A new triple negative friend

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  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited March 2008

    It's been a while since I posted so I figured I should let you know what is going on with me.  After careful planning that involved 16 plans(!), my radiologist (who is also a family friend) determined that convetional treatment was more advantageous for me than IMRT. In his final plan, he told me that he could "catch" some of the lymph nodes (axilla and in the sternum) as "innocent by-standers" without exactly treating them since I had no node involvement based on the path report but never had fine needle biopsy of the axilla prior to starting the chemo or SNB for that matter (there was no clinical manifestation either).  So I've already done 15 treatments out of 34 (24 whole breast and 8 boost) but it is a trek for me, although the drive itself is beautiful since I go through rural areas (one hour each way).  On the other hand, I was ready to go two hours away to a major cancer center so I consider this a break and I'm at a place that I have confidence in my treatment plan.  So far so good with side effects except for fatigue that forces me to take a midday nap every day.

    --Christina 

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited May 2008

    I'm done with radiation!  Hurray!  I did develop a grade 2 toxicity after the 25 whole breast radiation (3 weeping blisters) but I was switched from biofine to compresses with Domeboro  (astrigent solution)  three times a day for 15 minutes and that did the trick.  I had some irritation of the nipple during the booster rads due to the location of the tumor but it is getting better (back to biofine three times a day). BTW, I found that in a clinical trial in France (stage III) that they found carandula (a cream made of marigold) to be much better (significantly better) than biofine and I told my rad oncologist about it but it was too late for me.  You may want to talk with your doctor about it before you start your radiation.

    In two weeks I start teaching for the summer session so that will keep me busy but I'll be checking the boards.  I want to thank all of you who helped me these trying eight months of my life with your postings.  In particular, I want to thank Sadie and Twink since they were the first respondents:-) who had also done neo-adjuvant chemo.  I learned a lot from you.  I need to reclaim my life at this point and I hope that we will all post good news from now on.  As Dr. Lisa Carey said in her on-line conference, chemo protocols tend to be very good for the first three years and if triple negatives' tough window is indeed the first three years, then we should all be having great optimismSmile

    With much appreciation,

    Christina 

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited May 2008

    Christina,

    How wonderful you have finished your treatments!!! What a perfect time of year to play and enjoy life.  It has been such a pleasure to read your posts and to follow your journey.

    Warmly,

    Sadie

  • guitarGrl
    guitarGrl Member Posts: 697
    edited May 2008

    I had a lumpectomy in January & am glad I did. When you read the surgery boards, it seems like most of the complications come from the plastic surgery side of the mastectomy surgeries.



    I was >1cm, with C cup sized breasts. The scar from the incision is only about an inch long & is fading. I still don't have full feeling on that side of my breast, and the nipple sort of points left now, but I'm still happy with the decision.



    The dx was trauma enough, I wasn't ready to have even more traumatic surgery. Before, all three of my doctors (surgeon, onc & radiation onc) stressed getting a lumpectomy rather than a mastectomy. I understand why many women are choosing the latter, but don't let that have an effect on your decision - choose what is right for you.



    susan

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited May 2008

    Thanks so much, Sadie. Indeed it is the perfect time for me. Out of my hibernation:-)



    Susan,



    I was C cup, too, and although I had an excellent cosmesis after surgery, I was told that the there will be some asymmetry a year after radiation and some shrinkage. Like you, I wasn't ready for another big trauma in my life and I hope that no matter what cosmetic changes I will be seeing in the future I'll be happy to live with them. I must admit, though, that till the last minute, I had my doubts but my surgeon said that the chemo was the part that I had done to make sure that it won't come back. Mastectomy wouldn't guarantee that so I went for lumpectomy. A lot of other factors affected my decision (my age, my complete clinical response to neo-adjuvant --I didn't know then that I would get coplete pathological response--the clinical indications that no lymph node was involved --I'll never know for sure, though--etc. The radiation wasn't that bad but it was a huge time commitment for me due to the distance so that's another factor for anybody to consider. Ultimately, it is up to you, though, to decide, as long as you are relatively content with your decision.



    Christina

  • HollyHopes
    HollyHopes Member Posts: 497
    edited May 2008

    Christina - so very happy for you. Sorry not to have been posting more, just lurking a bit these days.  Don't like to post unless I have something meaningful or upbeat to add and have been pretty down so have been quiet.  I also had lump/chemo and rads.  Noticeable shrinkage in affected breast and am wanting a bilateral reduction and lift.  Surgeon keeps telling me to wait and lose weight but I just keep gaining instead. 

