triple neg, now not?

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tammyj38
tammyj38 Member Posts: 11
edited June 2014 in Triple-Negative Breast Cancer

I was originally diagnosed as TN but after bugging my onc. to have it retested at another lab now the report shows ER+ but he says it's just a slight plus. Now I'm more confused because he shrugged his shoulders and said guess we'll put you on Tamoxifen now. My surgeon said if I'm PR- still that Tamoxifen won't help but won't hurt me either! I've been reading up on Tamoxifen and there's all kinds of dangerous side effects! I know it's ultimatelly my decision but I have no idea which way to go!  I'm also trying to decide on having a hysterectomy or not (ovaries and all). So many decisions and my insurance coverage ends in March!!! I'm on my last week of radiation treatments and have a pretty painful burn but can tough it out for 5 more! I had 3 rounds of FEC and 3 rounds of Taxotere ended in October. Tumor completely disapeared! Had surgery in November (lumpectomy) clear margins and no cancer in lymph nodes although she told me cancer might have been there but chemo could have gotten it. It's very frustrating not knowing if lymph nodes were positive or not to begin with. Had chest and abdominal CT scan after finished chemo and it was normal. I felt really positive while going through chemo because I knew it was doing something! Surgery was scary until I got my path. results. Radiation has gone pretty smoothly but now i'm back to that panicky feeling of not knowing what to do now!!! Anyone have any advice or know of anyone such as me that showed a slight ER+ after being retested? My husband thinks I've put my body through enough and shouldn't have the hysterectomy and thinks I shouldn't take Tamoxifen either. I'm kinda leaning towards having the hysterectomy and not taking Tamoxifen. I see my onc. on Feb. 9th. I want to learn as much and be as informed as possible when I go.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    If you are only slightly + for the er/pr- Im not sure having a hysterectomy is the answer for you....they only usually do that for highly positive, as I was....your insurance might not cover it for those reasons either so be sure to check into that before you make you decision...

    Even when we have had every treatment they can throw at us I think we feel what you are feeling....its hard to not have complete answers but only time will really tell if what we have chosen as treatment is the right thing...

    I went through tons of emotions after I finished treatment and thought I was loosing it but after reading on this board I discovered that it is very normal to have end of treatment fears....

    Best wishes

    Jule

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  • defeatbc
    defeatbc Member Posts: 53
    edited January 2009

    Hi Tammy.

    I was also initially dx as triple negative, then retested to be slightly ER and PR positive.  My oncologist was very pleased with the retest results and placed me on Femara after chemo.  Femara is only used on postmenopausal women, and does not have the risk of endometrial cancer as Tamoxifen.

    I'm 31 years old, and am now "chemopausal".  If my periods return, my doctor will put me on Lurpon shots so to allow me to continue on Femara.  So far, so good, just very mild side effects.  You might want to ask your doctor about Femara+Lupron.

    It's very confusing to be "slightly ER/PR positive" or "almost triple negative".  Now that I'm done with chemo and NED, I still carry the same burden as the "true triple negative" ladies.  The hormone blocking drugs are not going to be as effective on me as they will be on the "highly ER/PR positive" ladies. 

    Choices are difficult.  I chose to do things as aggressively as possible to keep my body clear of cancer.  I know I might be too agressive, but I never regret my choices.  I hope this helps a little with your decision.  Good luck.

     -- Hoa (defeatbc)

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  • tammyj38
    tammyj38 Member Posts: 11
    edited January 2009

    I don't want to sound dumb but I'm still learning the terms and abbreviations. What does NED mean? I've read it on several different posts. I'm curious if you're 31 did your onc. put you on Femara because periods stopped from chemo? Did he do any bloodwork to check hormone levels? I'd rather take anything other than Tamoxifen after reading about it. I just turned 45 and was told that at my age my periods might not return. I'm curious if bloodwork will tell or if it's just wait and see.

    I don't think we can be "too aggressive!" I don't want to take any chances of this coming back. I have two preteen daughters and they need me here!

    Thanks for responding and best of luck to you!

    Tammy

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  • WNYnurse
    WNYnurse Member Posts: 23
    edited January 2009

    Tammy

    Yes there is blood work to tell if you have finished menopause.  I was tested, found to be in the middle of it, not quite finished.  I was put on Zoladex injections monthly to chemically finish menopause.  I am on Arimidex because I was very positively (as my report stated) ER/PR but negative HER.  My  tumors were mm in size.  I had bilateral mastectomy with expanders now waiting for implants.  I am 55yr old and thought I was done but I was not......

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  • defeatbc
    defeatbc Member Posts: 53
    edited January 2009

    Hi Tammy.

    NED stands for "No Evidence of Disease".  I think some people use it interchangeably with "remission".

    After I completed chemo, my onc. ordered bloodwork (don't recall what the test was called) to determine for sure if I was menopausal from the chemo.  From that, he was able to decide whether I can start on Femara, or if I will need Lupron shots in addition to Femara.  I will have subsequent bloodwork to see if I am still chemopausal.

    My mother was 45 years old when she had chemo for breast cancer.  She said her periods never came back, and thinks the chemo "hurried" her menopause.  It is very possible you could have the same situation.  It's hard to get dx details from her as English is not her first language and it caused a language barrier with her doctors.  She didn't have any treatment after her mastectomy and chemo, so I'm assuming she was triple negative

    It would be a good idea to bring up Femara or any other aromatase inhibiters as a potential alternative to Tamoxifen.  Although, I have to point out that you will come across many women who have been on Tamoxifen, and are fine.

    Good luck.  Let us know how it goes.

    Hoa (defeatbc)

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  • tos
    tos Member Posts: 376
    edited February 2009

    I am curious, when the second test was done, was it a FISH test?

    I understand that is the Gold Standard for deciding pathology and most

    of us do not get it unless it is sent out so that is why I ask you this question.

    If not, why not have this done and then know for sure what you are dealing

    with and what or what not you might need?

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  • tibet
    tibet Member Posts: 545
    edited February 2009

    Isn't FISH test decide for HER2 status only not the ER and PR status?

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  • Dejaboo
    Dejaboo Member Posts: 2,916
    edited February 2009

    I thought the FISH teszt only tested for Her2 also.

    Which isnt what Tammy is questioning.

    Tammy it depends on how low the ER + was...Some Drs say if its 10% or less it is considered Negative.  Some Drs may say 5%.   Id ask your Onco what the % was.

    I am 18% ER+ & PR -.  There are some studies (sorry I have no linkis) That say Tamoxifan does not work as well for ER+ PR-.  I also think with a Lower % ER+ That it would probably work less.  If one was say 90% ER+ PR-.  Then Tamox may work better.

    There are probably some threads here discussing Tamoxifan more that may help you decide.

    I 1/2 agree with your surgeon...Saying Tamox wont help you...I dont agree with him Saying Tamox wont hurt you...It does have SE.   Great if its a drug you need...But something that probably isnt helping you....

    Pam

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  • danix5
    danix5 Member Posts: 755
    edited February 2009

    I did the total hyster/oopher in May 08.  If you would like to ask me questions feel free to pm me.

    I decided to do the surgery rather than tamox.  I had a choice and made it.  Lack of sleep is the biggest problem.  Hot flashes wake me up all night, you can go back to sleep but it is not a restful sleep.

    Glad to help if you have any questions.

    Dani

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