Uterine Leiomyosarcomas ( LIE O MYO) ULMS

ULMS Awareness Peach

Layomyo, Leomyo, no matter how you say it, it sucks. I am not sure if I mentioned, previously, that our doctor in Seattle is Dr. Gray; the real Dr. Gray from Seattle. Anywhoo, she called us yesterday so I could hear the diagnosis and ask questions. As I said in the roller coaster post the other day, the news was pretty unexpected but we do vaguely remember her mentioning the possibility of a Leimyosarcoma. She didn't think it was likely as uterine leiomyosarcoma (ULMS for short) is an extremely rare form of cancer, estimated to occur in 6 out of every 1,000,000 women in the United States each year. However, the odds of winning the lottery are much worse.

If you want to learn more about the specifics you can visit this website What is ULMS? If you go to this page it defaults to Bone and Soft Tissue. The information for ULMS is the link above that as shown in this picture. If you are not technical enough to understand what I am telling you then get one of your kids, grand kids, niece, nephew or other young person who understands the INTERNET to help.

Don't worry, there will not be a test next week on everything you have learned about ULMS. I'll give you at least a month before the first test.

So what is next for us you ask? Well, we get to travel to sunny Seattle on Tuesday May 14 to visit with our cheery Dr. Gray and her team to discuss the chemo therapy treatment. The goal of the treatment is to destroy any cancer cells that have escaped the tumor site. This type of cancer can spread easily and rapidly and therefore needs and aggressive treatment. 

One question we get from people is what stage is the cancer. As with everything else with Crescence this is not a cut and dry answer. Dr. Gray believes this is actually her second round with this cancer as she most likely had ULMS when she underwent a hysterectomy five years ago. I know you are wondering how could they have missed this when she had a grapefruit sized tumor at that time. I will explain that in a moment - be patient. Since this is a recurrent cancer they no longer use staging to describe it. But since everyone expects to hear the stage, the doc says it would be considered a stage II or borderline III. Staging is like golf in that you want a low score. Unfortunately I can't relate to a low golf score because I have a horrible slice. 

So how did they miss this? They miss it because it presents itself like most common fibroid tumors that women get. They look the same under imaging and don't look all that different during surgery. They can only tell during pathology. In Crescence's case they probably only sent samples to the pathologist and it is very possible that 90% of the fibroid was benign. It is also possible that the whole thing was benign. Either way we are moving forward with the aggressive treatment in order to have the best chance for a cure.

In closing I want to say to all the husbands out there  - tell your wife how much you love her. Hold her tight in your arms and appreciate every second she is standing by your side. When she asks you to go on a walk with her, get off you butt and take her on a walk. Stop taking her for granted because you never know what tomorrow will bring. 

Just Keep Swimming!

Crescence and Brian