When a diagnosis of fibroids was made by my GP in Spring 2002, I was just relieved that something could be done. I was 46 years old and I'd been bleeding very heavily during periods for several years but it had become even worse recently and my abdomen was distending  rapidly too.

Up to that point I'd been a seven stone size 8 tiny person, working in an active job as a science technician in a high school near Chelmsford, Essex but over a few months I developed the shape of an advanced pregnancy and I was weak with anaemia.

My GP prescribed iron tablets and referred me to a gynaecologist and being advised this might take time, I paid privately to have the pre visit ultrasound to speed things up as I had begun to experience lower right side pain now too which radiated through to my back and sleeping was difficult.

Three months later the gynaecologist looked at the ultrasound, proclaimed it a "ropey old uterus and tubes".

A complete  hysterectomy was decided upon as I have three grown children and it was extremely unlikely that I would be aiming to become pregnant again.

I asked if I might retain my cervix as I'd heard it helped avoid some problems later in life after total hysterectomy and he agreed to do that. It was also agreed that he would implant HRT (Premarin) pellets into the stump during which would last for six months, and thereafter I would return to have an HRT pellet inserted under the skin of my abdomen to minimise the sudden menopausal symptoms I would encounter.

The operation was carried out on the NHS six months later, and that Christmas, despite the after effects, I felt well for the first time in years!

I was recalled six weeks later to be told that they had found endometrial stromal sarcoma in my uterus. I was so shocked that most of what he said is a blur of words.  I remember hearing "sarcoma, lymph node involvement, rare cancer". I was a fit person, nobody in my close family had cancer, had ever had cancer. I felt really well, it just couldn't be true.

Of course the cervix would now have to be removed too so this was done with speed, privately.

I began reading all I could find about Endometrial Stromal Sarcoma and hoped I'd be one of the lucky ones who never had a recurrence. The disease runs an indolent course and if lucky, I might still make it to the twighlight retirement home for the bewildered one day.

I was offered radiotherapy but informed that chemo wasn't an option as ESS didn't respond to it anyway. Both Mr Partington the consultant gynaecologist and Mr Tahir the oncologist agreed that my decision to leave radiotherapy at that time was a reasonable one. I was thinking that it would allow me the option to have it later if I ever had a recurrence.

I went back to work and carried on pretty normally. CT scans were carried out every 6 months and I continued with the HRT although in 2004 I decided to change to patches, and then later to pills instead of the implants.

In Summer 2004 I began to feel unwell again and had the same night sweats that  I remembered from being ill before. My scan that October showed a lung lesion. I was sent for a PET scan to be certain and it was confirmed as a 1cm isolated nodule and completely operable. We decided to do this privately for speed and so, as we were just about to re-locate to Grantham  Mr Tahir, the oncologist put me in touch with Mr Stephen Edmondson, thoracic surgeon of Harley St, London and I made the arrangements directly with his secretary to have a lobectomy in the Wellington Hospital in London on December 15th. 2004.

I was asked to fax over the lab report after surgery to Mr Tahir and then he would send all the completed notes to my new GP, Dr Baker, in Grantham.

The staff immediately removed my HRT tablet pack from my room because they have a rule about patients not taking medication which hasn't been prescribed by them. As it turns out, that may have been the saving of me because I didn't ever take them again.
 
Recovery took longer than anticipated because my lung refused to re-inflate after surgery so I eventually had to endure what is called the glucose treatment. I mark this as one of the worst moments of my life. I went home after 19 days.

On release day, Mr Edmondson handed me a post surgery lab report marked "Part 1 of 2) to send on to my oncologist Mr Tahir. My husband and I had a quick glance at it and noticed that it stated "Leiomyosarcoma" instead of Endometrial Stromal Sarcoma for the lung nodule so I asked him if it was a different cancer. He said something about it all being pretty much the same thing. I thanked him and said "Go home, you're cured". Leiomyosarcoma (LMS) is a much worse diagnosis than ESS. It is a faster growing and deadly cancer. I hoped that the lobectomy had got it all!

I forwarded the lab report (part 1)  by fax to Mr Tahir...and kept the original. I've no idea if he received it because he never replied. I didn't ever receive part two.

