Okay, this has to be another first for me. I’ve never actually researched a post before. They are usually just commonatry or brain dumps. This one is different. This one someone reached out to talk to me through this blog to help to raise awareness. There is some kind of weird irony in the request, I think, because she didn’t realize that she was striking so close to home for me.
First… my part of the story…
Just over a year ago (geeze, was it only that long ago?) I was having problems with pain in my back and in my hip. My rheumy said it could be RA creeping into my hips or my lower back weirding out again. She sent me for an MRI.
I hate MRIs. I hate hearing machines talking to me. Why on earth would they make a machine that you have to lay PERFECTLY still say things like ‘get up get up get up get up get up’? I mean really? How silly is that.
I went for my emergency MIR (she wanted it NOW) and within a couple days I had the result. It wasn’t RA in my hips. It wasn’t my back. It was a very large fibroid tumor. One that hadn’t been there at all a year before when I had had my back MRI. I was terrified. I went to see an OB-GYN as soon as I possibly could and had my total hysterectomy scheduled.
As soon as I found out what was going on (and as soon as I heard the fear in my Rheumy’s voice) I did what I do (I did what I yell at my daughter for doing) I googled about fast growing fibroid tumors. I found out that it COULD be leiomyosarcoma. And as soon as I found out what it could be I was terrified. RA can shorten your life span. Cancer is still a scary word. I know that people survive cancer every day. My mom survived breast cancer and has racked up enough years that she is considered to be a survivor. :) My mom is a survivor. My bestie has survived fighting cancer not once but several times and is currenlty in remission. But Aunt Bea and Aunt Flop didn’t make it. Sonny didn’t make it. People still don’t make it. And I was terrified.
I had my hysterectomy. I have the tiny little scars as reminders. It was a TOTAL hysterectomy. They took everything. And they had to fight hard to take everything. There was, apparently, considerable scaring from my appendectomy decades ago. The OB-GYN had to work hard to clean up the mess from my fibroid tumor and from the scarring. Bear sat and waited for the surgery to be over. He waited through the time they said it would take. It took twice as long. When Dr Fitzpatrick finally came out to talk to him, he said that the tumor was big enough that we could have/should have named it.
They took it out, and sent it off, all in one piece. They didn’t use the Power Morcellator to cut it up. They said that it was an option, but the doctor didn’t like the machine and he felt there were risks associated with it that were worth taking. They DID do the surgery laproscopically but they took the turmor out whole. It came back benign.
I’ve never really talked an awful lot about my hysterectomy. It’s a woman thing and I don’t think a single person at work knew why I was out for surgery. I heard so much about the back surgery of one of my coworkers that it made me want to scream. I work in IT. It’s a man’s world and talking about woman problems still feel very taboo. I didn’t realize at the time how many woman have hysterectomies.
I do know that I went through menopause in 5 hours. I had hot flashes SEVERELY for months and I ended up taking hormone replacement therapy for a few months to help with sleeping and getting by day to day. It was worth the increased chance of cancer (thank you RA biologics for THAT) to feel human. I’m off of them now. There is life after menopause. There is life after hysterectomy.
An aside… it also meant being off humera for too long and as a result I’m not on orencia because humera decided it wasn’t going to work for my post hysterectomy.
Now, as the power morcellator is facing FDA hearings on whether or not it should continue to be used, I’m thinking about the what-ifs of my hysterectomy.
The power morcellator is a device that is often used in hysterectomies to cut the tumor into small pieces to make it more easily removed. The problem that has arisin is that leiomyosarcoma doesn’t usually come with a flasing neon sign telling you that the tumor is malignant. The presence of cancer cells can go unnoticed. In this aggressive cancer, if the malignant cells aren’t all removed from the woman’s body, they can spread the cancer through the patient’s body. morcellation of the tumor, if it is malignant, can accidentally set cancer cells free in the body to attach and grow again. The average life span of a woman after this accidental morcellation of the malignancy is 24-36 months. Only approximately 15% of women who have leiomyosarcoma that spread (stage 4 leiomyosarcoma) make it to the magic 5 year survivor milestone.
Hysterectomies are the second most common surgery among women in the United States. Amongh women age 70 one in three women would have had a hysterectomy, and ninety percent of these would have been done to remove fibroid tumors. Most commonly (as in my case) the tumors turn out to be benign and non-cancerous.
I’ve been reading new articles about the power morcellator. It seems that women feel that they are not made aware enough of the potential situations that can arise. I know that, when I was facing my surgery (when I’ve faced nearly every surgery I’ve ever faced) I am terrified. I do read the papers I’m given and I do read the warnings of what could happen. Because I wasn’t looking at having the power morcellator used in my surgery, I didn’t see that warning paper so I can’t speak to whether or not it was worded in such a way that people really understood the challenges and the chances of something happening.
But people are scared when they are facing surgery. People (I can’t be alone here) already believe that the worst possible outcome could happen. There are so many alternatives to taking the chance. I hope that women (or the people who are the support system for the women) who are facing this surgery will at the very least do their research and find out exactly what is going on… and what could be going on.
While the FDA is looking at the evidence (and even once this crisis… this scare… this set of circumstances has passed) I encourage you to read carefully. Do your research. Find out what is being suggested to be used on your body and do some digging. I know it is easy to fall into the fear of what could happen, but if you temper OH MY GOD this could happen to me with BUT it probably won’t and face the tools that are going to be used on your body with an informed mind, you can make more informed decisions on the choices that you face.
Dr Fitzpatrick took this decision out of my hands for me. He wasn’t willing to take the risk. But you need to understand what could happen and decide for yourself. I know you can’t know what you can’t find information on, but arming yourself the best that you can is the best defence.
I’m not a doctor. I’m not even fabulous at advocacy, really, unless it has to do with my kids… then I’m kind of viscious. But I can use my words to try to raise awareness… to try to help people to find information and educate themselves.