When it comes to treating cancer, the focus tends to be on side effects that will happen during treatment. And with good reason — chemo has intense side effects and radiation, while not as intense, does have side effects as well. There is less focus, however, on the side effects that can linger long after treatment ends. As such, I thought I’d detail the long-term side effects I experienced or am still experiencing from earlier treatments.
Lingering Surgical Side Effects
My lumpectomy was on October 8, 2024, which means it’s been about 10 months since surgery. Here are the side effects that are still bothering me:
- Breast Pain: I am still dealing with pain in my breast. My radiation oncologist told me she suspects lingering swelling from surgery is a contributing factor. This shows up under both surgical and radiation side effects because both treatments can play a role.
- Fat Necrosis: My recent mammogram revealed some fat necrosis at the surgical site, which can be caused by surgery and/or radiation and could be contributing to my lingering breast pain. This also shows up under both surgical and radiation side effects because both treatments can play a role.
- Numbness: My body is still numb from the inside of the top half of my upper arm, down through my arm pit and all the way down the outside of the right side of my breast. From what I understand, this is due to the surgical need to cut through nerves during a lumpectomy.
Lingering Chemotherapy Side Effects
My chemotherapy started November 12, 2024 and ended January 14, 2025, which means it’s been about seven months since chemo. Here are the side effects that are still bothering me:
- Curly Hair: Admittedly, this is a side effect that I love. My hair is back and it’s curlier than it used to be. I’m a huge fan and I hope it stays forever. My understanding is that post-chemo, hair can come back curly because the hair follicles are slightly misshapen. Namely, they’re a bit more oval than round. Here’s to oval hair follicles!
- Itchy Scar: While the scar from getting my port inserted was tiny and healed super well, the scar from getting it removed is large, sensitive and itchy.
- Nail Changes: This one is interesting because the docs warned me chemo could result in nail changes, but I never noticed any during chemo. I did notice them post-chemo, once my nails started growing out. The older parts of my nails were thicker, a different color and a different texture than the new growth. At this point, the chemo affected bits of nail have grown out and been cut off.
- Nasal Dryness: During the latter part of chemo and for several months afterward, the inside of my nose was extremely dry. It would bleed and scab regularly. I often used saline gel as a topical moisturizer inside my nose for some relief from the pain and stuffiness. Thankfully, the dryness has resolved itself at this point.
- Skin Peeling: Similar to the nasal dryness, my skin was peeling during the latter part of chemo and for several months afterward. Especially my face and particularly my nose. This has resolved within the past month or so.
- Weight Gain: When I first realized I’d be doing chemotherapy, I was excited for the weight loss side effect. Then I learned that breast cancer chemo drugs make you gain weight, if anything. And that they did. A combination of chemo, easy and convenient dinners and sudden onset menopause (which I’ll discuss in the next post) have been a perfect storm for significant weight gain. I am by far the heaviest I’ve ever been.
Lingering Radiation Side Effects
My radiation started February 17, 2025 and ended March 17, 2025, which means it’s been about five months since radiation. Here are the side effects that are still bothering me:
- Breast Pain: I am still dealing with pain in my breast. My radiation oncologist told me she suspects fluid in my breast is a contributing factor.
- Fat Necrosis: My recent mammogram revealed some fat necrosis at the surgical site, which can be caused by surgery and/or radiation and could be contributing to my lingering breast pain.
- Fatigue: It’s difficult for me to identify the source(s) of my fatigue when I have ME/CFS and POTS but I do think some of my fatigue is a direct result of cancer treatment. I assume it’s from the radiation, since that was my final short-term treatment.
- Muscle Tension: During radiation, I was directed to stretch my arm daily. When radiation ended, my radiation nurse told me I’ll need to keep stretching it daily for a year. I’m not sure why radiation makes the arm muscles tight, but it does.
- Skin Dryness: The skin on the treated breast is quite dry. My radiation oncologist instructed me to continue moisturizing it daily for at least six months following radiation.
- Skin Redness: The treated breast is notably pinker than my untreated breast. It was particularly stark immediately following my radiation treatment. It’s slowly getting better.
Cancer treatment doesn’t end when the treatments stop. While I’m grateful to be on the other side of surgery, chemo and radiation, the lingering side effects are still very much a part of my life. Some days, it’s frustrating to still be in pain or feel exhausted with no clear fix. Other days, I’m just proud of what my body has made it through — even if it’s still healing in ways I didn’t expect.
If you’re going through something similar, I hope this post helps you feel less alone. The lingering effects are real, and they deserve just as much attention and care as the treatments themselves. Be gentle with yourself. Recovery is not a straight line — and you’re not doing it wrong if it takes longer than anyone said it would.