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neoadjuvant chemotherapy and staging

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ReadingMama
ReadingMama Member Posts: 338

Hi, I received neoadjuvant chemo, or chemo before my surgery.  From my initial dx, my tumor size seemed to grow with every doctor I saw (saw 3 bs) and every test I took.  But the tumor was completely gone after the chemo.  So, my question, how do they stage me?  The staging on the initial biospy? or the largest size, which was on the MRI? My bs initially said IIa, then IIb, then IIIa. I also had a palpable node, which was biopsied and positive.  Will never know though how many other nodes might have been positive, the good news was none of the nodes removed during ALND were positive, so chemo zapped them all.

Then, where is a reliable website to find recurrance and survivor statistics on the different stages?

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Comments

  • fightinhrd123
    fightinhrd123 Member Posts: 21
    edited May 2011
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    I dont think they can stage you, i had the same thing happen - however, this is the best result you can get.  I did the neratnib trial and that Dr told me that due to my response i have a 98 percent chance of being cured.  THis is an onc that has written a couple of books on bc, so i liked his stats!!  On my report after surgery i was staged at stage 0, gives me  a little peace of mind

    Laura

  • ReadingMama
    ReadingMama Member Posts: 338
    edited May 2011
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    I'll have to ask the bs, but I don't see her for so long.  I know for database reporting purposes, they have to stage me and I think it will be IIIa, just wondering what other people's experiences were.

  • NannaBaby
    NannaBaby Member Posts: 23
    edited May 2011
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    I had neo chemo too.  They stage u before any treatment. So, whatever the largest the tumor(s) and spread seen on imaging results and palpable nodes.  I guess if ur tumor grew during neo chemo, u were restaged as it progressed???

    But, staging and statistics vary and generally shouldn't be relied on too much.  Don't "read" too much into studies and statistics. 

    Take Care

  • cmbear
    cmbear Member Posts: 674
    edited May 2011
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    I had the same issue. Asked my MO when I first started chemo and she said stage III because of my tumor size--same as you--never got a precise measurement for my tumor. (also one palpable node) A lot of it has do with WHY the gave you neo adjuvant therapy. For me, my tumor was so large they couldn't operate until they shrunk it down some. Fortunately, for me too, the chemo melted it all away. What was the reasoning for your neo-therapy?

    There are several websites that will give you probabilities, but each person has SOOO many different variables that effect their future that it is really all a crapshoot. I have been told anywhere from 60 to 80 to 89% chance of survival. I worried about it for a long time and then I eventually gave up on that. All I can do is  what I can to prevent it from coming back, and not stress about it. 

  • libraylil
    libraylil Member Posts: 325
    edited May 2011
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    hi all, I also had neoadjuvant chemo. Had ultrasound, MRI caliper measurement before. After the first Tx the MO told me By exam that the tumor was responding. Had a mammo and ultrasound right before lumpectomy. The BS told me it had shrunk "some" and that the one lymph node we knew was positive was "about the same". All of this had me confused and paranoid. evidently I wasn t asking the right questions. Anyway right before surgery the BS told me that neo the tumor doesn t always shrink like a balloon deflating but mine was more of a Swiss cheese death. The final pathology showed a 35 percent tumor cellularity which the MO said meant 65 percent of the cancerous cells in the tumor were dead. He did tell me he could not accurately stage it before surgery but would guess a II B. After pathology it was indeed a IIB. The 3 nodes with evidence of cancer were dead cells. The MO considered this an excellent response. I felt good knowing that the chemo started right away rather than waiting for surgery. Libraylil p

  • NannaBaby
    NannaBaby Member Posts: 23
    edited May 2011
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    I had neo chemo because the tumor was large and in contact with the chest muscle (with no evidence of invasion).  At surgery it still was in contact with the chest muscle, so they removed a thin layer of muscle. My cancer had more of a swiss cheese type of death too.  Good way to put it! 

    I had suspicious nodes in mri images too.  Biopsy was negative, but micro mets were still possible.  surgery path report states all nodes were clear :) So there is a chance that none of my nodes were cancerous.  But, because they were enlarged, they were considered to be positive.

