new LCIS diagnosis in baltimore

tmmom
tmmom Member Posts: 2
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

hello everyone,

I was just diagnosed with LCIS after bilat breast reduction. I was offered only mammo every 6 months I  am thinking the breast surgeon was very conservative. I am 44 and have two young children, and I am considering eventual bilaterl mastectomy, electively. Does anyone know of a more assertive approach, such as a high risk center, in the Baltimore/D.C. area ?

Thanks.

i

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

    I don't know any specific places to recommend, but I can tell you what high risk surveillance I have for my LCIS.  I have digital mammos alternating every 6 months with MRIs, US as needed,  breast exams every 6 months on the opposite schedule, so I'm "seen" by some method basically every 3 months. I just finished up my 5 years of tamoxifen about 3 months ago, which I tolerated pretty well. I've been very fortunate and haven't had to have any more biopsies or lumpectomies.

    Anne

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited January 2009

    I was offered the same approach as Anne. I think a mammo every six months does not seem like very close monitoring. I was having that before my LCIS dx. And the LCIS was not found by the mammo anyhow, just the numerous calcifications. I would at least ask for a referral to an oncologist and / or a surgeon that would suggest an MRI. There are a lot of approaches to this dx. Anne has chosen the close monitoring route (the most common approach) and I chose the BMX route. One thing that is common, an LCIS dx is confusing and is treated in different ways. Best wishes! - Jean

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  • tmmom
    tmmom Member Posts: 2
    edited February 2009

    Thanks for all the support ladies, I am planning to see an oncologist and a high risk doc also. Leaning toward to BMX approach.

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  • sunfishlee
    sunfishlee Member Posts: 33
    edited February 2009

    Hi-

     I sent a PM with the names of the surgeons I used in DC. If you have any questions, please let me know. Good Luck,

    Lee 

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  • capecodder
    capecodder Member Posts: 4
    edited April 2009

    I too just finished with a lumpectomy for LCIS and am going to see the oncologist.This has been continunig since Jan 27th when I got the memorable call back first ever for me... My whole family is jumping for joy the biopsy showed not CA cells just the preCA cells and all were gotten(hopefully) Why I am not celebrating, is then why do I have to go to a oncologist(I know the answer)......I don't want the tamoxifen (risks esp at 59)with paternal and matercal CA one with a BMX and one with lumpectomy and radiation.................I have a 85yearold mother I care for and a husband with myotonic dytrophy that is fast approaching disability stages at 67,and my daughter @38 and a severe diabetic try to hang in there for the fouth pregnacy to hopefully deliver this baby.......so see I am "IT" and all that goes along with the title...........I have spoken to the surgeon who did the lumpectomy and she has said the BMX is a possibilty..I do not want a repeat of the past 4 months of mammo,recal mamo,sterotactic biopsy,MRI,and lumpectomy ever ,ever again.It was so hard to go thru and keep up a positive front for all who depend on me and do all that I need to do "IT ALL".So I am really considering the surgery and without reconstruction....Just want to hear from others who want that same peace of mind, am I crazy to think this way?....My sisters all have had lumpectomys for fibroids,me never. This was calcifcations...............so I am out here wanting to hear from those in my boat and my frame of mind.Sisters think I am being radical in my thinking..................Husband wants me to have the peace of mind I had the minute before I walked into the Mammo place 1-27-09 the second before they clicked the mammo. and change me forever........Capecodder

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited April 2009

    Capecodder - Only YOU know what is best for you. For me a BMx was a no brainer. I wasn't worried about losing my breasts or having the surgery, I was worried about looking over my shoulder every three months for the rest of my life. I had my BMx in December w/ reconstruction and all is going fine. In my case my dh and mother and oncologist all strongly supported my decision, but it was still ultimately MY decision. Gentle hugs my dear!  - Jean

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  • Alaina
    Alaina Member Posts: 461
    edited April 2009

    I am going to the Mercy Hospital Hoffberger Breast Center.  I don't know the specifics of LCIS or how it is treated, I just know that the team at Mercy is WONDERFUL, very aggressive in their treatment of young women with Breast Cancer, and there is a TON of free support available to patients there.  I have found each doctor, nurse, and specialist extremely thorough, knowledgeable, and compassionate, taking the time to answer not only my questions but those of my parents who accompanied me to my appointments as well.

