September 16, 2009 at 10:46 pm #31017marionsModerator
Katie…..that is a good question to ask the physician, and I think that you should do just that. I would also request all medical records including everything and anything such as, CT, scan, surgery report, blood test, etc.
I am thinking of you and am sending all my love your way,
MarionSeptember 16, 2009 at 10:13 pm #31016valjeeMember
You can fight for the both of you – I’m sure Billy D will do his bit too.
Ps Is Laura out of the wardrobe yet?September 16, 2009 at 8:03 pm #31015katieloumattMember
Sending you my thoughts and prayers at this most difficult time for you and your darling sister.
I live in Manchester, my parents live in Florida and in May this year my beloved Dad was diagnoses with cc, he had a 2 stage operation. The first was where the docs placed a stent into his bile duct then portal vein embolisation the following day where the blood supply to one side of the liver is killed off in an attempt for the ‘good’ side of the liver to re-generate. Dad then went back to theatre 5 weeks later for the liver resection.
He was in theatre an agonising 10hrs and when the doctor came to tell us the news we had dreaded…. The cancer had spread, 1/2 of his liver had been removed and what was left still had cancer in it… My beloved Dad didn’t stand a chance and passed away 9 days later without ever regaining consciousness.
My concern is that why the doctor proceeded with such radical surgery when the outcome was going to be so bleak for my Dad?
Your sister’s surgeon obviously realised the limitations of surgery on your sister and now maybe a different mode of treatment will be offered to her.
Just to let you know I know exactly how helpless and anxious you are feeling. Please stay strong and look after yourself, it’s difficult I know, but your sister needs you to lean on, and you in turn need someone for you to lean on….
KatieSeptember 16, 2009 at 1:27 pm #31014lainyParticipant
Hi Julia, hard call to make as always on do I do more or less? Thought perhaps it was time to bring out the Cancer Rules Again as its been awhile:
If I should express anger or depression,
PLEASE DONSeptember 16, 2009 at 12:47 pm #31013lalupesParticipant
I was crying when I posted yesterday & today, reading all your wonderful messages, I nearly started again! You are all the absolute BEST. Thank you.
I now feel we’re into a new phase. I had thought that a new phase would start post-surgery & today, even though the planned surgery didn’t take place, I feel we are “post-surgery” & that the new phase has started.
I spoke to my sis this morning & she said they took nodes from two separate sites on the liver & both tested positive for cancer. Now I know, at last, what we’re dealing with, I – oddly, perhaps? – don’t feel so helpless & in the dark any more.
So the BEAST has now been NAMED (thank you, Kris & Jolene – maybe it’s not so odd that I feel less helpless today, as I have something concrete to fight now).
Viola – thank you so much for posting; particularly as you say you don’t often post. I’m grateful that you were so touched by my plea that you wanted to reply. I presume they can’t take the tumours out, if 2 out of 2 tests proved positive – as they won’t know how many others are in there. We’ll see, though. My sister won’t give up & neither will I.
I’m in a dilemma, though, as it’s HER cancer, not mine (not that I wan’t it!! Absolutely not!!) & I feel I ought to pull back to let her deal with this in her own way & in her own time. I don’t want to suffocate her with my worries, too, but I don’t want to pull away from her. Do any of you others feel like this?
Today, I’m not sure if I’m fighting for her or for myself. I suppose I’m still in shock.
Not sure what I mean, now – I can feel I’m starting to ramble.
Thanks again & love to you all.
JxxSeptember 16, 2009 at 9:06 am #31012violaMember
Julia, I am sorry to hear this news. Due to my English isn’t quite good, I come to visit this website very often, but post rarely. But I feel I need to reply your post this time.
I don’t know why the doctors give up to do a resection for your sister? why didn’t they remove the tumor appeared at liver simutaneously? Or the liver tumor is closed to portal vein?
As I know, if the tumor appear at the liver, they can remove bile duct and partial liver. Originally, my Mom was planned to do such kind of surgeory, but failed. My mother’s cc has been meta to right lobe of liver and form two tumors, one is 6 cm and the other is 2 cm around. The doctor said they will remove the whole right lobe and the bile duct. Unfortuately, after laparoscopy, they found peritoneal metastasis, so they give up the resection option.
So, do you want to search for the 2nd opinion? If your sister only has one tumor appeared at liver, I think it should be resectalbe.
I hope you can understand what I mean. I really hope your sister can have a resection surgeory……September 16, 2009 at 2:47 am #31011daddysgirl-2Member
So very sorry to hear this latest update. My thoughts are with you, your sister and your family.
Kris has a great idea, from another post…name the beast and give him HELL!!!
