so it is barely visible. Took pain meds the day of and two days after, then switched to Ibuprofen.

Radiation: I was offered traditional (7 weeks) or hypo-fractionated (4 weeks) radiation, and opted for the 4 week schedule. I received 16 whole-breast treatments at a stronger dose, followed by 5 targeted treatments to the tumor bed at a normal dose. So I received the same amount of radiation as the 7 week course, but over a shorter time. This was immensely helpful, since this is a Mon.-Fri. adventure. From what I've read, the short-term SE are less and the long-term SE are similar. Because it was my left breast, I had to do deep breath holds. A sensor was taped to my belly to make sure i took a deep enough breath to protect my heart. The machine would stop putting out radiation if I didn't maintain enough air. They give you oxygen to assist with getting a good breath in. It took a good week to get used to this, and I had only one really bad day where struggled to get enough air. Most days I got the full amount of radiation with one or two breaths (10-15 minutes). My longest day took six breaths and 45 minutes. Try not to get flustered, it just makes it worse. The targeted treatments did not require a breath hold.

The longest part of the process is getting you set up on the table. Other than being topless in front of strangers and having to hold perfectly still, it wasn't awful and I didn't feel anything. My radiation dots (7 tiny tattoos) aren't really that noticeable. I used Calendula lotion 3 times a day throughout treatment and my skin held up well. It looked like a rectangle of a suntan with a hint of pink, thankfully I had no peeling. My nipple got VERY sensitive, but I found "Coobie" bras to be helpful ($20 online, and they often run specials). They have removable pads, which I used as they relieved some of the pressure off of my nipple while I was at work. After work the bra came off. I am two months out from rads and still have a little swelling and I also have some sensitivity where my breast meets my rib cage (feels like a bruise), but I understand that this is to be expected. Still really tired by 9:00 each night, but not sure if there is some leftover fatigue, or if it's all from seasonal allergies.

Hormone Therapy: Started taking Tamoxifen three days after rads were done. Week 1-horrible insomnia, melatonin helped a bit. Week 2-mild insomnia plus night sweats. Week 3-insomnia went away, no longer taking melatonin. Week 4-night sweats became less frequent, 0-1 per night instead of 3-4. Things have been about the same since then, so it's definitely tolerable. I haven't gained weight in pounds, but I have developed a "pooch" that I didn't have before so my skirts and pants are tighter now. Hoping I'll be able to keep that in check as I am getting back to a more normal exercise routine.

I know it's difficult to do when you are frightened and facing the unknown, but try not to get ahead of yourself worrying about what "might" happen and take one phase of treatment at a time. Wishing you all the very best as you make your way through your own journey!