Invasive papillary breast cancer

Posted by susan62 @susan62, Mar 26, 2022

My sister was diagnosed with invasive papillary breast cancer about a month ago in her right breast in two small spots. No presence in her lymph nodes. She decided to have a double mastectomy. The surgery went well and this past week she saw her surgeon and she said all looked well. She is having a fair amount of pain where the drainage tubes are. Her doctor said she would have to grin and bear it until the tubes come out. Her oncologist is recommending hormone therapy. This sounds like there are a lot of symptoms. Any comments greatly appreciated.

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omega20 | @omega20 | Mar 26, 2022

I also had invasive papillary carcinoma diagnosis in November 2020 - during Covid. The doctors encouraged lumpectomy and I took that advice. (It was HERS 2 negative, Estrogen and Progesterone positive). I started anastrozole in January 2021. I have done okay with anastrozole (exercise has been my beneficial for me). I started Zometa infusions a year ago (just had second infusion) when my bone density in my hip moved from osteopenia to osteoporosis. I do believe this was partly due to anastrozole but I had also been on hormone therapy for about 30 years that had helped thumy bone density. I of course had to stop hormone therapy and thus my bone density got worse. I am 74 year old. I would love to hear about your sisters experience.

Chris, Volunteer Mentor | @auntieoakley | Mar 26, 2022

I am sorry your sister is struggling with the drains, and I hope the grin and bear it stage is over quickly.
This discussion has a lot of great tips about caring for drains and reducing the associated pains.
https://connect.mayoclinic.org/discussion/advice-on-taking-care-of-a-spouse-after-a-mastectomy/
I try and remind people that the folks who have little or no side effects to any particular treatment are not the ones who are the most vocal in these conversations. There are many women who take anastrazole with with very little side effects. My side effects were all related to estrogen depletion, and truly very do able. I whine a little about being prematurely old, but I am still here whining about it. On another thread someone said don’t make health decisions based on other people’s experience. The best you can do is gather as much information as you can and help your sister to understand her choices, and then support those choices.
Is your sister pre or post menopausal, this seems to make a difference? Is she comfortable with her medical team?

boathouse | @boathouse | Mar 27, 2022

Good Morning!
I am sorry to hear about your sisters diagnosis, I just had a double mastectomy 5 days ago 3/22.
I am with your sister the drainage tubes up by my collar bone and underarms and inside are unbearable.
My surgery on my breast the pain is ok.
Drainage tubes are awful, I feel every bit of suction.
So, I am keeping up on meds every 4 hours and trying to move around more, I get them out in 4 days, this will make healing so much better.
Stay on your pain meds and talk it out!
Yes we are aloud to say this hurts! Without being whimpy, 1-2 weeks we have this!!
Drainage Tubes inside with a bra that constricts Hurts!
Stay strong

carolyneb | @carolyneb | Mar 29, 2022

Hey, Sister, you stay strong, too! The tubes are a real drag, I got mine removed last Friday and it does get better. Our bodies' ability to heal is truly amazing. I am still deliberating about the recommendation to go on hormone therapy. (Her2 negative, Estrogen+.) I am awaiting the results of the "Oncotype" test from the pathologist. I guess that helps determine the likelihood of recurrence (I had no evidence of lymph node involvement) and whether or not chemotherapy might be warranted. Remember, YOU are the final decisionmaker on what type of care you receive. Gather as much info as you can. I wish you the very best,