Newly diagnosed

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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

    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

    Community Champion Badge

  • FormerMember
    FormerMember

    Hi 

    I hope the post has helped you in some way getting it all down. It sounds like its not been an easy path so far and lots of us here will relate to that....it took 2 months after telling me I had a tumour to diagnosis. I remember the time I had between diagnosis and treatment...with treatment helping to feel that I was finally doing something.

    I always hear that I look fine and looking back although I didn't have any major symptoms when my sarcoma was found I was tired a lot (put it down to work, lack of sleep etc). Its all such a shock at first and lots to process. One of the things I found emotionally difficult was learning as much about my condition as possible. I felt this important so I could be part of decisions regarding treatment, and was able to ask the right questions. However it was hard reading at a time of going through the motions. This did pass as I adjusted. 

    I think the forums are a good support to link in with others in similar situations. I hope they provide some answers soon with a treatment plan. I rang Sarcoma UK at the start who are really knowledgeable on all things sarcoma 

    Take care 

  • Hi Steve,

    thank you for your reply and for sharing your wife’s story. That’s fantastic that she is doing so well. I can kind of relate to the “relief” of a diagnosis. At least it wasn’t in my head the entire time! Can I ask if her cancer originated in her lungs? 

    I have yet to speak to my MDT and to get more info on type of sarcoma, treatment etc. but it seems to have originated in my liver. I have also just had my new CT results and none of my tumours have grown in 4 months and that’s without any treatment. 

    I know I’ll get more answers on Wednesday but I’m equally eager to find someone in a similar position as I find myself now. 

    thanks again for your time

  • 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

    Community Champion Badge

  • Hi AnnieApple1

    Thank you for taking the time to reply, and thank you for sharing that diagnosis took some time for you as well. I guess I just presumed it was simple for the majority of people and have been frustrated by the length of time it’s taken to get here. Anxiety has been very high for a few months. However I meet my new team tomorrow so will no doubt get more info then. 

    I think it will help, as you say, to get more information. I’m sure these forums will help as well to connect with those in a similar situation. Just feeling quite lonely I guess as everyone my age around me is getting married or having children etc.

    Thank you for your reply. 

  • Thank you very much Steve for your reply. I will have a look at your profile. It’s very kind of you to share your and your wife’s story. 

    Sarcoma does seem to be a tricky one. And one that seems to affect everyone a bit differently. However I’m hopeful that tomorrow will bring me more info that will at least help settle my mind a bit.

    Thank you!