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Response to neoadjuvant chemo?

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  • kicks
    kicks Member Posts: 319
    edited November 2017
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    It was never expected that my neoadjuvant chemp (DD A/C) wpuld get a complete response. It was to get it to form a 'lump with margins' (IBC forms as a 'nest' or 'bands') so Surgeon had a chance of getting it out. (It did). UMX was 2 weeks after last A/C and then 3 weeks later I started 12 weekly Taxol adjuvant to 'mop up' any cell that had been'hiding'. It worked - been 8 yrs and still NED. Though at DX, none of my Drs had expected me to make it to a year (Fooled them Winking!)

    I


  • stephincanada
    stephincanada Member Posts: 29
    edited February 2018
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    Hi Emily,

    I also struggle with this decision. I have only had a lumpectomy to date, and must wait for the radiation damage heal before I can have a mastectomy. (My team didn't think I should delay radiation to have a mastectomy when it won't improve survival odds for this episode of breast cancer.) I am fairly certain that I am going to do the mastectomy next year, although I really, really don't want to. However, I am somewhat traumatized by the death of my best friend due to a synovial sarcoma two years before my diagnosis (I was very involved in her care). By the time she passed, she had an arm, a lung, her diaphragm and two ribs removed. I keep thinking of what she endured to stay alive, and remind myself that these are just boobs that serve no useful purpose. I have a strong family history of breast cancer (my mom had it twice), and, in my heart, I feel that breast cancer is not done with me just yet (I am 46).

  • ajbclan
    ajbclan Member Posts: 396
    edited November 2017
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    SimplySammi- that's interesting, I'd be curious how many are using that as well- thanks for sharing!

    Emily- I had 4 tumors ("a mass"), KI67 was 90%, very aggressive. I only had 1 ultrasound 1/2 way through chemo and 3 of the 4 showed some shrinkage. Like everyone I wasn't expecting much I just wanted to start killing the cancer before it spread more. I knew before everything that I was doing a double mastectomy as my mom had BC twice and also colon cancer. I did do genetic counseling, wasn't positive for BRCA genes, but I have a "variance" on PALB2 (which we still do not know what this means lol). I went for the whole she-bang as I just didn't want to have to worry as much. I wish I had kept my mom's files as she had a mastectomy the first time, 2nd cancer the surgeon said lumpectomy which she struggled with but agreed and then went to MO and he said no- your going back for mastectomy, so she had an additional surgery. This was years and years ago, but I think that weighed on my decision as well.

    I agree with what everyone says- that from what I read the survival rate seems to be the same from the studies. We all have to do what's best for us....go with your gut. Wishing you the best.

  • stephaniebc
    stephaniebc Member Posts: 21
    edited November 2017
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    hi emily, i think my stats are similar to yours: triple positive, grade 3, large tumor but no node involvement. my surgeon recommended a lumpectomy as i do not have any genetic predisposition to breast cancer, and i couldn't be happier with the outcome. it healed quickly and easily and 3 months later i can barely see the scar already. rads were easy.

  • emily_mh
    emily_mh Member Posts: 53
    edited November 2017
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    thank you everyone for your posts. It really helps me to read about all of your choices. I need to have faith in my choice. It's just so difficult.

  • emily_mh
    emily_mh Member Posts: 53
    edited November 2017
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    Stephincanada, I keep thinking about your post. I really really don't want a mastectomy either. But I also would get a mastectomy if it in anyway increased my chance of living. I'm trying to find any information about surgery preventing metastasis - has anyone ever seen a study on this?

  • reflect
    reflect Member Posts: 280
    edited November 2017
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    Hi emily, I am pretty certain surgery does not prevent mets. If it did we'd all be having mx. Read here about recurrent vs metastatic.

    A mastectomy would reduce (but not eliminate) your chances of recurrent cancer. I don't believe it changes your odds re: mets.

    Good luck with your decision.

