April 29, 2008 at 3:24 pm #19513
Hi Jane and Pauline,
Good to hear from you. I think the Uk is still on a learning curve with CC. My husband went to York hospital for his scans initially under the NHS, although he had private insurance, they were really good and got him tested very quickly, he had unltrasound, a CAT scan, MRI scan and a biopsy all in a matter of a few weeks. When he was finally diagnosed the specialist told us we should have a second opinion, as they had little experience of CC, so we went to the Leeds spire hospital and saw Dr Crellin who is one of the leading Oncologists in this area.
He told us that while Ray had a good quality of life there was no piont in making him ill with Chemo, so we just waited and watched what developed. At the moment it appears to be slow growing but we know it can all change. But we make the most of things while we can. We are going on holiday next week for nearly a month driving through France and Spain with the convertable we bought with our retirement savings just after he was diagnosed. Because he still has no symptoms we would still not know he was ill, which was a bit of a bummer really, as we have had 18 months of worry, but on the other hand it has given us the opportunity to make the most of family and friends, and in a way, come to terms with the fact that while he is well now, we know he will get worse and will need chemo. It is quite hard for our daughter, as she is a 4th year medical student, so she is contantly looking on the medical sites to see if there are any new treatments, but she is a great support to both of us.
I hope you both continue to find the strength to be a rock for your loved ones – it is good we can let it all hang out on this site!
Hope your next news is good news!
Sue xApril 25, 2008 at 9:56 pm #19512paulineMember
Dear Sue, Jane, Ron and other UK members,
It’s really good to make contact with you. This can be a very lonely disease,can’t it? My husband, Anthony, was diagnosed with intra hepatic cc a year ago and is a patient at King’s College, London.
We found king’s to be very supportive as have the other hospitals where we have sought treatment eg Barts(radiotherapy – external beam) and Hammersmith(a second opinion). King’s have been brilliant in treating my husband’s underlying PSC with stents, regular scans, hospitalisation for infections, regular blood tests and out patients appointments. When they discovered the cancer while replacing his stents, they suggested chemo therapy straight away and have listened and tried to meet our requests for treatments ever since.
It does seem from reading your messages that the approach to this disease varies according to the part of the UK you are in. It might be worth us keeping in touch so that we can compare notes. We are very willing to share our experiences if you are interested.
With very best wishes
Pauline, London UKApril 20, 2008 at 10:09 pm #19511janecwMember
I live in North Yorkshire so not too far away from you. My sister was diagnosed with cc last November she is 42 and lives in Cheshire and is receiving treatment at Christies in Manchester. She is now 2/3rds of the way through her chemo regime and results so far have been promising. Unlike your husband she was suffering pain which lead to the diagnosis and the cancer had spread outside the liver. We are all “her family” hoping the chemo stops the spread and contains the cancer.
What hospital is your husband under?
Good luck to you both it really is a very hard struggle, keep positive and don’t loose your sense of humor somebody told me that so that’s what I try to do.
Jane UKMarch 29, 2008 at 12:52 pm #19510kristinMember
And it does me good, too, to hear that other people also are having experiences with CC that don’t fit the “normal” scenario, whatever that might be. My oncologist, who is not very easy to talk to, said last time that it would be interesting to look at the DNA in my tumors and see if there’s something different about it. I said I’d be happy to give a sample if it might help other patients but then he didn’t seem to want to talk about it.
And Jeff, just reading about your experiences is SO encouraging to me– that you’ve just kept right on going! My goal is to stick around as long as you have, and by then they’ll find a cure!
The best of luck to all of you!March 28, 2008 at 2:54 pm #19509
Kristin, thank you for your comments, I agree with you they dont know much about CC or it’s causes. My husband might have had this tumour for many years, we dont know.
It is good to hear of someone else with our experiences. Long may they stay stable!
SueMarch 28, 2008 at 2:51 pm #19508
Dear Jeff, I understand a little how you must be feeling, our friends all say “brilliant!” when another scan is OK, but you are living your life holding your breath until the next scan. the only way we can get on with life is to pretend it isnt happening, and just act normal.
You sound as if you have had enough of the Chemo – we were told it only has a 30% chance normally of working ie. halting the growth or helping with symptoms, and for my husband he wanted to do too much to have his life interferred with by chemo side – effects.
I do hope you get some good results next week, will you let us know?
We will be thinking of you.
