I am 67 and just diagnosed with LCIS...

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mimi2four
mimi2four Member Posts: 3
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

I am 67 years old and diagnosed with LCIS about a month ago.  Mine was a "lucky find" by pathology following sterotactic biopsy after a concentration of mircocalcifications were seen in  a couple of places in my right breast.  I have talked with an oncologist and with my  surgeon.  Both give me the same 3 options:  1.  Watch and wait with mammograms every 12 months (hoping that if a cancer becomes invasive , it will be early and treatable.)  2.  Same as #1 , but add Tamoxifin or Evista . ...or 3. Double Mastectomy. 

Is anyone else here my age?  I am not comfortable with the "wait and watch" option.  I don't like what I hear and read about the side effects of most of the meds.  I am in reasonably good health and feel I can tolerate bilateral mastectomy.  I am looking into exactly what kinds of reconstruction would be best for me if I choose Option #3. 

Can I hear from someone out there who has faced LCIS at my age?  What did you do ?  How long ago were you diagnosed?

Thanks for your thoughts!

Mary

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  • walkteach48
    walkteach48 Member Posts: 15
    edited August 2008

    Hi Mary,

    I will be 60 in December and was diagnosed with LCIS almost four years ago. So far, I have not been diagnosed with breast cancer. Initially, a mammo showed calcifications, and later an MRI showed two "enhanced" areas of concern. I have had three excisional biopsies. It has been very stressful. My breasts are very scarred, and according to the surgeon, there is a lot of "junk" in them. Although I am taking Evista, this could go on and on....Both my mother and grandmother had breast cancer later in life, and I don't want to wait until I have cancer to be proactive given these various issues.

    After the last biopsy, my surgeon suggested skin sparing mastectomies, and I am seriously considering doing this. I am now in the process of researching my options. It is very complicated because there are so may different types of reconstruction. I am leaning towards a one step procedure which may require Alloderm. My next appointment is in October. If there are problems with this MRI, I want to be prepared to immediately go ahead with the mastectomies. 

    Good luck in your journey. It is not easy, but the support and information on this site in fantastic.

     Lydia

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  • mimi2four
    mimi2four Member Posts: 3
    edited August 2008

    Thank you, Lydia, for your response!  I have really gotten a lot of good information from reading this site.  It has been most helpful to read what other women have gone and are going through with the same diagnosis.  Like you, I am searching for the right answer.  This coming week, I have an appointment at Duke University with a plastic surgeon to discuss my options in case I decide on the double mastectomies.  My Mother died at 59 after being ill for 12 years with 3 different primary sites of cancer, but not cancer of the breast that I am aware of. 

    My feeling right now is that I can better withstand surgery and reconstruction NOW than I can stand all that will be required is I am diagnosed with invasive cancer a few years from now.

    Good luck to you, also, Lydia !  I appreciate your sharing your story with me and others.

    Mary  

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  • leaf
    leaf Member Posts: 8,188
    edited August 2008

    Hi Mary! Welcome to the LCIS forum!  I'm sorry you got diagnosed with LCIS, but I'm glad you found us.

    Since LCIS is rarely visible on palpation, mammograms, or ultrasounds, almost everyone finds out they have LCIS due to a biopsy, where LCIS is found as in incidental finding.

    There is not a lot of solid information about LCIS since it is uncommon.  

    Do the amount of research you need to do, then make your decision.

    Most of the information I can find is that the raw, overall risk for a person getting breast cancer (I am including DCIS in this category) is about 0.5-1% per year.  So if you expect to live to age 85, which is about the norm expected for the average woman in the US, if you act like the average person in the population, your risk might be 12-25% lifetime risk from LCIS.

    As far as I know, there is no information whether or not other risk factors add to this figure.  For example, if you have several first degree relatives with breast cancer, particularly if premenopausal, I don't think they know whether or not this increases your breast cancer risk beyond the 12-25% lifetime risk figure.  

    I have a lot of scarring too.  I went to an NCI center, and was told I had too much scar tissue to have a screening MRI, and they highly discouraged me from having BPMs either.  I had a lot of trouble with this NCI consult.

    You may want to also check out the reconstruction forums for more info about reconstruction. 

    I am 54 and was diagnosed at age 51.  I have seen some papers that opine the 'mean age' for diagnosis of LCIS and nothing worse is about the late 40s or early 50s.

    There is no best decision for everyone. There is only the best decision for YOU, which is YOUR choice. Some people feel their breasts are 'ticking time bombs' and BPMs are a relief.

    I have heard other people who really liked Duke for their LCIS care. 

