Confusing visit to oncologist

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Mykidsmom
Mykidsmom Member Posts: 1,637
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

Hi there - I finally had my first oncologist visit after getting my dx of LCIS. The oncologist tells me that my risk of breast cancer is not that elevated over the average woman. He tells me that I can use the bc risk calculators and not even consider the LCIS. Huh? Now I am very confused. My surgeon told me that LCIS increases what was already an elevated risk by 30% and now my oncologist tells me that it is not high. At the same time, the oncologist strongly suggested that I start taking tamoxofin. That doesn't correlate w/ me, why suggest a serious drug if my risk is not serious. I am going to call tomorrow for a second opinion w/ another oncologist, but I thought I would share this information and see what others have to say. - Jean

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  • Misty3
    Misty3 Member Posts: 154
    edited September 2008

    Oh my, your oncologist is misinformed.  LCIS is the highest risk lesion short of BRCA1/BRCA2 gene and I am unaware of any risk model that will account for LCIS.  Your surgeon is on target as your risk with LCIS is approximately 1%/year with a lifetime risk of 25%-30%.  I think your second opinion idea is a good one. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    mykidsmom---- I really don't like to contradict anyone's doctor, but what your oncologist said really contradicts everything I've ever heard or read in my research on LCIS over the last 5 years since I was diagnosed. LCIS raises your risk quite significantly over the average. The risk calculators  for bc specifically state they cannot be used if you have a diagnosis of LCIS. (My oncologist told me that the first time I saw him and said because of that fact, he was really just giving me the best estimate he could---turns out he gave me #s for ADH, so my #s are actually twice as high as that). Misty is right that LCIS has the highest risk next to BRCA. I would definitely go for a 2nd opinion.

    Anne

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

    Thanks for the responses. That's what I thought. Actually, my breast surgeon called me Wednesday to check up and he helped to explain the situation to me. I know he did it the first time when I received the dx, but I guess I needed to hear it all again. He assured me that any further developments of bc will be caught very early w/ the mammograms 1x year, MRI 1x year and surgical/onocology visits on regular basis. He also assured me that we will know if and when I will need a BPM, but that he didn't feel that I needed to go that route yet. So... I feel more settled than I have in months. I am going to see another oncologist in a few weeks, and I am going to see a genetic counselor the same week. I opted not to go w/ tamoxofin, and they didn't think that evista would provide much help. My current plan is to try to close monitoring.

     You ladies are great! Thanks for listenting.

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

    Hi Mykidsmom.  I had a similar experience when I went for a 2nd opinion at an NCI certified major university.  I went slightly over 1 year ago.  You may be interested in reading this thread. 

    I don't think we have the data to know if a bad family history increases your chance of breast cancer.  I don't know if we have the data to know if ANYTHING (presumably besides having a BRCA mutation or a personal history of breast cancer - defined as anything worse than LCIS) adds to your  breast cancer risk of having LCIS.  That's just my opinion.

    I was told by my onc that I might have roughly a 30% risk of bc. 

    http://community.breastcancer.org/forum/95/topic/720520 

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