SueMarch 28, 2008 at 1:42 pm #19507jeffgMember
UKSue… I remained well or I should say I decided no treatment for approximately 6 years. I followed progression with CT Scan every three months. Basically I was told if chemo or radiation is going to work ,it will do so then as well as now. I just had to decide the cut off point. In other words I decided after years of monitoring to start trying chemo and radiation. So for the last approximately 4 years I have been on a roller coaster and now I’m back to making another decision to stop chemo at least because my bone marrow WBC,and RBC’s are extremely slow in recovery and need help with antibiotics and filgratism injections. To my knowledge the only thing to retore/replenish my body is a bone marrow transplant and that could take as long as a year. Ct Scan Monday, I’ll go get a copy on tuesday and be making a decsion which direction I want to go. I still remain optimistic and hopeful that I can real some more quality time. But the approach i’m on now is a one way street and has already subjected me to pnuemomnia twice if not currently going threw it again. There is just to many opportunities for me to get seriously ill as if not already ha! I will put my Oncologist to the test this Thurdsday as he will see and hear a different side of me he has not seen before. My exact approach is not written in stone but yet but it will contain more of a immunotherapy approach and stop killing my bone marrow any further. Some may think I’ve been one of the lucky ones but I guess it is how you look at it. Living with this disease and fighting has now become a full time job for me. Other than pain and trying to keep normal body functions I’m holding my own. The next couple of weeks/months will play a big role in which direction my health decides to go. Have I had enough chemo? Do I need more radiation? Should I go for a complete bone marrow transplant? Should I try a regimen of the most potent broad spectrum antibiotic? a lot of little ideas zooming through my mind. Kristin, yes it DOES happen! Positive end result is what I’m still focused on. Should I really get further in to meditation/visualization mind and body healing?
Jeff G.March 28, 2008 at 12:10 pm #19506kristinMember
It’s really strange how differently this disease progresses in different people. I had a recurrence 32 months after my first surgery, just when everyone thought I was “out of the woods.” The tumors weren’t resectable the second time, so I had radiation, which shrank them, and they have been stable for 14 months now. My oncologist says he’s “never” seen CC act this way. Well, obviously if DOES happen.
The best of luck to you!March 28, 2008 at 10:31 am #19505
Thanks for your replies and good wishes.
Jeff, how long did you remain well and did your CC continue to progress slowly? Sorry to ask I am sure you have given all these details before but I cant find the thread. Hope you are keeping well now – and Happy anniversary it is such an acheivement for you! By the way no relationship to your sister -in-law!
Ron, We are near York – What your doctors said was word for word what they told us. I agree it is difficult to do nothing, but in our case it was the best choice as my husband has had over a year of good health when he would have had chemo side effects.
Kris, Thanks so much for your kind thoughts. all the best to you.March 28, 2008 at 10:01 am #19504devoncatMember
I am so glad your husband are holding stable. I am sure it is such a relief. Best of luck in the future scans and have fun basking in life.
KrisMarch 27, 2008 at 7:06 pm #19503ron-smithMember
Hi Sue, glad you and your husband have found this site. There are not many of us from the UK. Where are you based?
There certainly seems to be a “leave well alone” attitude amongst the cancer specialists in the UK as this is what is happening to me as well. I was first diagnosed in July 2006 and had surgery to resection the liver and bile ducts in August. The tumours reappeared in February 2007 and this time the whole of my right liver lobe was removed. Multiple tumours were found in Sepetember 2007 but this time surgery is not an option. I expected to be given chemotherapy and radiation straight away but the view at the cancer centre in Glasgow is that there is no treatment that will do any good at this stage and so while I am keeping well and have no symptoms I should have no treatment. The rationale is that any treatment could make me feel worse and is unlikely to have any positive effect. I attend the centre every month and they do blood tests and that’s about it. If I start to have symptoms then they will look at palliative chemo and any new treatments that may be available then. It is a strange siuation because I feel something positive should be done now but, by the same token, I would not want to start something that could put my health into decline.
I hope you and your husband continue to get good news and are able to pass it on to us for some time to come.
All the best
RonMarch 27, 2008 at 5:49 pm #19502jeffgMember
UK Sue, Sounds so familiar of how my situation started. Surely wish you and your husband the bestest!!! Celebrating my 9th birthday about a week ago. You are absolutely correct when you said it is unpredictable.
Best wishes and continued stablization!
P.S. I have a sister-in law in the UK name Sue. Is that you Sue? Ha!March 27, 2008 at 5:19 pm #1142
My husband was diagnosed over a year ago with CC through a routine scan – he has one large tumour 8cm and a few other satellites in the other lobe. As you can imagine it was a great shock to all the family as he was symptom free. He has been regularly tested every three months since then, the consultant told us to hang fire for treatment as he was still feeling well, so we had a year of travelling and trying to fit everything in with holidays friends etc. At his last scan the consultant said that over the year there has been only a few mms growth in the satellites – the large tumour was virtually the same. I understand that CC is very unpredictable, but we are hoping his is slow growing so that he can keep well without treatment for as long as possible. Just wanted to share this news to try to give hope to anyone recently diagnosed. Statistics take only an average view of things – we were told six to 12 months was all we could reasonably expect and we have had a year of expecting the worst. Although we are still cautious, we are now hoping for the best. Sometimes it is better to see what is happening before jumping into treatment straight away.
Our fingers are crossed for more good scans in the future.
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