Hello all,
I have joined this forum in the hope of gaining some more information and support from others especially with this type of cancer. It is rather rare so I don't know if there will be anyone here who will be suffering from the same condition.
Not a lot of helpful information out there and what I have read is mostly doom and gloom!
I am 51 years old and had a hysterectomy with ovaries removed in Feb 2012 just before my 50th birthday.
What was thought to be a fibroid turned out to be LMS which was a big shock. The pathology report stated there was no vascular invasion but no hormone receptor tests had been done according to my gynaecologist but she checked with Oncology to ask if I could take HRT and the reply was yes.
I assumed that receptor studies had been done but found out 4 weeks ago that I have mets on both lungs and the oncologist told me to come off HRT and that he would request the primary tumour to be tested for hormone receptors! Turns out the tumour was positive for Oestrogen receptors but negative for progesterone. And to think I've been feeding my body with oestrogen only HRT for 18 months!
I have been started on Letrazole and will get a CT I at the beginning of August to see what's going on.
I am rather angry at my situation because I have felt unwell since my hysterectomy and instinctively knew that something was really wrong but the medics kept attributing all my symptoms to menopause and anxiety due to severe pelvic and back pain. The fact that no matter which type or dose of HRT I tried failed to alleviate any symptoms and pain was escalating despite various drug therapies from the pain clinic rang alarm bells. I hadn't been scanned for 10 months and presented myself at A&E and insisted on a CT which showed the lung tumours. Thank goodness I acted on my instincts!
I was told I may require a VATS to remove the tumours if they shrink a bit. If not then chemotherapy.
Letrazole is taking its toll on my body with joint ache, lethargy, swollen feet and ankles and I have continuos hot flushing and nausea every minute of the day.
I have been unable to work since Feb last year and will be pensioned off if I don't return by mid September. Too young to be a pensioner!
I am convinced a lot of my pain is due to post surgical pelvic adhesions and am seeing my gynaecologist at the end of this month to try and convince her to investigate this.
No one had ever mentioned prognosis and I haven't asked as I want to fight this with a positive approach but it's quite hard when all you read on the Internet is negative stuff.
I've not had a single good day since my operation and quite frankly I'm sick of being sick!
I would welcome input from anyone who is going through treatment at the moment or has completed a course of treatment and what their experience has been like.
Many thanks and apologies for the long winded intro!