  • twink
    twink Member Posts: 1,574
    edited May 2008

    Christina,

    I'm so glad to hear that you're ready to put these last 8 months behind you.  I'm in the process of moving a few thousand miles from my current location, kids, cats, dogs, even my hubby...so, I haven't been around much lately.  May you heal quickly.

    Twilah

  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited May 2008

    Hi HollyHopes,

    I thought I would just jump in here.  I had a breast reduction on one breast in October.  My radiated breast had a natural lift and my plastic surgeon said she didn't want to do anything to it because the tissue wouldn't heal well.

    We did surgery to match both breasts in size and shape. I am pleased with the results.  The only complication was having a pulmonary embolism which is quite frightening. 

    My doctors did tell me to wait until we knew how much my radiated breast was going to change.  I had one plastic surgeon who told me to go home and lose 25 pounds.  I was having a tummy tuck too.  The other one and the one I chose said she thought the surgery would motivate me to tone more and it has.

    Another thing that I will mention is that my oncologist said not to expect to lose weight the first year after treatment.  She said she even has firemen who work out all the time who find it hard to lose weight.

    One last comment-  Depression is very common after treatment ends.  The chemo therapy does effect neuro transmitters.  Also, after we have moved through treatment we have more time to consider how cancer impact our life.  It can be an anxious time.

    I am just writing on and on so I'll end by wishing you a Happy Mother's Day.

    Warmly.

    Sadie

  • jdash
    jdash Member Posts: 754
    edited May 2008

    i was triple negative stage  3 and have multiple lymph nodes affected  i had chemo immediately dose dense AC and the T and when they did the dbl mast and removed lymph nodes I had had a complete pathological response!! had i had surgery first i would have never known the chemo worked so well- my oncologist said he couldnt have asked for a better report

    i am confused as to why they wouldnt do chemo first on everyone?  then you can see how the chemo is working and adjust it if it isnt

    congrats on your complete response  thats fantastic!!

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited May 2008

    Hi to all and Happy Mother's Day for tomorrow!

    Thanks for sharing your experience with your plastic surgeons, Sadie.  I'll wait for a year and see how things shape up and how I am and then take it from there.

    And thanks for the wishes, Twink.  I hope the move goes well and that your new place also serves as a fresh beginning for you after the year you had. 

    Hi, jdash, thank you for the congratulations, and congratulations to you for the complete pathological response.  As for your comment why they don't do pre-operative as a matter of course, my understanding is that pre-operative chemo is rather complicated.  It seems to benefit women younger than 50-55 the most, according to the latest report (and there was a conjecture that it is because this is the age group that tends to have the triple negative) and even then, they said that there has to be a multidisciplinary team in place to have it done properly, so it is not as clear cut as one would hope. And of course the percentage of those getting pCR is not that high, unfortunately, but let's see how the recent trials that have added avastin will do.  Many surgeons don't recommend it unless the tumor is bigger than >2 cm (see also MD Anderson's guidelines) because the surgery after pre-operative chemo is trickier (harder to obtain clear margins because of the way the tumor shrinks unless one achieves pCR), although more and more women are requesting it to test the tumor in vivo.  And many surgeons will cite the statistics that there was no overall survival difference between the two arms of women doing pre- versus post-operative chemo... The thing that they don't admit unless you press them is that not all variables were controlled and not all women have the same biology so who's to say with certainty that there is no difference.  One oncologist told me that although they want to recommend  pre-operative, they "don't know what to do" with those women that don't respond very well because they are aware that they don't have a chemo-sensitive tumor.  Some people may argue though that they would rather know upfront that their chemo is not working so that they can have a chance to switch protocols.  Others may not want to know that. Ultimately, it is a decision that one has to reach after careful consideration of all the facts. 

    --Christina 

  • sofeemay
    sofeemay Member Posts: 33
    edited May 2008

    Hi! I also did non-adjv. therapy. Chemo first. After 6months of chemo..nothing worked so I had to have a mastectomy in Sept. o7. a few back I found out the I have lung mets. Sometimes if I had the mastectomy first would my cancer have had speard to my lungs??

    My tumor was 2.3cm and grew during chemo. Good luck with your treatment.

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited May 2008

    Dear sofeemay,



    I'm sorry to hear that the pre-operative chemo didn't work for you as well as one would hope. I'm wondering why they continued with the treatment if the tumor didn't respond with whatever protocol you were on (usually they can tell after the first 2-3 treatments) and why another protocol wasn't tried. But to try to answer your question, I don't know and I don't think anybody knows for sure... Sometimes a type of cancer may be very aggressive that may not respond to different chemos and that's why we have so many trials going on right now with all kinds of new drugs.



