Young & trying to figure out if I need chemo

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jennyschu
jennyschu Member Posts: 2
edited June 2014 in Chemotherapy - Before, During, and After

Hi everyone,

I was diagnosed 2 months ago and this is finally my first post! My decisions have been fairly straightforward up until now, but this week I'm facing a tough question about whether or not to do chemo.

My tumor is ER/PR+, Her2-. Grade 1. The imaging originally showed it as 1.5cm, but I had a lumpectomy 3 weeks ago and it turned out to be 3.5cm, making it stage 2. 7 lymph nodes were removed and all were clear.

I'm only 32 years old and that combined with the 3.5cm tumor size makes me think I should seriously consider chemo. I am going to meet with my oncologist this week to discuss, but my issue is she doesn't like to discuss specifics with me and I very much want/need to be an active participant in this process. She told me before that she doesn't really think it's necessary, but now that we know the tumor is bigger than expected, she concedes it's a gray area. I insisted on gene testing (don't think she would have even brought this up had I not asked) -- I wanted the Oncotype DX test which seems to be the standard, but she told me about the Symphony test (previously known as Mammaprint) and I went with that. The results for that should be back soon. I'm also going to try and get her to go through the computer program Adjuvant! with me in the office (doubt she will be thrilled with that idea, but too bad).

Obviously I'm on the search for a different oncologist that I can relate to better, but I'd really appreciate hearing other people's experiences who have been in similar situations regarding chemotherapy. Anyone else out there have a tough time deciding on chemo? What decision did you make? Are you happy about it or do you have regrets?

Ultimately I feel like this decision will be mine -- none of my doctors are insisting on anything one way or the other right now. I don't want to go through chemo if I don't have to, but I don't want to forego it if I need it.

Any advice/thoughts/experiences would be greatly appreciated! Help! I'm so stressed about this whole part of it.

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Comments

  • PatinMN
    PatinMN Member Posts: 920
    edited July 2013

    Jenny, I had a hard time deciding whether or not to do chemo, but for very different reasons. My invasive tumor was small (5mm) but I am Her2+. Herceptin is recommended for tumor size 6mm or larger. However, when my oncologist brought up the statistical charts on his computer, I had a 25% chance of recurrence without Herceptin. And you don't get Herceptin without chemo. So I went ahead and am glad I did. I used cold caps to save my hair, and when I found out that was possible it made the decision more palatable.



    I hope your symphony test results will help you make the decision. I agree it would be a good idea to find a new oncologist who can help you make your decision with the data that's available to doctors - my oncologist was reallyngreat about that. Good luck.

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  • sb1999
    sb1999 Member Posts: 9
    edited September 2013

    Jennyschu, I am 32 years old too.  I was diagnosed August 1, 2013.  And gosh it must have been one of the most horrible news I hear.  With saying that, the news of chemo terrified me.  I didn't handle that one too well...but I looked at my 5 year old and knew that I cannot give up on him.  I cannot give up because of fear and not see him grow up.  Find your stregth and will to live...you will know what is best for YOU! Only you have the power to make the decision.

    My worst fear is of course the hair loss (which I have been wig shopping already) and infertility.  My husband and I were going to try having kids this year.  By God's hands we decided to wait another year, thank goodness for that, because I cannot imagine going through this being pregnant.

    I have been back and forth with the decision to take chemo or not...but I want to live a full and complete life.  I know that with or without chemo this chance may not be real.  Accidents and deaths happen everyday.

    Different oncologists will have different options for you...find the one that fits you and makes you comfortable.  Then decide.

    Take care and good luck! Let us know your decision if you have not already decided. :) XOXOXO!

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  • christina0001
    christina0001 Member Posts: 1,491
    edited September 2013

    Jenny I was in a similar situation with radiation. As far as radiation went I fell into a "gray area." It happens. My radiation oncologist is a total sweetheart but I felt like I just wasn't getting the information I needed to make a decision. So I got a second opinion and the radiation oncologist I saw was able to break things down in a very specific way, gave me numbers to compare and think about, and it was a huge help to me in making a decision. So I would definitely encourage you to go ahead and get that second opinion. 

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  • KBeee
    KBeee Member Posts: 5,109
    edited September 2013

    I am older than you. I am 43, but that is still pretty "young" in the breast cancer world. I have 3 kids...9, 11, and 13. Before I even met with my MO, I knew that I wanted to be aggressive in treating this (and do chemo)'because I want to have no regrets or what-ifs. Mine was 2cm, and not in the sentinel node. Mine is grade 2. I also have a close friend who had a low oncotype score, yet had a recurrence. My MO agreed with me. We both agreed that if I was 15 years older, hormone therapy alone, rather than in addition to, would be the treatment of choice. For me, this was the decision that I knew gives me the best chance to be there for my kids, as well as have the best peace of mind. I start on Sept. 20.



    There no right or wrong answers, and it is a very hard decision based on a lot of personal factors. I definitely encourage you to get a second opinion (perhaps even a third) and perhaps get both the oncotype and mammoprint score to give you all of the tools you need to make the best decision for you, and do not let others question your decision.

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  • batcatlady19
    batcatlady19 Member Posts: 138
    edited September 2013

    I'm a little older (early 40s) & my tumor was grade 3 & mostly hormone negative, thus pretty agressive, so chemo was always on the table. Also, I'm happily childfree so fertility effects aren't a concern. All of this made chemo an easy decision for me. I've had 1 round of 4 so far, & while it does suck, I'm sure it could be worse. Looking at the recurrance stats, I felt that chemo gives me a better chance at a long, healthy future. I'd rather go thru a few sucky months now than worry for years about cancer coming back.

    I feel like my doctors suggested chemo both bec. of my tumor's aggressiveness & bec. of my age. If I'd been 10 years older, they might have been more reticent to talk about chemo. Younger women tend to be stronger & better able to deal with chemo, & we have a lot more to gain from it -- we have a lot longer to live without cancer. There's something to be said for that aspect.

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  • crazyride43
    crazyride43 Member Posts: 154
    edited September 2013

    Hi Jenny,

    I was 43 at diagnosis, so quite a bit older, however chemo was never discussed as optional for me.  My tumor was a little larger - somewhere between 4cm and 5cm and grade 2 - and I had chemo prior to any surgery even though node biopsies were negative.  By the time I had surgery there was hardly any tumor left, and my nodes were negative.  Chemo wasn't fun, but I'm glad I did it because who knows if any little cells had escaped into my blood stream before we found this tumor.  Cancer can be sneaky, and my MO felt that chemo gave me the best possible chance to not have to deal with this again.  No guarantees, but I feel like I did everything I could.

    Wishing you peace in making your decision!

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