Waiting.... (just joined this board)

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Sue-T
Sue-T Member Posts: 16
edited February 2015 in Managing Side Effects of Breast Cancer and Its Treatment

Hello to all of you!

I'm Sue. I am 33. I have breast cancer and yesterday I found out it has spread to my lymph nodes too. I am meeting an oncologist on Tuesday, but the waiting to meet, waiting for surgery, surgery being cancelled, waiting again is the most difficult part of my cancer journey so far.

I am estrogen and progesterone negative, HER 2 positive. I have a family history of heart problems and I'm afraid of the side effects of chemo.

I'm happy I caught things early, I'm happy I have a wonderful treatment centre in Edmonton, and I'm happy I have support from family and friends. I am happy to have found this board.

I'm upset that my husband and myself are self employed at a high stress and physical job that I will likely not be able to do too well during chemo. I'm upset I have to worry and watch out for lymphedema for the rest of my life. I'm upset my daughter 1.5 years old has to deal with me being sad and sick and won't be able to understand what is going on.

Any tips anyone has on dealing with chemo side effects would be wonderful. I have heard of people doing "fasts" during the beginning of each chemo... are any of you doing that? Any sharing of any kind welcome...



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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015

    Dear Sue - I'm so sorry you've found yourself in this place and I can truly relate to the issues involved in being self-employed, wondering how much you'll be able to work, etc. That's an extra layer of worry that you sure don't need!

    There are threads dealing with chemo (and all types of treatment, for that matter) which you can read to pick up tips. Once you have a treatment plan in place it's good to hook up with those who are having surgery at the same time, starting chemo around the same time, etc.

    Regarding your lymph nodes and the risk of lymphedema - that was a huge concern for me, too. There is a newer technique that spares the lymph nodes that drain the arm. It's called Axillary Reverse Mapping (a.k.a. "ARM") and it really does help decrease the risk. You may have to ask your surgeon about it; if s/he doesn't do it, you can be they won't tell you about it! Nobody wants to lose business. However, more and more surgeons are learning the technique and I would think that in a city like Edmonton it would be available.

    Good luck to you, Sue. I'm sure someone else will show up soon to provide more tips and support but I hope this helps in the meantime.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited February 2015

    You are so right in describing waiting as most difficult! This is the club nobody wants to join...

    Once you confirm which chemotherapy sequence the oncologist plans, you can go to that forum here & look for specific advice and/or start topics with pertinent questions. Also try the search function to see what others have already posted about their experiences. I certainly did not fast: felt I needed to keep my strength up. Hopefully your clinic will have a dietary person with whom you can consult.

    You will probably be given some type of Herceptin due to your HER 2+ status so you could start researching those agents. Some gals work thru treatment but it might be nice to ease up if you can.

    At some point, when the worst is behind you, consider asking about genetic counseling. Anyone with this disease at such a young age (and with a darling daughter) needs to investigate options for future risk reduction. There is a lot more out there than the basic BRAC 1 & 2 mutations however don't overwhelm yourself with all of that quite yet.

    Know that you may never get lymphedema even with lots of nodes removed. Realizing the possibility of LE should help you take care to avoid it. Lots of us do almost everything we did before and have adopted a few extra healthy habits as a result of our increased awareness.

    Have fun with your little girl this weekend in order to distract yourself. I remember a scenic trip to northern Alberta as a newlywed three decades ago, during summer it stayed light out very late. Do you have tons of snow or is it just cold?

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  • Sue-T
    Sue-T Member Posts: 16
    edited February 2015

    Thank you so much Hopeful8201 and vlnrph... I will find out all of the info I can on my treatment and check the appropriate boards.


    It is snowy... pretty cold, but our mountains are beautiful :).


    Sue

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