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  • corgigirl
    corgigirl Member Posts: 19
    edited August 2008

    Had lumpectomy and radiation at age 64, bilateral mast. at 65 and now almost 67.  Drove myself to all radiation appointments and no problem with surgeries.  Actually had a 3rd surgery right after bilateral mastectomy to remove reconstruction that failed due to infection.  The 3rd surgery was the hardest as it was right on the heels of the bi lateral.  But, fine now.  Had DCIS in both breasts diagnosed one year apart.  Do not believe age was a factor for me.  Good wishes for your choice in how to proceed. 

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  • mimi2four
    mimi2four Member Posts: 3
    edited August 2008

    Thank you, leaf, corgigirl, and Lydia for your responses. This forum is wonderful...the opportunity to talk with others facing the similar challenges is helpful.

    I have an appointment tomorrow at Duke University Clinic with Dr. Zenn, a plasic surgeon, with whom I will discuss the many options for PBM and reconstruction.  I had colon surgery at Duke about 5 years ago (not cancer, but removal of sigmoid colon because of acute attacks of diverticulitis); therefore, I have a scar that is about 3 inches long in the middle of my abdomen.  I am hoping to hear that if I choose this option, I can have the PBM and reconstruction at the same time.  Right now, I am leaning toward the DIEP (perforator flap) reconstruction (if possible for me).  I am not totally opposed to implants, but have heard a lot of stories of the pain of expanders, the length of time it takes to complete the procedure, contracture problems, etc.   Also, I am concerned at my age if I take the "wait and watch" option, ....by the time an invasive situation exists, I will be even older and less able to withstand treatment options. 

    Lots of questions...no concrete answers...the problem facing all of us.  I will continue to research, listen and learn about all my options and then make a decision based on all the information I can gather. 

    I wish all of you continued good health. Smile

    Mary

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  • Misty3
    Misty3 Member Posts: 154
    edited August 2008

    I'm in my forties but I just wanted to say good luck with your decision--whatever it may be.  It's good you are doing your homework--knowledge is power!

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited August 2008

    Mary - I am 54 years old and was just dx'd w/ LCIS today. As w/ most women, my LCIS was found incidental to a bx due to findings on MRI and mammogram. My surgeon suggests that I talk to an oncologist, take tamoxifillin, have annual MRIs and annuals mammograms and get a check-up regularly. I am still a little out of sorts from this dx. I figure it is certainly better than invasive BC, but I am not sure where it is going to take me. The increased risk of endometrial cancer and increase in hot flashes w/ tamo. has me concerned. I am already at risk of endometrial cancer due to numerous polyps in the past. I am also having a hard time finding other folks dealing with this dx. I was glad to find your posts. Feel free to explain anything you want. Good luck w/ your mastectomy decision. - Jean

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  • billielee67
    billielee67 Member Posts: 1
    edited August 2008

    Dear Mary:  I, too, am 67 and was diagnosed much the same way you were in January, '08.

     I also feel the same way you do about waiting or taking meds and have chosen to have bilateral mastectomies.  However, it seems having your breasts removed is a lot simpler than having them replaced.

    I have spoken to two plastic surgeons, one who does the pedical TRAM flap and also the alloderm/implant.  The second does the DEIP flap.  I have come full circle and have decided to go with the alloderm/implant surgery.  It is shorter surgery, the recovery period is long but not quite as rigorous as the TRAM or DEIP flaps and, if I don't like the results, the flaps can still be an option later. 

    One of my big concerns was the size of my new breasts.  I am now a D cup and the pedical TRAM could give me a good A or B cup, a minor C cup at most.  The DEIP might get the breast to a C cup but the surgery is very long and I was concerned about the failure rate.  I was told by the second surgeon that if I had implant surgery and didn't like it I could always have a flap later.  But if I choose the FLAP and don't like it or it fails, I have no other options.

    I will be looking forward to where you are in the process of absorbing all the information and what conclusions you have come to.

    Billielee

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  • SchoolBoardLady
    SchoolBoardLady Member Posts: 14
    edited December 2009

    Billielee67:

    I am 53 and recently diagnosed with LCIS and ADH--and I chose to try the Raloxifene (Evista) because I would save mastectomy for cancer.  There is no cancer on my mother's side but there is on my dads--grandmother, great grandmother and two aunts out of 5.  The interesting fact, is that one of the 5 aunts was involved in the Tamoxifene-Raloxifene study of 1994 (from age 60 to 64) and she is now 75 and cancer free. We just don't know how long we all have walked around with the LCIS--since it's usually found "by accident"--not necessarily a lump.  I hope this information helps--not add to the confusion.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Lady--I was diagnosed with LCIS 6 years ago. I took tamoxifen for 5 years with minimal SEs, mainly hot flashes, now I take Evista for further preventative measures. I continue with my high risk surveillance of alternating mammos with MRIs every 6 months and breast exams on the opposite 6 months. Not everyone would chose this way, but it works for me. If I ever have any issues that require biopsy/lumpectomy again, I will seriously reconsider bilat masts.

    Anne

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