ILC..Large tumor...Chemotherapy before surgery...did it work?

JudyO
JudyO Member Posts: 225

I have been doing a lot of reading about chemotherapy and if it works for ILC. Some studies say not often. I also have seen where ER+ and HER- don't get much out of chemotherapy. Maybe I am reading these wrong. I went throught the chemo since I am an advanced case but I would have done anything not to. I went from 57 to 80 years old in a matter of months. I finished close to Thanksgiving and just finished radiation. I am praying I will get back to my old self. I was very healthy...no medications...perfect blood pressure...everything...very active...now I sleep 10 hours every night...and  run out of energy mid afternoon...so unlike me.  What have you heard about chemo for ILC?  If you did chemo before surgery to shrink the tumor, what was the results?

Comments

  • lexislove
    lexislove Member Posts: 2,645
    edited January 2009
    I didn't have ILC, you can see my signature, but I was ER+ and HER2+. I did the chemo before surgery. I started with a 8cm tumor / no nodes. final pathology was a 1.3 X 1.3 cm or 4 cm in diameter tumor with clear margins. The chemo shrunk it approx 85 - 90%.My docs said it had a great response to the chemo. Have you had your final pathology from the surgery yet? Smile
  • nash
    nash Member Posts: 2,600
    edited January 2009

    One of our grade 1 ILC girls had a good response to neoadjuvant chemo. I can't remember exactly who it was, but hopefully she will jump in here and give you her experience.

     

  • TXBadboob
    TXBadboob Member Posts: 597
    edited January 2009

      Hey, girls!  I started neo chemo in Aug 08, Abraxane every week for 12 weeks, then FEC every 3 weeks for 12 weeks.  I only have one more tx to go.  At the halfway point, I went from 2.9 cm to 1.9 cm and a little shrinkage on my lymph node.  I can hardly feel the tumor anymore.  The chemo definitely shuts down my estrogen, as I turned menopausal after I started.  My surgeon said they will take my ovaries also, because the ER/PR feed the tumor.

    Judy, I understand about the turning old thing.  I feel like I've aged 10 years since I began, but there was a big difference in how I felt between the two different chemo txs, and I think it might just take us a long time to recover and find our new beginnings again.  I find that I have to force myself to do things good for me, but when I do them, I feel empowered more and more.  Think about this, you've battled cancer and you're still here!  You can do anything!  You'll get back to your old self in time, but this didn't happen to us overnight, so give yourself a break.

      I'll try to let you know what happens after surgery, how big,etc.

  • susan13
    susan13 Member Posts: 732
    edited January 2009

    Hi Judy,

    I had neoadjuvent as I posted on one of our previous posts.  Originally they measured my tumor to be 10cmx11cm.  After mastectomy it was 1.8cm.   Big difference.  Also, I think with ILC it's very hard to determine the size cause it's not always an actual lump. So the original measurement I doubt was 100% accurate.

    Also, I know you keep referring to your case as being "advanced".  But really a 2cm tumor is not THAT big.  Yes your nodes were involved but your tumor was also Grade 1 a slow growing cancer, it was just there for a long time so it overflowed into your nodes.  Also, give yourself some time to try and come back from chemo.  It's not going to happen overnight, or even a year or 2.  It'll take some time.  Yes there are permanent side effects from chemo but just think that it did do some good.  Try to get out and walk and eat healthy and that will keep you on the path to getting back to your old self.

    Sue

  • Seabee
    Seabee Member Posts: 557
    edited January 2009

    If Judy O was diagnosed at 57, I assume she was peri or post menopausal.  She would therefore not derive much or any benefit from chemo shutting down her ovaries. And if that's the way chemo works, there are other ways to do it.

    Judy, what regimen did they prescribe for you? 

    I find that surgery alone has weakened me. Add to that chemo and radiation, not to mention the emotional stress, and you have a lot of assaults on your system to recover from. Surgery is no joke, even when it seems minor. It took me three or four years to recover completely from a bunionectomy.