My GP in Grantham referred me to the gynaecological oncologist for the region, Dr Murray, but I didn't get to see her. My consultant was Dr Panades.

He took up the 6 monthly CT scan routine and the one carried out that spring (2005) in Grantham showed up clear, however, later that summer I felt unwell again. The GP I saw (not Dr Baker) was very patronising, she said that as I'd had a clear scan three months earlier I was just being silly and panicking. She asked why had I refused radiation treatment? Didn't I realise that these treatments were offered to put my mind at rest? I went back a few weeks later and one of the GP's sent me for a chest x-ray which was clear so I didn't return.

That October scan showed three tumours in my pelvis, the largest was 6cm at that time.
Dr Panades wanted to know if I hadn't noticed any changes earlier in the year? I told him about my GP experience.

Realising that I now had seriously metastic leiomyosarcoma I had to tell my children, my parents and friends that time may be short for me. This was a very difficult time for us all. My parent had already lost two of their four children and now about to lose a third and their only daughter. This was a bleak time and we had a dreadful Christmas. I was booked in to begin chemotherapy (doxorubicin) on December 30th. I believe it's standard practice for leiomyosarcoma...but NOT for endometrial stromal sarcoma.

3 rounds proved worthless except to make me even sicker, lose my hair and  the CT scan showed no change. Next came the 10 sessions of palliative radiation directed at the pelvic tumours. This has left me with bowel problems since the targeted tumour (the biggest one) is growing very close to the small bowel. I developed shingles at this time too.

The CT scan in September 2006 showed no change in tumour size. Around this time I was in touch via internet with a wonderfully enthusiastic lady, Shirley Collings, whose disease, LMS was running a similar course to mine and who was receiving hormone treatment (Letrozole) which appeared to have a wonderfully stabilizing effect.

It had occurred to me that since ceasing HRT in December 2004, my disease had stabilized and although I'd also had chemo and radiation, it seemed to me that there could be a connection. Shirley urged me to question my doctors more as to whether there might be hormone receptors involved in my tumours. I asked about this on two occasions and was told that leiomyosarcoma came from the area of the uterus that didn't have receptors, oestrogen wouldn't be a factor and he offered to reinstate my HRT prescription at any time should I ever change my mind.

In May of this year, 2007 we re-located to a village near York. Both GP and specialist medical teams here in Yorkshire have been wonderful. Mr Broadhead who is a consultant gynaecologist, spotted the discrepancies in my medical notes straight away and like me, he wondered why I was still around after 4 years with Leiomyosarcoma! He immediately had a CT scan ordered as a base and this was quickly carried out.

The medical team from St James's Hospital in Leeds were fantastic, they went about acquiring all the past info which would include slides and tissue blocks from all past surgeries and re-analysing them in their own labs. I was invited in just a couple of weeks ago to see Mr Halls and be told their the conclusions. The original diagnosis of ESS was the correct one and that it was indeed hormone receptive. Further block have to be received to indicate whether more than one hormone is involved alongside oestrogen.

For some reason that I may never know, the lab report from the Wellington Hospital stated that I had high grade leiomyosarcoma in December 2004 and that it what I had been treated for ever since.

The upshot is, I have a cancer that is rarer than leiomyosarcoma but not as immediately deadly and more importantly for me, it IS oestrogen receptive and therefore recurrences can, and will be treated with hormones for as long as they remain effective. There have been some small changes in the two smaller tumours, they have become a little cystic and so they are scanning me again in December to keep and eye on this.

That's where I'm up to. I'm angry about the needless misery inflicted onto my family, for the chemo, shingles and emotional stuff I didn't have to go through and at the same time I'm naturally relieved that I'm not facing the worst scenario.

I'm still mulling it all over but the bottom line is I am happy to still be here. Perhaps it's all given me a better take on life or made be a better person (or a worse one?).  Maybe I'll get mad and lash out,  I really don't know yet because it's too soon and I'm still adjusting. I just hope that this story helps other women who find themselves in a similar situation where their body is telling them one thing and their doctors another...to question, read, speak out!!!