Finding someone with similar dx

Mesa2009
Mesa2009 Member Posts: 10
edited March 2014 in Breast Cancer #1
Hello

A friend and breast cancer survivor told me about this discussion board and I thought I'd give it a try.

I was dx with stage 1b bc (grade 2, estrogen/progest + and HER@ neg., lymph node a microscopic amount in one node) and now I need to make an important decision. Should I have chemo or not? Got three opinions and event had the oncotype dx test done and they stated that I MAY not benefit from chemo but if I wanted extra reassurance I can have it. also according to the oncotype dx test I would only benefit 4% from chemo. However, everyone said I would need to take tamoxifin for 5 yrs.

They keep saying it is ultimately my choice. I just want to know that if anyone out
there has had a similar experience. what was your choice and how have you dealt with
your choice.

HELP!

Comments

  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #2
    Similar diagnosis
    First welcome, Mesa -- the ladies and men on this board are incredible resources for just about every diagnosis there is, so you've found a really great place.

    My diagnosis was somewhat similar to yours: bilateral breast cancer, invasive ductal in one breast, invasive lobular in the other, total of 4 tumors, none larger than 2 mm. ER+/PR+/HER2-. No lymph node involvement.

    I refused the Oncotype test, because I knew I wanted to do chemo. My oncologist ran a computer simulation that estimated that chemo might lower my chances of recurrence by 3-4%, and I said great, when do we start?

    I had two main reasons: Most importantly, I couldn't live with myself if the cancer were to come back down the road, and I was left wondering, what if I'd done chemo? I needed to do everything I could.

    My other consideration was age. I'm 40, so have many estrogen-filled years ahead of me before menopause, even after the 5 years of Tamoxifen.

    You'll hear soon from other women here who chose chemo or didn't -- it's such a personal choice, and there are lots of reasons either way. Chemo was probably the most difficult thing I've ever done in my life, but it's doable -- at no time did I think, "I can't do this." For my life and my own personal situation, I'm proud of my decision.

    Please come back often, Mesa, and bring all your questions.

    Traci
  • sherria49
    sherria49 Member Posts: 126
    #3
    Personal decision
    Hi Mesa! I have a very similiar dx as you. Although, no lymph node involvement. My onc was explaining the oncotype dx test to me and said it may or may not help in my decision. I told him, "No need for the test, I'm having chemo!!" My decision was based on, even a 1% chance of reoccurence was too high for me. I had my port placed at the time of reconstruction, and never even considered NOT having chemo. I have my first chemo (Taxotere/Cytoxan) 4 cycles over 12 weeks tomorrow. I will be starting Tamoxafin after chemo is done.

    This is a very personal decision for each of us. Please seek the experience of others here, and remember this is YOUR decision. Have you already had surgery??

    ((((((Hugz))))))
  • roseann4
    roseann4 Member Posts: 992 Member
    #4
    sherria49 said:

    Personal decision
    Hi Mesa! I have a very similiar dx as you. Although, no lymph node involvement. My onc was explaining the oncotype dx test to me and said it may or may not help in my decision. I told him, "No need for the test, I'm having chemo!!" My decision was based on, even a 1% chance of reoccurence was too high for me. I had my port placed at the time of reconstruction, and never even considered NOT having chemo. I have my first chemo (Taxotere/Cytoxan) 4 cycles over 12 weeks tomorrow. I will be starting Tamoxafin after chemo is done.

    This is a very personal decision for each of us. Please seek the experience of others here, and remember this is YOUR decision. Have you already had surgery??

    ((((((Hugz))))))

    My dx was similar.
    I would benefit by 3% with chemo based on my onco score. Mine was not in my lymph nodes. I decided against chemo after much consideration. I know this is a difficult decision. My only advise is to listen to your "gut". My onc wanted to be sure that if the cancer came back that I wouldn't regret my decision and feel I had not done everything I could. I felt it could come back either way and wasn't willing to risk the damage that chemo could cause to someone who is 58 years old. I may have decided differently had I been 10 years younger. There are risks either way.

    Roseann
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #5
    Very similar
    My diagnosis was Stage I, estrogen/progest+, HER2 neg. Had lumpectomy on 10/12 with clear margins and negative lymph nodes. I opted to have the Oncotype to help me make a decision about chemo, and my score came back at 20, which is intermediate risk. I haven't fully discussed with my oncologist (my appointment is this Friday), but I'm leaning toward getting the chemo. I'm not a big risk-taker and just want to make sure I do everything possible to only have to fight this battle once.

