Hello All! - Re: Lymphedema that the doctors told me I couldn't/didn't have and the consequences

I am posting to this page because it's a large and active group of breast cancer survivors but perhaps theres are more places or better places to post this so I'm reaching out to @colleenyoung to share at will. (I'd do it myself Colleen but I'm not very good at navigating online, ha ha).

My post is regarding my Breast Cancer Experience and Lymphedema.

I have been lucky because I caught my cancer early, first as LCIS and then as Stage 1 Lobular Invasive, with no lymph node involvement. I opted for bi lateral mastectomy and am cancer free now at four years last month. I had a few complications and I've had the usual worry and stress and decisions we have to make to hopefully get and stay healthy. What I didn't realize that 'breast cancer, the gift that just keeps giving' would throw me a curve ball and I'd like to share that information to hopefully help other women avoid the mess I've just gone through.

During my surgery my surgeon removed only two lymph nodes from my right side (the invasive cancer side) and one lymph node from my left, where there had been LCIS two years earlier. My lymph nodes were clear but during my surgery there was a surgical error that resulted in damage and large hematoma (bruise). It resolved slowly but I noticed swelling in my hand and arm on that side. I had a hard time getting my doctors to acknowledge it because they said I was at very low risk for lymphedema. I persisted and had PT and took it upon myself to get massage therapy (which my medical group offered at the time). After a year my oncologist finally acknowledged the swelling problems and I had 'revision' surgery which removed a considerable amount of tissue under my left armpit and the swelling stopped. I never had to use the compression sleeve I had purchased and continued with massage therapy for several more months and continued my own personal lymphedema management.

On November 14th I woke up with a very, very small cut and a very swollen hand, went to the ER and was sent home with a splint and an x ray showing no broken bones (that was their first assumption despite me telling them of my lymphedema.) At my second ER visit (different hospital) a couple hours later I was admitted to the hospital for 6 days on IV antibiotics and went into sepsis. I didn't know it was possible to have a worse experience than breast cancer but I may have found it.....sepsis. My experience was random, we still don't know what the cut was from (I don't know either) or why it escalated in a few hours to a life threatening experience.

I am a little over a month out from making it through this and I'm working on trying to understand how to move forward. I have been to numerous doctors and follow up appointments and credit the good doctors I have had in patching me back together. But still, the most disappointing encounter I have had is with the surgical breast team who still don't acknowledge how little support they provided or are providing.

Moral of my story - I should NOT have gotten lymphedema (according to statistics) and I should not have gotten sepsis (although there a bit of randomness to sepsis). But I did and the surgical team where I was treated have now discontinued massage therapy, only offer limited Physical Therapy and are still telling me I was 'low risk'.

My hope is that no one else has to experience what I have gone through the past month (although my oncologist says that it was not so long ago the leading cause of death in the world) but if you are facing breast cancer surgery involving your lymph nodes or if you already have.............taking a long look and researching everything you need to do to remain safe from or with lymphedema is well worth the time. My doctors kept pushing my concerns aside but deep down I must have known my own body and I wish I had been even more proactive in caring for my lymphedema. Not to make anyone facing breast cancer surgery even more distressed, but this is a real problem that isn't managed well yet by the process.

Cindy (who will be wrapping herself in bubble wrap every day in the future)...........