Anyone going the onc soon? Can you ask them a question?
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Hi Kris — You sure sound like a “miracle case” with your early diagnoses and surgery. Your prognosis sounds so positive. Has the jaundice cleared up? My thoughts and prayers are with you for all your future decisions. I’m sure everyone that follows this site will be interested in keeping posted — God Bless!!!!
Jean,
I didnt have many symptoms. I did have some nausea, but I am not sure whether it was cc or just mentral cycle related because it could have been either. I turned bright, bright yellow…my surgeon said I looked like a Simpson. The jaundice made me VERY itchy and tired. But to be honest, I was fine then everything happened quickly. I flew to Glasgow for a wedding on Monday. On Tuesday my eyes were yellow so my friends MADE me go to a doctor. The local doctor ran tests on Wednesday and thought I had hepititis. More bloodwork on Monday, sent to the hospital on Tuesday, turned bright yellow Wednesday. I was kept in the hospital for about a week as they planned my ERCP because they had then decided I had gall stones (took awhile as it was over Christmas). Found no stones, decided it must be cancer. Took brushings during ERCP-no cancer found. Did X-ray, CT and MRI and ultrasound scans, found nothing that looked like cancer. I had my surgery in the middle of JAnuary where they removed my gall bladder and about half my liver where they found the pea sized tumor in the bile duct inside the liver. It had not broken through the wall of the bile duct. It was just in a very good spot to cause jaundice early and be detected. I had no lymph node involvment and the surgeon said he was very aggressive in taking out alot of liver so I would have very large, clean margins. I do feel blessed because my surgeon, and two other surgeons in the hepto-bilary unit really pressed how relatively good I have it. My surgeon said it was the best results and early diagnosis he has seen in his 13 years at that hospital. Another surgeon said, if we listed what we could hope to see in a cc patients surgery and pathology, it would not be as good as my results.All that said, they are quite concerned with how young I am as it was hinted that it can be more aggressive in younger people. Besides, we all know that cc loves to come back for a second, third, forth helping. Now that I am back in Sweden, my surgeon here is very into my case. I have scans every 3 months (rotating between MRI and PET because the pet scanner is 4 hours away). Blood work regularly. Considering I live in the middle of know where Sweden, he is a very academic minded doctor and reads everything and is willing to try anything.
THANKS JEFF!!!!!! I am trying to be positive and look to the future so of course I need to plan. And your news was just what I wanted to here. For my other problem, I will be having a stool sample in a couple of days to see what is what. Thanks again.
Kris
Hi Kris — I’m curious. Is your pea-sized tumor in the bile duct and what has been done to shrink the size? What symptoms did you first have and how was it discovered? It sounds like you have a very good chance to beat this disease, being that it was discovered in early stages. Are you to have it monitored for a while ? It is so difficult to predict what course to take in planning to have children. Pregnancy, of course, can become complicated with all the changes that take place throughout your whole system with the nutrients needed to nourish both the baby and you. It sounds wise to wait a little longer to be sure. That’s just my opinion. In the long run, maybe God will guide you if you turn to Him in prayer. God Bless.
~~ JeanKris, I asked my new oncologist about your DX and how long you should wait. He said if no recurrence within two years is what he would recommend to any of his patients. I hope you have found an answer to your other question or in the progress.
Jeff G.Thanks. I appreciate it. It is very hard when you dont trust your oncologist and a massive language barrier prevents getting a new one.
Kris
Hi Kris, I will be seeing the Oncologist Wednesday and would be more than happy to ask the Doctor. Also I’ll get opinions from two top notch Oncology nurses. Between the two of them they have at least 40 years of experience.
Jeff G.Ok, I am 32 and had my tumor (small, pea sized classed T1, N0, MO–Stage 1). No chemo given as aftercare and no new grown in 9 months. I just got married to the man I have been with for almost 6 years. So now, we want babies!!!
I have discussed this with my oncologist (whom I dont trust). She said if I want them, go ahead and have them now. My best friend who is a pediatric oncologist said the same thing. I find this very irresponsible given the nature of cc. I searched PubMed and an article reccommended to wait 3 years, not because they knew anything, but because they didnt and wanted to be on the safe side. So now I am confused. I, of course, would not try for children anytime too soon. I think I need to wait for so many reasons. But how long do I have to wait medically? What does it all mean? I do not trust my oncologist and given the Swedish medical system and my lack of understanding the Swedish language, I do not know any other oncologist or cc specialist here to ask.
If someone is going to their oncologist soon, will someone please ask how long someone diagnosed with stage 1 cc needs to remain cancer free before they can start trying for a family? Yes, I know the likelihood of the cancer returning, but I am very positive that I am in the top percent of survivors…someone has to be. I know it would be awkward to ask about another patient, but can someone with a good relationship with a doctor they trust please ask. THANKS.
Kris
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