  • emily_mh
    emily_mh Member Posts: 53
    edited November 2017
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    reflect, that's a really good point. Thank you. I will check out the link you posted

  • ajbclan
    ajbclan Member Posts: 396
    edited November 2017
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    One thing that I think folks don't realize as well with MX or BMX is they can't get every last bit of breast tissue. So even though I had a BMX, there's still residual tissue. Just another thought!

  • ihavebreastcancer
    ihavebreastcancer Member Posts: 5
    edited November 2017
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    what about using xeloda? A recent study published in NEJM revealing that patients with incomplete response to neoadjuvant chemo benefit from using xeloda/capecitabine. Anybody with any experience on this treatment

  • lexica
    lexica Member Posts: 138
    edited November 2017
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    Hi, all. I've been following this thread for a while and finally decided to post. I appreciate all of the information and posts! Just finished my last Taxol a week ago and will be heading to surgery (BMX) on December 19. Getting my post-surgery path report has been almost the only thing on my mind lately!

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited November 2017
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    Hi, Lexica, congrats on finishing your Taxol!

    Just so you're aware, it's unusual for those of us with ER+ tumors to have complete pathological response (no detectable cancer cells in the removed breast), so I don't want you to be dismayed if your path report isn't what you're hoping for. Probably because I'd been bit in the fanny so frequently with bad news of my breast cancer, before my mx I was very much hoping for a complete response, but nope. There were still cancer cells in my breast.

    However, I had great margins and the cancer cells were now in a jar on a shelf somewhere, and off my own chest. I sincerely hope your path report has happy news for you, but if it's not 100% spectacular, remember there are lots and lots of us who were in the same boat and are living life with no evidence of cancer.

    Gentle hugs!

  • traveltext
    traveltext Member Posts: 1,051
    edited November 2017
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    Adding to sbelizibeth's points, I'd add that radiation can be regarded as further "insurance" against stray cancer cells. Also, those undergoing adjuvant treatment don't get to find out if chemo works at all, since they've started with surgery. For me, no CPR but still NED.



  • meg2016
    meg2016 Member Posts: 188
    edited November 2017
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    Lexica- hoping your surgery goes smoothly! I remember waking up and asking almost immediately when they thought my pathology would be back. Then I was flying home (I had my surgery out of town) and they called while I was on the plane and left a voicemail to call back. Then I called and left a message, then waited a few hours for their callback. Agggh! Try to stress less than I did. :) Fingers crossed for you that your results are great!

  • lexica
    lexica Member Posts: 138
    edited November 2017
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    Thanks, all for the kind words! The ladies (and gents) on this forum are so wonderful. I know to not expect CPR - my tumor was over 10 cm and now I cannot even tell it is there, so I am hoping for at least a good response - or any kind of good news, really! Meg2016 - that is stressful! The waiting, ugh!

  • beauz
    beauz Member Posts: 113
    edited December 2017
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    Hi, all. I have followed this thread for a while. I know I shouldn't expect CPR. After my chemo and before my surgery last Tuesday, my tumor was still palpable and attached to the chest wall. I will get a written postsurgery pathology report next Monday. But i saw my surgeon this morning and he told me about the initial pathology results. There are still a lot of active cancer in the breast tissue with 2 or 3 positive nodes. From the pathology report he can't say for sure I have clear margin, but he cut off as much as he could. He is not sure that radiation will kill the remaining residues. My tumor hasn't responded to chemo as well as we hoped. I will have to wait until my next appointment with my oncologist in early January for further treatment plan. Am I the only one with this messy pathology result?

  • traveltext
    traveltext Member Posts: 1,051
    edited December 2017
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    beauz, I'm wondering why you didn't have a mastectomy with your tumor size and stage. Perhaps ask your onc this.


  • meg2016
    meg2016 Member Posts: 188
    edited December 2017
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    beauz- my tumor was also extremely close to my chest wall. I had a mastectomy and they could determine that they had clear margins. My surgeon didn't give me an option of a lumpectomy, though. She said possibly chemo would make it possible and it didn't due to primarily the one near my chest wall, but I had multiple tumors located not super-close together so lumpectomy wasn't realistic. I did still have node involvement as well.

