August 2, 2013 at 2:18 am #74199pattimeltParticipant
My MRI was changed to next Tuesday! They had to change it because it wasn’t scheduled until 5:45 p.m and because I react to contrast there needs to be a nurse there. Well they know that when they made the appt.! I am so fed up with the healthcare system. Everything has to be authorized and that means more waiting. It has been a month now with no treatment because of waiting. I sure hope my tumor is not fast growing.August 2, 2013 at 12:00 am #74198lainyParticipant
Clare I agree with you in that CC has to be a curve ball as it ain’t no Home Run! In fact it is foul and out in left field. Sure wish we could strike it out!August 1, 2013 at 10:16 pm #74197claremParticipant
When my sister was diagnosed, her surgeon said her tumour was aggressive and he thought had been growing for about a year (no mention of fast or slow at that point). When he opened her for her resection (which was halted), he said that the tumour had been there for years. Less than two months later this came up again, ‘aggressive but slow growing’. I asked how it could be both and was told that the cancer had to be aggressive to get past the young, fit, healthy immune system that she had (she was 41 with no medical history). Apparently she threw many curve balls at her consultant and caught him off guard in several occasions. I think CC is one big curve ball.August 1, 2013 at 5:20 pm #74196lainyParticipant
Pattimelt, much good luck on your MRI tomorrow and on the biopsy to come. I want to hear some good news. As always take care and be strong!August 1, 2013 at 3:42 pm #74195pattimeltParticipant
My CC was found on a CT scan when I was in the hospital for diverticulitis. They did not know what it was then. They thought it might just be an infection! So nothing was done in the hospital. This was in September. After I went home I saw my doctor who had me do bloodwork which showed nothing wrong in my liver. So then I saw my gastroentologist & she had me get another CT scan & then a biopsy which diagnosed the CC. This was in November. It took 2 months to get the diagnosis. Then went to my oncologist who referred me to UCI. Because of having to wait for all the authorizations to do anything I saw the surgeon at UCI who then told us surgery not possible so sent me to radiology. I finally had SIRTEX radiation in February. 2 treatments. These did not shrink my tumor. So then back to my oncologist for GEM/CIS chemo. This started in June. I had 2 rounds & then my bloodwork showed platelets were way off & my CA 19 was higher than the last time. So now I am on hold. Having an MRI tomorrow & then another biopsy for the gene testing to see if I can be on a trial. Waiting is hard because I always fear the tumor is growing!! And why hasn’t my tumor shrunk with the treatments I have. This cancer is crazy & doesn’t seem to work the same for anyone!! I have to put my faith in my Great Physician!!August 1, 2013 at 10:49 am #74194herculesModerator
Hello Dorien, It was 5 months between initial discovery of a tumor in my bile duct and surgery. It was still stage 1 when I was operated on so I would say my case was slow growing. I have read everything relevent to this cancer and one thing I read was a study linking coffee drinking to slowing the advance of most liver cancers. I drink 2 cups or more a day. Who knows what may affect the outcome but mine has remained in check for almost eight glorious years. One day hopefully medicine will figure out what triggers this errant growth and also what suppresses it.The human body is an amazing thing and they say every cell in the body replaces itself every thirty days. I believe it is this mechanism which goes wrong to form cancer. When a liver containing a tumor is surgically removed what is the blueprint for the body to regrow all those cells? And when the body regrows an assembly such as a liver lobe would this blueprint reform a tumor when reproducing what was there? I have many questions for my maker when I meet him, take care, PatAugust 1, 2013 at 3:57 am #74193pfox2100Member
Thanks for that link. I have had imaging done every 6 months over the last 3 and a half years that showed one large lesion, over time 2 more lesions in other lobe. during this time these all continued to grow and docs continued to report that they were all liver hemangiomas. Until a couple weeks ago when I was finally diagnosed with ICC. Feels very frustrating that I have been monitored over the last 3 years and this was just a mis diagnosis. I try not to focus on the what it’s bc there is nothing I can do except focus on the present and now.August 1, 2013 at 3:50 am #74192pcl1029Member
I think nowadays” the next- generation gene sequencing” will be part of the protocol of tumor treatment vey soon and as common as a CA19-9 in most of the largest specialties hospital to provide a more special and personalized medicine approach to treat malignancy.
To answer about fast or slow growth of CCA, this is an opinion from a liver surgeon,and in my case so far, it is true.
God bless.August 1, 2013 at 3:43 am #74191pcl1029MemberAugust 1, 2013 at 3:01 am #74190
Oh and about the BRCA 1?? Dr. Javle said this was really really unusual…He also had the gene that is common when someone has cc…….I just can’t remember what it is called. The also checked for lynch syndrome and he doesn’t have that either.August 1, 2013 at 2:56 am #74189
Well not sure…they said Gordon doesnt carry the gene that is in his tumor therefore we dont’ have to have the kids tested. But honestly it sounds like anyone can get this.
When he has surgery they will do some more genetic testing as well. The genetic testing is really confusing to me so I might not be too much helpAugust 1, 2013 at 2:44 am #74188mparsonsParticipant
When I first was diagnosed, I too was told that this cancer is slow growing, and that I’d probably had it for as long as two years. My liver numbers had been bouncing around that long, but was blamed on fatty liver and other non-specific diagnoses that turned out to be wrong. My main tumor was 9.5 x 6.5 x 5 cm with multiple other lesions, the largest being 2.3 cm. These were in both lobes, and resected in two surgeries along with cancerous lymph nodes.
When the cancer recurred, it grew and metastasized quickly. I have heard from my oncologist that this cancer can come back very aggressively.
At the same time, there always seem to be exceptions to these assumptions, which I guess is what makes prognosis so difficult. So, for me as a patient, part of the challenge has been to let go of the sense that I can predict the future, and just keep taking the next indicated step.
Best, MarkAugust 1, 2013 at 2:44 am #74187marionsModerator
This is some current information on BRAC 1 and BRAC 2.
Also, I pulled up an older post:
MarionAugust 1, 2013 at 2:17 am #74186pfox2100Member
Hi heather I don’t know anything about that , but at my first onc appt last week she did suggest genetic testing as well down the road. Did you find this helpful?August 1, 2013 at 2:07 am #74185
I meant so say Surgery not chemo….strong for sugery
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