How can this be?

Posted by whyme2023 @whyme2023, Jun 22, 2023

I was diagnosed with DCIS, Stage 0, ER/PR+, dense breasts - was told “treatable/curable”. Had 2 biopsies, an ultrasound and an MRI prior to surgery. Lumpectomy was done 2 weeks ago - carcinoma was MUCH larger than expected when it was removed (expected 1cm vs 6.5cm actually removed). 4 lymph nodes removed, all negative. Clear margins were NOT obtained. Surgeon is concerned because the MRI didn’t show the size of what was removed and is uncertain how to “follow me” in the future - for fear mammograms and MRIs will miss something in the future. Surgeon reviewed with her peer board and the majority think a mastectomy is the best route versus going back in for clear margins.
I can’t fathom why such a drastic step when I’m told my cancer is “treatable/curable”. I never imagined going that route and I’m still thinking do the 2nd surgery and hope for clear margins. If clear margins are obtained then we’d move to radiation and endocrine therapy. If clear margins aren’t obtained in 2nd surgery consider a 3rd for clear margins OR consider mastectomy.
I’m generally a step by step person - try things in a crawl, walk, run fashion - at this stage I’m thinking a mastectomy is a drastic step - I’d like to go the route of the 2nd surgery in an attempt for clear margins. HOWEVER, i would like to know what the data shows for how much a mastectomy reduces the chances of the cancer coming back.
Does anyone know where to find this data? Was/is anyone in this same predicament and how are you making your decision? If you’ve already decided how you’ll proceed, how did you arrive at this decision? If you’ve moved forward, how’s it going? I appreciate ALL feedback, as it’ll be good food for thought for me as I ultimately make the decision that works best for me.
Thanks in advance!!

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sarahmh | @sarahmh | Aug 16, 2023

In reply to @jkh "What is a swell spot and how did you make a homemade one? I also experienced..." + (show)

A sweet and extremely helpful lymphedema therapist introduced me to Swell Spots. They are made to help "stimulate the lymphatic system directing lymph fluid away form the affected area and softening fibrosis" as you wear them. Swell Spot is a specific brand; she made me one and called it a "chip bag." Basically it's just a bumpy pad you wear inside of a snug bra. It seems too easy to be so helpful, but it really makes a huge difference for me. Below are links to the official Swell Spot, a video that shows exactly what the therapist made for me, and the foam I bought to make my own. The massage you are doing is great, too. In my area, an organization called The Victory Center offers all kinds of free resources to cancer patients. I do a class called Healthy Steps. It's a very, very low key exercise class with moves specially designed to help with lymphedema. It uses something called the Lebed Method, and is very helpful (and fun! It got me out of the house and moving when I really didn't feel like it, and the instructor and all the participants are wonderful and caring).

This is a Swell Spot made specifically for breast lymphedema. I'm sure it works great but seemed pretty pricey to me:
https://www.amazon.com/Swell-Spots-Small-Sobol-SP-06/dp/B002BUYKZI/ref=sr_1_1?crid=9APYEGRHD1N4&keywords=swell+spot&qid=1692186789&sprefix=swell+spot%2Caps%2C159&sr=8-1

This is a great video that shows exactly how my therapist made me my first chip bag:
https://www.youtube.com/watch?v=hqqCLy8wJbk

This is the foam I bought to make my own (it comes as a big sheet, I just cut a piece to fit in my bra. When the foam gets worn and grungy, I just cut a new piece; the sheet is big enough to last a very long time):
https://www.compressionstore.com/products/medi-lymphpads

Actually, now that I look at everything, maybe I should invest in a real Swell Spot if they're washable. As it is, I replace my foam every few months, but since I plan to use a Swell Spot indefinitely, it might be cheaper in the long run to buy the official Swell Spot. You can DIY and see if it's helpful to you and then decide from there! I'll say again, I just can't believe how effective something so easy and simple and cheap can be (especially in this breast cancer world where nothing is easy or simple or cheap)!