tamoxifen to shrink lobular tumour

deise46
deise46 Member Posts: 3
in Breast Cancer #1

Hi everybody,

im new here and wondered has anybody here been treated with tamoxifen to shrink their tumour preoperatively. I was 45 when diagnosed with a 6cm grade 2 invasive lobular tumour. I cant find any research to support this treatment in a premenopausal women and wondered could anybody help? 

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
    Hi and welcome

    I was diagnosed with similar type of cancer with a huge tumor 6.5. I had a very aggressive treatment mastectomy, 6 rounds of Chemo, radiation and then Tamoxifen It is my understanding that at young age as yours for lobular you need to be treated very aggressively. Please seek a second opinion to make sure you are on the right path. 

    Hugs

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #3
    I "JUST" finished my 5th year

    I "JUST" finished my 5th year of tamoxien-post DCIS and 2 lumpectomies...SO it was not to shrink-I"ll be interested to see if others comment-

     

    Best of luck

    Denise

  • deise46
    deise46 Member Posts: 3
    #4
    New Flower said:

    Hi and welcome

    I was diagnosed with similar type of cancer with a huge tumor 6.5. I had a very aggressive treatment mastectomy, 6 rounds of Chemo, radiation and then Tamoxifen It is my understanding that at young age as yours for lobular you need to be treated very aggressively. Please seek a second opinion to make sure you are on the right path. 

    Hugs

    thank you

    hi 

    i will look for a second opiion, many thanks 

     

  • camul
    camul Member Posts: 2,537
    #5
    I agree wih New Flower
    If you are not completely sure about your treatment get a second opinion. I love my onco but I wanted to be sure that whahe was proposing was best for me, so I sent off my scans and history to City of Hope and got a second opinion. Their recommendation for treatment was identical to what my doctor was proposing. My onxco totally supported my decision for a 2nd opinion. lol I even got a third to get more info on a.clinical trial that was being done at Johns Hopkins!

    Always remember you are your best advocate, and if in doubt, check it out!
    Hugs,
    Carol
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #6
    breastcancer.org has a

    breastcancer.org has a website and discussion forums devoted to ONLY breast cancer. I use this site a well as that one.

    I think you will find a lot of information under the breastcancer.org forum called ILC (Invasive Lobular Carcinoma). 

    I really don't know much about ILC other than that it can be really sneaky and hide.

    Personally, I think 6 cm is a pretty large tumor and from what I read on the boards, most women have chemotherapy as well if they need to shrink the tumors before surgery.

    But then not every one is the same.

    I agree about getting a second opinion and hope you check out the breastcancer.org website as well to see what the other people are saying about their treatment.

    I wish you the best.

    I found this on breastcancer.org's Informational Pages about ILC:

    If an invasive lobular carcinoma is larger than 1 centimeter in diameter and/or has spread to the lymph nodes, chemotherapy is usually recommended or, at the very least, seriously considered. When chemotherapy is given after surgery, it is called adjuvant therapy. In cases where the tumor is large or has spread to many lymph nodes or other parts of the body, chemotherapy may be given before surgery to shrink the cancer. This approach is called neoadjuvant therapy. In either case, chemotherapy will be given in cycles, usually with a day (or days) of treatment followed by a period of “off” days. The exact schedule can vary depending on the medication or medications used. An entire course of chemotherapy usually takes about 3 to 6 months.(http://www.breastcancer.org/symptoms/types/ilc/treatment/systemic)

  • Doe1504
    Doe1504 Member Posts: 94
    #7
    New Flower said:

    Hi and welcome

    I was diagnosed with similar type of cancer with a huge tumor 6.5. I had a very aggressive treatment mastectomy, 6 rounds of Chemo, radiation and then Tamoxifen It is my understanding that at young age as yours for lobular you need to be treated very aggressively. Please seek a second opinion to make sure you are on the right path. 

    Hugs

    ILC

    I was diagnosed in April 2013 with Invasive lobular carcinoma. An MRI showed 3 tumors, when I had a bilateral mast. in May there were actually 4 tumors. They, all together, were bigger than 5cm. I had 4 rounds of Adrimycin/cytoxin AKA red devil, I am now taking 12 weeks of Taxol and will have to take tamoxifen as I have not been thru menopause. I was offered/recommended radation, which I opted not to do for several reasons. I have heard that radation will shrink a tumor, but never heard of tamoxifen to shrink it. Check around and be sure and ask your dr. Good Luck to you.

    Dolores

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #8
    Haven't heard

    this before.  I have the same cancer as you.  Estrogen positive Infiltrating Lobular.  Pre meno.  So had usual four chemos after surgeries and no radio as hadn't spread and initial tumor was just in the size range for chemo requirement.  I had bilateral mastectomies as had already started in other breast in very early stages.  Only heard of chemo to shrink tumors before surgery.  I would double check.  Good luck.

  • greta
    greta Member Posts: 237 Member
    #9
    cancer.org (American Cancer Society's website)

    Hi,

    Welcome to our community!

    The Cancer Survivors Network is an American Cancer Society (ACS) service and is part of its website, cancer.org.  ACS has global recognition as a credible source of current cancer information.

