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Janine - pleomorphic lobular carcinoma

Janine1965
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Hi I am 52 . Had my first mammogram and they found a lesion. Had biopsy and they told me my cells were changing and I was high risk for breast cancer. Had op to remove it. When I got patholit report back they found I had a rare cancer. Pleomorphic lobular carcinoma in situ. My surgeon recommended radiotherapy.  I was told by oncologist that because it was my left breast radiotherapy could give me long term heart and lung problems. So she recommended follow up surgery.  I have to wait 6 months now and they will check me again.  They also told me my cancer is rare and they can't really tell me much about it . Has any one had Pleomorphic lobular carcinoma . Or had op with no radiotherapy.  Would like to hear from any one .

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    Janine--I am 70 and three years I was diagnosed with "pleomorphic lobular carcinoma in situ". Most who have LCIS (vs. DCIS) don't have to have radiation after cells or tumor are removed, but because of the more rare shape of my cells, like yours, I was treated as if I had cancer--even though I was considered "pre-cancer". I went through 6 wks. of radiation, which really wasn't bad at all, and now take a pill called Arimidex for 5 yrs. I am doing great, and only have two more years on the pills, which vastly reduces chances of reoccurence. All my mammograms have been negative. All is good, and my only advice is to make sure you get a second opinion. Pleomorphic is more rare, so they don't have as many studies on it, but it is treatable. Hope this helps!
  • Offline in reply to rosey1047
    Thank you for your reply. Great to hear you are doing great. I think I will ask for a second opinion. You have made me feel so much better to actually hear about someone else who has had or and you are fine. Even when I tried to Google it. It never said much about it. Thand again. Best wishes to you
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    I also Have Pleomorphic Lobular carcinoma in Situ. It is uncommon but not extremely rare. Do you have the invasive or non-invasive type? So far mine is non-invasive but they still want to do radiation. There are risk factors for me to take either Tamoxophen or Arimidex. I also just got diagnosed with serious spinal osteoporosis. I will ask about Raloxopene - if it is as likely, less likely, or more likely to cause blood clots (I have genetic history both sides of family of this)? I am learning all I can about benefits and risks of radiation. For now I prefer to wait until I have next mammogram in 6 months. Radiation weakens immune system. But I will speak to the radiation oncologist and see what they have to say. I have already had a partial mastectomy. 10 years ago I had a surgical biopsy that found Lobular carcinoma in Situ, presumably the "classic" type. The thinking now is to treat the pleomorphic type the same as Ductal carcinoma in Situ. Even in the past year the experts are learning new things about it. I try to read everything I can even if I don't understand it.

  • Offline in reply to Amiela

    Hello Janine, Amiela and Rosey

    I hope you are all getting on well.  I was interested in your posts above as I have recently been diagnosed with Pleomorphic LCIS too.  I had a lumpectomy 2 weeks ago to remove what they thought would only be a 5mm area, however they removed a 35mm area with no margins so they suspect there is actually more than one area and that there may also be invasive cancer present.  I therefore now have been told I must have a mastectomy.  I have been offered immediate reconstruction, but have reservations about this particularly as it might delay the treatment that could be necessary if they do find invasive cancer! 

    I would be very grateful if you'd be willing to say what has happened to you since your posts last year. Hoping all is well though of course.

    Thank you.

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    I was diagnosed with a strange mixture of phleomorphic and classic invasive lobular carcinoma in July 2016. I've had the usual treatment, lumpectomy rather than mastectomy, chemotherapy and radiotherapy. So far, despite it being a 7cm cancer, all is well. Good luck!

  • Offline in reply to theborrower

    I was diagnosed with invasive pleomorphic lobular cancer but with a triple negative type. Has anyone else been diagnosed with this? I had a lumpectomy, chemo and radiotherapy but there's no targeted treatment for triple negative BC. I was discharged from oncology right after finishing chemo which seemed strange to me with this being an aggressive cancer. 

  • Offline in reply to Kalie

    Hello Kalie ,

     

    I was diagnosed with the same as you IPLC TN...I've had a mastectomy, having chemo now..they will MRI scan every year for 5 years. How are you doing now, have you any  follow up scans booked?

     

    Xxx

  • Offline in reply to Makeupface

    Hi Janice, 

     

    I had a lumpectomy, as my lump was small. 

    I've never had an MRI scan and only had a CT scan when I got a pulmonary embolism. 

    In Scotland we have a mammogram every year  for 5 years. 

     

    I'm doing okay right now, a year after finishing chemo. 

     

    Hope you're ok. 

     

    X

  • Offline in reply to Amiela

    This is an update to my first post. I learned when I was diagnosed that pleomorphic lobular carcinoma in situ - PLCIS for short, that it is relatively rare. Only about 1 in 600 women get it. What amazed me, though it is also sad, is that my half-cousin, we have the same grandfather, also had the same type. Hers was more advanced, but she is doing well now. This makes me think that there may be a genetic link. I know my grandfather's mother died young but don't know if it was cancer related. If anyone hears about a possible genetic tendency for this relatively rare type of cancer I would like to know more about it. 

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    Hi janine,

    I have just been diagnosed with PLCIS too. I was wondering how it is going for you? There didn't seem to be much info or answers! 
    thanks 

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