Risk Reduction Treatment for LCIS dx

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eileenj
eileenj Member Posts: 64

Hello ladies.  I have not been around lately as I took a break from "it all" and decided to give my brain a rest from the constant thinking of when, why and what if, and thought today to post a question to my LCIS sisters who are being treated with Evista or something like it.

I am being treated by an oncologist now and its been a few years since I was dx'd with LCIS/ALH.  My oncologist is hesitating to start me on any type of risk reducing medication and her explanation was to wait and see if I really need to be on this drug.  I am thinking about getting a second opinion.  But until I do, I am wondering, how many of us here with an LCIS, ALH or ADH dx are taking or not taking these risk reducing medications and why?

Peace Love and Light to all...Eileen


 

Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2014

    i can't take Tamoxifen or Evista because I had a pulmonary embolism when I had ovarian cancer so they won't give it because of the clotting risk.

    They have recommended I take Aromasin and I'm still thinking about it. I'm leaning towards no because of the risk of bone loss, because it sometimes elevates cholesterol & mine is already high, and because I finally have no menopausal symptoms & I suffered terrible depression during perimenopause. Even so, it still makes me a little nervous to not be taking anything.

    Exercise & maintaining a low lean body weight are good preventatives also. I need to work harder on this.

  • lemon68
    lemon68 Member Posts: 684
    edited March 2014

    I am not taking anything, tried tamoxifen but it just wasn't something I wanted to take and my oncologist couldn't really tell me it was going to help or not help. I had my ovaries removed to cut down on the estrogen and am considering a AI in the near future, then again maybe not. I want to feel good, I feel like I have given or had taken enough. Hard choice but least it is ours.

    best to you.

  • eileenj
    eileenj Member Posts: 64
    edited March 2014

    hi Melissa! TY ...I too am scared to not be taking anything bit I have started yoga which I love and eating healthier...I'm prob going to get a second opinion on this even though I like my oncologist and I think she really knows her stuff I just feel I should be doing more to protect myself ...

  • eileenj
    eileenj Member Posts: 64
    edited March 2014

    hi Lemon!  We're you dx'd with LCIS or something else before your  ILC dx?

  • MoodyMoo
    MoodyMoo Member Posts: 30
    edited March 2014

    I have LCIS, ALH, and ADH...started out on tamoxifen but ended up with a DVT, so had to stop.  Went on Lupron and then added Femara...  I told myself from the very beginning of this roller coaster ride that I would do anything that I possibly could in order to minimize my overall lifetime risk.  I don't want to fast forward several years and then have any regrets for "what I could have done".  As long as the side effects are manageable, I'm trying to stick it out.

  • lemon68
    lemon68 Member Posts: 684
    edited March 2014

    Hi Eileen- was DX with LCIS after a stereotactic biopsy, they told me to wait and see or have it taken out. Turned into a lumpectomy I had LCIS, DCIS with a 2 mm. tumor of ILC. Scares me everyday that there could be more. They removed a area the size of a golf ball and it had all 3 things, margins clear but ILC is sneaky. It was a year in January, since then I have made the decision to do DIEP surgery in May. I don't want to look over my shoulder waiting or wondering at each mammo (which I don't trust) is this the time. That's just me, took me a year to make this decision. I also didn't want to take a drug daily that messed with my quality of life, I want to feel good. Removing my ovaries was a big step, I felt by doing so I stopped feeding the cancer. I hope that you make the choices that are right for you, if like me they sometimes change. My BS at the time said before he knew it was ILC, that it was an old woman cancer and I would be fine, wrong.. I wasn't fine and it is not an old woman cancer. Best to you Eileen

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2014

    Lemon, LCIS is not cancer (or not considered so by many doctors) but a high risk condition. Eileen is talking about an LCIS only diagnosis and her considerations are different than someone who has been diagnosed with cancer already. We are talking taking drugs purely as a preventative measure.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    eileen---"my oncologist explanation was to wait and see if I really need to be on this drug". I am curious, why is she hesitating and just what is she "waiting" to see? if you develop invasive bc?  LCIS is a condition known for high risk for future invasive bc; and tamoxifen and evista  are both known to reduce that risk. (tamox 45-50%; evista about 38%).  I was diagnosed with LCIS over 10 years ago (and my risk is further elevated by my mom's ILC, so I have an added reason to take preventative meds); I took tamox for 5 years and now have been taking evista for over 4 years. I have some SEs, but overall I tolerate both meds well. I rather take the very low risk of serious SEs (<1%) than my high risk of invasive bc. (estimated to be around 35% by my doctors). It's definitely a personal decision and not one made lightly. But a 2nd opinion can't hurt.

    Anne

  • eileenj
    eileenj Member Posts: 64
    edited March 2014

    MoodyMoo, that is how I feel too!  I want to do whatever I can to reduce my lifetime risk, as long as my body can tolerate it, why not put me on this medication...sigh...so darn fustrating.  I find an oncologist I really love and she is hesitant to put me on one of these drugs which, her choice would be, Evista.

  • eileenj
    eileenj Member Posts: 64
    edited March 2014

    Exactly awb!  I messaged my surgeon to update her on what is going on and to get her opinion.  Will keep you posted...:-/ 

  • lemon68
    lemon68 Member Posts: 684
    edited March 2014

    Thanks Melissa, I am fully aware what LCIS is and I am also aware of what it can become. I was not trying to 'scare' anyone just sharing my experience with LCIS.

    If this scared anyone that was not my intention.