Sending you love and hugs to share,
JoleneSeptember 15, 2009 at 10:47 pm #31010darlaParticipant
I am so sorry you all had such a frustrating, aggravating day. Any then to get such disappointing news. You have every right to be angry and to rant a bit. Coming here to vent your feelings was just the thing to do and it does help. Hopefully tomorrow will be a better day. As Lainy mentioned, I think I too would want to let someone know that there was a hugh lack of communication here. Hoping for better tomorrow’s for you and your family.
Love & Hugs,
DarlaSeptember 15, 2009 at 9:46 pm #31009gavinModerator
Sorry to hear this news and yes you have the right to be angry. So shout and yell and let off steam and come out tomorrow fighting again.
As Lainey points out, now that you know the diagnosis then your sisters medical team can get to work with what the next step will be. Dont give up hope. As you say, this is not the end and tomorrow is another day.
Take care and my best wishes to you and your family.
GavinSeptember 15, 2009 at 9:34 pm #31008devoncatParticipant
I know this is disappointing and not what you or any of us wanted. Hang in there and tell your sister to hang in there as well. There have been several members who had surgery after chemo. This doesnt have to be the end.
KrisSeptember 15, 2009 at 9:25 pm #31007valjeeMember
Oh damn & blast mate!
That’s totally unneccessary stress added to an already highly stressful situation.
If it helps to turn the pressure cooker down a little, I think that a lot of nurses & doctors do give a damn but the conditions they work under makes it very hard for them to prove that at times. But it’s not really any consolation when your blood pressure is way up & just a few words would put this right. As Lainey rightly says at least you now know the situation, you can all take some deep breaths & explore Sue’s options over the coming days & weeks.
You take good care, stay strong, big hug, Val xSeptember 15, 2009 at 9:13 pm #31006hughesdewyMember
Julia, I’m so, so very sorry to hear this about your sister. It’s so cruel and awful, and just not fair.
There is more you can explore: and perhaps you can talk to the surgeon and her oncologist about these things.
Some things we explored for my mum were:
– Radiotherapy (inc microwave ablation) – but that depends on the position of the bile duct tumor and liver tumor. We spoke directly to one of the top guys at Leicester Hospital about this; sadly not suitable for my mum but who knows – it could be something that could help your sister? http://www.acculis.com/guide-to-mta/
– PDT – Gavin has filled you in with the info here which has worked wonders for his dad!
– Alternative therapies – my mum looked at mistletoe therapy which can work well in conjunction with Chemo and take away the symptoms of chemo. It can even be administered more gently by GPs. This is becoming a more recognised therapy by some conventional doctors and can even be given on NHS.
– Above all, being positive, which you are so good at – and it does work.
Don’t give up hope Julia, your sister needs you more than ever, and it sounds to me like you are her guardian angel.
Wendy xxSeptember 15, 2009 at 9:03 pm #31005lainyParticipant
Julia, what a nightmare. You have every right to be angry. Very angry. When I feel that way I go sit in the car and give a scream, it does help. Sometimes I wonder if hospitals, doctors, etc care anymore. But then thank goodness someone proves me wrong. If it was me I would certainly let the assistant know. On the bright side, now you really know what the diagnosis is and will soon have some direction and that in itself gives some comfort. Our best to you all.September 15, 2009 at 8:57 pm #31004marionsModerator
Julia….what a trying day for all. Unfortunately, the only way to determine the real extent of this cancer is by laparoscopy or, surgery. I am sorry to hear about the findings of another tumor. The lack of follow-through and follow-through of information at Kings has been mentioned before and I had thought that things had changed for the better. Obviously, that is not the case. Julia, other options are coming your way. And, we have seen, on this board, for members to have had another chance for a resection after the initial surgery had been cancelled. I am glad that you let off some steam. This is the place to do so. And, I am really, really, angry too, for the lack of communication at Kings. Therefore, I will join you in the process.
MarionSeptember 15, 2009 at 8:34 pm #31003lalupesParticipant
Thank you all so much for being with me. The Specialist Nurse had promised she would call us; she promised she’d be there for us; all we had to do was call. We called 3 times during the day for news but no one called back. She called me back at 7.15 this evening – but by that time we’d got through to the ward & had been told by one of the nurses there that my sister had been back on the ward since early afternoon. She wasn’t supposed to be going back to the ward this afternoon; it’s an 8/9 hour operation & she was then due to go to ICU. So the nurse told us they’d done a laparoscopy before attempting the hepatectomy & discovered another tumour in her liver. So they won’t be operating after all.
I always knew this was a possibility but what a way to find out. I feel so betrayed. I feel completely let down by the hospital & the Specialist Nurse.
I’ll pull through this tomorrow but I feel absolutely awful now.
I know this isn’t the end; so many of you wonderful people have already shown me that, but I feel horribly bleak at the moment.
Thank you for being there to help me let of steam like this.
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