Can we undo my surgery please?

When I had my breast cancer surgery the sentinel node was tested and came back with microscopic traces of cancer. It was then deemed necessary to have an Axillary Node Dissection where they take out a lot of lymph nodes in your arm pit to see the possibilities that the cancer has spread further in your body. Mine came back negative. But the damage was done.

When that many lymph nodes (20 in my case) are taken, the lymph system in your arm in permanently compromised and the risk of lymphedema is greatly increased. That would be my problem.

Now there is a new study (because the researchers needed to keep working), that says that if the sentinel node is positive, the better outcome for a patient is to have axillary node radiation instead of an axillary node dissection. There appears to be the same or lower risk of recurrence and the risk of lymphedema is substantially reduced.

This is clearly in the category of now they tell me. Damn. I have lymphedema which complicates my life - and has no cure.

I guess this is what research is all about - figuring out how to improve treatment so that they can prevent complications and reduce risks from previous treatment standards.

Well they scared the crap out of us

When women are diagnosed with breast cancer, they are brainwashed scared into thinking that they will get lymphedema and  end up with an arm the size of an elephants. If they have an axillary node dissection where a dozen or more lymph nodes are removed in the hunt for evil cancer cooties, they are given a list of rules for the rest of their life:

• do these stupid wall climbing exercises to make sure your arm doesn't swell up
• never allow anyone to take your blood pressure or stick any needles in that arm 
• never carry a shoulder bag or any bag on that arm that might compromise your circulation
• never lift anything heavy
• never injure your arm or fall on it.
• at any signs of swelling, contact your doctor.

And these are for the rest of your life.

Now they come out with a study which says "Breast Cancer Patients’ Fear of Developing Lymphedema Far Exceeds Risk". Well they scared the crap out of this with the 'rules' they gave us.  I even had a special session with a nurse to review everything about lymphedema. 

I was fine for about a year and a half and fell on my arm. Now I wear a stupid sleeve when I work out. I can't have needles or blood pressure taken on my left side. If I wear a watch on my left wrist, no matter how loosely, my arm feels heavy and swollen for days after.
 
So maybe they scared me, but they were right. Crap.

A cure for lymphedema

I  had heard about this a few years ago and was told that it was only in experimental stages and not yet ready for use regularly. However it seems enough time has passed so that it is now becoming a reality.

This is nice progress to see that something was too far off into the future to be a reality to end up being put into use.

Every patient is different

Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different.

As you may know from reading my blog that one of the biggest thing that irks me is when someone tells you that their neighbor's cousin's dog walker's sister's friend had the same ailment as you 20 year ago and their treatment protocol was different and they just don't understand why you are getting something different. Its rude. It makes you doubt your own treatment protocol and doctor. And its none of their damn business.

So now this study (because we needed another study) says that 'Individualized Care is Best for Lymphedema Patients'. I didn't go to medical school and I could have told you that.

Living with lymphedema is no fun. I can't wear a watch or bracelet on my left arm - no matter how loose it is. If I do I have to wear a compression sleeve for a week to make my arm feels better. This surprises my doctors. I also have to wear a compression sleeve when I work out or when my arm feels like its acting up - like maybe today I will. I have to do the stupid little lymphedema exercises to help my arm. They are just annoying.

I have a friend who had lymphedema and then lost a lot of weight and it went away. I have another friend who is very thin and has to wear a custom sleeve every day - and has for 17 years. I have a lot of friends who had the same surgery and never got lymphedema. See we are all different.