Which Chemotherapy??

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BellaDesastre
BellaDesastre Member Posts: 5
edited April 2017 in Triple-Negative Breast Cancer

I am at a complete loss right now. I have seen 3 different oncologists. I have essentially been given two different treatment options and am being told to pick one. How in the hell am I supposed to make this decision? I am getting very frustrated and don't really know where else to turn. I have two doctors telling me they recommend Option 1 and then the third one (who is the most personable and the one I feel the most comfortable out of the 3) telling me that Option 2 is just as good for my situation but it's up to me which one I want.

Option 1: AC x 4 w/ T x 12.

Option 2: TC x 4

A little bit of my background, I am 32 yr old, high school secretary and mother of two young boys. I found my tumor myself during a self exam on February 14th, biopsy done on February 17th showed a small cancerous mass, estimated under 2 cm. I had genetic testing done it all came back negative. Due to my age they recommended I do a bilateral mastectomy and due to the small size of the tumor and the fact that the MRI showed no lymph node involvement they recommended we do surgery first. The surgery was completed March 27 and I choose immediate reconstruction. I'm currently healing from that and now have the markers and such back from my pathology. I am told I am Triple Negative and that there were two tumors coming in at 2.1cm and .5cm which pushes me to stage 2 but there was 0/5 lymph node involvement so it's Stage IIA. I am also told that my pathology report states the tumor has medullary features which two doctors say is a good thing and one says it doesn't really mean anything.

I'm hoping I can find others who may have been in a similar situation and hear how they made their decision.

Thanks,

Jessica

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  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited April 2017

    Jessica, I sorry your going though this. Your so young.Iam much older and did what was suggested.If I could do over I would have had a double masectomy instead of just the one. There are lots of different cases from many people. I would read a lot of them, there stories. It might help with your decision. God bless

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  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited April 2017

    Jessica, I sorry your going though this. Your so young.Iam much older and did what was suggested.If I could do over I would have had a double masectomy instead of just the one. There are lots of different cases from many people. I would read a lot of them, there stories. It might help with your decision. God bless

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  • Jezikah
    Jezikah Member Posts: 93
    edited April 2017

    Hi Jessica,

    I'm sorry I don't have specific advice for your question, but I just wanted to say 'hi' because I'm 33, also had a double mastectomy with immediate reconstruction, and my name is Jessica... I know how hard these decisions can be. I was initially given the choice whether or not to have chemo because I had no node involvement and 2 tumors with the larger being 2cm, and an oncotype score of 20 - my doctor actually recommended I do no chemo at all and just do tamoxifen for 10 yrs (he felt the potential benefit did not outweigh the SEs and possible complications with chemo). But something about it just didn't sit right with me, I actually couldn't sleep it was bugging me so much - so I did some research, got other opinions and called and asked my MO tons of questions. He decided to have my smaller tumor tested (which is NOT standard practice because pathology said they looked the same under the microscope, so then they assume it's a local met and the same as the larger tumor) and found out it was HER2+, so chemo + herceptin was a given at that point. I guess my advice is - educate yourself as much as possible, ask all the questions (none are stupid), advocate for yourself and follow your gut. Good luck!

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  • Paisleyskies
    Paisleyskies Member Posts: 24
    edited April 2017

    Hi Jessica,

    Sorry that you have to be here. First of all there is no wrong answer. You need to do what is best for you and your situation. I am 35 with a toddler and have gone with the most aggressive treatment options. I was diagnosed 15 months ago and am still in active treatment. I just can't sleep at night unless I know I am doing everything I can to be able to watch my little boy grow up. Hugs.

    Keryn

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  • Sam0623
    Sam0623 Member Posts: 110
    edited April 2017

    Hi Jessica,

    My story is very similar to yours. I am 31 years old with 2 little boys, and was diagnosed with 2.5 cm triple negative IDC/DCIS about a week before you (I also don't show any cancer in my lymph nodes). I too went and got 3 different opinions, one from the University of Michigan, but in my case they all recommended AC-T. The first oncologist I saw also mentioned TAC, but ultimately her recommendation was AC-T. I think you will find that is what most of the ladies here have also had. It is a tough decision, as the A portion of the AC can damage your heart, but ultimately I decided to go with their recommendations and get the most aggressive treatment available. I also asked to get an additional chemo with my Taxol to be even more aggressive. As others have said, there is no wrong answer, just what you are most comfortable with. I wanted to feel like I did everything I could to get rid of this.


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  • BellaDesastre
    BellaDesastre Member Posts: 5
    edited April 2017
    Thank you all so much for your kind words, my thoughts and prayers are with you all as well!

    I placed a called into the Doctor that recommended TCx4 to try and get some more clarification on why he thinks this would be as good of a treatment as the AC-T because I did read a study and I understood the comparison to be between TCx6 vs. AC-T not TCx4. He did say that sometimes he just has better feelings about one treatment over the other with that individual patient so who knows sometimes I guess Doctor's have gut feelings too and he's maybe trying to avoid over medicating(which would make sense as to why my PC would recommend him because she's a less is more Doctor as well) I'm also going to ask about the pathology report and which tumor was tested, as well as find out if I should have the other one tested. (I never even thought of that, so thank you @Jezikah for that recommendation) All the Doctor's mentioned the fact that my tumor has medullary features. Two said that's a good thing and then the one said they didn't really have any evidence to support it either way it is just a thing. My sister read an article asking me to have the tumor tested for a certain type of protein to determine if it's medullary vs not but the Karmanos doctor didn't seem to think that was needed.
    I do have concerns about the heart damage as well as the increased risk of leukemia on A. My grandfather had a lot of heart problems and my father has some as well. They did do an echo and I assume everything is normal because they haven't said anything yet.

