I was diagnosed with endometrial cancer about two and a half years ago. I had a total hysterectomy and was quite surprised when it came back positive for not only the endometrial cancer but a tumor that is called a uterine tumor resembling an ovarian sex cord tumor. UTROSCT This was present throughout my uterus and cervix and my falopian tubes. The margins were positive and I received radiation therapy and they monitored me. A few months ago I had an MRI for back pain done, I had lesions on my spine they did a cat scan again and a bone biopsy that showed it was the UTROSCT that had spread to my spine. This whole time I believe in my doctor as he assured me that this type of cancer is not aggressive and was handled correctly. I am on Hormone Therapy now and I am told that this should keep it under control as it was sensitive to estrogen and progesterone. My question and what I would like answered is how am I to believe this is not aggressive when it had been throughout my reproductive system and now it’s in all three areas of my spine, I just feel like they are not treating it as well as they should. I have read everything about this extremely rare cancer and it’s usually doesn’t behave aggressively but I can’t help wondering what is causing this to spread and I am terrified that it is going to continue spreading. Anybody have any suggestions or insights into this??
Hi KatS
Welcome to the Womb group.
I am sorry to hear that your UTROSCT has spread to your spine. I know that this may have come as a shock after believing that the cancer is normally of a lower grade/less aggressive.
I have done a search on the Macmillan site and there has only been a couple of posts regarding the same type of cancer and they are several years old. It does seem that it is a very rare type.
I can understand your worries that the cancer has recurred/spread to your spine and that you are concerned that the treatment may not be enough to treat it. My feeling would be to write a list of questions about your concerns and then put them to your CNS/consultant so that you feel more informed about treatment.
There is a link here that may help.
Rare cancers | Macmillan Cancer Support
My own womb cancer is considered an aggressive grade 3 and is also quite rare. I had surgery and then chemo and then radiotherapy and it does seem that with the more aggressive types they do tend to do more adjuvant treatment and at an earlier stage. From my understanding even low grade endometrial cancers can recur although it can be less likely. I remember being told there are lots of different factors that can influence the chance of spread/recurrence. I suppose with some of the rarest cancers, they just don't know how they will necessarily behave. Whereas with the more common types they have greater numbers that have been diagnosed.
I know on here there are other ladies who have got a more advanced diagnosis or a recurrence have been put on to hormonal therapy. There are also ladies on other treatments for more advanced cancer.
I do not personally know about UTROSCT but I do recommend giving the Support Line a call and talking to one of the nurses. They may be able to give some more information about it and how it can be treated.
Jane
