January 25, 2007 at 8:42 am #15074
Thanks Jerry!! Thanks EVERYONE!
One lady who belongs to this forum kindly rang me last night, and I feel very more upbeat about it all! I feel that AT LEAST, there are choices available here that would not be available in Greece.
Yes Jerry, she had a fairly major resction last June, gall bladder, common bile duct, and lower part of the liver, so yes, maybe that is why the surgeons did not want to opt for surgery again. I have no idea. I would have asked them had I been there, but my Mum is not proactive, just accepts everything the docs say! She does not do this in a spirit of miserable acceptance, I hasten to add, she is just comfortable with herself, and the life she has led, and accepts her fate gracefully. Her main fear is suffering lots of pain. Her local Doctor in Greece has told her that returning here is a good idea, as the palliative care far exceeds Greece in quality, so that is reassuring.
I have spoken to Prof.Lodges secretary, have been given the name of a very nice oncologist locally, and told about an immunotherapy trial that she may qualify for here in UK. So at least there are more options if she has a feeling to investigate them!
Thank you all for your help and support! MUCH appreciated!January 24, 2007 at 7:23 pm #15073jerry-dMember
I think you mentioned that surgery to remove the mass your mother has might be considered “high risk”. I guess that was suggested because because of the size of the mass and her age. My experience is that in 2001 I had a 10.5 cm mass taken out of the liver when I was 67. The surgeon described it before hand as “A piece of cake.” Actually I guess it was really liver, not cake, but everything went fine.
Did you mention, though, that she had previous liver surgery. If so maybe that is why they are expressing caution.
From the nice photos on the Web your mother looks in good health — and apparently has a very positive attitude.
Sometimes this is harder or equally as hard for others than on the person with the disease. I wish you, your family and your mom the successes many of the new treatments are providing.
Keep positive, never loose hope, and keep the faith.
Jerry DanielsJanuary 23, 2007 at 8:37 am #15072
Oh WOW!! Thanks for all your replies!! I was going to write to Professor Lodge today, but now I have his secretary’s PHONE NUMBER!!
Also, spookily, one of the surgeons that operated on her in Greece, is currently working at UCH, in the liver unit. That may also be handy, as he will know her case very well of course.
You are all so kind, may thanks! I’ll keep you all posted!!January 23, 2007 at 12:01 am #15071
Hi Kate, Surgery of a tumor that size coupled with your Mom’s age would defenitely be considered very high risk. Howerever, It has been done. I am so pleased to see that your Mom is coming back with you and that you have made so many a plans. It’ll still be a bit hectic at times ,but you sound quite determined to see that your Mom is very well taken care off. My hat is off to ya girl! wish you and Mom all the best.
P.S. Remember don’t second guess or blame yourself for any decisions. Just gather the facts and press on with what you and your Mom thinks best ; a little more so of what your Mom really wants at this time.January 22, 2007 at 6:55 pm #15070alisonParticipant
Prof Lodge is at St James University hospital in Leeds his secretary’s number is 01132064890. We had a 2nd opinion from him re surgery . You are right ,10 cm is a very big tumour, Jon’s was 9cm by 10 cm, but Prof Lodge felt surgery was an option , and I will never regret the decsion to go ahead with surgery despite the outcome Prof Lodge and his whole team are wonderfull,
AlisonJanuary 22, 2007 at 5:00 pm #15069ukmemberMember
Prof Lodge is at Leed University (NHS) Hospital I believe.
There a six centres of excellence for liver surgery in the UK.
My husband was treated at University College Hospital in London, which is one of the hospitals. Kings is the other London Hospital I think.
There are only 600 cases of cc in the UK each year so finding someone with the relevant surgical experience is quite difficult. Oncologists in the UK treat routinely with gemcitabine or 5FU. Avestin and other more experimental drugs which are widely used in the US are almost unheard of in the NHS.
There are two clinical drug trials I know of in the UK, one at UCH and the other in Leicester.
Whatever you do, I wish your mother all the best.