  • libraylil
    libraylil Member Posts: 325
    edited May 2011
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    I too am trying not to obsess over staging. I think it is important to keep this board going to see our progress as I think neo adjuvant is sort of new. Also we can support new peeps who get the question "you mean you are having chemo first". After the bs explained to me that it meant we could start killing Klingons right away, rather than waiting for surgery, I knew this was what I wanted to do. When I saw the oncologist I had pretty much made up my mind. He concurred. Libraylil

  • Kay_G
    Kay_G Member Posts: 1,914
    edited May 2011
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    I feel the same way Libarylil.  I was diagnosed in early March.  Just finished AC two weeks ago.  Had my first taxol and herceptin yesterday.  Surgery is scheduled for July 27.  The thing that people ask me and I hate to answer the worst is why are you getting chemo first.  The second worst is what stage are you? 

    So it will be close to 4 weeks between my last taxol and surgery.  Did anyone take that long between chemo and surgery.  We had a vacation scheduled for the third week after which is why it is so long.  I am worried some cancer will break lose and travel some where and there will be no chemo to kill it.  What do you think?  Is this a legitimate concern?

  • MistyinPR
    MistyinPR Member Posts: 4
    edited May 2011
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    Kay-from-Philly

     I also had surgery on May 3 exactly 4 weeks after finishing chemo. The doctors said that your body needs to recover a bit from the chemo before you are ready for surgery. I just received my pathology report and all of the nodes were negative.

  • Kay_G
    Kay_G Member Posts: 1,914
    edited May 2011
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    Happy for you!  I am hoping for the same.  I had palpaple nodes, but they can't feel them any more, so my  hopes are high.  Did you do AC first and then taxol and herceptin?

  • ReadingMama
    ReadingMama Member Posts: 338
    edited May 2011
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    Thanks for all the replies. NannaBaby, just to clarify, my tumor size "grew" during the testing phase before chemo started i.e., my biopsy report said 2cm, my MRI said 5cm. But they said once the biopsy is done, blood can leak out and make the tumor bigger. Thank goodness, once I started chemo is all shrunk away.

    I had neo chemo b/c the tumor was large relative to my breast (b cup) and was very aggressive - chemo was the best option to start to kill it right away and to preserve my breast for a lump.

    Cindy - I soooo agree about being able to tell the chemo is working.  It was so much easier to take the side effects when I could literally feel the lump growing smaller and smaller! I guess I was NED at surgery also, never thought of it that waySmile, nothing at the lump site and nothing in the nodes!

    Kay - my surgery was also 4 weeks after my last Taxol.  I had the same worry, but they also said my body needed some time to heal from chemo before the surgery.  I had AC then Taxol and Herceptin.  I am on a 3 week Herceptin cycle, so I had 1 Herceptin only treatment the week before surgery.

  • libraylil
    libraylil Member Posts: 325
    edited May 2011
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    Kay the bs told me between 4-6 weeks. You will be feeling good by vacation time so enjoy it.libraylil

  • Amara
    Amara Member Posts: 3
    edited May 2011
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    Hello,

    Just wondering if anyone could advise how long could I wait before surgery (neoadjuvant treatment) . I finsh my chemo on May 20th and plan to travel back to Canada. Not sure of two things:

    1.  Max number of weeks that I can wait before surgery (as I don't know how soon I'll get an appointment in Canada)
    2. When is it safe to travel by air? After how many weeks of chemo ending?

    Thanks!

  • Randi64
    Randi64 Member Posts: 17
    edited May 2011
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    Amara,I had 20 weeks of neoadjuvant chemo,which worked very well for me, and 3 weeks later had BMX . I was told I could fly in those 3 weeks. I would make sure to check with your oncologist. I was also told max number of weeks is about 6. Good luck!

    I am a HUGE fan of neoadjuvant chemo as it is the only way to truly determine if the chemo you are on is working in your body. I am so grateful that my wonderful BS recommended this. I now forever know it worked. I had a pathological compete response! It gives you that extra piece of mind that is so needed!

  • Amara
    Amara Member Posts: 3
    edited May 2011
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    Thanks Randi64!!

  • Kay_G
    Kay_G Member Posts: 1,914
    edited May 2011
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    Thanks for information.  It is good to hear that others did the same course.  The surgeon was ready to schedule two weeks after my last Taxol.  Then my DH told her about the vacation.  I was thinking it was a bad move to not get it earlier, but you've eased my mind.  The BS did tell me that as well.  Thanks for the tip about keeping the Herceptin up weekly until surgery.  I will ask the onc about that.

