Hi everyone,
Hope you are all feeling well.
I’ve just recently been diagnosed with sarcoma. I’ve yet to speak to my MDT team. I am 31, married with a 2 year old.
Back in November I started having stomach pains. Everyone presumed it was gallstones and I was sent for an ultrasound for investigation. The results came back with liver lesions so onto CT I went. My GP came to my house to tell me the bad news that they thought it was cancer, but they couldn’t find the origin. I was then sent to the breast clinic (all clear) and the endoscopy unit (all clear) so I awaited a liver biopsy. This biopsy came back as “inconclusive” only inflammatory cells were detected but the imaging was still concerning so they wanted a repeat biopsy. It was about 2 weeks ago I received the results of the second biopsy which confirmed sarcoma.
my stomach pains were episodic, and ironically once my GP told my the results of the CT scan back in March I’ve had little if any pain. I have no lumps, bumps etc that we can find. I am still exercising 3-4 times a week, running around after a toddler, my eating is fine etc. Surgery doesn’t seem to be an option since there are multiple tumours but there are treatments available. I just have to wait until I meet with my team to discuss them further.
my family is obviously devastated and everyone had a bit of disbelief since I appear “fine”.
My dad died 4 years ago from GBM (3 weeks before my wedding), my daughter was born during the first lockdown with clubfoot (while very treatable still something we deal with every day). It was quite difficult having a newborn during lockdown and having to go to the hospital for her treatment weekly.
i really thought perhaps our luck was going to change, but I was very mistaken.
Not sure the point of the post, but as many say sometimes it helps to get things off your chest and written down. Thanks for reading if you’ve made it this far.
Hi Y1234H
My wife has Leiomyosarcoma but her route to a diagnosis was also very complicated - I think they through just about every test under the sun at her and frankly finally getting a diagnosis seemed like something of a relief.
Janice's cancer is scattered throughout her lungs so similarly a surgical option was not available but she had two different rounds of chemotherapy and the second one has rendered her cancer stable and she has been like that for over six years now - so much so the oncologist is now talking of discharging her to GP care.
Really get what you mean about people saying you look fine - really until someone has experienced cancer people can find any conversation too challenging.
<<hugs>>
Steve
Hi again,
Janice's cancer is believed to be of gynaecological origin but my the time they realised this she had already had a hysterectomy and the womb was not tested for cancer before it was incinerated so they cannot really be sure.
There is a bit of background on this in my profile - click on my username above if you like.
Good luck for Wednesday. Sarcoma is a tricky little beast as it can start almost anywhere in the body and being rather rare most doctors will only ever see one case in their career. I know whenever Janice sees a locum doctor they will look up Leiomyosarcoma on wikipedia!
<<hugs>>
Steve
