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How can this be?
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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So sorry to hear of your dilemma. Perhaps you can find a DCIS group where you can receive information and opinions more directly related to DCIS.
Did you receive a pathology report after your lumpectomy and did the diagnosis change? In my travels, I’ve not heard of having that large of a DCIS tumor bed. ♥️🙏♥️
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3 ReactionsHi Lisa,
My diagnosis did not change - it is all DCIS. The 2nd surgery was a success and clear margins were obtained. I am in a support group, not specific to DCIS but still very helpful. I also have a mentor that has helped too.
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10 ReactionsWonderful! So glad to hear. ♥️
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2 ReactionsI have DCIS too, treatable but multifocal. The area of calcifications as a result of the DCIS is 14cm so they stated there is no way to do a lumpectomy. It is only a mastectomy in order to remove everything. I am so nervous about surgery and already dealing with the psychological effects. I went to MD Anderson the number one cancer center and they too said mastectomy.
Welcome, @prc73. I can understand how nervous you are. It's natural. And the psychological effects are real. I think you might appreciate also joining the group in this discussion:
- Can someone who’s had a mastectomy share the psychological effects ? https://connect.mayoclinic.org/discussion/can-someone-whos-had-a-mastectomy-share-the-psychological-effects/
You're not alone.
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4 ReactionsThank you for your kindness! I am doing much better. The swelling is minimal now, but still there. That's when I use the compression pad at night or at home and the compression camisole when I am out and about. Of course I am doing the prescribed exercises at home and I've added a few more to strengthen my abs, chest and arms. I let my walking take care of my legs.
I wish everyone can have the benefit of a good therapist, but I see how expensive it is and am thankful that I am on Medicare.
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1 ReactionRadiation patient that I met during radiation therapy was at stage one. She had a lumpectomy but they did not get clear margins.
So Dr. went back in and did clear margins in a second surgery perhaps 2 weeks later. No mastectomy.
You need a 2nd opinion. Life is a balancing act and each of us have to decide what to do after research and 2nd opinions to go by.....
She ended up with just one week of radiation therapy. Do not know type of cancer or size.
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1 ReactionOh man, my incision under my arm where lymph nodes were removed became infected and required two rounds of antibiotics as well. I knew something was wrong; it was red and swollen and extremely painful. Yet my surgeon's NP maintained it was not infected! I finally insisted on antibiotics (and I only take them when absolutely necessary) and it took two rounds, but finally took care of the problem. So glad your OT recognized yours so soon!
I have mild breast lymphedema as well. I find that a homemade Swell Spot works wonders on keeping it well under control!
Knowledge is power!
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2 ReactionsWow! We have to be our own best advocates. I'm glad you are doing better. I re-read the surgical discharge papers again and there was a small message about infection at the incision location, but no one from the surgeon's team spoke about it to me. My infection occurred almost 3 months post surgery. Now I am concerned that I will have to be vigilant for the rest of my life. I wish you well.
What is a swell spot and how did you make a homemade one? I also experienced an infection where my lymph nodes were removed and now am experiencing mild lymphedema Brest, shoulder, upper arm and upper back. I’ve been keeping it under control with massage.
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