Lump growth after neo-adjuvant chemo and before surgery?

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JNS
JNS Member Posts: 24

I tried this thread in the surgery forum but no luck.  Maybe this is a better place to try? :)

For you ladies who had neo-adjuvant chemo, did any of you have your tumor start growing again while you were waiting for surgery? I had my last Taxotere/Herceptin infusion on March 9 and I'm scheduled for a lumpectomy on April 11. Around March 25, I noticed a bump "forming" on the lump and now that it's April, there's no denying that something is growing. My husband tries to comfort me by saying that it could be scar tissue forming, but I just don't buy it. So I'm just wondering if anybody else experienced this and did it affect your surgical outcome? Thanks so much in advance! Your wise words are very appreciated!

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited April 2012

    Did they stop the herceptin too?  I have heard of this happening before.  Did u call ur Dr?  It could be nothing but i think i would make them aware and see if the wanna do more tests or move up surgery, or even more chemo?  But im totally guessing here.......i would for sure go talk to your onc

  • JNS
    JNS Member Posts: 24
    edited April 2012

    Thanks, fightinhrd!  Your name rocks, btw.  I did message my MO and he responded that it was unlikely that anything was growing since I'm still getting the Herceptin.  But I'm only weakly positive for HER-2 and was already warned that Herceptin has less of an effect on HER-2+ versus HER-2+++.

    I'm guessing that since my surgery is scheduled for next Wednesday, he thinks one or two more weeks of growth (if it's growth) wouldn't make a difference.  It's just so hard to stay sane while I wait for surgery and wonder if the lump is growing (and undoing all the shrinking that the chemo did achieve).  I had a phone meeting with my boss today and started crying when she asked me how I was doing...not very professional of me! :( 

  • kerri72
    kerri72 Member Posts: 69
    edited April 2012

    Hi JNS, I did 4 cycles of neo-adjuvant (Taxotere, Carboplatin, Herceptin) before surgery and on the weeks I didn't get the chemo I thought I could feel my lump rebound in size. It would noticeably shrink after chemo, and by my next dose 3 weeks later, I felt it regrowing. Not bigger than the original size, but it seemed to shrink and then regrow, shrink then regrow. Needless to say, I was freaked out.

    But at the time of surgery the lump had indeed shrunk significantly from its original size (based on the mammo/MRI). All my doctors agreed it was a "very good response" to neo-adjuvant treatment. Of course I was hoping for a pathologic complete response, and was a bit disappointed. I'm not sure if I was imagining the regrowth or if it really did shrink then regrow. My tumor was highly ER+, so maybe the estrogen in my body kept feeding the tumor, or maybe Herceptin just didn't work that well for me.

    I know it's hard not to worry. Some of my scariest moments were the week before surgery, but the chances are that your MO is right and that the tumor isn't regrowing. It's possible but not likely. Hang in there! Best of luck with your surgery and all the rest of this roller coaster ride...

  • JNS
    JNS Member Posts: 24
    edited April 2012

    Thank you for sharing your experience kerri72, and especially for the reassurance.  The stress has been really getting to me and I've been using the leftover Ativan from chemo to stop myself from going insane.  I just have to make it to Wednesday when I'll finally get this thing out of me.

    I see that you were diagnosed in August 2010, so I hope you've finished treatment and are doing well (or if you're on targeted therapy, that's it's going well)! 

  • kerri72
    kerri72 Member Posts: 69
    edited April 2012

    Thanks, JNS! Yes, I am doing very well now after chemo, bilateral mastectomies and oophorectomy, more chemo, rads, Herceptin and now Tamoxifen. It was a long year and a half of treatment, but I can honestly say that I feel shockingly normal now. I hear you about the Ativan - it was my good friend for a while there, but my fear and stress have subsided a lot recently. Actually, ever since my first scans after finishing treatment came back clear, I felt worlds better.

    Are you supposed to do more chemo after surgery? Or does it depend on what they find? Wednesday is soon! You'll be through the worst of it before you know it.

  • JNS
    JNS Member Posts: 24
    edited April 2012

    kerri72, that's so great to hear that you feel normal now--you have an excellent outlook.  Also, definitely great to hear that you're doing well after the Cadillac of treatments.  Here's wishing you continued health!

    No, I don't have additional chemo scheduled after surgery--I did the full 4 AC and 4 TH already.  I'm on Herceptin for another 8-9 months.  I'm definitely scared to find out what the path report says, but hoping for good or at least neutral news (I don't dare hope for too much).

    Thank you for the encouragement--I just need to get through the rest of this day and then get myself into the OR! 

  • C-squared
    C-squared Member Posts: 514
    edited April 2012

    JNS- I am so sorry but I just lost a complete response that I was sending to you to reassure you that they really NEVER know what size it is until they get it out.  I had 7 weeks of Taxol and the results of an US indicated that my tumor was growing.  Turns out what they were looking for (a 6.5cm tumor) was ONLY 2cm!!!  Leave it to the pathologists to do their work and provide the facts.  A mammo can't do it, an MRI can't do it, an US can't do it - only the pathology can do it!  Good luck tomorrow and keep the faith!!!

