Had surgery before chemo: need encouragement

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Luvmydobies
Luvmydobies Member Posts: 766
edited July 2014 in Triple-Negative Breast Cancer

I know nobody here can tell me if I'll have a recurrence but I'm nervous thinking I chose the wrong path after diagnosis. My surgeon didn't tell me how serious TNBC is so I chose to have a double mastectomy before chemo. I've read that a lot of you had chemo first which now I know you can tell how well your tumor responded. I'll never know what kind of response I had since I had surgery first. The only thing I know is that my tumor was 3.5 cm, my sentinel node biopsy was negative and the BRCA test was negative. I had DD A/C then 12 rounds of weekly Abraxane, no rads because the RO said I didn't need it because the nodes were clear. I know I can't go back, but did I make the wrong choice?? I finished treatments last August but the fear of this beast coming back is always with me. Ugh... I just wish I could forget everything I've read about on the Internet about TN and breast cancer in general, such as women under 40 having a poorer prognosis, since I was 36 at diagnosis, and TNBC having higher recurrence rates. Ugh... Any advice and comfort is welcome. Thanks!

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  • Morwenna
    Morwenna Member Posts: 1,063
    edited June 2014

    You know, I'm in the same situation. I don't have any answers except to say that on some level at some point you just have to let your mind move on, and not dwell on it so much.

    Yes, some triple negative cancers are not responsive to chemotherapy, but most are, and you (and I) did what we did. There's no changing that, so pointless to beat ourselves up over it. My surgeon kind of mentioned neoadjuvant treatment, but she was keen to get on and operate, and so was I!! Climbing the walls at the time, I remember!!

    I am just trying to put it behind me and enjoy life. I've joined a team of survivor dragon boaters, which is fun, good exercise, and inspirational as well. Some of these ladies have been doing this for ten years or more ...... and some of them are stage IV! I sing, I work fulltime, I enjoy my family. Keep busy.

    It would be nice to be able to forget about BC, even just for a day, a week, but I have a mammogram next week, doctors and hospital appointments for the next three weeks, reconstruction tentatively booked for December.

    I'm sure it gradually gets easier, and when I get to 5 years, I believe it'll be a mental "finishing line" (yes I know it can come back after that, so don't anyone tell me!!!) ;)

    Hugs to you. xxx

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited June 2014

    Thanks Morwenna!

    HUGS to you too!!

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  • Luah
    Luah Member Posts: 1,541
    edited June 2014

    Luv, try not to worry... there are thousands and thousands of TN women who had surgery first (I did), and are leading healthy lives after.  Chemo first is becoming more common now for a variety of reasons (shrinking a large tumour to get clearer margins at surgery, seeing whether or not chemo is working), but I'm unaware of any large-scale studies showing it to be definitively more effective.   

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited June 2014

    Thanks for the response Luah!

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  • jenjenl
    jenjenl Member Posts: 948
    edited June 2014

    Oh boy can I relate.  there are Pro's and Con's to each approach.  Let's make a list and I'm no pro but this is what I ended up having to do to push past the mental concerns :) 

    Pro to doing chemo 1st:

    - systemic treatment quicker

    -evidence of chemo sucess

    - Shrinking tumor for surgery

    Cons to doing chemo 1st:

    - if chemo isn't working continue with trial and error while tumor grows

    - lack of evidence if nodes were positive (unless you don't have a complete response)

    I did surgery (UMX), chemo (started 5 weeks after mx), surgery (hyst), rads (3 weeks post chemo for 6.5 weeks), surgery (recon stage 1), surgery (recon stage 2), surgery (recon stage 3)...LOL. I struggled for about a year to accept that I made the best decision based on the information i knew and understood at the time of dx.  Some days I regret it and other days I don't.  I find the more time I spend on BCO the more I think about the decisions I made....so I just pop on here and there. 

    Here for you. xo

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  • Kayrem
    Kayrem Member Posts: 164
    edited June 2014

    Hi- I did surgery first than chemo and rads.  No one offered me neo-adjuvant chemo, but if they had, I do not know what I would have done. I probably would have had the surgery first still.  II could see my lump and although it was distressing to see my body surgically changed, it was still better for me than seeing the evidence of my tumour. There was a level of comfort for me in knowing that all physical evidence of it had been removed.