    Get as much sleep as you need, and try to gradually increase your activity. If things didn't start to improve in a month or so, I'd see my doctor. When is your next follow-up?

  • JudyO
    JudyO Member Posts: 225
    edited March 2009

    I know I have chatted with some of you before on this sight. Yes I am post menopausal. That is one of the reasons I am wondering about the chemo. I saw on another thread that Seabee you didn' t do the chemo. I have done so much research that has pointed me in the direction that the chemo may have done nothing. I wasn't able to question it much since I had those aux. positive nodes and  knew I needed to do what was recommended. I did opt out of the avastin clinical trial. My surgeon told me he thought I would be okay with just standard treatment. He is not a fan of avastin unless you are in the stage 4 group. He said he has seen many bad things from it. He is near retirement and very well respected in our city so I believe what he said. My oncologist didn't push for the avastin. Although at a later date he did say if it were him he would have entered the trial. I am also one of those people who don't like to hit my body with meds so the thought of adding the avastin with the other stuff really didn't make me feel good. I did do dose dense 4AC and 4Taxol, 25 rads, and now on arimidex

  • Seabee
    Seabee Member Posts: 557
    edited January 2009

    Well, you've done the chemo--a very stiff dose of it--and so far survived. I assume they did regular checks of your heart function during the infusion process. If fatigue persists beyond reason, you might want to be checked out by a cardiologist. It was anthracycline cardiotoxicity that I most objected to. If the Oncotype DX test had suggested benefit from chemo, I would have tried TC.

  • JudyO
    JudyO Member Posts: 225
    edited March 2009

    Saebee...thanks for the thoughts....they didn't do any heart checks other than the muga before I started....I think the fatigue may be a couple of things...first I was always so very active...like the ever ready bunny...the young people at the office often commented how they couldn't keep up with me....also I think the holidays hit me...2 sons home from college...I am the old fashion mom who over decorates...over bakes...over does everything...no routine around here the last 3 or 4 weeks...I am sure I will get rested now that things are getting back to normal...my sister-in-law just finished AC and almost died from pneumia...wicked stuff...she opted out of taxol....(triple negative)....

  • Seabee
    Seabee Member Posts: 557
    edited January 2009

    As a postscript, Judy, I wouldn't worry about the chemo unless I thought it had done me harm, and even then I wouldn't regret my decision.  All of us make the best decision we can make under the circumstances, and we can't entirely control the circumstances. Some of us have a chance to do research; others, for one reason or another, decide to trust the doctor. No matter what we do, there will be drawbacks, so we try to find the optimal path.

    One study I read estimated that only 40% of breast cancer patients who do chemo actually benefit from it. When it shrinks tumors, we know those patients have benefited, but if a patient doesn't relapse, s/he might have been one of the roughly 60% who won't relapse in any case, or s/he might have benefited from chemo, or hormonal, or radiation, or all three.

    Here's hoping that your fatigue soon dissipates, so you can return to your normal, bustling self.

  • Trish03
    Trish03 Member Posts: 292
    edited January 2009

    Hi, Judy,

    If I read correctly, you just recently finished your radiation. It's totally normal to still have fatigue at this point. I've read that it takes at least as long to recover as your treatment lasted (if treatment lasts 6 months, fatigue will last at least 6 months). For some, it lasts even longer. Your body is still healing from the radiation. You will eventually have more energy; you just have to be patient and be kind to yourself.

    I was 56 at dx and had the same tx you've had. I had fatigue for a long time, probably off and on for a couple of years. I remember that wasn't the same as being tired; instead, it was an overwhelming exhaustion. I learned that I had to allow time for my body to rest when I needed it. I still need more rest than I did, possible because I'm now 5 years older!

    Even though I experienced some side effects, I'm still glad that I had the chemo. I don't know if I would have had 5 years of good health if I hadn't, and I wouldn't want to take that gamble. You will eventually feel like your old self. It just takes time.

    All the best to you,

    Trish 

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