PatriciaJanuary 22, 2007 at 4:22 pm #15067
Thanks Jeff! Bless all parts of your body!!
Well, the latest is that she has decided to return to UK, and forego the chemo in Greece. I think she will most likely forego it altogether. But she has decided that she would rather be here to die, if and when that happens, so that she has access to hospice care here. I am much relieved of course, that she is coming back. We can put her up and look after her etc. As I said, she is fine at present. My Brother is flying out later this week, and I will join them on Sunday, and we will help her get her affairs in order there, and then she returns with me to UK on Sun 4th February.
My Doctor has agreed to take her on as a patient, so that she can be referred to our local St.Barnabas hospice.
I am wondering whether to see if I can get a second opinion when she gets back here. At least if she had chemo here, she would have us to look after her. Or maybe they would consider another op? I have no idea. 10cm is a biggie I guess, as tumours go, so I am guessing that is why the Greeks have not offered the option of surgery. Still feel very much in the dark about these things! Also, why are liver transplants not considered for this kind of thing?
Anyway, I PMd Jules, as I looked up Prof.Lodge’s details, and I see he is to be contacted at a BUPA (private) hospital. Has anyone seen him via the NHS. And if not, does anyone in UK know of any surgeons that have experience of this that ARE NHS?
I don’t know. Feel like we are grasping at straws somehow, unless anyone out there can tell me otherwise!January 20, 2007 at 5:53 pm #15068
Kate : I saw the pics and your Mom appeared in good spirits but definitely can tell she has has been through major surgery. I will be quite blunt and say that you need to make sure your Mom is fully inform of the side effects of chemo and let her make a good sound informed decision of what she wants. By that , I mean does she want quality versus quanity. Also, you need to make sure a support system is in place for her there in Kefellonia. If she decides to go ahead with chemo , she should be staying some place with proper facilities and where someone is available to care for her if needed. You might want to discuss with hospital and let them know her living conditions and see if they can set her up with hospice care. I see your situation of trying to be there for your Mom. I understand the transportation part also, I spent 8 years living in the UK and public transportation was difficult to say the least. Not really Having someone around to help with the children just adds to your difficulties I’m sure. Your best bet is get her Doctor involved and tell it like it is and don’t be afraid to go speak with your local clergy/church; they should be able to help as well. Get Social Services involved and Health care professionals is the best and only information I can think of at this time. If there is other family members around , maybe they can step up with some help as well. Kate be assertive with asking for help as you can’t do it on your own. You’ll go balmy trying. It’s not to early to raise the flag for help. God’s speed Kate; wish there was more I could say to ease your challenge ahead. Hemogenoma what I was told is a surface blood blister that sometimes on the liver mimmickes a tumor but is non malignant. Tell your Mom I envy her … living in a caravan on an island in Greece; I picture as so serene and peaceful. JeffG.January 20, 2007 at 12:56 am #15066
http://i13.photobucket.com/albums/a279/Mateykate/e3.jpg The link is for pic of me and my Mum, taken last year when we returned after the 6 week hospital jaunt to her home in Kefallonia.
This one is her, feeding her collection of stray cats!
She is a lovely artist too.
And she wrote a book. For anyone who fancies a read
These Vagabond Shoes by Prue Corlett.
I don’t know if it’s available anymore, being as it didn’t hit the million best seller list!
I’m so proud of her!
If you need to log in to look at the pictures, my password is BBDD40!
Thanks for listening!January 20, 2007 at 12:44 am #15065
Bless your heart Jeff….and your liver and lungs!
I took such heart from reading your story Jeff, thinking of the fact that your ops sounded so similar, and you’d had 3 years before it came back!! You know how it is!! And now, my anger and frustration has subsided. And yes, it’s because I don’t have a magic wand!!
Hopefully I’ll be speaking to her tomorrow night, and will have more of an idea of what her plans are. But this much I do know………the tumour is 10cm (gulp), and is in her liver. She has been advised to have chemo, in the form of Gemzar. And I believe she will begin this next week at some point. It sounds rather grim, as my kids informed me that an adult liver is 20cm long!
