Chemo or not?

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sweeney
sweeney Member Posts: 353
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I've got my first appt with my onc this week, I was only diagnosed about a month ago and now have all the pathology back from my lumpectomy. I'm wondering what I might be facing and am looking for other women who have gone through this so that I'm well equipped with info when I go in. I understand no one can give me a definitive answer or a medical opinion BUT if you were in the same boat, I'd really like to hear what your treatment regime was like. I had a 1.5 cm tumour invasive ductal carcinoma, no lymph node involvement, clean margins, ER+ PR+ HER2- . Anyone else out there with a similar situation? Did you have to do chemo? Was radiation and tamoxifen enough? Any thoughts/experiences sure would help me have a better picture before I go in to the oncologist for the first time. Thank you so much.:)

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited July 2010
    sweeney much depends on size , stage, grade and ER/PR/HER status. Mine was IDC 1.8 cm, stage II grade 2 ER+PR-HER2-. I had one node with micromets out of 4. So we did an OncoType test. I strongly urge you to ask for one as it will greatly aid your decision-making. My score came in at 17 (high side of low risk). I am 58 and the risk of recurrance % with chemo was 3%. Not enough for me to risk potential long term se's so I went stright to rads. The radonc felt that we would get any stray cancer with rads to the axilla. I am 4tx away from done. Then on the Arimidex, maybe.
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  • LtotheK
    LtotheK Member Posts: 2,095
    edited July 2010

    I'm in nearly the same boat, save the 1.2 not 1.5 cm.  My doc says grade 3, or lymphovascular invasion (separate from lymph node status) are her two main criteria for chemo.  Plus, my age:  39.  Those under 50 are more likely to have the chemo book thrown at them.

    I am to start 4 TC on July 13, but have a second opinion this week.

    What is your oncotype score?  That would determine a lot.

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  • YramAL
    YramAL Member Posts: 1,651
    edited July 2010

    Sweeney-

    My stats were exactly the same as yours-I had the Oncotype test with a result of 11, so no chemo for me. I had 33 rads treatments and am now on Tamoxifen.

    Mary 

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  • sweeney
    sweeney Member Posts: 353
    edited July 2010

    Hi all,

     The company that owns the Oncotype Test doesn't have a lab in Canada and I'm not sure if I can have my tissue looked at now since my surgery was four weeks ago. Anyone know? Anyhow, so I think I'll be going into this without an oncotype score, which is too bad b/c it sounds really useful. I'm 39 too, so am scared about chemo!

     sweeney

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited July 2010

    Sweeney, you will find most, not all women here who get to opt out of chemo are over 45-50.  I'm afraid at our age, it's really terribly unlikely we'll get out of chemo, especially with that grade 3.  BUT, you have no lymph node involvement, so my wish for you is what I got:  power through 4 rounds of TC.  As they all say here, it's doable.  Also, given our young-ish age, you may have far fewer SEs.

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  • sweeney
    sweeney Member Posts: 353
    edited July 2010

    Hi MHP70

     I'm actually Grade 2 for the tumour, just haven't changed my signature yet! Do you think that might make any difference? I'm more freaked out about chemo than I was about the actual tumour. I know it's ridiculous. I'll do anything I need to to make sure this thing is gone for good. I just don't want to lose my hair and feel sick. Does anyone on some of the lower doses of chemo NOT lose their hair? I've heard conflicting reports.

     Thanks so much for going back and forth on this with me, it really helps to talk to someone about these fears and in my age group too. Wish I could give you a big hug and a cup of tea!:)

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  • 2z54
    2z54 Member Posts: 261
    edited July 2010

    Hi Sweeny,

    My 2cents here is:  don't be afraid of chemo.  None of us wanted to do do it, but it proved to be much more doable than we thought. There are women on this board who have used "cold caps" and didn't lose their hair.  You can try searching for them to get more info.

    I'm 56 and didn't have a choice about chemo. But, for what it's worth, I'm glad I threw the book at it.  No second guessing that I didn't go after it full bore when I had the chance.

    Best of luck to you, and please keep us posted about what you decide!

    sue

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  • shadow2356
    shadow2356 Member Posts: 393
    edited July 2010

    I used the Cold Caps. I still have all the hair on my head. I lost every strand of body hair. My hair is long so I thought the loss would be too much. The Penguin Cold Caps really do work. It was SOOOOOO worth doing!

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  • sweeney
    sweeney Member Posts: 353
    edited July 2010

    Hmmm. Didn't think about Cold Caps, hadn't actually heard of them. Is this something the hospital usually offers or do you buy it and bring it with you? I'll ask my onco about it too.

