Hi I’m 8 weeks post operation for what they thought was a uterine cancer.
I had a radical hysterectomy, lymph nodes removal from pelvic area and groin as well as the apron that covers the organ. 11cm mass removed and appendix and bowel resection where it was stuck.
the gynae bits all came back negative but the tumour has come back with ‘unusual features’ and spindle cells.
it was all sent to Belfast for a second opinion and has come back with ‘more investigation needed’
I feel like I’m going mad and our house is not a happy one.
has anyone had anything similar? I’m a person that prefers to be armed with all the information of what it could be.
Good Morning Joanne Louise
I remember replying to you on the Womb forum a while back. I am sorry to hear that they are still not sure exactly what type of cancer it is.
I hope that the surgery went well and that you recovered ok from it.
From my understanding (I had endometrial carcinoma sarcoma) there are some other sarcoma type uterine cancers that begin in the muscle/soft tissues supporting and around the womb. These are less common than most womb cancers that begin in the endometrium (womb lining) Mine was a mixed type cancer so although it began in the endometrium there were also sarcoma cells present. This is how it was explained to me.
Spindle cells mean that there are some cells that when looked at under the microscope are spindle shape. It is good that they are getting a second opinion from Belfast for you although I do understand that by this stage you would have hoped for a much clearer diagnosis. I suppose one thing to hold on to is that when they have all the specifics they need, they can be more targeted with your follow up treatments if needed.
Have they given you any idea of when you will hear anything from Belfast and whether any further treatment will be needed?
I do understand that you want more information, I was the same with mine. Here is some that might help but it is difficult to know what to put as they themselves are not yet sure.
Spindle cell sarcoma | Sarcoma UK
MAC11654_Und soft tissue sarcoma_E11 (macmillan.org.uk)
I hope this helps a bit and you do not have to wait too much longer. In the meantime if talking things through and a bit more information would help you are welcome to give the Support Line a call and speak to one of the nurses. If you have your pathology results so far with you, they should be able to talk you through them. The number is below if you feel that would help.
Jane
Hi JoanneL
My wife Janice has Leiomyosarcoma, to say her route to diagnosis was long and complicated somewhat undersells the issues and in the process of diagnosis the doctors failed to notice a massive infection that turned to sepsis.
While nobody really wants to hear they have cancer I think the idea of "you might have cancer but we are not sure" is one hell of a journey - it almost felt like something of a relief when she finally got a diagnosis.
Perhaps the good news in your story is that things might be a little unusual but not massively so - fast growing tumours tend to be very easy to spot.
<<hugs>>
Steve
Hi JoanneL
Her cancer has remained stable now for over 10 years - her oncologist is beyond pleased. My wife's view is she is not bothering the cancer and it is not bothering her - living with rather than anything else - took a while to get to that mindset for us both though and we might not have been able to do it without the support of many friends on here and elsewhere.
<<hugs>>
Steve