Anyway, I shall babble a little. One of the things that worries me is that she lives in Kefallonia, Greece, and will have to travel to Patras for the treatment. This involves a one hour bus ride, followed by a 2-3 hour ferry to the mainland, and half an hour to hospital. She’s been told it will be weekly treatment.
What also worries me is that she weighs just below 50 kilos (8 stone ish).
She lives alone in a rather scruffy but lovely little caravan. No hot running water, limited facilties shall we say.
That is my ramble.
Also, what is hemagenoma (sp)?
So, now I will begin to trawl this site (and others) for any stuff on Gemzar.
If anyone is reading this, and knows ANYTHING, has anything to say, please say it!! Even if it is a grim read.
I only wish I was there with her. I left my husband and kids (6 and last year for 2 months to be with her. Circumstances have changed a little, and I don’t think I can do that now. But obviously I want to see her again. Do I go NOW? Do I wait and see? Good grief! I’ll have to take the kids with me…….you get the picture!
Meanwhile Mum texts, telling me not to worry, and that she is feeling upbeat and positive, even though she has been told there is no long term solution.
Should I try to drag her back to UK for a second opinion? I believe she is at the best hospital in Greece………but……should I try to het her back to UK for a second opinion? Sigh. I think I’m done!
Yes, any info of any kind, good or bad would be much appreciated!
Jeff, thanks for your reply. I am glad that this site is here. I’m glad that people like you are out there, and I thank you from the heart.
Hope all is going well with you, inspite of it all!
Kate xJanuary 19, 2007 at 10:41 pm #15064
Kate: I’m sorry to hear the news about your Mom. When I was told my CC had returned to my liver, I was so frustrated and angry with the whole world. Then when I was told it had mets to both lungs, the wind was knocked right out of me. No it is not fair but only reality with this awful cancer. I recently had 3D conformal radiation and it knocked the size of my tumor back by 3cm. Depending on the size of your Mom’s, that might be a less evasive way to go and maybe kill the cancer cells; of course only the doctors can evaluate that. I know when mine returned I was prepared for surgery for another resection but after surgeons, radiologist, and oncologist reviewed my scans they thought it was a hemagenoma (sp) and cancelled my surgery. In hind sight I wish they had gone ahead with surgery. Lesion can mean tumor, scare tissue, blood blister but the fact she was previouely diagnosed with cc. would lead all to believe it is recurrence of CC. So I guess I’m saying I got a second opinion from a world renouned surgeon and his colleages and still missed the boat. I would definitely still get another opinion as which direction to take next. You know that a second resection is possible depending age, health, and other medical conditions, and type of resection previously done. Please excuse me as I’m talking in the dark, but just wanted to share what I do know and what can happen. Kate, you can only do your best with this bloody disease. The rest is hope and prayers coupled with self determination and then frequently that’s not enough either. I wish your Mom the best and remember all that frustration and anger comes because we don’t have that magic wand to wave and make things better for those we love so dearly. JeffG.January 19, 2007 at 8:46 am #331
Following a resection last June (2006), and a 6 week stay in hospital afterwards, my Mum (68 years old) has got to enjoy just 5 months cancer free. It is back. She is in Greece. She had a clear scan last November, but went in this week for another check-up. I got a text from her last night saying that they have found a lesion on her liver, and are recommending chemotherapy. I am gutted. That’s all the news I have for now. No idea what “lesion” means exactly. And am frustrated, because unlike most of you, my Mum is just SO un proactive as regards dealing with doctors, and all this stuff. I was out there with her In Greece for surgery last year, and it was really difficult to get any information out of the doctors. The level of care was good, don’t get me wrong, but when I read posts here, about platelet levels, and all the technical stuff that you all seem to be so clued up on, I knew then, and know now, that we lived in ignorance of any of that kind of stuff. And this will quite likely continue, particularly as I am not there to wheedle the small bits of information that I was able to glean when I was there. I feel very sad and very frustrated.
5 bloody months. Bummer.
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