[sunny]

I am in Melbourne’s Peter Mac cancer Centre,seeing experienced sarcoma oncologist soon.

Surinder

[sunny]

(When I reviewed this case I specifically did so to make sure that it was not a GIST and I am very confident that this is a true leiomyosarcoma based on both the morphology and also the immunohistochemical profile.

The tumour demonstrated negative staining for cKIT and DOG1 and positive staining for desmin which excludes the possibility of GIST and given the morphology confirms the diagnosis of leiomyosarcoma.)
Above is the part of email from my pathologist.
I have no idea what they gonna give me.I will keep you posted once I find out.

Surinder

[sunny]

Thank you Paul.Systemic therapy is the only hope and depend upon the response because the gastric tumour was CD117(c-kit) negative.But I hope something might work.

Surinder

[sunny]

Although this is about a rare condition but it affect real people and real families.Without this forum it will be very lonely journey and I regret not joining it earlier enough.Back in April 2011 my Gastroenterologist said to me don’t worry about this cancer and referred me to general surgeon who had no experience in sarcomas let alone LFS.
Although my geneticist was writing to all these doctors but his letters were going in the files only and even he was fooled by their claim of a cure.The greatest irony is these doctors continue treating people and their practice is so busy it takes weeks to get appointment.
I think there are many more undiagnosed people suffering from this condition so I find forum very helpful an
I agree we should use this more frequently.

Surinder

[sunny]

My surgery has been canceled, as latest scan shows several spots in the liver.Flying back to Sydney from Brisbane.Need to fight on but who knows how long for?

Surinder

[sunny]

Hi Paul,

Thank you for your Best Wishes and I Wish the same for your treatment.I would like to share another forum with other members,some might know about it others might find it informative.
http//csn.cancer.org/node/194105 .

Surinder

[sunny]

Thank you Paul for your valuable advice.After reviewing pathology of the tumor my oncologist and sarcoma team is confident that this particular type of leiomyosarcoma does not respond to chemo and if it respond well they think with Li-fraumani patients ,chemo can induce some sort of cancers in future.My best bet is to go liver resection with portal vein grafting and this is very risky operation but I have no option but to undergo this surgery.If I will survive this operation on 14th ,I will post my sarcoma team’s next step.

Surinder

[sunny]

My new team is working hard and treatment they advised is liver resection as the biology of tumor gives them limited options as it does not respond well to chemo or radiation .one of tumor can be easily removed but the one near portal vein is very difficult.I have been told there is a risk of death with this operation.I need lots of prayers to survive this and hopefully I will survive this to tell the story.Is there anyone who have survived portal vein grafting liver resection ,please share your experience?

Surinder

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