    The blue area on the left side of the CSN pages has links to areas of cancer.org which have information about common cancer-related concerns/issues.  You'll have to scroll up to the top area of this page to see it. If you click on "Cancer Information," which is the first item in the blue area with the cancer.org heading, you will get a page that includes a text box you can use to search thousands of pages of ACS content. I entered invasive lobular carcinoma and got many search results. This one might be of particular interest:   http://www.cancer.org/treatment/understandingyourdiagnosis/understandingyourpathologyreport/breastpathology/breast-cancer-pathology 

    ACS also has a national cancer information center (NCIC) which is open around the clock every day of the year. It is staffed with specially trained cancer information specialists who are always available to answer specific questions about cancer and other cancer-related issues such as health insurance, resources, etc. The number is 1.800.277-2345. Please note that most pages on cancer.org also have links you can use to chat online with one of the cancer information specialists or dial the 800 number. You can also email the NCIC at http://www.cancer.org/aboutus/howwehelpyou/app/contact-us.aspx.


    Best,

    greta
    Your CSN Staff

  • deise46
    deise46 Member Posts: 3
    #10
    greta said:

    cancer.org (American Cancer Society's website)

    Hi,

    Welcome to our community!

    The Cancer Survivors Network is an American Cancer Society (ACS) service and is part of its website, cancer.org.  ACS has global recognition as a credible source of current cancer information.

    The blue area on the left side of the CSN pages has links to areas of cancer.org which have information about common cancer-related concerns/issues.  You'll have to scroll up to the top area of this page to see it. If you click on "Cancer Information," which is the first item in the blue area with the cancer.org heading, you will get a page that includes a text box you can use to search thousands of pages of ACS content. I entered invasive lobular carcinoma and got many search results. This one might be of particular interest:   http://www.cancer.org/treatment/understandingyourdiagnosis/understandingyourpathologyreport/breastpathology/breast-cancer-pathology 

    ACS also has a national cancer information center (NCIC) which is open around the clock every day of the year. It is staffed with specially trained cancer information specialists who are always available to answer specific questions about cancer and other cancer-related issues such as health insurance, resources, etc. The number is 1.800.277-2345. Please note that most pages on cancer.org also have links you can use to chat online with one of the cancer information specialists or dial the 800 number. You can also email the NCIC at http://www.cancer.org/aboutus/howwehelpyou/app/contact-us.aspx.


    Best,

    greta
    Your CSN Staff

    Hi everybody,

    thank you for all your replies. I have souht a 2nd opinion and have been told i need a mastectomy, reconstruction and chemo plus radiation. The new centre i attended said that there is little evidence for its neoadjuvant use in the premenopausal woman although there are some centres using it. On the positive side i have had a good clinical response to the tamoxifen and they feel i should do very well. Many thanks again Deise 

  • 65chevy
    65chevy Member Posts: 2
    #11
    deise46 said:

    Hi everybody,

    thank you for all your replies. I have souht a 2nd opinion and have been told i need a mastectomy, reconstruction and chemo plus radiation. The new centre i attended said that there is little evidence for its neoadjuvant use in the premenopausal woman although there are some centres using it. On the positive side i have had a good clinical response to the tamoxifen and they feel i should do very well. Many thanks again Deise 

    You don't have to go that

    You don't have to go that route. You don't need to have a matectomy to deal with this disease.

    I did 5 months of neoadjuvant chemo therapy to shrink my tumor.. And am now going to the AIs after Tamoxifen.

    Neoaduvant use in premenopausal women does work. I am premenopausal, and it did shrink my tumor. If tamoxifen is working for you, you can stay on that until the tumor gets small enough for a lumpectomy.

    Please look into doing that, and considering abaltion techniques for tumor removal. You will be told a different thing by each and every provider out there. Do what's best for you. But mastectomy, reconstruction, chemo and radiation is a hell of a lot of pain and anguish. Try a longer lower dose neoadjuvant chemo. I did 20 weeks of lower dose taxol, and it was easy. Now I am doing hormonals..

     

    If tamoxifen is working, stay on that until you can shrink the tumor into oblivion!

     

  • 65chevy
    65chevy Member Posts: 2
    #12
    deise46 said:

    Hi everybody,

    thank you for all your replies. I have souht a 2nd opinion and have been told i need a mastectomy, reconstruction and chemo plus radiation. The new centre i attended said that there is little evidence for its neoadjuvant use in the premenopausal woman although there are some centres using it. On the positive side i have had a good clinical response to the tamoxifen and they feel i should do very well. Many thanks again Deise 

    You don't have to go that

    You don't have to go that route. You don't need to have a matectomy to deal with this disease.

    I did 5 months of neoadjuvant chemo therapy to shrink my tumor.. And am now going to the AIs after Tamoxifen.

    Neoaduvant use in premenopausal women does work. I am premenopausal, and it did shrink my tumor. If tamoxifen is working for you, you can stay on that until the tumor gets small enough for a lumpectomy.

    Please look into doing that, and considering abaltion techniques for tumor removal. You will be told a different thing by each and every provider out there. Do what's best for you. But mastectomy, reconstruction, chemo and radiation is a hell of a lot of pain and anguish. Try a longer lower dose neoadjuvant chemo. I did 20 weeks of lower dose taxol, and it was easy. Now I am doing hormonals..

     

    If tamoxifen is working, stay on that until you can shrink the tumor into oblivion!

     

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