    I hope all goes well with your treatment now. It is imperative that you focus on your getting better and not on the past (although I know that this is easier said than done), but you need to try. Different women have different biology and although we may all be triple negative, not each one of us will respond to a particular treatment the same way. Your story though is instructive about the use of pre-operative treatment and how it may fail (it may fail after surgery as well) and that's why it needs to be closely monitored (which is the recommendation that the most recent article I read makes about its use).



    Best of luck,

    Christina

  • EyesOTex
    EyesOTex Member Posts: 194
    edited May 2008

    Dear sofeemay,

    I, too, am very sorry your chemo didn't work; how discouraging to go through six months of that and have no response.  I was wondering if you would mind sharing what treatments you have had.  I had Adriamiacin/Cytoxan/Taxotere the first time around and I've just started Cisplatin/Gemzar, one treatment a week for 2 weeks, skip a week, another treatment, rinse, repeat for 4 rounds.   It's taken me forever to read this thread and I hope everyone is doing well; I'm slowly trying to get back here after avoiding it because it was making me more anxious.  I'm not anxious any more, just sort of... well, I don't know what I am!

  • davitamorales
    davitamorales Member Posts: 11
    edited May 2008

    As I read these comments, It makes me believe that there is no sure  treatment for some of us Triple Neg.   I had surgery first, after one month I began chemo.  Four rounds every 21 days of A/C.   Last chemo was on Feb.28.th.   Now my left breast is hurting, I had a mammography and sonomamography and there is a .5 cm cyst ,it does not say that it is cancer, just that further evaluation should be done.   I am not going to see the doctor yet, I have started to drink a plant call Chaya to give it a try for one month.   I can't even think that I have to go through chemo again.  I just hope it goes away with the wind....

  • twink
    twink Member Posts: 1,574
    edited May 2008

    Davita,

    I hope it goes away with the wind too... if it does not, I hope it's a B9 little cyst of no consequence.

    Hugs.

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited June 2008

    Davita,

    Lets us know how things are going with you.  I, too, hope that it's a false alarm.

    --Christina 

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited June 2008

    Davita,

    Lets us know how things are going with you.  I, too, hope that it's a false alarm.

    --Christina 

  • cindymontgomery
    cindymontgomery Member Posts: 1
    edited June 2008

    My mom has the triple neg. Ibc, tumor  size 3.4 cm, her patholigist report also mentioned ki 67.  This is her 2nd round with bc, she had a masectomy 35 yrs ago before they knew much about bc.  My Mom doesn't have any idea of the implications or a triple neg. Ibc diagnosis.  I don't think she wants to know.  She is in a terrible living situation and I just want to whisk her away.  I just lost my 47 yr old sis to ovarian cancer a few months ago.  I supposed this puts me at high risk for BRAC I, heredatory bc. 

    I am debating whether or not to intervene with Mom.  Should I explain to her what she has?  Last time she had b. cancer she was back at work 1 week after the mascectomy an never looked back.  She is 73 and living with my abusive, drug addict sister who was giving Mom nonperscribed drugs during chemo.  After I left her house two weeks ago she had her 2nd presurgery chemo, Mom wound up hospitalized twice for dehidration and drug overdose (oncologist thought it was the lorizapan she perscribed for nausea)  Consequently, until the hospitalization Mom thought that this diagnosis would be a walk in the park.  She lives over 1000 miles from me and I am feeling helpless, concerned and somewhat angry.

    I really appreciate all the advise I've read about overcomming the side effects of chemo.

    Any suggestions.  My sister can't take care of herself & expects Mom to take care of her.  She also doesn't like family visiting and makes it even harder on Mom if anyone comes.

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited June 2008

    Dear Cindymontgomery,

    I'm sorry to hear about your mom's diagnosis and all the issues involved with your sister.  It may be best to talk to your mom about it if you think it will help the situation.  If you think it would be best that she doesn't know, then maybe you can try to be as encouraging and supportive as you can possibly be without making her feel too apprehensive.

    Good luck with handling this rather difficult situation.

    Best,

    Christina 

  • Negative3Grade3
    Negative3Grade3 Member Posts: 111
    edited June 2008

    Dear Cindymontgomery,

    I'm sorry to hear about your mom's diagnosis and all the issues involved with your sister.  It may be best to talk to your mom about it if you think it will help the situation.  If you think it would be best that she doesn't know, then maybe you can try to be as encouraging and supportive as you can possibly be without making her feel too apprehensive.

    Good luck with handling this rather difficult situation.

    Best,

    Christina 

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