    I am thrilled for all of you that neoadjuvant therapy worked out so well for all of you.  This is a great thread for all of us neoadjuvant gals.  I think it's the most encouraging thread I've read on here!

  • bak94
    bak94 Member Posts: 652
    edited May 2011
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    I agree, thank you for starting this thread! I am having neo because I have an internal mammary node positive(scary, huh?), but they don't think any auxillary nodes positive with all the scans I had (MRI, PET/ct and utrasound). I think that puts me in some kind of stage 3, not sure if it is a, b, or c, but I would like to think a! My doc hasn't told me a stage, and I asked him if I was stage 4 and he said there was no proof of that. What an answer! But I guess the internal mammary node doesn't make me stage 4. I have had one treatment of ac, he wants to do 4-6 ac, depending on if I can tolerate it (muga scan and ekg before every treatment) and a slow drip-24 hours overnight in hospital to minimize damage, and the 12 weekly taxol/carbo although I am trying to talk him in to abraxane. The tumor in my breast also was measured differently with all the scans, mammo-didn't show up, ultrasound it was 2.6cm mri it was under 2 cm. I also have dcis, so who knows. Happy to here of all the shrinking tumors! It gives me hope, although I am triple negative and don't get to have the herceptin, which sounds like a wonder drug for all you her2 pos gals! Sorry to ramble......

  • toni30
    toni30 Member Posts: 68
    edited May 2011
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    Kay - I am in Philly too. Had neo, and surgery approx. 6 weeks later. I was really tired, and because of a pre-surgery test, it was delayed a week, but the docs were not concerned about one week. I was glad I waited, the extra week made me feel better.  Good luck!

  • libraylil
    libraylil Member Posts: 325
    edited May 2011
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    Bkj66 Keep us posted as you under go chemo. Don t be afraid of TC. Remember your goal is to annihilate any cells that might have wandered away. The tumor shrinkage my mo told me is the "canary in the coal mine". A gauge of how well the chemo is working. He kept telling me "we are not really treating the breast". My mo is so hot also, I love him. You will do great, get the party started

    Lib ray lil

  • bak94
    bak94 Member Posts: 652
    edited May 2011
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    Just bumping this thread, don't want to lose it! I just had my 2nd ac. Feeling kinda crappy, oh well, as long as it is doing its job, I will put up with feeling crappy! Scalp hurts, tried to shave hair down to an inch, but got tired and I have a strange haircut! Hubby will fix it tonight.

  • mrsnjband
    mrsnjband Member Posts: 64
    edited May 2011
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    I had neoadjuvant chemo because I had IBC Triple-Neg. It too melted away the tumor that was very small.  When I had my BMX & ANLD they found 5 positive nodes (don't know how many taken).  I'm sure the chemo "killed" the cancer but they can still diagnosis that some  nodes had cancer.  Hope you get the answers you are seeking. NJ

  • ReadingMama
    ReadingMama Member Posts: 338
    edited May 2011
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    So, should we post pros and cons of neochemo for anyone considering it?  I'll start with ones I can think of:

    Pros

    1. Can feel tumor melting away so know that the your specific chemo is working.
    2. Easier to take (mentally) chemo side effects when tumor is melting away and you know its working.
    3. No delay in treating whole body for any stray cells that may have left the breast.  Esp. for those of us who have aggressive cancer and/or positive nodes. Start killing right away!
    4. With tumor gone/shrunk, better cosmetic result for breast conservation, for those that want it.
    5. ? More time to consider surgery options, mx vs. lump and recon options?

    Cons (at least as I understand them, would be interested to see if anyone was told otherwise)

    1. Standard is to do ALND and not SNB with neo.  I was in trial to see if this can be changed, but this is my understanding.  I had both, meaning I had the dye, they took out the SNBs (2) and then did the ALND. However, my surgeon was purposely not aggressive and only took out 5 more nodes.  But with ALND comes higher risk of LE.
    2. Have to have standard 6+ weeks radiation if have lump, i.e. not a candidate for Mammosite.
    3. Less precise staging as no surgical staging.
    4. Others?
  • bak94
    bak94 Member Posts: 652
    edited May 2011
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    Nice list. I was not aware of the ALND instead of SNB, but it makes sense.

