Decision about lumpectomy or mastectomy
I was just diagnosed with Invasive Ductal Carcinoma and am a bit overwhelmed about the influx of information. For many years, my sisters and I have quipped that if one of us gets “it”, we will go get double mastectomies together. Our mother had it a few times, and she didn’t survive the last bout. When my husband met with the surgeon, I was determined to request a double mastectomy. The surgeon insisted a mastectomy has zero impact on whether this cancer returns or spreads. That seems counter-intuitive to me. If I leave the breast, with all of its ducts, how does that not give this aggressively multiplying invasive cancer a breeding ground?
I am both Estrogen (100%) and Progesterone (4%) receptor positive. HER2 was questionable, and I should get the FISH test result within the next day or two.
Anyone out there in a similar situation? How did you make your surgery decision? One concern for me is I just want them to take it out asap. I chose lumpectomy because it is under 1cm and the lymph nodes looked good. I am second-guessing and wondering if I should get a second opinion. Surgery schedule is packed and I am scheduled for January 28. Such a long time to wait, or so it feels. If I want a madtectomy, 2-3 months out.
One more thing. Did you have your ovaries taken out if you were Estrogen receptive? My doctor is not recommending. My daughter, a nurse, said she had never had a patient who didn’t have the ovaries removed if Estrogen receptive.
Sorry… so many questions. I like to know what people with real experience think and have done.
—AMK
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Hi @aklimek0402
Sorry that you had to join us here in the club no one wants to be part of, but glad you have found us as the support on this forum is really great. No need to apologize for questions. We've all been there.
The mastectomy/lumpectomy question is a very hard one. Bottom line is you have to 'go with your gut' and once you make your decision, it's the RIGHT one.
Other things that might factor into your decisions are your age, the results of the FISH test and the Grade of the cancer.
Regarding the ovaries question. Since it's a lot to deal with at once, you could think about that later and make your other decision first. I did have my ovaries removed after my 1st dx, mostly because I was getting close to menopause anyway (age 47 at the time) and I wanted to be able to take an AI (Aromatase Inhibitor), Femara, since it had a small amount of better limiting of recurrence. I don't think 'everyone' that is HR+ has their ovaries removed. It is another one of those tough decisions to make….but YOU get to make the RIGHT decision, as it is yours and yours alone.
The waiting for surgery is REALLY HARD. Do know that most breast cancer is pretty slow growing even though it's hard to accept that when it is happening to you. With my 2nd dx, it took them 10 months to finally dx it and even then I had to wait 6 weeks for surgery. Ugh.
Also, really sorry you are going through this during this Holiday season. It just adds to the stress of the whole thing. Both of my dx/surgeries were also at this time of year.
Hang in there. We're here for you.
Here is a thread that might help some:
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Hi @aklimek0402, and welcome to Breastcancer.org. We're so sorry for the reasons that bring you here, but we're really glad you've found us. As you can already see, our community is full of amazing members always willing to offer advice, information, encouragement, and support — we're all here for you!
As @mandy23 points out, making these types of decisions are so hard, but we hope you'll find some insight from the thread she shared, along with this information:
Along with this info from our site:
We hope this helps. Let us know how else we can support you!
—The Mods
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@aklimek0402, my tagged medical information will tell you the specifics about the type of ca I had, in case that's helpful. At first they identified it in only 1 breast, but biopsies eventually found cancer in both sides, 2 different kinds (lobular and ductal, both invasive). I was offered lumpectomies, but chose a double mastectomy because I really didn't want to have to go back every year for mammograms and deal with all of that scan-related anxiety. By removing the breasts, I would never have to have another mammogram. Also, I wouldn't need RT.
As it turned out, once they did the double mastectomy, they found that the tumors were larger and much more aggressive than they thought. My oncologist told me later that he thought I made a good decision, because given the pathology results, I would have had to have had a double mastectomy anyway, in light of the aggressive nature of the cells.
