My 9 yr old son has a hopefully benign tumor attached to his left lobe.over 10cm and visible in his abdomin.

[vanessa1967]

The consultant at bch is not very approachable and is just saying he will probably leave it. My son is slim and the tumor is visable but was definately not there 8 months ago. My fear is it will continue to grow and eventually put a strain on other organs and he is 9 so likes to climb do stunts on his bike etc so the thought of further trauma is a real risk and worry. Any advise? And should this be removed now while it is not effecting other organs? The only thing off now is his appitite. No afps and liver function is normal.

[Bolly]

Sorry to hear this. May I ask if the consultant has recommended a biopsy to confirm the type of tumour?

There is a condition called Fibrolamellar which affects young people with no history of liver disease, has your son been diagnosed with this. I share your concern about it growing and pressing on other organs. I suggest you go back to your GP and ask for a referral to another specialist, as confidence/trust in your medics is vital.

[vanessa1967 in reply to Bolly]

We have not been given a diagnosis yet just that what we have stated above. The consultant has said it is unlikely he will do a biopsy but he will decide after the next scan in two weeks

[SunnySideUpDawn]

You can always ask for a second opinion, and in this case, I would. Let us know what you decide!

[vanessa1967 in reply to SunnySideUpDawn]

Thank you..i am thinking i will get this next scan out of the way then ask for a second opinion at least then all the scans are done and we are not completely back to square one.

[Hidden]

I think it would be reasonable for you to spell out your concerns to the consultant when your son goes for his next scan. A biopsy is not risk free and presumably the consultant is trying to avoid doing it if s/he can diagnose another way. Hope all goes well. Mike

[vanessa1967 in reply to Hidden]

Thank you x

[Bolly]

Hi Vanessa. Do you know what type of scan your son will be having. An MRI will give the most detailed result but is a little unpleasant for a child as young as yours as its noisy, lengthy and takes place inside a tube like machine. The next best is a CT which will be quicker and is not claustrophobic like the MRI, but its not as detailed. My HCC was diagnosed by MRI but not by CT or ultrasound. A friend with Fibrolamellar had a PET scan which can be done via a machine like the CT scanner. If it was me or my son I would be asking for an MRI or PET scan.

[vanessa1967 in reply to Bolly]

Hi we initially had an ultrasound. That was followed by a ct scan which confirmed the tumour. We then had an mri last Thursday. We have now been called back to birmingham for another mri next week. I am now confused as to why two mri scans are needed in a 3 week period.

[Bolly]

It does sound confusing for you. Is the recall for the 2nd MRI to scan a different part of the body or have Birmingham not said?

[vanessa1967 in reply to Bolly]

As far as i can work out from what he said its the same part scanned last week

[BLTHollyDawson Volunteer]

Vanessa1967 I am sorry to hear of the troubles your son is having. From the information in the posts above I suggest having the second MRI scan and then speaking to the clinician and asking why he needed two and what further tests they may need to do. I would also ask him to be honest about what they are looking/ testing for and what the next steps will be.

If he is not clear or does not answer your questions I would definitely ask to be referred to another clinician - preferably a hepatologists- ASAP and get a second opinion. The tumour you described is quite large and it should not be seen through the skin.

I hope this helps

Sandy Forsyth

Patient Support and Health Information Manager