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tinasantos
@tinasantos

Posts: 1
Joined: May 28, 2018

Hepatocellular Carcinoma / Liver Cancer

Posted by @tinasantos, Mon, May 28 11:35am

Hi! My dad, who is 78, has already been treated for Hepatitis C (almost 20 years ago) and was diagnosed with this huge mass/tumor in Feb/18 after abdomen pain and loss of appetite. He was referred to a hepatologist who suggested the hepatectomy. The surgery was successful, on March,16th and the mass removed was around 13 pounds. At the end of the surgery, no cancerous cells were found at the biopsy. The doctor recommended another consultation after 3 months.

Before this, in the beginning of this month (about to complete 2 months os surgery) my dad made an appointment to an oncologist (just to check). He asked for some blood tests and triphasic MRI. In the next days my dad started feeling the symptons again (loss of appetite, weakness, fever, shivering, abdominal pains) and returned to the oncologist to show the results. The oncologist said the tumor had came back (multiple small nodules) and that he would not recommend another surgery (because tumor would come back again) and that he was not eligiible for transplant because of his age.

After all this, the oncologist recommended the treatment with Nexavar (Sorafenib) and my dad will start it this week.

I'd like to know how to get Mayo Clinic's doctors second opinion since we're in Brazil and there may be another approachs to this abroad.
Also, it would be great if someone in a similar situation could share info here. I`m really worried because my dad is 78, is weak and depressive because of this, and we don't know how aggressive and effective is Nexavar.

Thanks,
Tina

REPLY

Hello @tinasantos and welcome to Mayo Connect. I am so sorry to hear of your dad's problems with liver cancer. I can understand how concerned you must be!

We have had discussions on this topic and some of the Members have mentioned using Nexavar. Here is the link to the discussion, https://connect.mayoclinic.org/discussion/hepatocellular-carcinoma-2d20de/?pg=1#comment-17206 As you read through these discussions feel free to hit "Reply" and get more information about the use of Nesavar to the Members who have mentioned it.

If you are interested in having your dad seen by a Mayo doctor here is information on how to arrange an appointment,
https://www.mayoclinic.org/appointments.

I wish you well and I hope to hear from you soon regarding how your dad is doing.

Teresa

Hi Tina, I'd like to add my welcome to Teresa's. Welcome to Mayo Clinic Connect!

Has your Dad thought about a second opinion?

I am just starting the treatment for my liver cancer ,it is one tumor only and they are going to do an embolization to kill it.The dr suggested a liver transplant . I insisted on treat the cancer and to put me on the list for transplant. I think the cancer has to be treated first because the wait for a liver donor can take up to 19 months.Any tips?

@japv2001

I am just starting the treatment for my liver cancer ,it is one tumor only and they are going to do an embolization to kill it.The dr suggested a liver transplant . I insisted on treat the cancer and to put me on the list for transplant. I think the cancer has to be treated first because the wait for a liver donor can take up to 19 months.Any tips?

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Hello @japv2001

Yes, I would encourage you to connect with our Transplant discussion group. Here is the link to the many discussions there, https://connect.mayoclinic.org/group/transplants/ You will gain lots of information and support. Please read through some of these discussions.

I would also like to invite, @rosemarya, the group's mentor (she also had a liver/kidney transplant) and JK, @contentandwell (who had a liver transplant) to join the discussion with you. They are remarkable people (like all of the folks in the Transplant group) and they will be pleased to discuss their transplant experiences with you.

Do you have a date for the embolization?

Not yet.

@tinasantos Hello Tina,

It has been a while since you posted regarding your dad's situation with a liver problem and I was thinking about you.

How is your dad doing now? Did he have any more surgery? Were you able to get a second opinion?

@hopeful33250

Hello @japv2001

Yes, I would encourage you to connect with our Transplant discussion group. Here is the link to the many discussions there, https://connect.mayoclinic.org/group/transplants/ You will gain lots of information and support. Please read through some of these discussions.

I would also like to invite, @rosemarya, the group's mentor (she also had a liver/kidney transplant) and JK, @contentandwell (who had a liver transplant) to join the discussion with you. They are remarkable people (like all of the folks in the Transplant group) and they will be pleased to discuss their transplant experiences with you.

Do you have a date for the embolization?

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@japv2001 @hopeful33250 I too had malignant lesions in my liver. They were ablated shortly after they were discovered. Mine were somewhat difficult to treat because they were right on the edge of my liver so they had to be particularly careful to not effect surrounding organs. I believe they actually put fluid in to make the separation larger. Because of their location I did have some discomfort the next two days but then I was fine. They also felt I would go home on the same day but due to some scheduling and a machine not working my ablation ended up not being until mid-afternoon so I stayed one night in the hospital, mainly because the anesthesia had not yet worn off.

I would have to go back through my records to be sure, but I believe that was done in the fall of 2015. My transplant occurred in September of 2016. I agree with you, I believe the cancer has to be treated while you wait for a transplant because if not it could increase and possibly even metastasize which could render you ineligible for a transplant. At this point they continue to have me go for MRIs yearly to make sure it did not metastasize.

If you do have any pain or discomfort after the procedure, be assured it won't last long at all. When I have pain or discomfort and realize that it's not unusual and it has a definite limit on how long it will last I can deal with it much better.
JK

Hi @gene1234, I'm bringing you into this more recent discussion about liver cancer. From reading your other posts, I see that your wife has been prescribed a recently approved drug called Lenvima (lenvatinib). Thank goodness there is no a treatment option when surgery isn't possible. How long has your wife been taking the drug? How is she doing? How are YOU doing?

@hopeful33250

Hello @japv2001

Yes, I would encourage you to connect with our Transplant discussion group. Here is the link to the many discussions there, https://connect.mayoclinic.org/group/transplants/ You will gain lots of information and support. Please read through some of these discussions.

I would also like to invite, @rosemarya, the group's mentor (she also had a liver/kidney transplant) and JK, @contentandwell (who had a liver transplant) to join the discussion with you. They are remarkable people (like all of the folks in the Transplant group) and they will be pleased to discuss their transplant experiences with you.

Do you have a date for the embolization?

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The embolization will be on the 8th of this month.I also have cirrhosis of the liver,Is it advisable to do the embolization?

@japv2001

The embolization will be on the 8th of this month.I also have cirrhosis of the liver,Is it advisable to do the embolization?

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@japv2001 I realize this is addressed to @hopeful33250 so I hope you don't mind if I contribute again.

You really need to speak to whomever you are dealing with at this point about the embolization. Prior to transplant I dealt with a hepatologist and then when the malignant lesions were discovered I dealt with a medical oncologist. It sounds as if you are still uncertain. I would definitely call them and discuss it to put your mind at ease.

I am terrible when it comes to medical terms so I googled embolization. What I read said it is used when the lesion or tumor is too large for ablation. I am sure different centers have different protocols though. You need to feel comfortable with your team and feel that they are doing what's best for you. If you don't feel that then you should find a different center where you can be confident. I initially went to one transplant center and did not care for it, so I switched to a different one, and was extremely happy with it. Also, I am a big advocate of having second opinions. If you opt for that it will probably delay your embolization though.

As I mentioned before, if the lesions (I am assuming lesions and tumors are the same things?) get larger than a certain size, or if more than a certain number appear — I think the limit is 3 — then you cannot be a candidate for transplant, so you should definitely have this addressed. You have no idea how long you could be waiting for a transplant, you don't want anything to happen in that time that would disqualify you. My center never really asked me if I wanted the ablation, if I recall correctly. They just told me I needed to have that done.
JK

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