DCIS - Did Lumpectomy (need help in decision making)

786786

Hello Everyone,

We are in desperate need for your help in making a decision. My mom was diagnosed with DCIS (stage 0 cancer - noninvasive) in her left breast so the treatment was to do lumpectomy and get radiations. She is also a heart patient. We went with it and by grace of God, the procedure went smoothly and she had a speedy recovery within two weeks. The chunk they took out was about 6 cm and the pathology report showed 4 inadequate margins. Radiation can't be done because the margins are positive. Thankfully, this 6cm lump was all DCIS and non-invasive.

The doctor has recommend mastectomy for my mom because of extent of DCIS seen but she can't guarantee how much is in there? She will be doing biopsy in her lymp nodes to make sure they are cancer free and the pathologist will be present to assure that. We heard mastectomy is a painful procedure and more damaging.

The doctor don't know how widespread it is (the surgeon have taken out what was shown in the mammogram and ultrasound ) so she can re-exercise that 4 involved margins of the lumpectomy site that turned out to be positive. For radiation, we need negative margins.

We are scared to take extensive decision since my mom won't be feeling her sensitive nerves and etc but we are confused and decided to go with the doctor. What if we start regretting after the results that there was just little bit left that could have been tackle with lumpectomy. If there is a lot more of DCIS then we'd be satisfied with our decision. Have any of you been in this situation?

The questions that concerned us, what if there is little bit more DCIS left on the other hand which can be taken out with lumpectomy. This is all dependent on chance. The growth rate of my mom DCIS is slow but we don't know what if it becomes fast?

Please help us out what to do as it is non-invasive cancer and we don't want it to become invasive. It's a very tough decision.

muska

Hello 786786, I am very sorry your Mom got this diagnosis. If it is just DCIS that is a relatively "good" news. On the other hand, 6cm is a large tumor, so it is quite likely the surgeon may be unable to take it all out with clean margins by doing a lumpectomy. Why are you so concerned about mastectomy? How old is your mother? Did you ask the doctor whether she would still need radiation if she had mastectomy and everything were clear including lymph nodes?

A second opinion is always a good option if you are not sure what to do.

786786

My mom has large breasts and she is also a heart patient. My mother is 60 years old. No, radiation is not required after mastectomy. Mastectomy is more painful procedure and she won't feel senses. Mastectomy for DCIS might be too extreme. It is a difficult decision.

queenmomcat

786786: I think you've touched on the central issue of mastectomy or lumpectomy/radiation--mastectomy's a more extensive procedure, and therefore a more painful recovery, leaving the patient without much in the way of sensation where the breast was removed...but with a lumpectomy comes radiation.

Was the tumor 6 cm, or was that the amount excised? Have the oncologists indicated that your mother's heart condition might be worsened by radiation? (It might: radiation to the left breast can impinge upon our hearts.)

I'm hoping someone with more extensive medical knowledge than I will come along, but I hope to at least offer some comfort! I was in something that resembled your mother's position--a re-excision, for a case of multi-focal DCIS. (diffused more widely than the MRI had shown). I ended up sticking with a partial mastectomy.

TB90

So sorry about your mom's diagnosis and even thought DCIS is about as good as it gets, there always seems to be a complicating factor. It being on the left breast and your mom being a heart patient is a complication. In my opinion, a mastectomy was a relatively easy procedure to recover from, but I had absolutely no complications. Pain is not usually a major issue. Except during sleep when you roll over. I would assume that you mother would want to avoid radiation to her left side due to cardiac issues. A mastectomy may provide her with that option. However, even with a mastectomy, there can still be positive margins ( I had one) and still had to have radiation. Radiation is done when there are positive margins, but of course, the goal is to get clean margins first. Radiation works best when there are the fewest cancer cells otherwise it would be done to zap tumours. Radiation follows the best possible outcome of surgery to get any left over cells. I would discuss with the surgeon the likelihood of radiation being required even following a mastectomy and the risk to your mother of radiation to her left side. Good luck with which ever route your mother takes.

