sara

Eileen,

I apologize if I missed this above, but have you sent off the tumor slides to another facility for a second/third opinion? The diagnosis is critical to be sure the “virgin” cancer cells are treated with the best chemo possible on the first pass. I would pick one of the major cancer centers that routinely sees high numbers of cholangiocarcinoma, pancreatic, and lung cancer patients. I’m not sure about lung cancer, but Fox Chase, the Mayo Clinic, Memorial Sloan Kettering, and Johns Hopkins are all hospitals relatively close to you that are highly involved with pancreatic and bile duct cancers. I know that some of the institutions may tell you that they require you come in and see a doctor to get a second opinion, but historically patients have been able to push for a second opinion on diagnosis through just sending the medical records to other cancer centers. I think it may help if your husband’s oncologist makes the request.

All our best to you and your husband.

– Sara

Katja – that is fantastic that y’all are in the process of raising funds for AMMF. Please keep up the efforts, as we are all in this together.

If you have time, could you please forward a summary of how you raising money to assist research? We would love to pull together some stories to help inspire others to host local fundraisers.

Happy Valentine’s Day!

Gavin,

Thank you so much for getting this up on the boards! We will send out an email to our distribution list as well.

– Sara

Codergirl,

I have never lost a parent, but I did lose a sibling when I was 17. I wish I had good advice for you, but the reality is that it’s hard, and only time will make the mundane tasks seem more bearable. You already said it – take one day at a time. Allow yourself time to grieve throughout the day. Recognize that you won’t be as productive in the coming days/months, and don’t beat yourself up over it. After my sister died, we found it helpful to spend all important dates and holidays on vacation. It’s not always practical, but if you can get away from your normal routine on big holidays, birthdays, anniversaries, etc, it may also be helpful for you. (particularly in this first year)

Above all else, don’t ever hesitate to lean on those who love you. There is a community of people on this board that are here to listen to any ramblings you need to get off your chest. I imagine you also have a strong support system in your life that are desperate to help you out. Give them a call and ask for help when you are feeling lost. No doubt they will be extremely happy to be able to support you.

Big hugs,

Sara

Marion’s link is a great resource. The Princess Margaret hospital in Toronto is doing a great deal of work on cholangiocarcinoma in Canada. Hopefully this is an option for you. Here are a few doctors, which are mentioned in the link Marion provided:

mlodge
Member
From: Toronto, Ontario, Canada
Registered: Thu, 04 Jun 2009
Posts: 46
IP: 99.233.36.112
E-mailRe: Treatment Centers/PhysiciansI am at the Princess Margaret Hospital in Toronto.

Surgical Oncologist is Dr Alice Wei 416-340-4232, Medical Oncologists are Dr Jennifer Knox 416-946-2399 and Dr Anne Horgan, and Radiation Oncologist is Dr Rebecca Wong.

Thanks,
Mel

Last edited by mlodge (Tue, 08 Sep 2009 20:09:44)

moontje – Out of curiosity, what type of skin cancer is it?

I would suggest discussing this further with your husband’s CC oncologist. Certain types of skin cancer are very common, and it is very likely that the skin cancer is unrelated. However, your oncologist is going to know the real answer to your question.

My husband had skin cancer (basal cell carcinoma) in 2008, and then was diagnosed with follicular lymphoma in 2009. Completely unrelated, although both manifest in the skin. Basal cell carcinoma makes me laugh because you will see on insurance application forms, “Have you ever had cancer (excluding basal cell carcinoma)?”