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Transplant "Decline"
Doctor (and anyone else who might want to comment),
I have HCC and was evaluated for liver transplant this past May and subsequently "declined".
The nominal basis for the decline was "...a tubular extension (from the tumor) concerning for venous invasion." based on an MRI done at the transplant center.
My oncology team differs with this opinion of the imaging and in any case "concerning" is not the same as actual invasion.
We felt I should have been listed, closely observed, and then de-listed if actual invasion is verified.
Since that time I have had 2 DEB-TACE's, and most recently my gallbladder removed to facilitate an RF ablation and ethanol ablation.
This is an excerpt from my most recent MRI report. I don't yet know my oncologists opinion regarding the potential THID.
" FINDINGS: ....There is an area of
heterogeneous hyperenhancement in the dome of the liver adjacent to the
ablation site which is only seen in the arterial phase of contrast
imaging. Otherwise, no new hepatic lesions are identified. The portal
venous system is patent. There is no dilatation of the biliary tree.
The gallbladder is absent. The pancreas, spleen, kidneys, adrenals and
abdominal aorta are within normal limits. There is no free fluid or
lymphadenopathy.
IMPRESSION:
Stable ablation site in the atrophic medial left lobe of the liver.
Area of heterogeneous enhancement adjacent to the ablation site may
represent a transient hepatic intensity difference (THID). Eovist
should be used if followup evaluation by MRI is indicated.
SQR "
Given the changes in policy by AASLD and UNOS which are making it harder and harder for potential candidates with HCC to get listed, do think there is any chance of my eventually being listed ?
Do you have any suggestions about how to maximize those chances ?
Thank you very much.
I have HCC and was evaluated for liver transplant this past May and subsequently "declined".
The nominal basis for the decline was "...a tubular extension (from the tumor) concerning for venous invasion." based on an MRI done at the transplant center.
My oncology team differs with this opinion of the imaging and in any case "concerning" is not the same as actual invasion.
We felt I should have been listed, closely observed, and then de-listed if actual invasion is verified.
Since that time I have had 2 DEB-TACE's, and most recently my gallbladder removed to facilitate an RF ablation and ethanol ablation.
This is an excerpt from my most recent MRI report. I don't yet know my oncologists opinion regarding the potential THID.
" FINDINGS: ....There is an area of
heterogeneous hyperenhancement in the dome of the liver adjacent to the
ablation site which is only seen in the arterial phase of contrast
imaging. Otherwise, no new hepatic lesions are identified. The portal
venous system is patent. There is no dilatation of the biliary tree.
The gallbladder is absent. The pancreas, spleen, kidneys, adrenals and
abdominal aorta are within normal limits. There is no free fluid or
lymphadenopathy.
IMPRESSION:
Stable ablation site in the atrophic medial left lobe of the liver.
Area of heterogeneous enhancement adjacent to the ablation site may
represent a transient hepatic intensity difference (THID). Eovist
should be used if followup evaluation by MRI is indicated.
SQR "
Given the changes in policy by AASLD and UNOS which are making it harder and harder for potential candidates with HCC to get listed, do think there is any chance of my eventually being listed ?
Do you have any suggestions about how to maximize those chances ?
Thank you very much.
MEDICAL PROFESSIONAL
there is no demonstrable evidence by current report that there is involvement of the portal vein by the HCC (which would constitute extrahepatic spread of disease). You unequivocally should be reevaluated for listing which i would try and do ASAP. The HCC can be followed over time as you wait for transplant.
MEDICAL PROFESSIONAL
you are in good hands with Dr Newell--I agree with her plan Brian. Good luck.
Hi Dr. Schiano,
I hope you and your family had a good Thanksgiving.
I met with my lead oncologist, Dr. Pippa Newell, recently. She spoke very highly of you.
My latest AFP, taken 11/21/2013 was 9.5, virtually the same as my 9/2/2013 number. It was at it's highest in May 2013 at 280.
Dr. Newell did not seem too concerned about the THID mentioned in the imaging, saying (if I understood her correctly) that it is probably related to the atrophy process of the the tubular mass that was "...extending from anterolateral surface of the lesion...concerning for venous invasion..." (quote is from my 5/6/2013 MRI report done at the transplant center - this was the basis for my decline).
My ALT is up slightly and my bilirubin went from 1.1 to 1.6, but the rest of the labs look good.
I will have another MRI and labs in 3 months, and if we have a similar low AFP number and the imaging still looks good, she will recommend that I be considered for re-evaluation at that time.
If you have any additional comments or insight I would appreciate hearing them.
Thank you so much for your advice and support.
I wish you and your family a happy and healthy holiday.
Best Regards,
Brian
I hope you and your family had a good Thanksgiving.
I met with my lead oncologist, Dr. Pippa Newell, recently. She spoke very highly of you.
My latest AFP, taken 11/21/2013 was 9.5, virtually the same as my 9/2/2013 number. It was at it's highest in May 2013 at 280.
Dr. Newell did not seem too concerned about the THID mentioned in the imaging, saying (if I understood her correctly) that it is probably related to the atrophy process of the the tubular mass that was "...extending from anterolateral surface of the lesion...concerning for venous invasion..." (quote is from my 5/6/2013 MRI report done at the transplant center - this was the basis for my decline).
My ALT is up slightly and my bilirubin went from 1.1 to 1.6, but the rest of the labs look good.
I will have another MRI and labs in 3 months, and if we have a similar low AFP number and the imaging still looks good, she will recommend that I be considered for re-evaluation at that time.
If you have any additional comments or insight I would appreciate hearing them.
Thank you so much for your advice and support.
I wish you and your family a happy and healthy holiday.
Best Regards,
Brian
MEDICAL PROFESSIONAL
happy thanksgiving
Dr. Schiano,
Thank you very much for your answer ! I have my appt. with the lead oncologist on the 27th and will share this with her.
Happy Thanksgiving to your and your family.
hp00 - Thank you as well. Yes, I have considered that, and it may come to that. Right now I will continue to try locally. We are the same age, and it appears we have similar medical history. Hope to talk to you further. Again, thank you very much for your reply.
Happy Thanksgiving to you and yours.
Thank you very much for your answer ! I have my appt. with the lead oncologist on the 27th and will share this with her.
Happy Thanksgiving to your and your family.
hp00 - Thank you as well. Yes, I have considered that, and it may come to that. Right now I will continue to try locally. We are the same age, and it appears we have similar medical history. Hope to talk to you further. Again, thank you very much for your reply.
Happy Thanksgiving to you and yours.
You may try it at other transplant centers. I have heard several stories like that some center will do, others won't. Good luck.
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