Chemo -- is it a must?

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Racquel
Racquel Member Posts: 63
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I was DX'd with BC in left breast on May 13th.  I opted to have both breasts removed which was done two weeks ago today.  They also took out 8 lymph nodes.  When I met with the general surgeon for my post-op this past Tuesday he said that based on size, stage and grade that he doesn't think chemo will be necessary.  Now my PS and the 1st surgeon I'd met with initially both said that it should be done no matter what just to be sure.  My lymph nodes were all clear and surgeon said he got all of it.  He did recommend having ovaries removed though.

There is quite a good amount of cancers on both sides of my family.  Everyone that I've spoken to (some who've been touched by cancer) all say I'm crazy if I don't push for at least a couple rounds of chemo.

I meet with my oncologist on Monday and am not sure what she's going to recommend for treatment.  She said we'd cross that bridge when we come to it.  Is chemo necessary for everyone?  Are there pros and cons either way?  I guess I just want to be the most informed when I meet with her and am feeling a bit lost right now.

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  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited June 2009

    I'm far from an expert so this is just my opinion.  Stage 1 is really early and there's no lymph node involvement, and you have grade one, which is the least aggressive... talk to your oncol. and even a second or third if that helps you sort through this.  I've heard of people who don't have chemo and that may be standard for where you are in your dx.  My only concern (and again, I'm not an expert!!) would be that there still could be cancer cells floating in your bloodstream, and chemo could help wipe those out.  But I'm just not sure how likely that is in your case.

    Others will chime in with more help.  Just thought I'd throw in my 2 cents, which is about all it's worth! :)

    Best of luck.

    Carol

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  • idaho
    idaho Member Posts: 1,187
    edited June 2009

    Talk to your onc and ask him what percentage chemo lessens your recurrence chance.  You might also get the oncotype test- that can help make the decision.  In my case- chemo only lessened my recurrence rate by 4%- I chose not to do it.  Chemo has such horrible side effects, I decided it just wasn't worth it.  I am taking tomoxifen and probably going to have ovaries out, I agree with Carol above- plus it is always an option later if you need it.  Tami

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  • otter
    otter Member Posts: 6,099
    edited June 2009

    Racquel, the one thing I can see about your situation that would argue in favor of chemo is that your tumor was HER2+.  Tumors that overexpress HER2 (which is what "HER2+" means) tend to grow more quickly and are more likely to spread.  So, even with a small tumor (you didn't mention the size of the tumor, but "Stage I" would be less than 2 cm), you are probably looking at some sort of chemo, combined with Herceptin for the HER2+ part.

    One thing that isn't clear:  your signature line and profile page say that the type of tumor you had was "ductal carcinoma in situ", or DCIS.  That type of tumor is not invasive, and it is not normally treated with chemo.  DCIS is not classified as "Stage I" either--it's actually "Stage 0" because the cells have not invaded normal breast tissue yet.

    I am wondering if perhaps you meant to write that your tumor was "IDC", or "invasive ductal carcinoma".  In that case, chemo would make more sense, as would the "Stage I" classification.  This is all pretty new and confusing, yes?

    Let your oncologist be the one to make the recommendation about chemo.  That's her job.  Surgeons just cut and sew.  :)

    Hugs...

    otter 

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  • lisa-e
    lisa-e Member Posts: 819
    edited June 2009
    otter wrote:Let your oncologist be the one to make the recommendation about chemo.  That's her job.  Surgeons just cut and sew.  :) Very true, Otter.  My surgeon, who is a skilled surgeon and highly respected, said several things to me regarding the adjunctive treatment of my breast cancer that were plain, flat out wrong. Racquel, I didn't have chemo, although my surgeon said it would be necessary.  Otter is right the oncologist being the one to recommend or not recommend chemo. 
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  • rgiuff
    rgiuff Member Posts: 1,094
    edited June 2009

    Racquel,  your cancer was very early stage, like mine and also like mine, negative in the lymph nodes.  I had Oncotype DX testing done, which showed no need for chemo, due to my low risk for reoccurrence.  Are you going to have this done?  Medical oncologist usually orders this.  I'd also think twice about ovary removal.  It causes instant menopause, with many possible undesirable side effects.  None of my doctors ever even mentioned that as a possibility, and I would probably say no if they did.

