At my Young Survivors group last week, a woman burst into tears. Fresh from a recurrence and a double masectomy, she was in pain and frightened. Pain because of the type of reconstruction she had at the time of the surgery. Frightened because it was a recurrence.
Many cancer survivors live in fear of a recurrence. Once you’ve had breast cancer, fought it, and won, you’d think that you’d struck a major blow, and that now you would be safe from it. But the truth is that breast cancer survivors CAN get it again — even if they’ve had both breasts removed. Often, it’s even worse the second time, as the recurrence is actually a metastastis — meaning that the cancer has spread to other organs or to the bones where it can’t be cut out and can only be treated with chemo, hormone therapy, and/or radiation. It’s not a diagnosis that anyone wants to hear.
In IBC patients, 90% of us will have a recurrence, typically within a few years of our first victory.
I should say something about reconstruction here. Breast reconstruction takes many forms; survivors can choose to some extent, but typically one form or another is indicated by the type, size, and spread of the cancer, as well as the health of the person in general. I have to admit that I’m no expert here, as I’m just learning, but the major types that I’m aware of include:
- no reconstruction;
- careful stitching and smoothing by a plastic surgeon, but no rebuilding or reconstruction;
- saline implants;
- silicone implants; or
- use of a patient’s own muscle and skin from elsewhere in the body to form a breast.
The last one is very popular among cancer survivors, but it can be tricky, since it effectively doubles the number of surgery sites (and temporary drains) and increases healing time over the no-reconstruction option. Skin and muscle can be taken from the belly, back, or buttocks for this surgery.
In my friend’s case, she had muscles cut from her back and pulled around and under her armpits to rebuild her breasts. Months later, it still wasn’t comfortable, and as a result she had pain and feelings of tightness both in her new breasts and along back where the muscles came from. As you can imagine, it was making her cranky.
She cried that night.
We rallied around her and shared our own stories — including mine, where I shared that I can’t have any reconstruction because my chance of recurrence after survival is still 90%, and the doctors want to keep the site clear for monitoring. Any reconstruction besides the transfer of skin (which I will have to have, since mine is severely damaged and the lymph nodes are clogged with cancer) would simply get in the way of monitoring any recurrence of the cancer, or the formation of new lumps in an unrelated cancer.
She asked us how we could be so strong.
Some women shared what — or who — they’re living for. Some shared that they’re just living. I shared something that I’ve been thinking for a long time, but I haven’t articulated it here before. Yes, I’m living for my baby boys and my husband and my family, and for the chance to still make a difference in the world. But when I’m really down, I think of it another way.
I could have been hit by a bus on June 16 and died instantly. Instead, I was hit by the cancer bus — and given a chance to fight for my life. In gratitude for that second chance, I will fight this beast, and I will survive and enjoy months or years that I wouldn’t have gotten in the other case. Truthfully, I already have.