  • Smitty333
    Smitty333 Member Posts: 130
    edited March 2014

    Just looking for your opinions because I am struggling with my decision. I was diagnosed with LCIS with necrosis, as well as ADH  in a different area. I have had a complete hysterectomy a year ago. My Dr wants me to do the watch and wait on the LCIS and up my estrogen for my menopause symptoms. The hotflash's are terrible, along with the not so pleasant other side effects of menopause. I am 35. I made peace with this decision for about a week. I have a new area that I am having pain in and very lumpy. My Dr felt it and said it may just be from one of the 3 lumpectomys, imflamation maybe and of course added that cancer does not hurt. Well my LCIS hurt and would never have been found if I had not insisted on biopsy of the area, and the area is not near the incision sites.So at this point I am feeling not as satisfied with the watch and wait and the estrogen upping. I know every one is going to say not to take any estrogen, but my Dr told me the side effects to my body so young without any estrogen could be worse than the cancer I may or may not get.  I guess I am considering switching Drs. But than I tell myself I am overreacting and he knows much more than I do. HELP!!!! 

  • leaf
    leaf Member Posts: 8,188
    edited March 2014

    Since you have LCIS, unless _perhaps_ you choose PBMs, you will be followed for the rest of your life (unless you choose not to be followed at all.  Western traditional medicine recommends at least watchful waiting for LCIS.)   For me, that means that its helpful to form a good relationship with a doctor you trust.   There is no magic answer for everyone, and different doctors usually have different opinions. 

     Would you feel better if you got second opinions with another doctor?  When you have time to decide, like you do with LCIS, I like the idea of getting as many opinions as you need.  (If you've had an excision, then you probably have at least several years to decide what you want.) You may get along with one doctor rather than another.    You are a unique person, with your own unique history, priorities and concerns.

  • Smitty333
    Smitty333 Member Posts: 130
    edited March 2014

    Thank you leaf. I read other woman's post about doing everything possible to reduce the risk of invasive cancer and remember a time when I said the same thing. Than I wondered if I was pushed a bit into not doing anything. There is always that little voice in the back of my head saying I hope you don't regret this in the future. Fustrating........

  • eileenj
    eileenj Member Posts: 64
    edited March 2014

    Update: I sent my surgeon an email bringing her up to date on what happened with my onc last month and I still havent heard back from her (my surgeon).  Something else that has been eating at my gut is the fact that last month, after my needle aspiration, I went to see my onc and she explained her follow up plan for me in six months, so I decided to send her an email.  She then proceeded to have the girl who makes her appts call me back to tell me she does not respond to emails and also to tell me that I can have an MRI now and we can discuss risk reducing meds in 4 months.  Im not supposed to have an MRI now!!! I just had a mammo/ultrasound now.  uggh....I thought that was so rude! :(  I need to see another onc...anyone from NY have any recommendations?  I posted in the recommendation section of the boards and no one responded.

  • eileenj
    eileenj Member Posts: 64
    edited March 2014

    Smitty, I am so frightened to sit and do nothing.  I want to go on these meds and pray that my body will tolerate them!  I was told by my surgeon that Evista is a very safe drug and is for women who are post menapausal.  I am there, Im post menapausal...I want this drug!  I read somewhere that we have to be our own advocates if need be and I want what I want.  Its my body, my breasts, my life!  I do not want a doctor telling me that "you might NOT have to take any meds at all."  I HAVE LCIS!!! Im so pissed ...I feel like she is playing "lets see" with me.  Eff that...I dont want to be your experiment.  I want what is recommended by the BC powers that be...MRI alternating Mammo/ultrasound every six months and what my surgeon recommended, "its time for you to get on some kind of risk reducing medication."

    So what is the problem? uggh...I took a month off to forget about it all and then I start thinking...why am I waiting?!?  Its been over 2 whole years since I was dx'd with this crap...:(

     

  • Ninany
    Ninany Member Posts: 55
    edited March 2014

    Eileenj- my surgical oncologist is Richard Shapiro and my medical oncologist is Marleen Meyers, they are both terrific and are affiliated with NYU.  Highly recommend.

  • eileenj
    eileenj Member Posts: 64
    edited March 2014

    Hi, Ninany! Thank you so much! Ya know, I have Marleen Meyers card right here!!!  When I went for the needle aspirations at NYU I saw her card at the front desk and took it.  Im going to call her tomorrow.  :))))  Hope your doing well xoxoxoxo

  • Mor
    Mor Member Posts: 30
    edited April 2014

    way back in 1996 they found micro calcifications in my left breast and it was determined I had Lobular Carcinoma in Situ.  GYN suggested Evista and I took it for oh so many years...until i was diagnosed with cancer in my right breast.in November of 2013.  I have had a lumpectomy, just finished my last round of chemo and will start radiation soon. The breast surgeon told me that the Evista certainly didn't help me.  So I am no longer taking it.

  • clwhite
    clwhite Member Posts: 5
    edited April 2014

    Hi All,

    Found out I am in the same boat, floating down a river with a lot of whitewater.  I was just diagnosed with LCIS, had my wire guided biopsy and surgical excision two days ago.  I will be seeing an oncologist soon and want support on making a sound decision.  My sister had Stage 1 DCIS in her left breast and Stage 2 invasive cancer in her right, estrogen positive.  My mom is a breast cancer survivor, too.  Both tested negative for Bracha 1.  My sister tested negative for Bracha 2 and BART?  Sorry, don't know all the terms yet.  My sister reacted poorly to Tamoxifen after her chemo and radiation treatment.  She had a hysterectomy and is now on Remadex.  I am not sure what course to take, monitoring, meds, or PBM?  I have time to think about it.  But would like a supportive community of women having gone through the same experience.

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