Topic: CC and 16 cm liver tumour

Hello to everyone,

My name is Andra, i am from Romania and just 10 days ago my dad, aged 58, has been diagnosed with CC and a tumour of 10x16x8 cm. The tumour has spread on the hepatic vein as well.

He has already been seen by 2 specialists, one in my home city and one in Bucharest, both have refused to operate him due to the high risks. We don't have a clear answer from the specialist in Bucharest, but most likely the liver transplant is not an option either.

Tomorrow he will be seen for a biopsy according to which his treatment will be decided. Regardless of teh closed doors, I'm fighting for any chance left that can make his life longer and keep the cancer under control. Has anyone got information on non-conventional methods, like: naturalist medicine or laparoscopic surgery working in such difficult cases?

As I am new in this live 'challenge' i'm still trying to get informed on the topic, looking for solutions and answers. I'm slowly starting to read your posts hoping to gain from your experiences and share many positive thoughts. I know it is not easy to keep up the optimism all the time.

Lots of strength and health to you and your beloved ones! smile

Andra

Re: CC and 16 cm liver tumour

Anda...welcome to club no one wants to belong to, but always is happy to have found. You have come to the right place.  The members of this site will support you, help guide you, and stand by your side. 
Often times, dear Anda, the tumor will respond to chemotherapy and/or radiation treatments.  Hence, in addition to the oncologist you may want to also consult with an Interventional Radiation Oncologist. We have few reports on laparoscopic surgery, as the majority of patients are diagnosed at a late stage of disease. 
This link will lead you to our Complimentary and Alternative Treatment section:
http://www.cholangiocarcinoma.org/punbb … .php?id=23
You may find some answers here. 
Most of all please know that we are here to help and that questions will be answered by any member.
I am sure for others to come around real soon.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: CC and 16 cm liver tumour

Dear Andra,

Welcome to the forum although I am sorry that your Dad has been diagnosed.  There is so much support here with many people who can always answer questions, give advice and lots of support too. 

I do hope that tomorrow's biopsy gives you a real plan to fighting this disease.  Please ask any questions you might have as someone will always answer just as Marion did on the alternative treatments.

Let us know if you can the biopsy result and plan.

Clare

In the stars now . . . .

Re: CC and 16 cm liver tumour

Dear Andra Daria. welcome to our remarkable family but sorry you had to join us. We believe in Miracles and HOPE, so put on your boxing gloves and begin your fight. Once a game plan is in place your fright WILL turn to fight! I also feel at this point an  Interventional Radiation Oncologist should be seen. I have not seen any proof that naturalist medicine works on CC patients, and before you do anything different please check with your Dad's ONC.  At the top of the page is a Search button, type in any words and a ton of posts will appear on that subject. Also read up when you can on CC as knowledge is one of our best tools. You have come to the right place and please keep us posted on Dad  AS WE TRULY CARE.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC and 16 cm liver tumour

Hi Andra,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your dad. But I am glad that you've joined us all here as you are in the right place for support and help, and you will get loads of both from everyone here.

You are doing the right thing for your dad in seeking as much info as possible about all of this so please keep doing that. I know that it is such a tough time for you as well and I went through this with my dad also. As to liver transplants for CC, I'm pretty certain that this is not done in Europe and I know that it is not an option here in the UK. If I am wrong about Europe then hopefully someone will correct me on that.

However, there are other treatment options out there and I am sure that you will hear more about these after the biopsy results. Please let us know how that goes and what your dads medical team think they should do as a treatment for your dad. If you have questions then just ask and we'll do our best to help answer them for you. Keep gathering the information as the better informed you are the better the decisions you will make. And keep coming back here and keep us updated on everything. We are here for you and we care.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: CC and 16 cm liver tumour

Hello to everyone!

Thank you for the advices and welcoming!!

Unfortunatelly i cannot say that our sittuation is getting much better and it is not because of the disease for which i was aware of the gravity, but the romanian medical system.

The biopsy came with a diagnosis of HCC (HEPATOCARCINOM), stage III not CC as we were informed after tomografy and transplant consultation. The oncologist treating my dad did not explain which is the difference between HCC and CC. I got informed from the internet, but it's still not clear if this is better or worst than the initial diagnostic. In any case the treatment recomended is Chemo for which we made a request file. The file will hopefully be approved at the end of July and my dad can start the treatment in August (for free). The problem is...when we asked the doctor if we can buy the chemo until Aug she said she cannot answer to such question. She did not mention any other treatment or pills meanwhile we wait for the chemo....I really don't like this sittuation. The romanian doctors gave us very little info and i think the only solution now is to adress to a private hospital. I'm trying to contact institutes for Wienna and Bologna and until i receive an aswer get a consultation in a private romanian hospital. It's impossible to just sit and wait...

Lots of health to all!

Andra

Re: CC and 16 cm liver tumour

Dear Andra, the waiting game is only for the strong! I do not know how your systems works. Can Dad go to another Country like the UK? How in the world do they think someone wants to wait 2 months for Chemo to a rare Cancer. And you are entitled to some answers as well. I would insist, make that INSIST they give you answers and advise. Best of luck!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: CC and 16 cm liver tumour

Andra....I too am sorry to hear that treatments won't begin for quite some time.  Hepatocellular carcinoma (HCC) is the most common type of liver cancer and treatments differ from those used for Cholangiocarcinoma. Andra,   I would try to obtain a second opinion. Based on tumor location, radiation may be an option for your Dad.  However; only a qualified physician will be able to give you the correct answer. I wish you the best of luck.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: CC and 16 cm liver tumour

Hi Andra, I totally understand how u feel.... your government Hospital situation almost same as what happened to my wife...

She 1st diagnosed with CC at Government hospital... they did CT scan and ERCP to place stent to relieve symptoms in 3 days then 2 days later, they ask her to go home and wait 1week to see specialist.

1 week later when we see the specialist, he said they need to have the PET scan (which we need to pay for) before they can do anything, so he ask us to do that and come back next week.

So I ask him let say if we have the Scan and most likely what will you do.. then he said surgery if the scan is clear and only CC and did not metastasized... (but if scan shows the cancer has metastasized then they just give her the time frame and they might not to do the surgery)

then I ask how long do I have to wait for surgery if the scan is good... he said 5-6 weeks. So that means total of 8 weeks since the day she diagnosed CC to the day she can do the surgery...??? I really don't want to wait and cannot take the chance to let it metastasize.. so I went to private and have the surgery done in 3 days after that meeting with government specialist.

Yes it cost more than a year of my salary for that surgery, but somehow I think it worth it... she cut out half of her liver and she can leave hospital in 5 days... (I read some local forum ppl said usually half liver surgery at least 2-3weeks stay at hospital)

Re: CC and 16 cm liver tumour

Dear H Tze,
You are a loving husband and proactive advocate to your wife. How is she doing now ? When was her surgery? What a huge financial sacrifice you have made. I do see now that there is no perfect medical care system, but some are definitely better than others. I sincerely hope your wife will be ok.

Willow

Willow