Meet May

May Steinhardt, Patient / Survivor

Plymouth, Wisconsin

May's Story

I had skin cancer removed from my eyelid in 2009, but I was otherwise a healthy vibrant woman when I had my world rocked by colon cancer at the age of 46 on Oct. 8, 2010. I was diagnosed as stage IIB and told I would need chemo as the cancer perforated through the wall of my colon.

I went through six months of chemo, three different regimens. When I was through with chemo in May 2011, I received genetic testing/counseling and in July 2011 I was diagnosed with Lynch Syndrome.

Through advice with my Lynch specialist at the Mayo Clinic in Rochester, Minn., it was recommended I had a hysterectomy. The other advice given to me was that sooner or later Lynch patients need to have their colon removed,  so it would be easier on me then (47 years old at the time) versus at age 65.

I was told it would reduce my risk of getting colon cancer back from 87 percent down to nil. And to my husband and me, we couldn’t ignore the statistic.

On Sep. 2011, I had a hysterectomy as well as an ileal pouch-anal anastomosis (in layman’s term – a J pouch). I had a temporary ostomy bag for three months. In Dec. 2011, I had my takedown reversal. That surgery was completely life-changing for me. My husband and I now realize having a J pouch was the worst decision we ever made.

Through sharing my story of colon cancer and Lynch Syndrome I call myself a “passionate advocate” but quite honestly the best thing I love being called is “Mom."

And as “Mom” the saddest thing through this journey of mine was when our children both tested positive for Lynch (our son was 18 at the time and our daughter was 12). Both our kids received genetic counseling at Mayo and so the life of a Lynch family began.

One thing I know for certain, this mom is not going to allow Lynch to take control of my children! There is no way I want my kids to live the kind of life I do, without a colon. I have Great Faith in Him Above. I have an amazing husband who is the rock to my foundation, and with two beautiful children, I know all will be well.

May's Advice

Have a voice and be your own advocate when it comes to your health care providers. Learn from others who have been through procedures and chemo personally, so you can hear the pros and cons. Don't just go by what the doctor tells you. Doctors will give you text book answers whereas the patient will tell you how it "truly went."

JOIN ONE MILLION STRONG

If you’ve been impacted by colorectal cancer, join One Million Strong by sharing your story! And, get involved! Get behind a cure!