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2009

    I'll second what otter said.  It's the HER2 status that is most significant when it comes to smaller tumors.  The NCCN treatment guidelines (which are used by most doctors in the U.S.) suggest chemo for HER2+ tumors that are 0.6cm and larger.  You can see the decision tree for treatment based on your diagnosis on pages 11, 12 and 13 of this document: http://www.nccn.org/professionals/physician_gls/PDF/breast.pdf

    I'll also second otter's question about your diagnosis.  DCIS is always Stage 0, and someone who had DCIS does not require chemo.  So since you say that your diagnosis is DCIS, Stage I and since chemo is being discussed, I'm assuming that your diagnosis is actually IDC, Stage I. In this case, chemo would be the standard of care if your HER2+ tumor is 0.6cm in size or larger.

    Finally, I agree with otter's last point as well.  Your oncologist is the expert on chemo and she is the doctor who will recommend whether chemo is required for you or not.  What your surgeon says is simply an opinion.  Don't put too much weight on it.

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  • Racquel
    Racquel Member Posts: 63
    edited June 2009

    otter -- Yeah, I messed up when I did my sig.  It's IDC (had to call doc to check LOL).  Not sure what size it was but I believe it was under 1cm.  I've got measurements on my pathology report with initial core biopsy but I'm sure that's not exactly what the growth size was.

    Beesie -- thank you for the link!  It all has gone amazingly fast from diagnosis to surgery and now onto the next stage.  Phew!

    I will be asking the onco about the Oncotype test.  Have never heard of that before but I do know that onco wants me to go in for genetic testing because there are so many cancers in the family.

    Thank you everyone for the helpful information.

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  • NanaA
    NanaA Member Posts: 293
    edited June 2009

    I had a very similar dx and did 12 weekly taxol with the herceptin every 3 weeks and will continue the herceptin for a year every 3 weeks.  The herceptin reduces your reccurence rate by 50% if you are her2+.  They usually do not give herceptin without starting it with chemo.  Yhe weekly taxol is supposed to be easier than an every 3 week chemo.  I finished taxol in May and will start rads in July since I only did lumpectomy.  I will start femara also.  Hope this helps /  Annette

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  • Misty1
    Misty1 Member Posts: 272
    edited June 2009

    My onc was on the fence for me.  Mine was .6 cm.  After a week of no sleep, I decided to do chemo (TC x 4) with Herceptin every three weeks for the year.  I have two Herceptins left.  It wasn't as bad as I thought.  Now, I have peace of mind knowing I did everything I could.

    ~Misty

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  • ktym
    ktym Member Posts: 2,637
    edited June 2009

    Racquel: you can't get size from a core biopsy.  That is just a sampling of tissue.  You'll need to get the size from the final pathology report of your operation.  I agree with the above, get a chemo decision from your oncologist.  I also wouldn't let a breast surgeon decide about my ovaries.  I really wouldn't let a general surgeon who happens to do breast surgery decide about my ovaries.  Don't know which one of those did your surgery.  Your oncologist can help give you estimates of additional benefit of ovary removal vs. ovarian suppression vs. and aromatase inhibitor vs. tamoxifen etc after the chemo decision is made.  That will help give you an idea of benefit of taking the ovaries out in treating your breast cancer.  The question of taking your ovaries out reducing your risk of ovarian cancer is better made by a gynecology oncologist and a genetic counselor.  The two issues are separate when making that decision.

    It is a lot at first.  Take it a step at a time and thing about it.  You don't need to make instant decisions in someone's office.   You can go home think about it a few days then call back or do another visit. 