  • Randi64
    Randi64 Member Posts: 17
    edited May 2011
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    Hi, I had neo and only SNB prior to chemo and had 1positive node. At bmx no additional nodes taken, as ALND is no longer necessarily "standard of care". Based on my stats, there was very little chance of further nodes being positive, so I opted against it with the full support of my team

  • MaiTai
    MaiTai Member Posts: 65
    edited May 2011
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    Hi All,

    I felt a little on the outside until this thread.

    I too had neo-chemo (4 AC + 12 TAXOL + year of herceptin).

    I had the surgery 3-4 weeks after ending chemo and was still on herceptin.

    BMX found complete pathological response. There was only a tiny spot of DCIS left.

    When I get anxious it is comforting to know that I am regarded as CPR.

    I wish I had done the sentinel operation before the chemo though.

    I saw 2 oncs. One suggested I did the sentinel op. first, then chemo and then the operation.

    The second onc + the BS did not recommend two surgical procedures.

    I opted to agree. Now I wish I hadn't. I think it might have given me more peace to know I was node negative even before the chemo. And if I wasn't I would have known I needed radiation. Which I didn't get because after chemo I was NED.

    Well, nothing to do now! It is a loopCool

    I choose to focus on the positive side of the list and I have another con. to add to the list:

    If your tumor does not respond well to the chemo, it takes more time until it is out of your body.

    It is also a risk.

  • libraylil
    libraylil Member Posts: 325
    edited May 2011
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    MaiTai,  I did not have SNB before neoadjuvant either.  Went for my MRI and the radiation dr thought one lymph node in the axilla looked a little "plump" so off I went for another needle biopsy.  We knew that at least one was positive from the get go.  After surgery 3 sentinel nodes were positive, the axilla, though removed were negative.  The positive nodes were dead cancer cells so the chemo wreaked havoc on the little monsters.  I feel like neo is the way to go.  You know you had a chemo that was working good against the little klingons.  I was obssessed with staging at the beginning, but now I just think the numbers don't mean a lot.  congratulations on your great results.  libraylil

  • kathleen1966
    kathleen1966 Member Posts: 68
    edited May 2011
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    Reading Mama, From the stats you have given, you are either stage IIa or IIb.  If your tumor was larger than 2cm than you are IIb.  You don't have enough nodes for IIIA (stage III starts at 4 nodes).  And you had a complete response to chemo. Congratulations!

  • ReadingMama
    ReadingMama Member Posts: 338
    edited May 2011
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    Randi - interesting, I didn't know you could have SNB before chemo.  I only had a needle biopsy of the enlarged node.  I should add that I was thinking last night that I don't know if an ALND is still standard if you have no evidence of lymph node involvement prior to chemo?  Of this, I am not sure, my lypmh node was definately positive.

    I also don't know if you have neo chemo and your tumor is not responding, does your MO change the chemo treatments, i.e. try different drugs?  I wonder...

    Kathleen - my bs said IIIa, I don't see her again until August so I have to wait until then to find out more. I've never read about number of positive nodes for staging, only if nodes are "stuck together", but thanks I'll ask her that,

    Also wanted to mention on the "pro" list, that if you looked at my breasts, you can't even tell which had BC.  My surgeon did such a great job, you can't even see the scar and since there was no tumor left, she didn't have to take too much out. You can see the ALND scar and the port scar still...

  • mrsnjband
    mrsnjband Member Posts: 64
    edited May 2011
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    Another reason I had neo-chemo is because of the aggressive nature of IBC.  IBC also affects the skin & they want to kill the cancer so that the incision will heal better after surgery. NJ

  • ReadingMama
    ReadingMama Member Posts: 338
    edited May 2011
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    Cindy - that makes sense.  Now that you mention it, my bs had originally talked about maybe doing some chemo, then surgery, then more chemo, but that didn't happen.  That's probably what she was talking about, if I wasn't responding.

    Also, about cosmetic results, I realized after I posted yesterday, that obviously tumor site has something to do with it.  My tumor was such that the scar was right on the edge of the aerola so after a few weeks, it just blended in and can't be seen anymore. Would think even if your tumor shrunk away to nothing like mine, you might have a more visible scar if the tumor was farther away from the nipple.