Don't know what to do, just diagnosed

mskassie
mskassie Member Posts: 33
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was just diagnosed Oct 28 with having ILC.  ER/PR both positive, HER negative.  Two very small tumors [one 5mm, one 3mm].  I don't know what to do now, it feels like I'm just frozen in time now.  I don't know whether to go for the lumpectomy w/radiation [though I really don't want radiation] or for the full mastecomy [left breast only]  I'm 45 yrs old, pre-menopausal and scared.  Making matters a bit more challenging is that I am in a manual wheelchair and need my arms to get around, I don't have time for even one to be 'out of commission'  Maternal & paternal grandmothers had breast cancer as well as maternal aunt.  Mom had stage IV lung to brain cancer, was given less than a 5% chance of 6 month survival and she is now 19 years out and cancer free.

Can someone help me figure out what to do, please???  Ellis Fischel Cancer Hospital in Columbia, MO is where I got the diagnosis from.

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  • Abbey11
    Abbey11 Member Posts: 335
    edited November 2011

    Hi mskassie.  I'm sorry you're joining us here, but hope that we can help you through this very difficult time.  Before you make any decisions about surgery and treatment, you might consider getting genetic testing done.  It would be a reasonable request with your family history.  I was in a very similar situation when I was diagnosed - 44 years old, premenopausal, with more than one tumor.  I got the testing done because if I had been positive, I would have removed my ovaries.  This would have put me into instant menopause, and I would then have been able to take an AI instead of tamoxifen.  I was negative, so kept my ovaries and am three years into five years of tamoxifen.  I had a bilateral mastectomy because I had tumors in each breast.

    All of the doctors thought that the mastectomies were an appropriate decision.  But, it is a very difficult surgery and the reconstruction process is long and painful (tissue expanders and implants.)  If you're not BRCA positive, I would try to keep your breast.  There are new shorter course radiation treatments out there including intraoperative radiation (given in the OR at the time of surgery.)

    I hope this helps.  Hang in there!  This time is the worst, but it does get better. 

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  • grdnslve
    grdnslve Member Posts: 310
    edited November 2011

    i'm so sorry for the pain and shock you are now in.  you should find some wonderful support here, however.  have you seen an oncologist yet?  i would push for a consult asap, as sometimes their opinion can differ from a surgeons on the amount of surgery needed.  having said that, the fact that you have more than 1 tumor may make it necessary for a mx, depending on the location.  hopefully there is a patient advocate/navigator at the facility who you can work with to perhaps get you a motorized chair, at least temporarily.  as for making decisions, talk to your doctors about your concerns.  if you are between appts, talk to their nurse.  a good nurse can be a wonderful ally and time saver when you have questions, as they will be able to get the answers from your doctor & relay them to you much faster than he may be able to call you back.  listen to what they say, then ask questions about the recomendations.  are there alternatives, and what is the benefit/negatives of each.  know what your priorities are.  would you  prefer as few surgeries as possible, or would you rather have a lumpectomy, and then if it were necessary one or more further surgeries.  do you want to do as little as possible in terms of treatment now, and then deal with whatever comes- if it does- later, or would you want to go for it with whatever treatment is offered (rad/chemo) now.  we are all different in the way we handle this, and what we can tolerate at one time.  only you can decide what is right for you, but communication and trust in your doctors is important.  don't forget you have the right to a second opinion, and that can even be a different onc at the same hospital.  wishing you the best, and peace of mind when you decide.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2011

    mskassie, I'm so sorry about your diagnosis, but I'm glad you've found BCO!  The question you're asking is one each of us has to answer for ourselves, but the good news is you normally have a little time to think about it, and even though our instinct is to want the cancer out of our bodies immediately, yours are quite small, so this decision doesn't have to be made in a hasty or panicked mode.

    IF your two lesions are close to each other, it sounds like a lumpectomy might be the better choice due to the chair/arms concern.  OTOH, if one or more breast surgeons gives you reasons to consider a mastectomy, I'm wondering if you could rent a power chair (or whatever the proper term is for one that's not manual), which seems like it might solve that worry.  (Editing to add... in thinking about it, you might need a power chair even with a lumpectomy, because you shouldn't strain that side and risk disrupting the stitches.)

    My bigger question would be, what, if any, pre-existing medical conditions do you have that might play into your decision?   If you do a lumpectomy, can you tolerate the 35 or so daily radiation appointments that are part of a lumpectomy protocol?   If you decide you want a mastectomy, will you want reconstruction, and is that also something that has to be evaluated in terms of any pre-existing conditions.

    One more thought would be, if at all possible, to choose doctors who have the most experience, and therefor are likely to have treated bc in women with similar situations to yours.  A little experience could go a long way in guiding your treatment and choices.  Here's a list of the NCI-designated cancer centers, which would fall into that category of having tons of experience will all sorts of bc cases with pre-existing concerns:  

    http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html      

    (((Hugs)))  Deanna 

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