  • mkn86
    mkn86 Member Posts: 129
    edited December 2017
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    hi meg, i'm sorry to hear about your histopathology. i'm still 1/3 of the way through with taxol and Carboplatin for neo adjuvant chemo. I'm hoping for a pcr too but then strange things are happening. if it makes you feel better, i feel the tumor shrink but the liquid takes over. So physical inspection doesn't seem like the tumor is shrinking. And some days it feels sore and heavy especially during my period (one more strange thing-- my period hasn't stopped all through EC and current chemo)

    but i'm still hoping for the best bec i will meet the surgeon soon and got an ultrasound and asked the technician to get images to determine if the fluid is another cyst different from my tumor. Likely that my MO and surgeon will discuss options

  • beauz
    beauz Member Posts: 113
    edited December 2017
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    Thank you for your feedback.

    Traveltext- my oncologist and surgeon have communicated with each other about my case. It would not be surgeon's decision only. I asked about mastectomy before surgery. He said it will not make much difference because I still need radiation anyway. My gut feeling is that my tumor located on the edge of the breast close to underarm and seemed to have well defined boundary. It's not how wide area the surgeon can take out, but how deep he can. I don't know if mastectomy can go deeper towards the chest. With these reasons, I agreed with lumpectomy. The surgeon already took out part of chest wall muscle. Even after the surgery, he still said he doesn't think mastectomy would help much. It's the chest wall part that I think may not have clear margins. My oncologist told me my tumor was locally advanced.

  • beauz
    beauz Member Posts: 113
    edited December 2017
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    Thank you for your feedback.

    Traveltext- my oncologist and surgeon have communicated with each other about my case. It would not be surgeon's decision only. I asked about mastectomy before surgery. He said it will not make much difference because I still need radiation anyway. My gut feeling is that my tumor located on the edge of the breast close to underarm and seemed to have well defined boundary. It's not how wide area the surgeon can take out, but how deep he can. I don't know if mastectomy can go deeper towards the chest. With these reasons, I agreed with lumpectomy. The surgeon already took out part of chest wall muscle. Even after the surgery, he still said he doesn't think mastectomy would help much. It's the chest wall part that I think may not have clear margins. My oncologist told me my tumor was locally advanced.

  • traveltext
    traveltext Member Posts: 1,051
    edited December 2017
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    thanks for the explanation beauz. It does seem logical to have a lumpectomy when the tumor is near the underarm. I, too, had a lot of muscle removed and was told that radiation would "mop up" stray cells. So far, so good, and I hope the rads work for you too.



  • beauz
    beauz Member Posts: 113
    edited December 2017
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    Traveltex- I wish my surgeon would say the same thing. But instead he said he was not sure if the radiation would mop up the residues. He even suggested more chemo! Sounds really bad. But anyway I will wait till Monday to get the written report.

  • traveltext
    traveltext Member Posts: 1,051
    edited December 2017
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    beauz, where are you being treated?


  • beauz
    beauz Member Posts: 113
    edited December 2017
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    Traveltext- In my post surgery pathology report, it says "The deep muscle is extensively involved by directly invasive carcinoma and lymphovascular invasion." So no clear margins here. 3/15 nodes positive. The cancer mass is still 54mm. So the original mass was either much bigger or chemo has not worked much at all. My surgeon doesn't think mastectomy would make much difference. He suggested more chemo in addition to radiation and hormone treatment. I will see my MO on Monday about further treatments options. One more weird thing, the excised tumor is "invasive carcinoma of mixed type. Mixed of no special type(60%) and micropapillary type(40%), associated with high grad duct carcinoma in-situ of solid and cribriform type." I guess this will not change my treatment options much.

  • traveltext
    traveltext Member Posts: 1,051
    edited December 2017
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    OK, keep us posted once you get your treatment options. Are you happy with your MO?


  • Faithonfire
    Faithonfire Member Posts: 26
    edited December 2017
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    Hi everyone I have some great news to share today!

    I was diagnosed in June with the same very nasty estrogen positive her2 negative braca 2 invasive ductal carcinoma that has plagued my mothers family for generations.

