TNBC BRCA 1 Shall I have FEC chemo Help

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52dee
52dee Member Posts: 11

HI I am desperate for some advice.I had stage 3 ovarian cancer in jan 2002.I had 6 sessions of carboplatin and taxol followed by hysterectomy and further 2 sessions of chemo.I am BRCA 1 carrier and have lost 2 sisters to ovarian and breast cancer recently.I was diagnosed with DCIS in March 2012 and was told it was non invasive.I made the decision of having bi lateral masectomy with reconstruction because of family history.My surgery was in July 2012 and following that I have been advised that I had a 1cm tumour grade 3 and am TNBC.My oncologist has said I can choose to have six sessions of FEC chemotherapy, however statistics shows it only helps 3% in every 100 woman(if that) Even after that there is no guarantee that the cancer might not return.Unfortunately I have no means of getting a second opinion and although I have tried to research on the internet, there is not much info on this.I would really appreciate if anyone could help me on this as my emotions are in turmoil.My chemo is scheduled on 16th of this Month.I am 52 years old and like most cancer sufferers feel life has been so unfair

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  • Luah
    Luah Member Posts: 1,541
    edited August 2012

    52dee: While I strongly hesitate to advise anyone on a medical decision (other than ask your doc plenty of probing questions and go with your gut!), I will take a crack at this. Your tumour was found, on pathology report, to be invasive... have I got that right? If so, from what I know of the ladies on this forum, TN tumours, unless very small, are nearly always treated with chemo... and FEC (equivalent to AC-T in the US) seems to be the standard of care. Chemo has been shown to be more effective against high-grade cancers like TN (than ER+), so perhaps your onc is referring to some general population numbers rather than TN. You might try out cancermath.net  http://www.lifemath.net/cancer/breastcancer/therapy/index.php and plug in your own stats. Check out TNBC Foundation too for good info. Then have another discussion with your doc. 

  • 52dee
    52dee Member Posts: 11
    edited August 2012

    Hi Luah.Thank you for taking time to reply.My tumour was invasive but as it was only 1cm that is the reason I was given the option.I know only I can make the decision to go ahead with chemo but at this present moment my emotions are all over the place.Last time I was told I had to have chemo to survive,I went ahead but when your advised its your choice and they do not know whether it will benefit,it's a very hard decision to make.I wil look at the link you have sent for stats

  • BellaJean
    BellaJean Member Posts: 65
    edited August 2012

    Hi52Dee,

    Like Luah I am very reluctant to give advice so here is what I did: I was stage 1: 1.2 cm; no nodal involvement. My first MO told me what your MO said, that is it early, small, stage 1 so little benefit from chemo but my decision. She encouraged me to do chemo which I did not want.

    So, I had my case go to the Tumour Board were the multidisciplinary team did not advice chemo. Two different pieces of advice.  

    I changed my MO and went to at triple neg specialist who advices me to do FECX3 and then taxotereX3. I followed her advice. The worst for me were infusions 1 and 2 of the FEC. I had a pic line to protect my vains. Following chemo, I had rads.  

    I am delighted that I did chemo. At least I know that if I get reoccurance or in the short term die from this awful disease, it will not be because I did not do everything within reason to prevent a reoccurance.

    Don't know if this helps. It is an awful and scary journey, and I wish you as much ease as is possible as move through the different stages.  

  • Luah
    Luah Member Posts: 1,541
    edited August 2012

    52dee: Just wanted to add too that some of the ladies on here who had small tumours had TC for chemo, rather than FEC or AC. You might want to discuss that option with your doc - as you avoid the more toxic adriamyacin, but still get a taxane which most TN specialists agree is particularly effective against TN. There are some earlier threads here on small TN tumours and chemo, you may want to do a search to see the discussion.   

  • 52dee
    52dee Member Posts: 11
    edited August 2012

    Thank you BellaJean.Unfortunately I feel because this is my second occurrence I have not had much support from my oncologist or surgery team.Six weeks after my masectomy I am still in considerable pain and feel extremely weak.In fact I am unable to sleep properly and i believe that is the reason i feel so low.Two days ago I saw someone else from the plastic surgeon team and he told me I should have been massaging the areas I had surgery.No one had told me that earlier.Even the oncologist hasn't been that helpful.Please don't get me wrong I am really appreciate of all the treatment I have received and consider myself to be very lucky to be alive.

    Luah I will look at the earlier threads to see if there is any more info.I have my pre assessment on 15 th of August and chemo on 16th booked.I hope I can speak to someone regarding the options.

    Really appreciate all the advise given

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited August 2012

     Hello 52dee,

    I was sorry to read about all that you are going through and have been through.We are not supposed to give advice on these threads, but if I were you I think I would ask to have Taxotere(docetaxel) first. It is said to be very effective against TNBC.

    I was TNBC with a large tumour and I am now 7years and two months since diagnosis.

    You can get through this.

    With best wishes from a fellow Brit,

    Sylvia.