Meh527

Welcome to the world of Non-invasive DCIS where there are no clear answers even from the doctors. Your mom should ask the radiologist about heart risks. You can also ask for another mammogram after the lumpectomy. I had a small tumor, two incisions, clear margins, not particularly recommended for anything additional, but I'm concerned some teeny, tiny cancer is left. A subsequent mammogram hints there maybe some calcification behind (not what they said to me at the time) so now the radiologist is okay with my decision although at first she was very ambivalent.

I flipflopped all over the place. Changed my mind a millions times.

Here's what helped me decide: genetic testing, the oncotype test, mammogram post lumptectomy to see if calcification was left behind.

My insurance is fantastic. Paid for everything.

Ask about getting those tests, then if 1. there are calcifications left, 2. the oncotype puts her at moderate to higher risk for future calcifications, 3. she gets a percentage of risk for invasive (and we all are at higher risk once we have DCIS) cancer that she feels is too great, 4. genetic testing also shows damaged BRAC gene (this gene helps fight off cancer before we even know or ever know we had any, a damaged one won't do that) or other genetic risk, 5. Her cancer is negative for estrogen or progesterone (negative means they won't be able to starve cancer in the future, giving the doctors less to fight an invasive cancer), 6. Radiation will increase chances of future heart problems (will a mastectomy help her avoid radiation?) and 7. she may be able to skip medication with its own set of risky and quality of life side effects, she can better weigh the risk of recurrence and possible occurrence of an invasive or more suspicious calcification and face surgery again. Her doctors can also feel better with their recommendations and counsel her better.

My radiologist felt better about my decision (making me feel where about it) after I immediately got a mammogram after first consult and before the second consult. That same day of the second consult, I got tattooed and put on the schedule for radiation. BUT not until she sees my genetic tests.

I get the results of the genetic tests tomorrow, one day before the trial run on radiation, which will start Monday. This test may confirm my decision even more but won't negate what can be seen on my mammogram. If the genes ain't good, the radiation would probably be postponed or cancelled and I'll be counseled to consider a mastectomy.

I'm two years older than your mom. No heart problems other than a very noisy murmur that I've outgrown. The radiologist told me a tiny sliver of my heart will be radiated. I will discuss this with her further. Radiation can cause heart arrhythmia. She should discuss if a mastectomy would spare her from radiation. The knowledge may help her weigh pros and cons.

Hope this helps. I know exactly how hard decisions are with this type of cancer. Stage 0 sounds all peachy keen, but the decisions are hard because the data is not all there. I see my DCIS (grade 2) as an invasive cancer waiting to happen. I was just lucky to catch it early. It wasn't there a year ago, but there it was a year later and not only that the little buggers were dying meaning it was growing. How long before it burst through?

BTW what also helped was a study a member here sent me that showed that radiation and tamoxifen do lower risks versus wait and see or lumpectomy alone and monitoring with mammograms.

As I said to my radiologist, even if the DCIS is the same (non invasive), I'll be back in the same position. I still went under the knife twice with full anethesthia, I'm still having to talk to doctors with titles like surgeon, radiologist, oncologist. I'm still hearing the words cancer, lumpectomy, radiation, mastectomy, tamoxifen. I want to do now what I can to increase my chances so I won't ever have to do this again when I'll be even older.

I included links to information to help with your research.

Hope this helps.

Let us know!

LAstar

I was in the same position (my DCIS Was 7 cm and multi-focal) and chose to try the re-excision. I had involved margins on the 2nd lumpectomy and then knew that a mastectomy had to be done. The re-excision was a much easier recovery than the original lumpectomy, and it gave me peace of mind that I'd tried everything before mastectomy. My impression is that the mastectomy alone can be a relatively quick recovery (maybe 2 weeks?) but a lot of the problems people experience come from the reconstruction (I had an additional 3 surgeries for reconstruction and these were long recoveries). If your mother doesn't plan to have reconstruction and wants to avoid radiation, the mastectomy may be a good choice for her. Yes, there is a loss of sensation that comes with it, but you get used to it. People who don't reconstruct often wear a prosthesis in their bra or just enjoy the simplicity of being flat. Best wishes to you both with these choices -- they are so difficult! But life after treatment is very sweet!