Advice on running after I get mastectomy

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trailrose
trailrose Member Posts: 219
edited February 2017 in DCIS (Ductal Carcinoma In Situ)

Hi ladies! I have been reading the DCIS forum for days now and decided to join. My story is that I have been getting mammograms since age 33 (I am 43 now) due to my little sister being diagnosed with Stage 3 breast cancer at the age of 27. She tested positive for the BRCA 1 gene mutation and underwent a bilateral mastectomy,chemo,radiation,Zoladex inj. and Tamoxefin. 2 yrs ago she had a complete hysterectomy. She is still here to tell her story almost 11 yrs. later and has 3 beautiful children! Shortly after her positive test result I got tested for BRCA 1 and tested negative. I was ready to have a prophylactic mastectomy if positive. Here I am 10 yrs. later and have been diagnosed with High grade DCIS with comedonecrosis.

I started 2 yrs. ago with pain in the R breast and brought it to my Gynecologists attn. Since those 2 yrs. I have always felt like "something" was wrong with it and boy was I right! In the meantime I decided to have another gene panel done (25 genes!) and waiting on results. Breast cancer runs strong on my father's side. My grandmother and 2 aunts died of it. Two of them were in their 40's! My grandfather died of lung cancer in his 60's and another aunt died of rectal cancer in her 80's.

My BS has recc. lumpectomy with radiation. I looked at him and said I want a bilateral mastectomy. He was supportive of my decision and I meet with the plastic surgeon next Tuesday. I saw what my sister went through. I am scared yet know in my gut that a mastectomy is the right thing for me. So being an avid trail runner (I was training for an ultra trail race) I wanted to know other women's experiences in getting back into it. I thank all of you for being brave, informed and supportive. This is life altering.


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  • DiveCat
    DiveCat Member Posts: 968
    edited December 2014

    When you were tested, were you only tested for your sister's mutation? Do they know if it comes from your maternal or paternal side? There are some cases where there is more than one BRCA-mutations in a family coming from either one or both sides (more common in families of Ashkenazi Jew descent) and so if you inherited one, and your sister another, and you only tested for your sister's mutation you would not have known. Lung cancer and many other cancers etc are not usually flags (the reality is that 1 out of every 3 women will have a cancer dx in their lifetime, and for men it is 1 in 2) but early onset breast cancer (i.e. premenopausal) is. Of course, it is also possible you are a sporadic case, as sporadic cases happen even in BRCA+ families to those who tested negative for the known mutation.

    Are you having reconstruction as well? Or are you still deciding? I had a PBMX with immediate reconstruction with implants. I was not allowed to run for about 6 weeks, and actually started back closer to 8 weeks (I did do other stuff way before that 6-8 weeks though...lots of walking, spinning, elliptical, hiking). I was not an ultra runner, but ran lots of long distances on roads and trails (about 40-55+ miles per week). I had not had any issues getting back to running at all except building back up to it after 2 months off with a return to running program. If you are not having reconstruction, you may be able to return to it sooner. I was back to my full regular routine within 4-5 months, that included those activites already mentioned, plus back to kayaking, scuba diving, yoga, barre, weight training, etc. I don't run as much these days but not because I can't, more because recovering from surgery showed me I potentially had been overdoing the running and now am just trying to me more varied to prevent running fatigue/overuse injury.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Hi Trailrose, Thank you so much for sharing your and your sister's stories. We are sorry for what you are going through, but we're all here for you as you embark on this journey.

    You may also want to connect with others in this thread:

    2014 Running

    Gentle hugs,

    The Mods

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  • trailrose
    trailrose Member Posts: 219
    edited December 2014

    Hello Divecat and Mods! Thank you for your quick replies! You brought happy tears to my eyes.

    Divecat- So I'm waiting on the gene panel. It should be ready in the next 2-3 wks. When I got tested for my sister's BRCA 1 gene mutation they recc. I get tested for others since my Mother's side is of Ashkenazi Jewish descent. I declined due to financial constraints(had to pay out of pocket due to fear of insurance dropping me) Now 10 yrs. later I said test for the 25 gene panel (insurance covers it now) Regardless of the results I will get the BMX. I plan on getting reconstruction as well. And yes let's break the cycle of cancer taking our families. You are an inspiration.

    Wow! You were at 45-50 miles per week of running!?!? I'm not there yet as training was just starting (even though I have been trail running for 10 yrs. but only 20-25 miles a week) I appreciate your input as that gives me an idea of downtime. If I can get outside just to hike I'll be happy. I know everyone is individual but look at you. You're amazing!


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  • LuvLuLu
    LuvLuLu Member Posts: 377
    edited December 2014

    Hi Trailrose - yes, as the Moderators suggested, definitely check in with the 2014 Running thread.  We are all levels of runners, very encouraging and supportive.  Lots of good advice and stories shared!

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  • Bronwen
    Bronwen Member Posts: 17
    edited January 2017

    how are you doing? I'm a triathlete and hiker who had a prophylactic mastectomy and nasty complications in 2008. I'm now qualified for the Ironman 70.3 world championships. There really can be a very active lifestyle post surgery, prividdd one is patient and sensible.

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  • trailrose
    trailrose Member Posts: 219
    edited February 2017

    Bronwen,

    That is awesome that you have qualified for the Ironman 70.3 championships! I am currently on a sailboat with my husband in the Bahamas but still run every chance I get. Sailing is not always cocktails with umbrellas in them! Getting back into mountain trail running wasn't an issue for me at all after I recovered from my surgeries. Like you said be patient and use common sense.

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