    I also posted a discussion thread about this and got some great responses. I'm sure you will as well.

    Everyone's risk tolerance is different, and of course the final decision is up to you. Try to clear your mind of as much chatter as possible, and then go with what feels right to you.

    I will be sending you positive thoughts and best wishes for ultimate success, no matter what you decide.

    Take care,
    Cindy
  • Calleen
    Calleen Member Posts: 411
    #6
    cindycflynn said:

    Very similar
    My diagnosis was Stage I, estrogen/progest+, HER2 neg. Had lumpectomy on 10/12 with clear margins and negative lymph nodes. I opted to have the Oncotype to help me make a decision about chemo, and my score came back at 20, which is intermediate risk. I haven't fully discussed with my oncologist (my appointment is this Friday), but I'm leaning toward getting the chemo. I'm not a big risk-taker and just want to make sure I do everything possible to only have to fight this battle once.

    I also posted a discussion thread about this and got some great responses. I'm sure you will as well.

    Everyone's risk tolerance is different, and of course the final decision is up to you. Try to clear your mind of as much chatter as possible, and then go with what feels right to you.

    I will be sending you positive thoughts and best wishes for ultimate success, no matter what you decide.

    Take care,
    Cindy

    Mine
    Was stage 2A, ER/PR+ Her 2 Neg, no lymph nodes, nucular grade 2. I had bi lateral w/ immediate reconstruction. My onco score was 10. I don't have to do chemo and I have chosen not to take tamoxifen. I know I am taking chances by my choice but I do have peace of mind of my choices and that is the end result. I trusted my gut.

    Calleen
  • MAJW
    MAJW Member Posts: 2,510 Member
    #7
    To CHEMO OR NOT
    I wanted ANYTHING and everything I could throw at this beast to try and prevent this beast from returning...I wanted no regrets down the road, but it is such an individual choice and not an easy one.....Even with the chemo there's no guarantee it won't return, but once I was given the odds of with chemo and without, it was a no brainer for me......chemo isn't easy, no day at the beach but very doable.......I finished in August and finished 33 radiation treatments almost 4 weeks ago.....I am feeling like a noraml human being again!!!!!!!!

    I wish you well in making your decison.......
  • Mesa2009
    Mesa2009 Member Posts: 10
    #8
    Calleen said:

    Mine
    Was stage 2A, ER/PR+ Her 2 Neg, no lymph nodes, nucular grade 2. I had bi lateral w/ immediate reconstruction. My onco score was 10. I don't have to do chemo and I have chosen not to take tamoxifen. I know I am taking chances by my choice but I do have peace of mind of my choices and that is the end result. I trusted my gut.

    Calleen

    Thanks for the advise
    Thank you for responding. Some people may say it is a no brainer but when an option is given to you it is so much more harder. Throughout my journey I have based my decisions on my gut feeling. Something that I have to say it's easy to do. They (doc.'s & other survivors) say that the more information you have, the better decisions you will make. However in my case I don't feel it has been that clear - It hasn't been like yes it is highly recommended or no it is not recommended based on information. Its been more like well you are in that "gray area" and the decision is yours.

    Your oncotype dx score of 10 - WOW that is fabulous. Perhaps this made your decision a little easier for you?? Mine was 22 which was catergorized as "undetermined" if I would benefit from chemo. Again thrown back into that gray area.

    So you decided to not take tamoxifen what was your percentage of ER/PR+? or your ER/PR score on your onco report? Mine was 9.2 PR and 9.5 ER and in my pathologist report it was 95% ER/PR level. which I guess it is very high.

    I believe this is the only part of my treatment that I am not on the fence. I will give it a try. What was your rationale behind your decision?

    Again, thank you Calleen for responding. It does help to hear other people's stories.

    Mesa
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #9
    Hi, Mesa, and welcome. My
    Hi, Mesa, and welcome. My dx was almost identical to yours and included the microscopic cell in the lymph node. I wasn't given a choice of whether or not I should take chemo. My oncologist stated that it was a part of her recommended treatment. I did 4 taxotere/cytoxan infusions and am currently doing 34 radiation treatments. Then, I will take, more than likely, Arimidex for 5 years. It has all been very doable. Good luck in making your decision. It is a very personal decision and must be made by YOU. Take care and keep in touch with us here.
  • Mesa2009
    Mesa2009 Member Posts: 10
    #10
    cindycflynn said:

    Very similar
    My diagnosis was Stage I, estrogen/progest+, HER2 neg. Had lumpectomy on 10/12 with clear margins and negative lymph nodes. I opted to have the Oncotype to help me make a decision about chemo, and my score came back at 20, which is intermediate risk. I haven't fully discussed with my oncologist (my appointment is this Friday), but I'm leaning toward getting the chemo. I'm not a big risk-taker and just want to make sure I do everything possible to only have to fight this battle once.