    On the practical side, the location of the hospital is easy to find, right in downtown Baltimore, and parking is plentiful (valet or self-park) and not too expensive (ranging from $1 - $6 if you valet park and get your ticket stamped from the offices you are visiting).  This was kind of important to me when choosing a hospital for treatment because I didn't want parking to be a major headache every time I had an appointment. :-)

    If you have any other questions about Mercy, please feel free to PM me.

    Alaina

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  • Jo_Ann_K
    Jo_Ann_K Member Posts: 277
    edited April 2009

    tmmom,

    I'm also from Baltimore, and have had all my treatment at GBMC where they have a specialized breast center.  I've been very pleased with my care. Since you do have some time to decide where you want to go, you may want to come to the Hopewell Cancer Center Breast Cancer Support Group next Monday night from 7-8:30 PM. This networking group is led by 2 breast cancer survivors and there are women with all stages of breast cancer  and different types of treatment who can provide a lot of input to help you make an informed decision regarding where to seek treatment.  For more information on Hopewell, go to http://www.hopewellcancersupport.org/programs.html.  I have found this group to be wonderful and have recommended quite a few people to participate in their programs which are FREE.  They are located off of the Jones Fall Expressway near Greenspring Station, directly next to the new Meadow... Park.

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  • capecodder
    capecodder Member Posts: 4
    edited May 2009

    mykidsmom,thank you for that input....you are right on the money re looking over your shoulder for the rest of your life....I can't do that,I am a strong woman who for the first time in her life has been brought to her knees by this news.....and belive me I have dealt well with many other things in my life......this is just awful!. One question tho there is in some articles that if some breast tissue is left behind you can still get breast cancer do you know the odds of that,did anyone mention that??? many many thanks!

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  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited May 2009

    CapeCodder - Yes, there is some risk. But I figured I dropped from 30-80% risk of developing invasive BC (the risk percentages varied) to well under 10% (perhaps 1-5%). That was good enough for me! My oncologist tells me that I don't even need to see him anymore! Best wishes. - Jean

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited May 2009

    tmmom - you're lucky to have a lot of choices in the DC-Baltimore area.  Hopkins Avon Breast Center can also give you a very comprehensive evaluation of your case.  I started out at another place but went there to get a second opinion.  From the moment I walked in there I felt that I was being treated as a whole person, not just a breast cancer patient.  The doctors and staff are wonderful and caring.  I've been very pleased with the level of care I've been given.

    Don't be afraid to get as many second opinions as you need (and your insurance will cover) and keep asking questions.  This is YOUR decision, not the doctor's or even not your family's.  Your doctors can give you advice and recommendations, and your family who knows you better than anyone and can ask good questions and raise good issues, but the bottom line is that YOU are the decision-maker. Get as much information as you can, then make your decision based on what is right for YOU. 

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  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited May 2009

    CapeCodder,

    I too had LCIS and decided on bil. mastectomy with direct implants. I could not deal with all the stress I was feeling. It was making me sick. It's been 15 weeks and I feel fine. No regrets here. Feel free to PM me if I can help you.

    I wish you all the best with your decision.

    Ann

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  • Isabel89
    Isabel89 Member Posts: 2
    edited May 2009

    Dear CapeCodder;

    Two years ago I was diagnosed with DCIS and fully intended to go the route of lumpectomy and radiation . Although my margins were clean the pathology report showed LCIS and hyperplasia. Only the breast surgeon understood my decision to have  a bi lateral mastectomy rather than live with the increasing risk of invasive cancer. My oncologists thought I should take Tomoxcifin to lower my risk but I could not bare the anxiety.

    The decision was difficult  but two years later I still feel I made the right choice.

    I wish you the best, write if you wish 

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