     This is what I hate most about BC- the constant not knowing!:)

    (Shadow, I"m going to check out your blog! Thx for the CC info...)

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  • YramAL
    YramAL Member Posts: 1,651
    edited July 2010

    Sweeney-

    Don't give up on the Oncotype test just yet. Go to their website. http://www.MyTreatmentDecision.com/

    I did not have my tumor tested at the time of my surgery-it was tested about 3 weeks later. My results indicated that for me  the risks of chemotherapy were greater  than the risk of my cancer recurring. Like I said, my stats were exactly like yours. except for my age(I'm 50).

    I was told by the company that does the testing that if my insurance did not pay for the test, they had financial assistance programs available. I'm not sure how that would work for someone living in Canada, but it's worth a try.

    Mary 

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited July 2010

    Different oncs, different ideas, but in my case, the Grade 2 would mean NO CHEMO!

    And as for different oncs, mine said no way, no how on cold caps.  My naturopath wasn't even convinced.  Apparently, the studies have all been done in Europe, and doctors here are concerned that they are tied to a higher incidence of recurrence.  Don't shoot the messenger!  I'm only repeating what my folks here say.

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  • shadow2356
    shadow2356 Member Posts: 393
    edited July 2010

    I used the cold caps. Prior to deciding I read every study you could think of. They have been used in Europe for 20 years and it is now the standard of care there. My doctors reseached it too. There was no greater incidence of recurrence. In fact, most of the users actually had a lower recurrence rate. My doctors said they had no worry about treatment, but that it would never work. Well, it worked. They were amazed.

    Here is the link to the thread on here:

    http://community.breastcancer.org/forum/6/topic/735873?page=1

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited July 2010

    MaryEllen, it's such a shame there is a divide between Europe and US with research.  Makes me angry, because I'm going to be on Taxotere which is murder on the hair, and I know there is no problem in my heart.  I think the only risk it could pose is the scalp metasis, and who ever heard of that.  I don't, however, see how the cold caps would have any relationship to lower recurrence.  What cold does is make it impossible for the chemo to get into the tissues of that area.

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  • shadow2356
    shadow2356 Member Posts: 393
    edited July 2010

    True. There was a study about scalp mets. Of 7800 people 2 got scalp mets. I was willing to take the risk since the percentage was so low

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  • KGBinDC
    KGBinDC Member Posts: 45
    edited July 2010

    Hi Sweeney, just wanted to let you know I was in same boat as you.  Grade 1, Stage 1, no nodes, ER+, PR-, HER 2-, 1.3CM.  I'm 44.  I got the Oncotype DX test and my score was 20 so I opted for 4 rounds of TC.  3 down and 1 to go.  I did lose my hair but I found out that I look great without bangs.  I make each chemo a different theme and then I go shopping or out.  It really hasn't been that bad.  I've even had some fun.  Like when the nurses ask me why I'm so tan, and I tell them its a spray tan and I'm lucky I didn't come out looking like an oompa loompa.  I hope this helps.  Kimberly 

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  • ordinarymammal
    ordinarymammal Member Posts: 59
    edited July 2010

    About penguin cold caps and scalp metastases.  A 2005 letter to the Annals of Oncology by Christodoulou   http://annonc.oxfordjournals.org/content/17/2/350.1.full  Incidence of scalp mets in 227 breast cancer patients who used penguin cold caps was 2 (.88%).  Oddly, 1 woman chose to use cold caps during docetaxel (Taxotere) treatment even though she already had scalp mets.  She kept her hair and the scalp mets responded to treatment.

    Study by Lemieux et al in 2009 http://www.ncbi.nlm.nih.gov/pubmed/19241158  Scalp mets occurred in 1.1% of 553 bc patients using scalp cooling and in 1.2% of 87 not using scalp cooling  (no difference).  None had scalp mets as the only site of recurrence, which suggests cold caps don't "block" chemotherapy from getting to the scalp.

    Sorry if this is incoherent.  I'm in a bit of a fog today.  But I had to post a reply because it's driving me CRAZY that the oncologists who know that scalp cooling might work (like my own) don't suggest it to their patients because of unfounded fears of increased scalp metastases.

    Sweeney  take your sweet time coming to treatment decisions.  If you can, get a second or third opinion.  Oncology is maddeningly inexact, with its percentages and statistics, and risks vs benefits, and standard treatments and clinical trials. Different oncs have different approaches.  If you don't "click" with your onc, try to find another.