    I was the one that made the diagnosis official for my mother (who had identical type cancer stage 2b 3 years ago!!) and I was a stage 3c when my general physician found cancer!! so NOW insurance company will pay for the rest of our relatives to get their tests as soon as possible to track our unidentified mutation of braca 2.

    They can't tell us what it is let alone what it does so no clue what it means to the bigger picture of genetics in general or our specific family.

    I had full palatable mass reduction on all 4 tumors but a 4.5 cm tumor in my armpit that started out the size of a golf ball, only the tiny flat pin can be felt now where it was. Lymphs are a little harder to tell but I was supposed to loose 5 and it may be less now but won't know until after surgery and reconstruction january 9.

    I had a phenomenal response to the first set of 4 more aggressive chemo with the nuclear push every 2 weeks. My numbers all looked like I was not on treatment at all until The weekly treatments of taxol really wiped the floor with me by about the 5th treatment on, and side effects were SO much worse than first kind that I begged them to switch back!

    That was most surprising to my oncology team that all my numbers looked so great but I was feeling so awful I was ready to quit treatments to run away and hide!

    I also have had ptsd for over a decade so I'm a little harder to treat when I am very hurt or sick so we had a therapist ready to see me before and during chemo to help everyone on my teams understand my special needs during treatments.

    I could never have made it through that without my mom by my side with the same team of doctors that cured her!

    The one thing that surprised us all the most was the fact that the same cancer that hit my mom in her late 60s struck me at 41! The part that started turning heads is that 2 other cousin branches of moms side had 3 similar active cases NOW ages 40-51!

    People are starting to ask where we went to the beach most often as a family and the implications of that in my state are too disturbing to deal with right now but nice to see that it is under investigation finally!

    I was so blessed to find one of the top centers in the country for the type of cancer we have, and they got me through diagnostics and started treatments in record time which kept me from becoming a stage 4 in a matter of weeks!

    My doctor was on the phone with me in less than an hour after my test to tell me it was all still encapsulated and not in any bones so we were both sincerely happy at the words it's ONLY stage 3 breast cancer! I hope getting tested early will spare my teenage daughters that experience.

    Since I am a boba fide mutant I don't get to do any kind of trials for chemo but I am doing skin saving nipple saving double mastectomy... they've got an option to bank nipples by my c-section under belly fat for second surgery if tissue is viable!

    If not they can make replacements from other skin anywhere I can spare it! Wish me luck everyone and I will be back to let you know how it went!

    Happy holidays and best wishes and comfort to all of you for helping me to be brave enough to talk about my journey

  • legomaster225
    legomaster225 Member Posts: 356
    edited December 2017
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    Wow, Faithonfire, I can read the happiness in your post! I'm happy for the great response you have had to the chemo! Having the genetic information for your daughters (and any current or future relatives) is pricesless. Even if there are not sure exactly what to do with it yet it is still great news. The nipple procedure is pretty interesting too! Best of luck to you.Heart

  • beauz
    beauz Member Posts: 113
    edited December 2017
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    Traveltext- my appointment with MO had been delayed for more than a week. Met with my MO this morning. He has been busy consulting other oncologists around country about my case and discussed my case in a multidisciplinary meeting. He said the treatment for invasive micropapillary carcinoma is the same as that of IDC. He said I can have standard treatment which is radiation followed by hormone therapy, or I can start oral chemo Xeloda next week and then radiation followed by hormone therapy. I happily accept the chemo option. But I can't start chemo next week because we already planned two weeks holiday. He is okay that I start chemo on 9th of January, which is still within the 8 week optimal period after surgery. I forgot to ask how long is the chemo course and I don't care about it now. I feel relieved and I can enjoy the holiday from tomorrow.

    Best wishes to all.

  • traveltext
    traveltext Member Posts: 1,051
    edited December 2017
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    Beauz, that sounds like an excellent plan for your extra treatment. Certainly Xeloda is a very effective drug. Your MO really has done his research well and it's great that you can fit your holiday in beforehand. Savor it and keep us posted when your treatment gets going again.