    It was so much easier to decide which surgery to go with, why can't this be an easy clear choice too?!?

    @Sam0632 I'm curious, are they doing Chemo first for you before surgery?
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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited April 2017

    Howdy! I was diagnosed at 34 2 years ago. My MO recommended AC T chemo, and gave me the studies showing that it is slightly more effective for young women. I will.look for.them to post.here. That said, TC is very effective, and if you have a heart problem, its may be your best option. In addition, I believe that it is the Cytoxan that had the risk of leukemia, not the A, but I can't locate that study off the bat. Eith er way, the risk of leukemia in 10 years vs death by breast cancer right now made the decision for.me. YMMV, and all the best! There is.no wrong answer.

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  • Sam0623
    Sam0623 Member Posts: 110
    edited April 2017

    Yes, I am doing chemo before surgery. Some doctors like to do it that way if you are going to get chemo regardless so they can see how the chemo is working and they don't have to rush you into surgery. It did freak me out at first, but I finished my 4th AC a week ago and my tumor is basically gone already. I am also planning on having a double masectomy despite my genetic testing being negative. No one has made any recommendations about surgery at this point, but I feel better about my decision that your doctors recommended it. There does seem to be a small benefit to younger women like us having the more aggressive surgery.

    Are you in Michigan? My bosses sister has been treated for breast cancer twice (not triple negative) and has been very happy with the care at Karmanos.

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  • BellaDesastre
    BellaDesastre Member Posts: 5
    edited April 2017
    @littleblueflowers thank you. I would really appreciate that. The MO that I like the most told me to do as much research that I can and ask him as many questions as possible.
    @Sam0623 not a single doctor I talked to said I was being to aggressive with the bilateral mastectomy. So I felt really good about that decision. I just wish I had the same feeling about which Chemo treatment to choose. I did see a Doc at Karmanos and he was very good and knowledgeable!! The only reason we won't be going with him is simply because the other MO is closer to my house and I like him just as much and he's willing to do whatever treatment option we choose. Essentially they told me right now they have no reason to believe there is anymore cancer in my body so we're just treating the chances of it coming back which is making it harder to decide.
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  • Reina_de_los_changos
    Reina_de_los_changos Member Posts: 27
    edited April 2017

    Hi Jessica,

    I'm sorry you're dealing with this shit! It really sucks ass...

    I finished chemo 7 weeks ago, and can tell you what I did, but can't offer advice. My doctor used to quote protocol when I asked him questions, and would go back and look things up for me too.

    I had two small tumors in my left breast, as well as 1 node involvement. I was Stage 2B, triple negative, not genetic. I had a unilateral mastectomy first (no reconstruction), followed by chemo 6 weeks later. I went through 4 rounds of AC, followed by 10 rounds of Taxol. I didn't make it to the recommended 12, but my oncologist was comfortable with how far I had gotten. And I was pretty impatient to be done!

    Good luck to you, and hang in there! You'll be over the rainbow like I am pretty soon!

    Hugs,

    Dawn

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  • BellaDesastre
    BellaDesastre Member Posts: 5
    edited April 2017
    @Reina_de_los_changos. Thank you. Congratulations on making it over the rainbow! I'm going to use that analogy from now on, I love it! I am a high school secretary so when I first got my diagnosis I immediately made a binder for all important information and we decided we couldn't put "Breast Cancer" on the binder so my sister and I decided to call it "The Boob Cold". I still couldn't put Boob on the binder and go to work so it is titled "The 'B' Cold" with a big pink ribbon. So I think it now needs a big rainbow added to it!
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  • yodez75
    yodez75 Member Posts: 35
    edited April 2017

    Hello!

    I was diagnosed at 40 with TNBC. Stage 2A no lymph node involvement, my tumor was 4.5 cm. Total left mastectomy, no recon yet. I had AC x 4 and Taxol x 12 with tri-weekly Carboplatin. Very aggressive treatment for a very aggressive cancer. It was rough, but given the choice, id do it all over again. Knowing that i hit this with everything i could helps me feel better about my future. I also had an echo before starting treatment and I worry about heart damage as I also have a strong family history of heart disease. I look at it as there are many meds and treatments on the market for heart disease...us TNBC patients only have chemo/dad's. Throw everything you can at it is my opinion. I know it's a hard decision. I'm praying for you to have peace with your decision. Best of luck!!

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  • BellaDesastre
    BellaDesastre Member Posts: 5
    edited April 2017

    Thank you all so much. I start treatment tomorrow. After hours and hours of agonizing decisions and research. We choose TC x 4. My MO is extremely confident in his recommendation to forgo the uber intense treatment. The features of my tumor, while yes is considered triple negative were still very very positive in that there was no node involvement, the pathologist noted medullary features, which they have very little reasearch on but the research they do have all seems very positive, and the margins and nipple of the affected breast was clear.

    I am so grateful for all of your help in making this decision. It was most definitely the hardest one I've ever had to make but I feel good about my decision and I feel good about being on the way to putting this chapter of our lives behind us. As I'm sure we all pray, for good!
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