    Oncotype DX testing is hideously expensive, but I'm grateful for the test.  My score was a surprise, and I would not have chosen chemo had I not known it.

    I'm day 28 into chemo and I haven't yet vomited or lost my hair.  It's been really rough some days, and pretty close to normal on others.  The possible long term SE's bug me, but not as much as possible stage IV does.  

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited July 2010

    Ordinarymammal,  I agree. And I also think there IS something to be said for quality of life, even when dealing with such serious matters.

    I have no idea why my onc was talking about higher rates of recurrence with the cold caps, she didn't give me evidence, and she didn't mention scalp mets in particular (she actually sort of alluded to BC recurrence, but I don't see how that would be possible).  What she did say is that there is no evidence here in the US, so clearly, some studies need to take place. Generally, oncologists like to see evidence from their same-country peers.

    Speaking of inexact oncology:  I got my second opinion today.  Total 180 from the chemo advice from first hospital.  She said, Oncotype 12, no chemo.  Some hospitals take Oncotype as gospel, others not.  What a mess!

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  • sweeney
    sweeney Member Posts: 353
    edited July 2010

    This is what frightens me the most. I have to become a PhD in breast cancer just to manage my own care to my satisfaction. No wonder I'm losing my sanity!

     Oh well. Am making pumpkin and blueberry muffins, have researched a good wig place here in town and, thanks to all of you, am now better equipped to ask questions tomorrow at the 1st (and petrifying) onc appt. Wish me luck. Truly ladies, thank you so much for taking the time to write. One of the things I have learned so far from cancer is never underestimate the power of a group of women together.

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  • YramAL
    YramAL Member Posts: 1,651
    edited July 2010

    Just checking in with you Sweeney....

    How did your 1st oncologist appointment go? Are things clearer now, or even more confusing?

    Mary 

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  • sweeney
    sweeney Member Posts: 353
    edited July 2010

    Hi Mary, thanks so much for remembering me.

    Not sure things are clearer right now, but they will be! My Canadian health care system has agreed that I'm the perfect candidate for the Oncotype DX test, so off my tumour goes to be tested. Hopefully this will help make the picture clearer. Both of my oncologists turned out to be amazing and helpful and were really, really supportive of the Oncotype for me. So now I'm just keeping my fingers crossed for a low score.

    Sounds like anything under 11 is great news and anything between 12-17 is grey area and anything above is chemo for sure. One thing is for certain, I'm really getting used to the 'hurry up and wait' state of my life!:)

    Hope all is well with everyone. Mary, would like to keep corresponding with you as it seems like we're so close in diagnosis, etc. And again thx for checking in.

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  • ordinarymammal
    ordinarymammal Member Posts: 59
    edited July 2010

    EJandKJ'sMom

    I believe your onc is referring to the TAILORx trial.  You need to be HER2/neu negative to be eligible. Oh, I don't see if you are node negative--that is a requirement, too.  It is my understanding that if you enroll in the trial, your oncotype dx test is paid for.  Here is a link to some information about the trial:

    http://www.cancer.gov/clinicaltrials/digestpage/TAILORx

    On this page, I see there are trial sites in most of the provinces:

    http://www.cancer.gov/clinicaltrials/ECOG-PACCT-1#EntryCriteria_CDR0000472066

    Best wishes to you!

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  • sweeney
    sweeney Member Posts: 353
    edited July 2010

    Hi EJandKJMom,

     I'm in Ontario and except that my tumour was 1.5 cm we sound like we're in the same boat. I'm 39, two little kidlets, etc. Also sounds like our diagnosis' are similar.

     I just heard from my Onc that the Oncotype DX test is now, in the last three weeks, being paid for by the Ministry of Health. So that's amazing news, b/c my husband and I went in there offering to pay for it too. But it's covered now under OHIP. I love universal healthcare.:) Which province are you in? If not Ontario then let me know b/c I'd be happy to give you as much detail as possible so your doctor can make a case for your province to fund it too.

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  • YramAL
    YramAL Member Posts: 1,651
    edited July 2010

    Sweeney-

    Great news to hear that your Oncotype test is being paid for. I, too, was willing to pay for mine out of pocket if I had to, but fortunately that was not the case.

    I would love to keep in touch and see how things go for you. We do have very similar diagnoses. The only difference I can see is that you are 39-I am 50. But I was still told that I was "young" for breast cancer.

    I've PM'd you with my email address so you can email me directly if you have any questions or just want to talk.

    Mary 

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