Tamoxifen not as effective on Lobular?

tifan
tifan Member Posts: 19
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi,

A co-worker of mine was diagnosed with lobular cancer about a year before me, she didn't have to have chemo so her treatment has consisted of surgery and Tamoxifen.  She told me that her oncologist recently told her that studies are showing that Tamoxifen is not as effective on Lobular cancer as it is on Ductal, something about a different type of estrogen receptor. So her dr. is encouraging her to do something (hysterectomy or oopherectomy) so she can switch from Tamoxifen to an Aromatase inihbitor. Has anyone else been told this by their doctor?  My onco had said that studies were showing that, in general, pre-menopausal women were better off doing 2 years of Tamoxifen and then 5 of an Aromatase inhibitor, but he didn't say anything about Tamoxifen not working as well for lobular cancer. I am mostly curious because as much as it had seemed I was in chemopause, my periods have returned with a vengeance so I am assuming I'll be taking Tamoxifen for a couple more years at the very least (and I've already been on it for 2 years). 

· Share on FacebookShare on Twitter

Comments

  • jan508
    jan508 Member Posts: 1,330
    edited December 2010

    Tifan:

    Thanks for the post. I had ILC and DCIS and did not hear this but I will ask my oncologist. I did not need chemo and was post menopausal at time of dx. I went on tamox because of osteoporosis in left hip.

    Jan

    · Share on FacebookShare on Twitter
  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited December 2010

    Amen sisters....Tamoxifen didn't help me.  I metabolized it properly but I have had a recurrence of ILC in the same breast 4 years to the day after my first one.  My oncotypedx was a 9 and so they didn't give me chemo.  Looking back....I should have had chemo the first time with a masectomy.  I tried the lumpectomy, 34 rads and Tamoxifen.  I am very dissappointed to be deep in ILC once again.  I went through natural menopause a year and a half ago.  I think us ILC gals have a whole different type of cancer. I don't think we are more aggressive however I think we need different treatments.  After I finish 20 weeks of chemo I will have a bilateral masectomy and a great deal of skin grafting taken from my back to replace the damaged and tumored skin currently covering my left breast.  I thank God that all my scans are good.  I had PET scans, MRI's, Xrays, Biopsies, mammograms, etc.  So far, they can't find any ILC except in the original left breast. 

    Good luck and don't rely on Tamoxifen if you are ILC.

    Nancy

    · Share on FacebookShare on Twitter
  • tifan
    tifan Member Posts: 19
    edited December 2010

    Hi Nancy,

    Iam so sorry you developed a recurrence, but what a great relief that your scans are clear for mets. I agree completely, I think ILC is just different than IDC, but there aren't enough of us ILC gals to make it worthwhile to study our type of cancer.  

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited December 2010

    There was actually a study that came out on this topic a couple of years ago. Info here (sorry I can't paste a live link with my browser):

    http://www.breastcancer.org/treatment/hormonal/new_research/20081030b.jsp

    · Share on FacebookShare on Twitter
  • nwest125
    nwest125 Member Posts: 240
    edited December 2010

    oh I have both wonder what they will do for me my double mast. is on Dec 16th

    · Share on FacebookShare on Twitter
  • nash
    nash Member Posts: 2,600
    edited August 2013
    Thanks, Sherri! Smile
    · Share on FacebookShare on Twitter
  • JennyB100104
    JennyB100104 Member Posts: 237
    edited December 2010

    I was concerned about this, too, so before I started Tamoxifen I showed the study (that the above-posted article was based upon) to my doctors at UCLA. I was told that this is a test-tube study, but studies with actual women with ILC show that Tamoxifen is very effective for us.

    Still...I'm concerned. Argh!

    · Share on FacebookShare on Twitter
  • tifan
    tifan Member Posts: 19
    edited December 2010

    Thank you, Sherri and Nash. I don't know how I missed all this news before. I will ask my Onc about it the next time I see him. 

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2010

    This is interesting--I've never heard or read that tamox doesn't work as well for lobular bc. I can only say in my family it has worked very well. My mom had ILC many years ago (lumpectomy, radiation, tamox 5 years) and is now a 24 year survivor and doing very well at age 81. I have LCIS and took tamox for 5 years and continue to do well 7 years later. (Now take evista).

    anne

    · Share on FacebookShare on Twitter
  • nikola
    nikola Member Posts: 466
    edited December 2010

    I am the lucky one with one cancer that was IDC, one that was mixture of IDC and LCIS and one (the smallest one) that was ILC. Thay put me as stage 1 although all three together were over 2 cm, but no node involvement. I did 4 T/C, had mastectomy and would probably go for ovary removal soon.

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited December 2010

    This is really freaking me out.

    I just sent this to my onco (email as he is in Wisconsin and I now live in Washington state).

    That study was in 2008 and I can't imagine no other news about it...weird.

    I've started getting my periods again so not sure if it is tamoxifen related or if I can start AI's...ugh.



    Of course, we have to remember that many women who do nothing but surgery and take no other treatment may have no recurrence ever ....meaning with or without tamoxifen, we would have the same outcome.