  • JNS
    JNS Member Posts: 24
    edited April 2012

    Thank you, C-squared!  Grr, don't you hate it when you lose what you typed?!  The surgery was fine yesterday, thank goodness.  It's definitely one of those experiences in life where the anticipation can be worse than the thing you fear itself.  Yes, you're absolutely right, no stressing out prematurely.  I will force myself to be patient and wait for the path report.

    That's such a wonderful outcome on your tumor being so much smaller!  I hope your recovery is going well or if you're still in treatment that it's going smoothly!

  • C-squared
    C-squared Member Posts: 514
    edited April 2012

    JNS- glad to hear the procedure went well and wishing you a "good" path report.  Keep yourself busy and the time will pass.  Before you know it, you'll be getting the results - hopefully NO negative surprises! 

    How was the AC for you?  I am starting DD AC next week (Thursday) and I am TERRIFIED based on what I've read on some of these forums!  I've heard: bring popsicles / chew ice to reduce mouth sores, USE the anti-nausea drugs, stay hydrated - do you have any advice?  Please don't share any news that you wouldn't want someone to tell you.  I think I've already seen & heard enough of that and I'm looking for information to better help me prepare.  Sealed  Did the SE hit you soon after treatment?  Some women have reported that it hit them the same night or day after treatment.  With the Taxol I was so juiced up on steroids that it didn't hit me until Saturday or Sunday after a Thursday afternoon treatment.  Do they give you steroids with the AC also?  OK - enough with my questions!  Can you tell I'm anxious?  lololol  And yes, I've gotten anti-anxiety medication too Laughing

    Thanks for any insight and God-speed to you in your healing!

     

  • JNS
    JNS Member Posts: 24
    edited April 2012

    C-squared, thanks for the positive wishes! :)  Funny you should ask (well, not actually funny), but here's a post I wrote on another HER-2 thread to a woman who was upset about the mental effects of AC:

    I can't sugar coat it, I had really low moments while on AC, it was so unreal--I never knew I could feel that way (it was like the AC unlocked this dark part of my brain that I didn't even know existed). The good news is, it WILL go away and you WILL feel like yourself again. When the side effects pass, you'll remember what it feels like to be happy and calm and sane and in control of your life--remember those days when you're down!  My "downtimes" happened like clockwork with AC--on Day 5, I would ask my husband nutty questions, say negative things, have crying jags. He would always remind me that it was the drugs talking and that it would go away.  Hang in there and just remember that this will pass. You'll come out the other side stronger and the cancer will be wiped out! 

    The worst part of AC for me was the sadness/depression that hit around Day 5.  When I was reading on the boards before I got the AC, I didn't understand what other women meant when they wrote about how it messed with their heads--I get it now.  But remember, it will pass and it's just the effects of the drugs.  Also, a little Ativan always helps, as you know. :)

    I got the following drugs before AC: (1) Decadron aka Dexamethasone (steroid), (2) Emend (anti-puke), (3) Ativan (anti-nausea and anti-anxiety), and (4) Zofran aka Ondansetron (anti-nausea and anti-puke).  They good news is that I never once threw up while getting AC, the bad news is that I still felt nauseous.  I usually skipped solid food on Day 1 and ate plain foods on Day 2 through 4 (toast, apple sauce, those peaches that come in glass jars from Trader Joe's).  They'll give you prescriptions for anti-nausea pills to take when you need them, so definitely take them (I got Emend, Ativan, and Compazine).

    Other than sadness and nausea, I also had some headaches (Tylenol worked) and heartburn (Pepcid worked).  The first cycle, I felt pretty normal by Day 7, but by my fourth cycle, I didn't feel normal until Day 11.  So it definitely builds.  I was on a 21 day cycle, not DD--so you'll be done quicker!  I still managed to work while on AC (I got chemo Friday aft, then went back to work on Wednesday or Thursday).

    I had Taxotere after AC, and I did find it easier than the AC (Taxol would probably be similar in SEs).  But I had a great response to AC, so in a weird way, I'm a big "fan" of it.

    You'll be fine, C-squared, you really will.  Here's wishing you the mildest possible SEs.  And of course, I hope AC will wipe out every single last one of those BC cells!

  • C-squared
    C-squared Member Posts: 514
    edited April 2012

    JNS- Thank you SO MUCH for the very helpful info!  Your candid description of your experience is so appreciated!  I'm actually looking forward to shedding a few tears after all that I've been through!  I've been in "GO" mode for so long that I haven't had a chance to stop and mourn the experience.  So much to learn, so much to research, so many decisions to make!  I'm BRCA+ so I'm learning all about my options after mastectomy.  It's not easy. But before I continue my tangent I want you to know how much I appreciate your support, your knowledge and sharing your experience!  

     I hope you are feeling well and that recovery is treating you well. 

    Many thanks!

  • JNS
    JNS Member Posts: 24
    edited April 2012

    C-squared, so glad this is helpful and I totally know what you mean about stopping and really letting it all sink in.  I wish you all the best on your journey to health (that's how I like to think of it--it's just a detour that we're working around)!  

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