    In the end it is a crap shoot.  What works for some, doesn't for others.  I had stage 3 cancer 3 years ago. In the past 3 years I have had a pretty good life. I have also seen at least 3 people younger than me die of non cancer related causes. I used to stress ALOT, still do a bit. But you just keep going and soon you realize you passed your 3 year mark and did not notice. I am hoping the same happens for mine and everyone else's 6 year mark.  Take care.

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  • pjc71
    pjc71 Member Posts: 13
    edited June 2014

    just came to visit my adult daughter to tell her in person about the bc, since we live 2,000 miles apart..found the book Silver Linings really helpful "hope for the best, plan for the worst"....i'm supposed to have surgery first, radiation and chemo later...have had bone scan and chest x-ray and will have abdominal ultrasound on june 27. surgery on july 9 if all clear, first 2 are...tumor is 1.4 cm, grade 3 and i am wondering about asking for chemo before...i am 71 but feel so much younger but i guess i'm lucky that if i had to have this, older is better...but would love to be around for when my daughter has kids,  she is 32...

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  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited June 2014

    Thanks again to those of you who responded. I am just going to have to trust God and my doctors and hope for the best. As all of you know that's easier said than done though! pjc, I have the book Silver Linings. I haven't finished it. Sometimes I need a break from anything cancer related even if it is positive. I am still angry, and even jealous I guess that I got one of the most aggressive types. I know cancer sucks no matter what kind it is but it's so hard to handle sometimes, thinking I had one of the most aggressive types! 

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  • 2timer
    2timer Member Posts: 590
    edited June 2014

    I'm told that while triple negative might be more aggressive, the recurrence rates are very low after 5 years.  And not having to worry about recurrence after any amount of time is a huge deal for someone who's had bc.  ER+ recurrence rates drop over time too but nothing like triple negative bc.  It all evens out in the end really. 

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  • JAN69
    JAN69 Member Posts: 947
    edited June 2014

    Luv - I'm another TNBC who had surgery first.  I wasn't given a choice, but I think I would do it that way again, if given the choice.  I'm fine but still worry, of course.  Good luck to you as you make some difficult decisions.  Jan

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  • CanuckMom
    CanuckMom Member Posts: 173
    edited June 2014

    hey luvmydobies, I think surgery first was best for you in your case.  If you had chosen chemo first and it was not responsive to chemo then it may have had a chance to spread to your lymph nodes, etc.  I think you will be fine...I did things the same way you did.  I am happy with my decision (my breast surgeon is very well known, has written books on bc and I trust her completely).  I will do my best to prevent a recurrance with exercise and diet, but will try not to let fear get the best of me.  Don't let this ruin the rest of your life...enjoy each precious moment.  Hugs!

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  • SweetMaggie
    SweetMaggie Member Posts: 18
    edited June 2014

    Thought I would chime in since this has been on my mind the last few days.  I was finally diagnosed in May after a two month journey of biopsies of every which way. I ended up at Johns Hopkins and trust my medical team completely.  During the consultation about what the treatment plan would be, I asked about chemo first (I had done just a bit of reading and didn't know much about that option.)  But he said without hesitation, no.  I also had a 3.5 cm very aggressive tumor, and I was ready to have the surgery (I only had a single mastectomy and haven't been BRAC tested yet, have that scheduled in Aug.)  I'll start chemo in mid-Jul (am only 3 weeks out from surgery.)  I think my doctor is well regarded and I think he made the best recommendation based on my situation.  Since I also have clear nodes, my thought is that if I waited and one course of chemo didn't work, and then we moved on to the next, it's likely my tumor would have spread much further.  But being very new to this whole concept of  TNBC is indeed very challenging (shoot, just getting diagnosed with BC was really hard.)  But we know that MOST TNBC women survive, so that's what I'm focusing on.  Right now I feel like I am cancer free, and that the chemo will just be the icing on the cake!  Hugs to all and hope to hear lots of positive stories on this forum.

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  • belleb
    belleb Member Posts: 170
    edited July 2014

    I also had surgery first - when I first was told I needed a biopsy I was terrified of having it done awake so they did an excisional biopsy and removed what they thought was the whole tumor. Unfortunately, I did not get clear margins with that surgery and required another surgery to get clear margins and also to sample lymph nodes. I have now done 4 A/C and 12 weekly Taxols and in 3 weeks will have a third surgery, this time a BMX. I was told that with TN, it's better to get into chemo sooner rather than later, thus why I didn't just have the mastectomy in the first place. The recovery would have been longer and they didn't want me to wait. I feel good about having the surgery first, and I think the odds are in our favor :)

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