Multifocal Invasive Lobular Carcinoma

Question: Do I need a mastectomy, single or double, with radiation or can I just do the radiation after a lumpectomy? I am 50 and had a 4.3cm multifocal invasive lobular cancer removed with clean margins Jan 07 by great breast surgeon. One positive lymph node out of 14. ER+, PR+, Her-/neu negative, low Ki-67, neg p53, aneuploid, low S-Phase. Chemo every other week (AC for 4 weeks/Taxol for 4 weeks). MRI now looks clean. No genetic tendency. I will be getting radiation and Tamoxifen. Oncologist says data shows I dont need the mastectomy.  Surgeon recommends mastectomy but does not give a reason for his "gut feeling" that I will be back with cancer if I dont do mastectomy. He said the multifocality was a reason but I find no statistics to show his reason. I want to know which treatment will give me the best chance of no recurrence or no new cancer and what the % are for each. How does the multifocal aspect play a role? How does invasive lobular cancer affect the recurrence or new cancer chances? Where can I find information on multifocal, invasive lobular carcinoma and how long each treatment option allowed people to live and if they got recurrences or new cancers? I need to decide this week as I need to do something soon. THANK YOU so much.

[Cleveland Clinic]

Dear melinLA:  Lobular cancer is less common than ductal cancer but is not considered more serious.  There are some differences in that lobular cancer often appears as a breast thickening rather than a distinct lump (often leading to later diagnosis).  It is also common for lobular cancer to be multifocal and lobular cancer has a higher risk of occurring in the opposite breast.  In general, the control of distant disease (or metastasis) is comparable between lumpectomy + radiation therapy and mastectomy.  However, the local recurrence rate is slightly higher with lumpectomy + radiation therapy.  A mastectomy may be recommended in multifocal disease because there is always a possibility that there could be other small foci of cancer in the breast that could not be seen and were not removed with the lumpectomy (this may be the reason that there are better rates of local control with mastectomy).  

[Mel in LA]

Are there numbers or percentages attached to the higher recurrence with multifocal and with lobular?  Resources?  What is the main recommendations for this type of cancer?  

[Montana girl 06]

The RN only answers the original question. Sorry.

[carme]

Please read everything you can put your eyes on...and listen to your doctor.
It's cancer...if he says mastectomy, do it.

[ly3]

I too had multifocal disease, but mine was ductal.  All doctors told me I could opt for either, except for the radiation oncologist, who recommended mastectomy (and no radiation).  He explained in pictures about the margins (which were not clear) and the unknown possible tumors or dcis (still visable in those unclear margins) that might be undetected, but might eventually turn to cancer.  One day, while waiting for a bone scan, I read my chart and ALL doctors had recommended mastectomy, just not to my face.  My husband didn't hear it either.  

I was devastated by the initial diagnosis, and opted to have chemo first, to give me time to decide about surgery.  I had AC followed by Taxol, every 2 weeks.  It was horrible, and I developed pnemonia (pneumonia) which lasted for 2 months.  

I too couldn't seem to get a straight answer about "multifocal" BC.  When I finally "focused" on the "multi" aspect, I  understood.  If there were more small tumors undectected by image tests, they might eventually turn to cancer, and I would be doing this all over again, and possibly for the rest of my shortened life...  By the time I was done with the misery of AC, I had decided the way to avoid chemo again (because of possible recurrance) was to have the mastectomy, and then had to decide which reconstruction to have.  

I chose the TRAM flap, and although I was devastated about losing a breast right up to going into surgery, I do not have regrets about my choices.  Another tumor, nearly the same size, was found near the original tumor, which ad not shown up on a mamogram (mammogram) or MRI, so I did make the right decision.  Doctors see patients like us all day long, so they know first hand what the chances of recurrance might be, based on other patients.  It is hard to trust an impartial technician that you've just met, and put your life into their hands.

3 1/2 years later, I look good, and feel good.  Nobody is happy about dealing with any of this, because nobody thought they would ever have to make these choices!  Later things will become clearer, but getting through the fog is really hard.  There are other posts in the archives about my adventures with BC and reconstruction.  I wish you luck and peace with your decisions.