Need help making a decision on treatment

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Ktjay
Ktjay Member Posts: 64
edited June 2014 in Chemotherapy - Before, During, and After

I just saw my oncologist, I have stage IIB, T2N0, Her2 negative, invasive lobular carcinoma, I have had a bilateral mastectomy and reconstruction done.  My oncologist recommends arumidex for the next 10 years, but he is also recommending 6 treatments, 1 every 3 wks) of Cytoxan and taxotere.  He also wants to put a port in.  I know my surgeon said about just doing the arumidex and I was wondering what your thoughts were on the treatment.  Arumidex versus Arumidex and Chemo.

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2014

    Surgeons know surgery, not specific cancer treatments. I was IIA, did four rounds of chemo and then 5 years of Arimidex, so it sounds like the oncologists recommendations are in the right ballpark.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited March 2014

    I'd definitely take the oncologist's recommendation.  Like Ruth said--surgeons know surgery.

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  • curveball
    curveball Member Posts: 3,040
    edited March 2014

    Have you had an oncotype test?

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  • Racy
    Racy Member Posts: 2,651
    edited March 2014

    Hi, I had a very similar diagnosis, had lumpectomy and rads and did TAC chemo followed by Femara (good if you are post menopausal). I agree to get the Oncotype test if you can and also one or two more opinions.

    Good luck and keep us posted!

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  • Racy
    Racy Member Posts: 2,651
    edited March 2014

    ps I did not have a port.

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  • Ktjay
    Ktjay Member Posts: 64
    edited March 2014

    I do not think I have had an Oncotype yet, unless they used my blood from surgery.  I have not had any blood work since.  I think I am just scare of chemo and I have to get over that and just do what is best to survive this.  The port bugs me, but I guess that is better than being stuck each time.  I just have to find positives and focus on that.  It sounds like this is the regular course of treatment for this type of cancer.  Thank you

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  • Bren58
    Bren58 Member Posts: 1,048
    edited March 2014

    I have stage IIB IDC, had chemo and am now doing Arimidex. I think chemo is a pretty standard protocol for stage II. If you have any doubts, get a second opinion from another oncologist.  I knew I could not get out of chemo when 2 oncologists, 2 surgeons and the RO all said I should do it. BTW I did have a port. Most of us were scared of chemo, but the reality for most is that chemo day is usually just long and boring. There are wonderful ladies on these boards that can help and encourage you through it.

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  • KBeee
    KBeee Member Posts: 5,109
    edited March 2014


    The oncotype will tell you the percentage benefit from chemo, and will be your best tool in helping to determine if chemo is the right course for you.  I finished 4 rounds of TC chemo recently.  It was NOT fun, but it was very doable.  I worked during the majority of it and was able to walk several miles each day, which helped, and made it to the majority of my kids school events, sports events, etc.  That being said, chemo does pose its own risks.   I also did not have a port.  In addition to the oncotype, I would suggest a second opinion.  It is a big decision.  I'm sorry you're facing it, but we all understand.  Best wishes.

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  • Ktjay
    Ktjay Member Posts: 64
    edited March 2014

    Thank you, well I get my port on Monday and I have decided to go through with it.  I talked with several doctors who all said the same thing, with stage II and being in a lymph node it is only smart to go through chemo to have the best odds I can have.  I am scared, as I am sure you all were as well.  I am so thankful you responded and you have given me the strength I need to do this.  I am just not going to over think it I am just taking it one day at a time.  I keep telling myself this is what I have to do to have the best outcome.  It is nice to hear you were able to get through most days, that does help.  Thank you all again.


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  • Ktjay
    Ktjay Member Posts: 64
    edited March 2014

    Oh by the way, I asked my doctor about my Oncotype and he said I do not have one I think because I had lymph node involvement or my Her2 was negative, not really sure of his answer but I do not have one.  He said my chemo is a preventative measure that I am currently cancer free, they just want to keep me that way. 

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2014

    You want to do everything you can now so that you never, ever have to do this again. I tried to think of chemo as Navy Seals, working FOR me to kill any terrorist cancer cells that might have invaded my system. We know if cancer cells remain out there, they will kills us for sure. Even though it wasn't fun at the time, I am really glad that I did chemo for the added peace of mind that I did everything that I could. I did have port, and am glad that I did that too, as I didn't want to take the chance of blowing out my veins. Drink lots of water, take your anti-nausea medications as directed. I never got 'sick', but felt like I had a mild case of the flu. I did work all the way through it, and also got some exercise almost every day. Everyone is different, but for me sticking to as normal a schedule as possible helped me survive mentally. (Although if people want to organize and bring you meals a couple times a week or do other nice things for you, definitely take them up on it!!!!!). Best of luck, check in and let us know how you are doing.

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  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited March 2014

    Ktjay,

        I wanted to wish you well as you start chemotherapy.  I had 6 rounds of chemo last summer and it wasn't easy but I did it and glad I did.  Like Ruthbru, I saw chemo as necessary treatment.   I missed a total of 8 work days throughout chemo, mostly for the infusion day because it took so doggone long (LOL).  Working helped me maintain a somewhat normal schedule and was very healthful for me.   I also exercised almost every day.   That doesn't mean that you won't have days when you just need to stay in bed and you definitely need to ask for and accept help.  My dear husband took great care of me throughout treatment and it really made a difference.   I participated in the May, 2013 chemotherapy thread where women going through chemo with me shared information.  You may find that this will be helpful.

        I did not have a port and my veins took a real beating, not just for the infusions, but the weekly blood draws as well.    So if your doctor is recommending a port, go for it.

    All the best to you and if you need anything, just holler.

    MsP

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited March 2014

    Ktjay, I was terrified of chemo.  I told my oncologist that I'd rather be dead than on chemo.  Chemo was not optional for me--I had to do it.  In addition to the 6 chemo treatment I had a year of Herceptin.  I never ever thought I would like going to chemo but I did.  The chemo nurses were fantastic and everyone was so nice.  I will always have fond memories of my treatment team.  I did everything I could (surgery, chemo, rads and arimidex) because if I ever had a recurrence I did not want to feel bad because I hadn't done everything.  Good luck!  We are here for you.

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  • Ktjay
    Ktjay Member Posts: 64
    edited April 2014

    Hi Genny, I was just wondering how you are doing?  I got my port on Monday and it is uncomfortable and sore, but I am sure it will be fine in a couple more days.  I go for my chemo class tomorrow and then I have my first treatment next Thursday.  How is yours going?


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