    I also posted a discussion thread about this and got some great responses. I'm sure you will as well.

    Everyone's risk tolerance is different, and of course the final decision is up to you. Try to clear your mind of as much chatter as possible, and then go with what feels right to you.

    I will be sending you positive thoughts and best wishes for ultimate success, no matter what you decide.

    Take care,
    Cindy

    Positive Thoughts
    Hi Cindy

    thank you for responding. Decisions, decisions, decisions, . . . well I wish you the best as well. I guess I am not much of a risk taker myself. This is probably why its been so hard to make a decision. It would have been nice to have had a low score on my as well as your onco report, but it is what it is, right? Keep me posted on what your oncologist said.

    Best wishes!
  • Mesa2009
    Mesa2009 Member Posts: 10
    #11
    MAJW said:

    To CHEMO OR NOT
    I wanted ANYTHING and everything I could throw at this beast to try and prevent this beast from returning...I wanted no regrets down the road, but it is such an individual choice and not an easy one.....Even with the chemo there's no guarantee it won't return, but once I was given the odds of with chemo and without, it was a no brainer for me......chemo isn't easy, no day at the beach but very doable.......I finished in August and finished 33 radiation treatments almost 4 weeks ago.....I am feeling like a noraml human being again!!!!!!!!

    I wish you well in making your decison.......

    Hello
    Congratulations on your achievements. I am sure you are thrilled to cross that bridge in your journey. You are absolutely right, chemo is no walk in the park BUT was is comforting to hear you say it's "doable"

    I want to be where you are at and say the same thing soon - "I am feeling like a normal human. . ."

    thank you for your wishes. These are definitely also welcomed!
  • Mesa2009
    Mesa2009 Member Posts: 10
    #12
    MyTurnNow said:

    Hi, Mesa, and welcome. My
    Hi, Mesa, and welcome. My dx was almost identical to yours and included the microscopic cell in the lymph node. I wasn't given a choice of whether or not I should take chemo. My oncologist stated that it was a part of her recommended treatment. I did 4 taxotere/cytoxan infusions and am currently doing 34 radiation treatments. Then, I will take, more than likely, Arimidex for 5 years. It has all been very doable. Good luck in making your decision. It is a very personal decision and must be made by YOU. Take care and keep in touch with us here.

    DECISIONS
    Thank you for your response. My oncologist also stated that I would also recieve 4 taxotere/cytoxan infusions. I guess that seems to be the most common prescription. I know everyone is different but I am curious how did you do with taxotere/cytoxan? What advise can you give me if I choose to do chemo?

    I hope your radiation treatments are going well. AND thank you for your positive attitude about how it can be doable! I think I just need to keep hearing this over and over!

    Take care - hope to hear from you!
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #13
    Mesa2009 said:

    DECISIONS
    Thank you for your response. My oncologist also stated that I would also recieve 4 taxotere/cytoxan infusions. I guess that seems to be the most common prescription. I know everyone is different but I am curious how did you do with taxotere/cytoxan? What advise can you give me if I choose to do chemo?

    I hope your radiation treatments are going well. AND thank you for your positive attitude about how it can be doable! I think I just need to keep hearing this over and over!

    Take care - hope to hear from you!

    I did very well with minimal
    I did very well with minimal side effects. I worked through treatments. I took my treatments on Thursday's and took Thursday and Friday off from work. I also received the Nuelasta shot the day after chemo. I probably had worse side effects from it than I did from chemo...basically some bone pain around day 3. I controlled the pain with Tylenol every 6 hours. I did lose my hair around day 14 from the first transfusion. That, to me, was the hardest part of the chemo. I continued to exercise a minimum of 3 days and usually 5 days per week. I do Jazzercise which is an aerobic workout that includes strength training. My oncologist said I probably did so well because I did exercise. Who knows. We are all different but we are all getting through this and slaying the beast. I wish you well and I know it's tough to make the decision. Only you can do it. Good luck!

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