Time for my experience and help

Hi Carlos,

Good to hear from you and also good to hear that your mum is doing okay with her recovery. I hope she is also managing to get some sleep and that any pain is under control.

I agree with Lainy and Marion regarding the need for a team in treating your mum and also for all parts of that team to have access to all the latest scans, tests and info when they need it. In my dads case, he was diagnosed and treated under the NHS which I guess is the equivalent of your state hospital. His specialist and his team diagnosed the CC and concluded that it was inoperable. Had it been operable then he would have carried out the surgery. He also decided the treatment, PDT and carried that out and also followed dads progress for months after and we still see him. When he decided that chemo should be investigated, he refered dad to the oncologist who made the decision that it could not be done. As for CT scans, it is others that do that, sometimes in different hospitals but all the results go back to the specialist. And for local care, dad has his GP’s who manage symptoms etc and who also have access to all the info they need. And all dads medical team are in close contact via the phone, meetings and letters/reports for his files. Everyone definitely needs to be on the same page and know what the other is doing/recommended etc.

I hope your mum’s recovery continues and that you get things sorted with the doctors.

My best wishes to you and your mum

Gavin

Wow, I am sure Marion will find that statistic interesting. Great idea, Carlos. Even if you just ask the surgeon that will help you to make a decision when the time comes. Good!

Hi Carlos and good to hear from you! I feel it is very important to have a TEAM
to rely on. Teddy & I each have our General Doctor, Oncologist, Gastrointestinal and Surgeon. They all cooperate with each other send all reports to each other as well. Everyone needs to be on the same page. In our cases generally it is the Oncologist calling the shots. They should be more than willing to want to know what the other is doing. Our doctors have even talked to each other about us at times. I don’t know the protocol where you live but when a patient has a rare disease why would they all not cooperate? I guess egos get in the way. So in the end they should all have input on the therapy. I would ask what the prognosis could be in having the chemo versus not having it? Then you and your mother would make the decision. These doctors should realize that we all have enough on our plates without their attitudes. You have the right to get opinions from them all. In the meantime I am so glad to hear your mom is doing so well from the surgery. And that’s a great place to start from!

Dear Carlos,

I’m glad that your mother will have more time to rest and get her strength back before you have to make any decisions. I know she will feel a little better every day. We’ll be thinking of you both.

Best wishes from Kentucky, USA!

Kristin

Many thanks for updating us, Carlos; it sounds a promising start. I join in your hope of your mum’s continued improvement.

Julia xx

Hi Carlos,

This is a very unusual disease, because it’s so unpredictable. Some people have great results with chemo, and others have no improvement at all. It’s the same with radiation. So we can’t really say that chemo and radiation have similar effectiveness. Also, some patients can have radiation and others can’t, because it depends on the location of the tumors.

But you should definitely ask if your mother can have radiation. For many people, the side effects are very mild. I had only heartburn (a burning feeling in my stomach) and some fatigue. For many people, the side effects of chemo are a lot more difficult.

The problem with radiation is that you have to go to the clinic five days a week for 4-6 weeks. But the treatments take only 5 minutes each time, and they are completely painless (like getting an x-ray.)

I hope this information helps you and your mother. I am SO happy to hear that she’s feeling better, and that her mood is better too!

Best wishes to both of you,

Kristin

Carlos, take a deep breath, in and out, in and out! That is why you are going to talk to the Oncologist. He will not throw you to the wind. He will help you make this decision. 74 is not that old in today’s terms. Teddy is 77 and still going through what ever he has to do. Says he wants 10 more years! Long enough to see all grand kids married. If we felt there was no more hope we would gracefully say no more! But when a person is still vital for their age and you have stated your mom is in great health with a lot of strength I am sure the doctor will take all that in to consideration. You will not be alone in this decision. If you need to think about it just tell him you will call him in a day or 2. I am so hoping everything will ease up for you after tomorrow. It seems that no matter what, we all feel a relief when a decision is made. Hang Strong!

In my case, radiation reduced the tumor by 50%. That was the good part. The bad part of radiation is that it left me weak and unable to eat much for about three weeks.