Axillary Syndrome. Webbing. Web Axillary Syndrome. Cord Syndrome. Cording.

All these names mean the same thing and not many doctors discuss it or perhaps not aware that it may be more common than they think.

I didn’t know any of these names a week ago, which is about 11 months post-mastectomy. All the informaiton I’ve since found mentions it by its medical name — no one describes it and why I thought I should talk about its symptoms rather than its name to help other people who may be suffering, too.

I just thought my armpit was in a different place and that it’s extremely stiff — the numbness extends to my chest wall and across the shoulder and down to my elbow.

I’ve been concerned about Frozen Shoulder Syndrome — something I had years ago and is very painful — I’ve been forcing myself to use my arm to avoid getting Frozen Shoulder again.

I still struggle being on the computer and using the mouse for extended periods. I have to take many breaks.

So it’s almost comforting to know it has a name (almost comforting)

How Did I Hear About Cord’s Syndrome?

I haven’t been getting any exercise since the mastectomy and decided it’s about time to get my derriere up and moving. Wellspring has cancer exercise classes and I had my assessment last week with a physical therapist. She is the one that told me about this condition and said she could fix me. How wonderful!

She also mentioned that Lymphodema typically occurs 12-14 months after a mastectomy and since I have cording, I could be at risk for it. Yikes! I thought I was in the clear at this point — I’m so glad I decided to get my butt moving now instead of waiting until the summer!

I had my first cancer exercise class yesterday and I asked her for more information since I couldn’t find “Cord Syndrome” doing a Google search. She gave me the alternate names and eureka, I found information.

As an aside, my arm already feels better after the first class — it’s a modified circuit training customized to me personally. So if you’ve been like me and have been afraid to do a lot of moving and exercising, get yourself to a cancer clinic if there’s no Wellspring in your area.

Here are some links for you to check out if you are interested in getting more information:

• Axillary Web Syndrome / Cording
• Rehabilitation Oncology for Physical Therapists
• Breast Cancer Discussion Forum
• Step-Up and Speak Out (Lymphedema)

Hopefully these links will  help in your own journey with this syndrome and the many other afflictions after breast cancer surgery — this apparently can occur in those who only had a lumpectomy, too.

Peace and happiness to everyone in 2010.

Oh, I’ve got such a mad crush on my surgeon, Dr. Ewan … but that’s another story.

[The photo is of the real Ewan McGregor -- lucky me that my surgeon has the same twinkle in his eye. The photo was taken at a charity event called "Not Another Burns Night" in London, UK, which has some meaning that I dare not divulge]. Check out a pretty good photo gallery of the actor at WireImage.

I had my final follow-up with him on Friday the 24th and he discharged me from daily nursing. Hallelujah It’s been 2.5 months and it was such a great feeling and rush to know I don’t have to deal with the daily drama also known as nursing homecare.

All is not lost though. Dr. Ewan told me that he’ll be my doctor for the next few years … I think I said woohoo out loud

The next day I woke up feeling fabulous and wanted to head out to get a new bra and find out how all this prosthetic stuff works. I ended up waiting until Monday.

It was quite easy, and fast! Within 2 hours, I was out of the store wearing my custom-fitted new tit.

I was under the impression that lots of measurements would be taken and it would be a few weeks before I got a prosthetic, so I was pleasantly surprised it was so fast.

I was also pleasantly surprised to find out that the Ministry of Health (Ontario) has a Breast Prosthesis Grant: they pay $195 for each new breast. Although I had to pay the entire amount up-front to the retail store, the store owner gave me all this information I never knew before, in an organized presentation folder, along with multiple copies of my receipt so I can apply for the Grant and eventually submit the remainder balance to my insurance company. The new bra was $105 (it has pockets to fit the new tit - it is NOT part of the Grant and is paid 100% by the cancer patient) and the new tit was almost $400.

I found the PDF file for the Breast Prosthesis Grant online [link opens Ministry of Health site directly].

If you’re in the Mississauga, Ontario area, I recommend Susan’s Fine Lingerie: she’s fantastic and incredibly caring and helpful! [link opens her web site]

It’s only been a few days with the new tit and I’m not quite accustomed to it yet: it weighs about 10 pounds and I feel the need to adjust it in public … which would be socially awkward and inappropriate

It’s nice to start feeling like a girl again …