Whether or not to have a mastectomy is a very personal decision, though. I know myself (I work in health care) and I knew that it would be difficult for me to relax, knowing that it was possible to have cancer develop again in any remaining breast tissue. By having it removed, I knew that one source of cancer cells was gone. Of course, I can always develop a met someplace else as I age, but I don't have to have annual mammograms anymore. And at age 61 at the time, I didn't feel like I would mourn the loss of my breasts badly. I hope some part of this is helpful to you!
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@aklimek0402, also, I meant to add that I waited almost 3 months for the mastectomy, mostly because I had work commitments I wanted to follow through on. I had learned that the cancer was unlikely to change much during that interval, something that I checked with my onc to confirm. I was a little surprised to learn that BC really isn't an emergency, but I was grateful for the time to finish out my work and get supports in place to help me through the surgery. But you have to do what you are comfortable with!
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I was diagnosed with IDC right breast 11/4/24, grade 1, .5cm tumor. Bilateral MRI found nodule in left breast, biopsy positive for IDC. MRI also showed adjacent “concerning” lesion in right breast. I had been planning on lumpectomy with RT prior to the diagnosis of left breast cancer. I made the decision to have bilateral mastectomies with expander placement at time of surgery. Will have implants 3 months later. It’s so confusing and hard to know what’s right but for me I feel it’s the right decision. To have 2 independent cancers made the decision easier.
My sister had stage 2a breast cancer 13 years ago and had lumpectomy followed by chemo and radiation and has not had a recurrence!2 -
Thank you to everyone who shared both experience and insight. The shared research was also very helpful.
FISH can back, HER2-. So, I am ER+/PR+/HER2- . Grade 2, so not the least or most aggressive. Stage 1, so caught it early, which I am thankful for. I am careful to not overreact because it is early and I realize it is not as dire as so many other women face.
For me, I watched my mother deal with this three times. So, I am concerned about the impact of my decision on my future. I tend to not get anxious about things and to take things one step at a time. This situation has caught me by surprise a bit in that I have felt a little anxious at times. People around me are far more anxious because they also watched my mother and now I have bc.
I know it will all calm down at some point. I am feeling positive about the situation, as much as one can, that is. Just feeling like this particular instance is going to be okay.
You have been very helpful and given me a lot to consider. I appreciate all of you and pray for your journeys.
Love that these support forums are available.
God Bless
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@dfbrca24, welcome to our community! 💕 We’re so sorry you’re facing this but glad you’ve found us. Please know that you’re not alone here. As you can see, this group is full of people who understand, and we’re here to support you. Please, let us know if there's something we assist you with.
Sincerely,
The Mods
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I had an MRI done and now learned that, while the IDC had not changed and is still about .8cm, the DCIS is much larger an area than thought. It is 4.5 c 2.5 c 1.5 cm. What they referred to in the phone as “scatter” is more than they had originally seen. When I hear words like “scatter” and an explanation about how small the cells are, it concerns me that some of those little suckers could be scattering where they didn’t catch. Or they will continue to scatter. The surgeon said it doesn’t change the primary concern for the IDC and the size of the area doesn’t affect the stage or anything. She suggests I stick to plan and do the lumpectomy. What? Has any of you had experience with this? It seems more concerning to me and I think I should do a mastectomy. Surgeon doesn’t seem concerned about DCIS. Should I not be concerned?
…and Happy New Year.0 -
Hi @aklimek0402 -
Sorry to hear that more information is giving you more concerns.
Assuming you live in the U.S., I think the decision of mastectomy vs lumpectomy is ultimately yours. It's you that needs to live with your decision though none of us has a crystal ball. A lumpectomy may be fine and it never comes back. Nobody knows that.
Is it possible to get another surgical opinion? Sometimes that will help you make your decision.
Good luck with your decision. Sorry for the angst of going through all this. 😒
Take care.
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Getting a second opinion tomorrow.
Did anyone also have their ovaries removed if ER+?
thank you0
