I thought I’d share the experiences of my breast cancer journey, hoping it’ll help someone prepare and deal better with theirs.
I’m 37 yo and I live in Sweden. In late December 2023 I felt a lump in my right breast, and by February this year I was diagnosed with a 15mm, grade 2, Luminal B type invasive breast cancer. No lymph node involvement, PR and ER 80% positive, HER2 negative.
Surgery:
The tumor was small, but I had a lot of micro calcifications, so I had to have a 50mm area + margins removed. I had a lumpectomy with a LICAP (a procedure taking fat from the back/shoulder area to fill in the volume taken from the breast.) The surgery went well and I was discharged just after a few hours. I went home with a single drain which was removed by a nurse five days later.
The pain was manageable with long acting opioids the first two days followed by paracetamol for another 7 days. I had to wear a compression bra for 3 weeks to keep the swelling down, and was also given restrictions for my arm and shoulder during this times.
The result of the LICAP was amazing, like I’d not even had surgery at all. I do have a scar on my back where they took the fat, but I’m not that bothered by it since I don’t really look at my back all that much :) and I’m able to hide most of it beneath my bra strap.
Unfortunately, only a few weeks after the surgery I was found to have a BRCA2 mutation, so the new recommendation was to have a double mastectomy. Analysis of the tumor also showed it was Luminal B type, and they recommended chemo consisting of 3 rounds of EC100 and 3 Docetaxel80 every three weeks.
I had the double mastectomy, and the doctor’s recommendation was to stay in the hospital for at least 4 days. But I hated it, having to ask the nurses for everything, just sitting in bed in a small room all day, eating disgusting hospital food. Since my husband works from home and I knew he could take good care of me at home, I asked to be discharged after only two nights. By then I was already able to walk short distances (albeit slowly), able to keep down food and drink, dress myself, and the surgery sites looked good, so the doctor cleared me for discharge.
Again, the pain was very manageable. I took opioids for 4 days, then managed on paracetamol and an occasional NSAID which I took for another 7-8 days. Initially I had 4 drains, two were removed on the second day after surgery, and the other two I went home with. They were removed after another 7 days.
The worst part following the mastectomy, physically, were the arm- and shoulder restrictions. I wasn’t allowed to lift my arms more than 90 degrees or lift more than a few kgs for three weeks, and I wasn’t allowed to put any weight on them while shifting in bed or getting up from the sofa. But I managed okay with the help of my husband.
I was given a physiotherapy routine to do daily after surgery. The exercises can be a bit uncomfortable, and it’s a pain doing them several times a day, but they seemed to do have done the trick because I haven’t had any mobility issues in my arms or shoulders.
The implants were placed subcutaneously, with a nipple sparing procedure. I went for implants slightly smaller than my real breasts - I had 525 ml breasts on my rather small frame so i opted for 450 ml implants, and I think my new boobs fit my frame nicely. They look fine, but four months in and I’m still adjusting to them. I have a bit of discomfort and sometimes a mild pain in my chest area, especially on the left side, but it’s getting better by the week. I’m still not really accepting of them as my own; it’s weird to have two numb, deadweights on my chest. But the end result is objectively good. They do look so much better than I ever thought they would, especially compared to how lumpy and Frankensteiny they looked the first month after surgery. They were initially sitting really high, were small and lumpy, and sitting really tight on my chest. My surgeon reassured me they would look better by the third month, and told me about the “drop and fluff” which is exactly what it sounds like: the implants drop lower and become softer over a period of a few months. Which mine did.
The only real issue I have aesthetically right now is a bit of wrinkling on the very top of the breasts when I bend forward, and that my nipples are pointing a bit downwards. The breasts can be adjusted in a bra though, so that the wrinkling doesn’t show as much, as well as making the nipples sit a bit higher.
Chemo:
About a month after the mastectomy I was well enough to start chemo.
I had a PICC-line inserted. I was a bit worried about this procedure, but it was painless and quick. The PICC was a bit annoying while showering but gave me no other trouble other than being a minor inconvenience.
I was to start with EC100 (Epirubucin and Cyclophosphamide).
The first week after each round of EC was quite difficult. I was given Emend, corticosteroids and Ondansetron to manage the nausea, so I never threw up, but for the first 5-6 days still experienced some really bad nausea. The meds also gave me bad constipation for almost a whole week, reflux, a lot of burping, gas and bloating, and a generally sensitive stomach. I also had bad fatigue most of day 3-6 post infusion. I still managed to do small household chores and was able to take walks almost daily. I‘d describe the first week post EC infusion as having a really bad hangover combined with the flu.
Week 2 post infusion I started to successively get better, and by my week threes I was almost back to normal.
Docetaxel80.
This was a walk in the park compared to EC! The flu- and hangover like feeling I had following EC was absent on D, and I was back to normal much quicker. There was absolutely no nausea, no constipation, and I was so happy that the neuropathy that I had feared the most was pretty much absent for all three rounds! The high dose corticosteroids taken on day 0, 1 and 2 messed up my sleep - I think I slept a total of 2 hours each night I was on steroids - and made me jittery and really anxious. I think I actually found these side effects worse than those from the chemo.
My Docetaxel symptoms all debuted and were gone by the end of week 1 following infusion. I experienced hot flashes: minor ones throughout the day, and maybe 2-3 mayor ones every day for the whole first week. I was a bit more tired than on EC and slept for a few extra hours during the day. I did experience a tiny bit of neuropathy in my hands and feet for a few days, but they were quite mild, more a tingling sensation rather than pain, and were completely gone by day 7. I had two days of loose stools after each infusion, but that was managed by taking some loperamide. I had some reflux but an occasional PPI did the trick. I know a lot of women experience fluid retention during Docetaxel, and I think I gained about 2-3 kgs in water weight the first week after each infusion, but had shed it all off by mid week 2. The worst side effect was losing my sense of taste around day 3, but it gradually returned by day 7-9. I just ate a lot of spicy and sour things, as well as focusing on palatable textures rather than taste.
General side effects:
I lost all my hair 13 days after the first EC infusion, and started losing my eyebrows after the first round of Docetaxel.
My blood work never dipped low enough to postpone treatment or dose reduce. Never had a fever nor needed antibiotics, or blood transfusions. My PICC-line didn’t get infected, didn’t get a blood clot, didn’t get clogged, didn’t really bother me much at all.
Day 4-11 after each round of chemo I was given injections to stimulate my bone marrow. They induced minor pain mostly in my sternum and pelvis, but the pain was mild, and was managed by taking an occasional over-the-counter painkiller and using a heat pad.
Since my diagnosis I devoured numerous studies on breast cancer, and I had found several studies showing how exercise made you tolerate chemo better, so in preparation I bought a stationary bike and some weights so I could exercise at home.
I wasn’t really all that physically active before my cancer aside from walks with my dog and yoga a few times a week. But throughout all six rounds I made sure to exercise regularly, even during my bad EC weeks I made sure to take an hour long walk or 30 minutes on the bike every other day. I’m convinced I coped with the chemo as well as I did thanks to the exercise.
I was so worried before I started chemo, and it was really rough at times, but it wasn’t anything I couldn’t manage. I’m currently on week three of my last Docetaxel infusion, and I’m already starting to forget what the really bad days felt like.
I hope this post helps someone, I know I scoured the internet for accounts of chemo experiences, and seeing that it doesn’t have to be as horrible as it’s portrayed in the movies really made me worry less going into treatment.
If you have any questions feel free to ask!