    · Share on FacebookShare on Twitter
  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2010

    Hi Wallycat!  I'm waving from across Puget Sound!

    Have you gotten an onc over there yet?  My mom goes down to Paulsbo - she lives in Port Ludlow.   The onc she sees has an office in Silverdale and Paulsbo and is associated with Harrison Medical.

    I would think you'd have an option to do an ooph and then get on an AI. Then you've hit it with two different hormone therapies.

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited December 2010

    Does your mom like her onco? name? I have to see if he is in our new insurance preferred provider list.



    I am seriously thinking of finishing up my tamoxifen (2 months of pills left), take the 3 months of arimidex I have and then quit. It would put me at 4 years of drugs.

    The San Antonio studies show 26% heart problems on arimidex and I can't imagine insult to injury...

    not an easy choice.



    Feel free to PM me the doc's name and I can investigate. Poulsbo is an hour away from Port Townsend, which is where we are...and sequim is 32 miles...so almost the same....

    · Share on FacebookShare on Twitter
  • GrandmaBubba
    GrandmaBubba Member Posts: 111
    edited December 2010

    I think we're oll different. I was told that since I was Her2 - that chemo may not work as well. It shrunk a tumor that took up my whole breast to microscopic size. You really need to have an Onc team that you trust.

    · Share on FacebookShare on Twitter
  • rakulynda
    rakulynda Member Posts: 286
    edited December 2010

    We all know everyone is different and I just wanted to share my story with ILC dx 2002, Stage 1, 2cm, mastec., TRAM reconstruction and CMF Chemo followed by 2 years of Tamoxifen and 3 years of Femera, followed by Evista until my recurrance found last month.  I literally have a mets explosion.  Mets to all bones, 6.5 cm tumor on ovary, possible liver involvement, omentum caking and possible colon involvement.  I was NED for those 8 years and can't help but think when I ended the Femara, things started happening.  It seems if lobular comes back, it goes to weird places.  Sure wish I would've had my right ovary removed back in 2000 when I had the left one out beacuse of a dermoid cyst but that was before my original bc dx.  Best Wishes to all.

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited December 2010

    I am so sorry you are dealing with this.

    Did you have a grade given you at time of diagnosis.

    Interesting that I also had a dermoid removed when I was 36...it was b-9 but I often wonder if it forced my ovary to work overtime with estrogen.



    I guess you are saying sometimes no matter what we try, it won't work....scary.

    Best to you.

    · Share on FacebookShare on Twitter
  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited December 2010

    Hi Rakulylnda,

    How did you find your new tumors?  Were you having symptoms?  Did they do a PET scan or MRI?  I am fighting my second ILC but so far it is considered a local recurrence.  I had one small 1 cm in left breast.  Now I have 6 small ILC's in and on the left breast right next to the original tumor.  I wish you luck in treating your new cancer.  Let's hope that they keep coming up with new cures. 

    Take care,

    Nancy

    · Share on FacebookShare on Twitter
  • Gitane
    Gitane Member Posts: 1,885
    edited December 2010

    (((((rakulynda)))))  Thank you for coming here to share your story.  I'm so sorry that you are dealing with mets now.  I hope your treatments will work well. Warm hugs, G.

    · Share on FacebookShare on Twitter
  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2010

    Wallycat -

    My mom sees Dr. Murphy.  She likes her.  My mom has this psuedo complaint that she always asks about me rather than how she is doing but I don't take that too seriously.  I've never met her so I can't provide anything more specific.  She did finally fess up to my mom that hair loss was a possible side effect of Femara.  I kept telling her that but she didn't believe me until the onc told her. 

    I'll be in your town next Tuesday.  I have to take my dad to a doctor's apt.   He's not doing well.  Dementia and other issues. 

    · Share on FacebookShare on Twitter
  • wallycat
    wallycat Member Posts: 3,227
    edited January 2011

    Hi Anacortesgirl!

    I will be seeing Dr Murphy on Feb. 3rd...it's the first appointment they can get me in to.

    She comes to port townsend every other Thursday in the afternoon.

    I'll report back.

    THANK YOU!

    · Share on FacebookShare on Twitter
  • kira1234
    kira1234 Member Posts: 3,091
    edited January 2011

    I just had my first visit with my Onc. since starting Femara. I don't know why but was told it is the best Al for my kind of cancer. I'm wondering if it has to do with it being Lobular. If I understand it right Femara takes more Estrogen out of our bodies than the other Al's.

    · Share on FacebookShare on Twitter
  • toomuch
    toomuch Member Posts: 901
    edited January 2011
    Kira1234 - I'm still getting radiation but will be starting hormonals in February. I know that my oncologist is planning to start with Arimidex. I get the feeling that his decision is based on the fact that it is available in generic while the others aren't. Not exactly the soundest scientific reasoning. If there is a study that indicated that Femera is better then Arimidex for ILC, I would love to have a link to it!
    · Share on FacebookShare on Twitter
  • Dawn46
    Dawn46 Member Posts: 80
    edited January 2011

    Hello ladies, I am new to this forum and I have a question. Are any of you considered intermediate metabolizers and still taking Tamoxifen?

    · Share on FacebookShare on Twitter

Categories