Lumpectomy Incision Concern - Tamoxifen Advice

MichelleLee
MichelleLee Member Posts: 24
edited June 2014 in Pain

Yikes...I had a Lumpectomy on 1/8/13 for 2 Inv Duct tumors and DCIS all on the left. BS said the incision would be about 2"...came out of surgery with a 5" incision starting at the nipple going straight up ending inches below my shoulder. Good news, path report showed clear margins and the 5 lymph nodes removed were all negative. Almost 3 weeks post surgery, still in a lot of pain...worst in my armpit and pain goes all up thru the inside of my arm down to my hand when I reach out or up with my arm. Incision still looks quite welted, puffy, stings all the time, but not red. Is this all normal or should I be worried? I see my RO this Wednesday to get tattooed and measured for 6 1/2 weeks of radiation. Hope he can tell me things are looking and feeling normal...also MO wants me to start Tamoxifen after radiation, but I am considering not doing it because of all the horrible side effects. Advice?

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited January 2013

    Did the surgeon discuss any the side effects of the surgery itself like lymphedema or pain from nerves being knicked during your node removal or infection? They should have. My surgeon barely mentioned either, but I got both.

    I would call your surgeon right away Monday morning.

    Because you also had IDC, I assume that Inv Duct tumors means IDC, I would read up on basic information on cancer and treatments at NCI, breastcancer.org, and cancer.org. They have good basic information on cancer, treatments, side effects, etc.

    Make sure your medical oncologist is aware of any and all health issues you have related to cancer or not.

    You don't mention what Stage cancer you are at, if you are hormone positive or her2 positive. I think it would be good to post in whatever stage you are at, also.

    When  you talk to your surgeon about your pain issues, be very very specific. I found I had to be very specific and write them down when I discussed them with my surgeon. Also get your doctor's notes from all appts so you know exactly what  your dr's are thinking.

    I am not a doctor, but when I experienced pain symptoms similar to that, I found mine were not normal.

    I am sure there will be more people coming along to respond as well.

    In the meantime, if you can look up the information without freaking yourself out, read about LE, post mastectomy pain syndrome (don't let the word mastectomy confuse you, a lumpectomy is a form of mastectomy and the PMPS covers a lot of territory). Check out the different postings and boards on here. But don't freak out and assume the worst, ok? Just do it as a research, not a foreboding of your own health issues.

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  • Annette47
    Annette47 Member Posts: 957
    edited January 2013

    I think cinnamonsmiles gave good advice.  About the pain up and down the arm, it could be nerve pain but could also be cording so you might want to look that up as well.   I had some mild cording pain which started about 2 weeks post surgery and is almost gone now - just one tiny spot that still hurts a bit when I extend my arm over my head, but it was much worse a couple weeks ago.  I didn't have any trouble with either incision though ...

    About the Tamoxifen, my MO told me that a) in his experience younger (<50), pre-menopausal women tend not to have very many problems with side effects and b) the serious ones are VERY rare.    He also said the more common ones usually resolve quickly once you stop taking it, so maybe talk to him about at least giving it a trial and seeing how well you tolerate it?   I know two people personally who have taken it for several years now.  The younger one (43) has had ZERO problems; the older one (52) had severe hot flashes but was put on Effexor and is doing well with it now.

    Hope you feel better soon!

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  • MichelleLee
    MichelleLee Member Posts: 24
    edited January 2013

    My BS did not talk of lymphedema or nerve damage. I am going to call tomorrow morning and ask to be seen and request PT for the cording. After reading up on cording, this sounds exactly like what I am experiencing. My whole inside arm feels bruised when touched. I will also reconsider taking Tamoxifen after so many others have encouraged me to at least give it a try...thanks for the advice and I wish you good health!

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  • maltomlin
    maltomlin Member Posts: 343
    edited January 2013

    Hi. I'm almost 5 years out from dx but your comments struck a cord. After my surgery (WLE + node removal) it was a long, long time before the pain/discomfort went away. It still hasn't completely.

    Cording was a problem for quite a few months and then it was just general pain/discomfort.

    I took my grandchildren ten tin bowling last year, 4 years post op and it was so painful. I took them again last month and 'no problem'.

    Although we're ok now, we're always aware of problems in that area. Take care.

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