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  • bluedasher
    bluedasher Member Posts: 1,203
    edited June 2009

    There is recent retrospective research that says that HER2+ cancers recur at high rates even for tumors that are less than 1 cm. They found that recurrence without chemo was about 22%. That's why I'm glad that I decided to have chemo and Herceptin. I did Taxotere, Carboplatin and Herceptin (TCH) chemo even though my tumor was less than 1 cm.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Raquel, the Oncotype test is something that is an optional test that a lot of breast surgeons and oncologists do when you have an ER+ tumor.  It can only be done on those types of tumors and what it does it looks at a sample of your tumor type against other women who have had similar to yours.  Then you get a percentage of risk of recurrance based on that, graded low, intermediate and high probability.  It can help you and your onc decide about chemo, though given you are HER2+, you will probably be given that to help combat recurrance as well as to make sure you don't have nasty little cells running around that aren't detected yet, as well as the Hereceptin.  My score was 17%, which was on the low end of intermediate, but we opted to go for 4 rounds of taxotere/cytoxan just to be extra agressive about treatment, even though I am HER2-, the tumor was 3 cm, veering towards a large one. Of those 4 rounds I was scheduled for, I did 2 rounds and stopped due to secondary side effects that were getting worse.  So, I'm thinking you will get a lot of information tomorrow with your doctor's visit, and like kmmd mentioned, if you need time to think it through, you will have that.  Good luck and keep us posted!

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  • cookymkr
    cookymkr Member Posts: 82
    edited June 2009

    Raquel

    Your situation is very similiar to mine. Almost the exact same dx. I chose to have BMX even tho the cancer was only on the L side. My ONC said I was on the fence as far as chemo, but I got the feeling that was where we were headed. I had my MX in Nov. 2008 and began chemo on Dec. 23rd. Finished chemo in February 2009.  I have to admit the chemo wasn't as bad as I had anticipated. I was never nauseated one time. I took the anti-nausea drugs that they prescribed for me, but I never felt that I actually needed them.

    As far as making a decision, I totally went with the recommendation from my ONC. Afterall, he's the expert! He deals with this stuff every day!  I figured I'm gonna do everything possible to conquer this beast. Not give it an inch!  Even if the recurrence chance is minimal, it is that much of a chance for it to spread.  Chemo acts like the protector and helps to kill any cancer cells that may be lurking somewhere else in your body.

    In the end, the decision is totally yours. YOUR THE ONE THAT HAS TO LIVE WITH IT! Do what you feel is best. The experts are to be there to give you the information to help you fight your battle. What you choose to do with that information is your choice.

    Good Luck!

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  • nelia48
    nelia48 Member Posts: 539
    edited June 2009

    Racquel, I would wait until you meet with your oncologist and see what he says.  I would take his word as the person who really knows what he is talking about.  I, for one, only used my surgeon as the person who did the cutting.  He never talked to me about treatment for the cancer --- only about the surgery.  My oncologist was the one who decided my course of treatment, set up all the scans and tests, ordered blood work, etc.  Go with that!

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  • bluedasher
    bluedasher Member Posts: 1,203
    edited June 2009

    I forgot to put something into my earlier post - whether chemo is done doesn't usually depend on the type of surgery or whether they got clean margins.

    The decision is usually based on the size of tumor, whether it is found in lymph nodes and the characteristics of the cancer cells - grade, hormone receptors, HER2 receptors and, for HER2- cancers, oncotype. Chemo is a systemic treatment which is aimed at getting cancer anywhere in your body. Having gotten to the lymph nodes is one sign that some cells may have also spread beyond. But even if the lymph nodes are clear, some may have gotten out by the vascular system.

    Surgery type, margins and lymph node status influence whether radiation is needed because that is a localized therapy aimed at getting cancer cells that might have escaped the surgery in the breast or in some cases in the nodes and chest wall. 

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