I am a woman, a wife, a mother of 3, a grandmother of 10, and happy to be still alive.
I was experiencing irregular bleeding as my menopause approached. I didn't pay much attention to it at first as my mother had a very weird menopause. On again, off again for several years. I thought I was just following the pattern. However, she ended up in hospital for a bowel blockage and there they discovered some kind of mass. Due to her condition, they hurried through getting the blockage cleared and closed her up again, intending to go back in after she recovered a bit. They scheduled her for February 2005.
On hearing about this, my GP wanted me to schedule some testing. After she did a manual exam, she immediately sent me for an ultrasound where they saw the lining of the uterus was thickened and an ovary was enlarged. She set me up very quickly with a gyn/onc in early December of 2004 and he verified that I had Endometrial cancer.
Surgery was scheduled for January 2005. I was hoping it could be done laparoscopically because it is easier on the patient and has fewer risks. Well, they did that, but I have been sorry ever since, for when they removed the ovary that was enlarged, it burst. It was verified that it contained Granulosa Cell cancer. Naturally that ended up all over my abdominal cavity.
Meanwhile, a week before my surgery, my mother died in her sleep so I never did find out what she had in there.
After my surgery I was given regular CT scans and it seemed things were good for about 3 years. Then the CT's started showing "cysts". They said that happens to everyone, people have cysts coming and going all the time. Except...these ones developed vascular systems, meaning they turned into tumours. The gyn/onc decided to wait as they were small and weren't growing fast as is apparently typical of Granulosa. However, I sort of fell through the cracks because I had to cancel an appointment due to being away on vacation. Then after for several months I wasn't able to get through to them to reschedule. Life kept happening and I'd call, then leave it for awhile. When I finally got another scan in November 2010, I was almost a year without a CT. The main larger "cyst" of 2.5cm had grown into a tumour of 14 cm. and there was another that was 10 cm, and a few smaller. Needless to say, that lit a fire under them.
They hustled me into my second surgery in January 2011. There they found the tumour stuck to the bowel quite seriously and had a hard time getting it off. I hemorrhaged and had to have 10 units of blood. Thankfully, my recovery went really well and quick.
Complications: One week after, when I went to have the staples out, everything looked wonderful, no red skin around the incision, no moisture. So she took them all out. The next night I sat on the edge of the bed and started to take my stockings off, when I felt this odd feeling like a zipper came open. Only it was my incision. No pain at all. Quite a bit of fluid though. I grabbed a bunch of tissue and hollered for my husband. Ambulance ride to the hospital. Due to an outbreak of a serious infection, they didn't want to keep me in the hospital so they sent me home overnight with the wound dressed but open. It was fine, no pain. I came in the next morning and they decided they weren't going to stitch it together again because there would inevitably be bacteria caught inside and I would surely get infected. So they dressed it and kept it open in order to heal from the inside out. I got daily visits from Home Care nurses and things went well. It was pretty slow, but I was in no discomfort and it healed after about 3 months. Meanwhile I was able to carry on my life up to however well I felt. I was still recovering from the surgery so I wasn't doing much dashing around anyway.
The next CT a few months later in the fall of 2011 showed a very large 14 cm tumour again. Again stuck to the bowel. Surgery in February 2012. This time they couldn't get the bowel unstuck so they had to take some out. They had pre-warned me that I could get a colostomy so I was "sort of" prepared for it, and thought that it would likely be for sure. It was. Also they found it had invaded the bladder so had to call in a Urology team during the surgery. They took out some of the bladder, then repaired it. They left in a stent for 6 weeks to keep the tubes open while it healed, and left in a catheter for 3 weeks. The catheter caused several bouts of infection, fever, shaking cold, really miserable. A few more trips to Emerg because of the infection. Finally it was all better, the stent and the catheter were removed and I was left with "only" the colostomy to deal with.
That has been the focus of my life for the past year. They said there was a possibility of reversal, but I'm not holding my breath. I have had a lot of trouble with getting it to stick and not leak. Lots of trouble. I have had nursing help ever since, although it is now reduced to once a month so they can keep track of the skin around it. I had a lot of trouble with that which made the leaking worse.
I have been fairly housebound since. I go to appointments but very reluctant to go anywhere I might have trouble with the colostomy. It makes rude noises and I have no control of it. If it decides to output suddenly, I am terrified that it will burst or leak. I carry supplies, but who wants to go into someone's bathroom and have to deal with that? The smell is an issue too. Pretty potent. I've been on forums dedicated to people with colostomies and tried various methods suggested. Some help, some don't.
They decided to give me radiation to try to sweep up stray cells after the surgery. That was done in May/June. 25 sessions. It went well, no side effects to speak of. The CT scan just done in February now shows the area that was treated seems clear. However... there are many tumours in the liver. Not operable. They might do radiation on that. They are also exploring options like hormone treatment, and possibly even chemo although chemo is not usually indicated for Granulosa Cell ovarian cancer. I am going for a liver biopsy on Friday and they are doing genetic testing on it and on the tumours from the last surgery. Then they will formulate a plan that they think will be useful.
I am now classed as an "Advanced" cancer patient and have been getting letters from the head of the Palliative department of the hospital. Pretty daunting.
So that is where I am up to now. Wish we could have met in better circumstances, but then I guess we wouldn't have met at all! Right? I am very grateful for the support of groups like this. I am very grateful for the care that has been given me by my medical people. The hospital is not a negative place for me for some reason, even though I see a never-ending parade of patients going through every time I'm there.
Looking forward to being a member here.