What type of Dr is playing the biggest role for you.

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shel0625
shel0625 Member Posts: 1
edited June 2014 in LCIS (Lobular Carcinoma In Situ)


I am only talking with a surgeon ?!? This is starting to concern me that I may not be getting the best advice.


I found a lump, and it was time for my 1st mammogram @ 40. Happy 40th :)


They didn't find the lump, but did find other concerns so after a Mam. and ultrasound Said I need a Needle Biopsy and sent me to a surgeon. result decided I have LCIS. They then decided they want a large sample and do a lump and take out a golf ball. Proceed to tell me all clear lets just go on the high watch and wait.


So he says lets do an MRI to be safe and then you will be good for 6 months. YEAH RIGHT !!! The MRI came back showing a mass, not far from where they removed the golf ball size tissue. Then the surgeons says lets do an ultrasound, he did ultra sound wasn't to concerned but took a few core biopsies of the area.


Sorry for the long story but this has only been in 4 months!


My questions is my Surgeon is the only one I talk with, should there be someone else give there opinion? And if so who?


Also is this typical to keep having more things come up and never make it to the lets just watch and see?


Thank you in advance for any help!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2013


    The surgical team follows me in a high risk clinic. A friend of mine who is a breast surgeon also follows her own high risk patients. They did refer me to medical oncology though to discuss antihormonal therapy. I don't know whether you are pre or post menopausal, but when they finally have everything tested out and know where you are, they may refer you to discuss taking Tamoxifen or an aromatase inhibitor. Some surgeons may just prescribe it themselves. I can't think of who else you would need to see.


    It will settle down to the regular followups. It just takes getting through this testing.

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  • 2FriedEggs
    2FriedEggs Member Posts: 640
    edited October 2013


    After I was eventually diagnosed with IDC and had to see an oncologist, he said that he wished that I would have come for a visit before when I was diagnosed with ALH then LCIS. I told him I had no idea to visit a medical oncologist as it was never mentioned by my Breast surgeon. Like MelissaDallas said most likely to get on antihormonals You might want to visit one just to see what he/she says. Heck I would have rather put up with side effects to have reduced my chances of IDC.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    with my diagnosis of LCIS 10 years ago, I only saw my surgeon for a few post-op visits after my lumpectomy and that was it. But I continued to see my oncologist twice a year for 5 years, then it was decreased to once a year after that, and I still see her yearly. She monitors my use of preventative meds (I took tamoxifen for 5 years, and now still take evista), does a physical exam, schedules my mammos and MRIs , goes over any concerns with me, and does a yearly blood test as well. Even if you do not want meds, you could still talk to an oncologist to get their opinion about your individual risk/situation.


    anne

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited October 2013

    For me, it's not a doctor, but my GP's nurse.  She's been wonderful and I rely on her completely.

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  • LucyV
    LucyV Member Posts: 177
    edited October 2013


    my breast surgeon has been following me for five years. In the beginning I also saw an oncologist for BRCA testing and to discuss tamoxifen. I declined tamoxifen so she said to just see my breast surgeon for high risk surveillance.

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  • MoodyMoo
    MoodyMoo Member Posts: 30
    edited October 2013


    My breast surgeon did the job she was supposed to do...excisional biopsy to figure out exactly what was lurking around the edges from the results of a stereotactic biopsy. However, given the diagnoses of LCIS and everything else, and a surgeon that only recommended regular monitoring, I decided to move to a medical oncologist. Even though my time on tamoxifen was short due to a DVT, she's still driving my treatment options, and I'm quite happy with that. She's also connected me with a fabulous new gynocologist since I have now virtually no options for hormonal birth control. I think at the end of the day, having a team of providers who regularly work together help to ensure coordinated care, is the best approach. Until my MO decides to release me...I'm happy having her in charge!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2013


    i think a lot of it depends on the facility you use and how they divide it up. I am treated at a "one stop shop" major hospital series of clinics, and they have who does what assigned a specific way. They used to have a dedicated high risk clinic, but it has been disbanded. Thus the surgeons as primary with the oncs as referrals. I was also referred to genetics, and surgical pretty much bows to them on risk assessment.

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  • eileenj
    eileenj Member Posts: 64
    edited November 2013

    @2friedeggs:

    Can you please tell me how soon after dx of LCIS were you dx'd with IDC?  I have just been dx'd with ALH....dx'd with LCIS back in 2012.  I am concerned now because of this new dx of ALH.  Im seriously thinking about PBMs because 1) im really scared and 2) not sure if I want to deal with the "wait and watch" and the biopsies that encompany that.  I will add that I am making an appt with an oncologist to discuss my risks.

    Will have a consult with my dr. probably next week....Thank you and hope you are feeling good today :)

    Eileenj

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2013


    eileen----when you have LCIS, you automatically have ALH already (it's the step right before LCIS), so a new finding of ALH doesn't change your overall situation (diagnosis, treatment plan or risk level). However, I completely understand how having another biopsy and lumpectomy can add to the stress. I was diagnosed with LCIS 10 years ago and fortunately, I haven't had to go thru anymore biopsies/lumpectomies, but if I did, I'm sure I would be feeling the same as you and reconsidering my options. I'm so glad we have this site to come to for support where people understand.


    anne

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  • leaf
    leaf Member Posts: 8,188
    edited November 2013


    To look at more than one person who got invasive breast cancer after a diagnosis of LCIS, its probably best to look at studies. One of the largest and longest studies is the Chuba study. http://university.asco.org/sites/university.asco.org/files/ClassicReferences_Breast_EpidemiologyBiology_1..pdf



    The rate of breast cancer incidence did NOT go down the farther away from their LCIS diagnosis. They found a total of 350 cases of invasive breast cancer in a population of 4853 LCIS women. They looked at the SEER database.The minimum incidence of breast cancer was about 7% at 10 years. If you look at Table 4, you can see that the crude cumulative % diagnosed increased by about 3-5% every 5 years.


    Other studies (which were smaller) showed other incidences.


    Haagensen et al reported 10 patients with IBC in 53 patients with LCIS, for an 18% crude incidence rate with 16 years of minimum follow-up. Rosen et al


    showed a 29% rate, with 29 IBCs in 99 LCIS patients. Other smaller studies (32 to 80 LCIS patients) had no more than four to nine IBC occurrences


    each, with incidence rates ranging from 6% to 12% at 5 years and 12% to 23% at 18 years of follow-up.


    As with women who had NOT been previously diagnosed with LCIS, the breast cancer incidence increased with age. Table 2 shows that 20 years after diagnosis, women who were diagnosed before the age of 40 had about an 8% incidence of breast cancer, whereas women who were diagnosed with LCIS at an age of 70 or above had a 20% incidence of breast cancer. Note that the number of subjects get smaller the farther away from diagnosis because women died of causes other than breast cancer. Women who were diagnosed with invasive breast cancer after an LCIS diagnosis were diagnosed at an earlier stage (figure 1).


    49/4953 LCIS patients were diagnosed with invasive breast cancer 1 year or less after the LCIS diagnosis. These were probably invasive breast cancer cases that were missed at the LCIS diagnosis. Since it is generally thought that most breast cancer has been in the breast for some 4-10 years before it can be diagnosed by any means, it can be very hard to say whether the subsequent invasive breast cancer was 'due to' the LCIS.

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