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Hi, update on second opinion regarding my hubby

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Posted 12/6/2013 1:07 AM (GMT 0)
This is jefe been,
Went for second opinion today with my husband. He has HepC, about 20 years now and in early November had elevations in his liver function and rising AFP from 8 to 86. Went for second opinion today. Saw Dr. Hertle from Mass General. My hubby had 2 spots show up on MRI suspicious for pre cancer. Dr Hertle recommended 2 month follow up MRI, January. Because there is two spots and they are smaller than 5 cm. they will just watch them, and if they grow bigger he recommended either resection or going on transplant list. I find it hard to believe that he should wait til either there are 4 or more spots or they have to be bigger than 4cm. Before they can either be removed, biopsied, etc
That is not what we wanted to hear. Why wait til they are beyond fixing. He will be hopefully starting that new treatment in January or February. So now we have to worry until it actually is bad enough to actually do something about it. What the hell? I need some input on this.
Thanks,
JB
Posted 12/6/2013 1:28 AM (GMT 0)
Jefe,

You are fortunate to have the top gun, Dr. Hertl, Surgical Director of the Transplant Team!

Folks with Hep C have a very high rate of liver cancer, and pre-cancerous tumors. If Hertl says you can wait til next month for a follow-up, then I wouldn't worry. I would trust him explicitly. He happens to be my brother's doc too. And I'm sure you will be hearing from David in regards to this man's capabilities.

We love Hertl and everyone we know does too, he just exudes confidence and sagacity.

You might read this article to better understand how it works.

Liver Cancer Patients Less Likely To Die On Wait List Than Candidates Without Carcinomas

http://www.medicalnewstoday.com/releases/243301.php
Posted 12/6/2013 2:16 AM (GMT 0)
Dr. Hertl did my transplant. He's a fantastic surgeon and a great guy. I trusted him with my life and he saved it. A couple of weeks after my transplant, he showed me the biopsy of my old liver. It had 2 small cancerous tumors. They call him "Hurricane Hertl," because he is so energetic and upbeat. I can't say enough good things about him.
Posted 12/6/2013 4:05 AM (GMT 0)
JB sounds like you are in excellent hands. It's hard to sort through everything at a time like this but you have the best there is working with you.

Hang in there!!

Sandia
Posted 12/7/2013 2:10 AM (GMT 0)
Same thing happened with my husband, Ron, before his transplant.  He had a spot - we were told they would watch it - it grew - they did a biopsy - it was cancerous.  The tumor wasn't large enough to put him on the transplant list - it was 1.8 and it needed to be 2 cm.........so we waited (it was 6-8 months)......and it grew to 2.1cm and Ron began his journey with the Mason Transplant Clinic @ Piedmont Hospital in Atlanta.  Ron was placed on the transplant in August 2010.  He received his new liver February 3, 2011.   It is (when first diagnosed) paralyzing, but we found, we put the thoughts away and lived our lives; we lulled ourselves into 'our new normal'.   I became educated on my husband's condition, we put faith in our doctors and we waited.....and it finally happened.   Hang in there!

Pam and Ron (liver transplant February 3, 2011)

P.S. Ron does have Hep C, is diabetic and had a heart attack November 15, 2012 (triple bypass). He is currently retired and on disability - but we're together and he sure does love his grandchildren (6 grandchildren 5 and under)!

Posted 12/7/2013 2:52 AM (GMT 0)
I had a tumor on my liver that was found in 2010 but it was under 2 cm. It did nothing until June of this past year, when it grew to 2.1 and my all phos started to rise. My AFP was normal. Since my tumor was within Milan criteria I got extra meld points raising it to 22 and was transplanted August 7, 2013.

I was told by my hep that the pathology in the tumor should it was just turning cancerous.

I know UNOS is toying with the idea of changing the Milan criteriacin 2014 but for me, it was a godsend. My meld thru blood tests were kept between 15-20 due to my creatinine score. My kidneys were healthy, but my liver was not. I had to have a tips to save my portal vein, my spleen spontaneously burst in January, and I nearly died. By the time of my transplant, I had waited 2 years, and 9 months on the list. I did not have Hep C but a cryptogenic form of hepatitis.

I don't doubt your doctor is good, but I cannot understand if your husband has 2 tumors under 5 cm and meets the Milan criteria, why your husband would not be given the added meld points. Now, I was blood type B and 22 was enough for me to get transplanted in Chicago. But if I had had to wait, I would get 3 more points every 3 months. In fact, I was prepping for Y 90 treatment of my tumor ehen I got the call. So I honestly don't know why they are not treating your husband similarly.

Susie
Posted 12/7/2013 4:36 AM (GMT 0)
Thanks for all the input. This is new to us and are not familiar with the point system. Dr Hertle is infortuanely transferring to Chicago. He is just filling in at Fletcher Allen Healthcare transplant services but gave us some of the names of his colleagues. He seems like a great doctor. We will wait to have MRI in January and take it from there. My husband is 49 and healthy otherwise. He does have a strong family history of cancer. His sister died of ovarian cancer in March 2013 and his brother has just been diagnosed with colon cancer. His father died at age 54 of melanoma. It weighs on his mind but we will do our best to get through it. I appreciate all your comments, it is comforting to me to hear what you all have to say. Sharing is soothing.
Jelebeen
Posted 12/7/2013 5:01 AM (GMT 0)
In a couple of months, the MRI should give the docs more definitive results. Of course you're worried. Who wouldn't be. I trust my docs at MGH and they haven't let me down, ever. Remember, MGH is the number one hospital in the U.S. It was number two, until this year. To me, that's comforting. A liver transplant isn't the work of one doc, it's a team. My transplant team consisted of 3 docs, 2 anesthesiologists, at least a half dozen nurses, dietician, physical therapists and others too. I am disappointed that Dr. Hertl is leaving, but the other docs at MGH are terrific.
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