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Recent Rectal GIST Sarcoma diagnosis

Russell-W
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Hi, I have recently been given a confirmed diagnosis of Rectal GIST Sarcoma.  The process of the diagnosis has been somewhat delayed by the fact that this is a rare cancer, in a rare place and is of considerable size.

I am currently under an oncology team, but have felt only pressure from them to continue with a treatment of Imatinib.  This drug has given me extreme side effects resulting in hospital admittance.

I recently joined the GIST Cancer UK site in an attempt to understand what I have, and hopping to connect with others with similar or same diagnosis. What this has highlighted to me is just how rare my particular diagnosis is as far as position of gist and size.

I had a brief discussion with the secretary of the charity who was very helpful, and suggested I was not being treated by a hospital with particular speciality of GIST. She suggested I request a second opinion because of the diagnosis and treatment pathways I had been offered, none of which were particularly good.

I am feeling like my existing team are floundering because of the rarity of this situation. Having read others experiences with similar diagnosis my experience is not unusual.

I would like to request a second opinion if nothing else to confirm that the options of pathways I have been offered are the only way... 

No one has actually informed me that the size of my growth is very large in comparison to most diagnosed, and only recently after speaking to a surgeon, has it been made clear that surgery will be life changing, and may (worst case) result in me requiring full time care after.

It has confused me further, my partner was devastated because of the reality of the situation.

I was initially diagnosed 14th April 26, I have been bed / housebound since 9th June 26.  

Because I am only comfortable laying down, sitting or walking for more than a few mins results in severe pain, severe bleeding and incontinence.  None hears me when I explain this, leaving me feeling unheard.

Fed up with we need a face to face, telephone appointments are not possible...

Do you think I am doing the right thing by requesting a second opinion?

Kind regards 

Russell 

  • Hello Russell and thanks for posting

    I’m sorry to read about what’s been happening. It sounds as though you’ve been dealing not only with a rare cancer diagnosis, but also with severe symptoms, treatment side effects, uncertainty, and the feeling that nobody is truly hearing how much this is affecting your day-to-day life.

    I think asking for a second opinion is a very reasonable thing to do as rectal GIST’s are rare, and your tumour is unusually large. You’ve had severe side effects from imatinib, including a hospital admission. You’ve recently been told how significant the possible consequences of surgery might be. For such a major decision, it is entirely understandable to want another specialist team to review everything and confirm whether the proposed pathway really is the best one. These are exactly the sorts of situations where many people seek a second opinion from a specialist team. You can ask your GP or current specialist to refer you.

    We have some general information about getting a second opinion on our website.

    I hope this is of some use.  Give us a ring if you would like to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Celene

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