debnorcal

Judith,

I live in the US, so I am not familiar with UK systems. I’m sure some of our European members can advise on medical systems and patient/caregiver rights in the UK though. I “hear” the desperation in your words and would like to offer a bit of general advice. First, please know that no matter what, you will not be alone. This discussion board is full of compassionate and knowledgeable people, and we will be there for you and Mary as long as you need/want support. I found it extremely helpful to correspond with others that have walked in my shoes (and my husband’s). This disease often hits so fast and hard that it can be completely overwhelming. My best advice right now is to try to stay calm and focus on needs that are immediately in front of you. Perhaps most important is to understand exactly what Mary’s diagnosis is and what treatment options are appropriate currently. Also, best provider for them. Dr. Valle should be able to explain this to both of you. If you don’t understand something, ask the doctor to clarify. You are entitled to this information. Once you know the complete medical situation and treatment options, then the two of you (you and Mary) can discuss how she wants to proceed, Same with social worker. I suggest you ask for specific concerns they have about Mary returning home and then perhaps you can take steps to overcome those concerns (for example, if she is too weak to manage stairs and the home has many steps, maybe she could occupy an area on the first floor.) Whatever they say, I would try to really understand the issue and work with them to find the best solution for Mary. I hope I don’t sound too “preachy”. I just wanted to share what worked for me – addressing the most pressing issue each day and trying not to think beyond the next day or so. I hope that you and Mary get the information and support you need and deserve. Debbie

Awesome! Good for you, Dennis.

Thanks for posting. It is so encouraging for many on this board to hear of the successes!

debbie

Hi Liz,

In January, 2015, my husband had an extended right hepactomy with portal vein and bile duct resections (hilar CC). This is a more extensive surgery than is proposed for your husband but perhaps our experience can be helpful to you in getting an idea of what to expect. We were told that the first step in the OR is to open up and explore stomach and other areas to be sure cc hadn’t spread. (If it had, they would have stopped and closed him back up.) Assuming they proceeded the doctor expected total time in OR to range from 8 to 18 hours. In my husband’s case, it took exactly 10 hours – 3 to explore then 7 to perform the surgical procedures. The doctor utilized a “no – touch” technique, which essentially involves taking a slice of bile duct tissue where they think they have all the cancer and freezing it and running it to the lab for visual inspection. They do this repeatedly until they get clear margins and this takes quite a while, so contributes to the total overall procedure time. I would expect that your husband’s surgery would take considerably less time because it sounds like they are removing less of the liver and have no portal vein reconstruction involved.

After surgery, he was in ICU for one week and then a regular room for two more weeks before release. His complications included an embolism (blood clot) in the portal vein, a small bile duct leak and C-Diff (nasty bacterial infection). We are 80 days post-op and he is recovering well. Still weak but getting stronger every day. Planning to return to work soon. For us, the operation was absolutely worth the risk and the complications.

I agree with Judy’s comment that your doctor can give the best idea of expected timing. I love hearing about all the resections that are being scheduled lately. It seems like we’re making some progress toward managing and hopefully curing this awful disease! Wish you and your husband the best possible outcome.

debbie

Hi Matt, Just want to let you know that I’m sending wishes for continued healing to you. I’ve been following your journey as you post and am praying for continued good news for you. My husband has traveled a similar journey, about a year after you. He had a successful extended resection at UCSF on January 12, 2015 and is recovering well. Your attitude is similar to his as well – stay calm and positive, face each issue as it arises and keep your eye on the prize. Through your example, you and he are both showing your families how to deal with adversity -an incredible gift for spouses and kids.

You have a beautiful and supportive family. Stay strong.

debbie

Welcome, Amy.

My husband also has CC and is about a year behind Matt. He just had his resection on 1/12/15. I have been following Matt’s journey and sending him prayers and positive thoughts. I am sorry that Matt has taken a downward trajectory at this time. Stay strong. There are many excellent doctors and better treatment options surfacing all the time. Best wishes to you and Matt as you search for the best options. Please know many are thinking of you.
Debbie

Hello Wensdi and welcome to our group. First of all, oh my gosh, this must be so overwhelming for you. Even though CC is a rare disorder, it comes as an even greater shock when the patient is so young. The members of this board are exceptionally caring and knowledgeable. This, in my opinion, truly is the most informative source you can look to for information and guidance. I know it was for me when my husband was diagnosed nearly a year ago.

It would be helpful if you could provide some information about your son’s diagnosis. Where is the CC located, what were his presenting symptoms, how was it diagnosed and by whom?

I’m sure you will receive some very helpful information from our members about how to proceed, nearest medical centers with expertise in CC, and ideas for seeking treatment when medical insurance is not available. The doctors that do not specialize in treating CC tend to use a palliative, “just deal with it” approach and may not even be aware that there are more and more effective treatments surfacing all the time. It is really important to seek a knowledgeable doctor that treats many cases of CC. All my best to you and your son.

Debbie

My husband started experiencing similar discomfort about 6 months after his exploratory surgery. A CT scan was clear. His doctor attributes it to nerve endings that were cut and remain sensitive.

Hope this is helpful.

Debbie