  • 52dee
    52dee Member Posts: 11
    edited August 2012

    Hi Sylvia

    Thank you for letting me know about Taxotere.I will definitely ask about this.To be honest In hindsight I wish I never went for the reconstruction as due to the discomfort(every person is different)I am unable to sleep or rest properly.Having had chemo before I know how much toil it takes on your body and reconstruction has not helped

    Once again thank you for your good wishes

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited August 2012

    Hello 52dee

    I am so sorry that you are having so much discomfort after your reconstruction. It probably would have been better to wait quite a while before reconstruction in order to let everything heal properly. However, we are all wiser with hindsight. I had decided before my treatment that I would not have reconstruction.

    I do hope it will start to heal, so that you can get some sleep and rest. If you decide on the chemo you need all your strength as you know, having been through it before.

    I started a thread nearly two years ago especially for TNBC patients in the UK. If you would like to come and join us please do. Just click on Calling all TNBC patients in the UK.

    If I can help in any way, please let me know.

    Thinking of you.

    Sylvia

  • celticmagick
    celticmagick Member Posts: 1
    edited August 2012

    Hi,

    I had been an occasional surfer of this site but reading your post I have had to join!!  I am brca1 similiar background to you. 56 now but 52 when diagnosed with trip neg basal multifocal and dcis that had broken through.  I had the surgery, but I was told that even though the tumours were small 14mm and 7mm and the dcis which was grade 3 28mm  that because of the aggressiveness I should have the double mastecomy as more than likely within 6 months it would be in the other breast.  I had already had the ovaries out when I was 36 because of ca125 tests that skyrocketted.  The Fec was highly recommended because those little tumours had already hit the blood stream and they wanted to make sure they had knocked them out to stop more tumours popping up in other places. I had a super onc who is doing research on brca mutations so I decided I didn't want to take any chances and did the fec.  And guess what?  I am still fine.  It is 4 years now and I am still here and fine.  I just had to tell you.  The fec was a bit hard but I had a port put in my chest so no probs with the veins and I had nulasta shots after chemo to keep me well.  It is a big decision and only you can make it but I just wanted to let you know that there is someone who had a great result.  And I am Australian but I am in Winchester UK having a nice relaxing time with my son and his wife who have immigrated to your country. Good luck with everything I wish you well and will be thinking of you

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited August 2012
    Hello 52dee,


    I hope things are not too bad with you. I was wondering whether you have decided what you will do about your chemotherapy treatment with August 16th fast approaching.

    Thinking of you.
    Sylvia

  • 52dee
    52dee Member Posts: 11
    edited August 2012

    Thank you celticmagic for your advise.After reading it I feel a bit more positive.

    Unfortunately Sylvia I have had really bad flu since Friday.Have rang my breast cancer nurse to ask her if I should still go ahead with chemo.Waiting for the callback.My body feels so weak.I am really finding this experience on a different level to my last one.Where can I find the positive energy(only I can do that)to tackle it head on

  • 52dee
    52dee Member Posts: 11
    edited October 2012

    I have now had 3 of my 6 sessions of Fec.My fourth one is due on the 25th of October.I have suffered the first week with terrible nausea and vomiting.After being prescribed Emend and Onedstrom, it has helped.Unfortunately this time my bones are really hurting

    that even during the night if I roll over I wake up each time as my shoulders hurt.I have considered not taking any more as I don,t think my body can take any more.I am going to discuss this with my oncologist on Wed but would appreciate anyone's advise.I really feel so low

  • Luah
    Luah Member Posts: 1,541
    edited October 2012

    52dee: Sorry to hear you'r ehaving such a hard time. Are you doing 6 sessions of FEC? Or are you switching to 3 sessions of taxotere - Fec(3)-D(3) is a common regimen, that's why I ask - and some women find taxotere to be much easier (and some find it worse). By all means, let your onc know all the SEs you are having - he/she should be able to help. 

  • 52dee
    52dee Member Posts: 11
    edited October 2012

    Hi Luah,yes I am having six sessions of FEC.As I have had lymph nodes removed from my right arm,they can use only my left arm for blood and chemo.That side is also so sore and painful.Is chemo similar to antibiotics,unless you have the full dose it doesn,t work.That is my question.Being ten years older from my last lot of chemo( 8 sessions of carboplatin and taxol) I only feel my body cannot take anymore.I really don,t want to sound negative as I feel most of you are so inspirational and give hope to people like me.I was lucky last time as I had support of my sisters.Unfortunately due to this awful illness they are no longer with me

  • 52dee
    52dee Member Posts: 11
    edited October 2012

    Thank you Luah,will discuss with onc.I just wanted to know if anyone knows unless I have the full six sessions of Fec,would it not be effective.By just having three has taken a lot out of me.Normally by my 3rd week I feel a lot stronger,unfortunately not this time

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,847
    edited October 2012

    Hello52dee,

    I was sorry to know that you are having such a bad time. Talk it over with your oncologist as soon as you can.You m ay need a bit of a rest before going on. You should be having blood tests to see if all is fine and well enough for you to continue.There should be medication to control nausea and vomiting.

    Wishing you well,

    Sylvia.

  • 52dee
    52dee Member Posts: 11
    edited October 2012

    Thanks Sylvia,I will speak to my oncologist tomorrow.I am normally a very positive person,just going through another low.Really appreciate all the advise I receive here

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