recent diagnosis-to seek a second opinion?
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just a quick note to say thank you again to everyone who has been so supportive and helpful in their postings, you have really helped me through this tough week, I am travelling up north tomorrow and have a sense of peace and strength I didn’t think I would ever have, between my friends in life and my virtual friends here, I know I will be ok and I will be in a good place to support my wonderful mum and dad. I will keep you all posted how the coffee with mum goes and how the oncology appointment goes on Monday, thanks again xxx
Hi Moonpie,
It sounds to me as if you are doing everything right here and are doing a great job as well! There is no manual for any of this at all. Nothing to say do this or do that and if that doesn’t work look at doing X, Y or Z! We all just do our best and do what we can and you certainly are doing that!
As far as wobbles go, well that is normal I would say! Had a ton of them myself over the years that I have been a carer for my parents and no doubt I will have many more as well. You are right about not burdening yourself with information and keeping it secret as that will get far too much for you.
Yes this is a long journey and if you take it all on your own and sprint then shin splints will definitely happen! You need someone to talk to about everything and that is what we are here for. You are not alone in this anymore, we are here with you. And as I said to you before, we so know what you are going through right now and how you are feeling.
My best to you and your mum,
Gavin
PS – A coffee and a talk with your mum sounds like a good plan to me. Let us know how that goes.
To All My little Grasshoppers above, you are all so wise. Moonpie, if you look at my first post above to you, I said perhaps Mum is stronger than you think! OMG I LOVE this site and all of you! I was hoping you could have your get together with Mum before Monday. But I will take what I can get and so far you are doing so good. Wish I could be there with you! Sending my spirit though across the waters!
Moonpie,
Hang in there. You are all doing incredibly well.
Your last post has brought back lots of memories about when my sister was diagnosed. Initially there was a whole lot of everyone trying to protect everyone else. My sister trying to protect her husband, her husband trying to protect her, my parents trying to protect all of us, my sister protecting mum and dad from bad news and on and on it went. I remember one occasion, mum breaking down and saying to me she was the only one not coping, nobody else was a mess or crying and she had to get it together and get strong. She was so way off the mark – I was crying and breaking down all the time – but only with my husband or other sister. I had done her a disservice really by hiding it from her and whilst trying to protect and help her had inadvertently made her feel worse.
Don’t get me wrong, I still feel there is a pecking order to dealing with my sister illness and I will not unburden the extent of my feelings on my parents or my sisters husband but I don’t go to the lengths I did to hide my feelings to protect mum. I’m rambling now but talking and communicating when done in the right way and with sensitivity can only be a good thing.
also it is so true that I need to unburden myself with having to feel like I need to keep the information secret, it starts with getting mum to be honest with herself about how much she wants to know and guiding her with the help of professionals to go through the information and to break the news to dad,
this is a long journey I cant take on my own and if I sprint now im going to get shin splints later- someone at work put it that way and it just makes sense to take things easy, find people/means of reaching out for help to unburden the load and not to always play the social worker- I do that for my dayjob!
I cant thank you guys enough for your honest and sincere replies, it is so comforting to me at the moment to know that how I am feeling is natural and to know that you also feel the same as me about the situation
I had such a wobble last night as It all kicked it off when I was speaking to mum and dad on the loudspeaker on the phone because mum and dad were being so so optimistic and misguided about the treatment and prognosis, however mum texted this morning and said she really wants to ask the oncologit lots of questions and wants to get things off her mind, I now know that mum is trying to be very upbeat and optimistic for dad,i felt really angry at dad at first for egging her on about the chemo blasting out the tumour and that shes gonna be fine but I have had time last night and today to think and reflect and feel dads pain and this is way of shielding the true pain he must feel deep down,
I texted mum back and said that just me and her shoud go for a girly coffee together , try and give dad some head space and also to give mum an opportunity to open up to me, I want to ask her how much she knows/understands without dad being there and then go from there and ask her how much she want to know as she sees so desperate to get answers, in a way I am relieved she is like this, as at least we can hopefully have an honest conversation and give mum the best chance of making an informed and personalised choice over how to go about treatment and to help her begin to come to terms with the process/journey ahead.
Clarem,
Thank you for that post. It is such a delicate and heavy responsibility being the bearer of information of this kind. Especially to a loved one. My sister really doesn’t want to hear a prognosis or stage but finally did get that info from her Dr. She is going through all the emotions Randi mentioned. It is so hard to know she is suffering! She has regrets and anger about a lot if things and wants to catch up on all the things she feels she missed out on. The only great thing about having this horrible CC is that she immed quit her jobs and can be a full time mom to her son for the first time (he is 9). Anyhow, Those who have posted responses so far to this topic really are hitting home. Thank you.
WillowI’m with Lainy and Gavin in that your mum should know the full picture. Only then can she make decisions based on the true facts. Even if information is held back, somewhere in her mind she may well be wondering and thinking the worst. I do feel slightly hypocritical in righting this post as I did propose not telling my sister the extent of her illness at one stage. Her husband asked me to deal with the doctors for him and many times I knew information before my sister. I was generally the sounding board for the doctors on how we were going to broach breaking news. I worried about telling her and equally worried about not telling her. In the end she knew everything and her strength and courage amazed me – every single time. Nothing went to plan for her but knowing allowed her to make important decisions. Some decisions in the end when she was at her sickest I made for her but I hope they were the right ones for her based on previous discussions and decisions that had been made.
It’s also incredibly hard for you being expected to carry this news in secret and there were times when I didn’t know what else to do or how to manage the blows that were dealt. I eventually realised I couldn’t do it all and needed the doctors to pick up the baton which my sisters GP and surgeon always did for me. What I’m in articulately saying is you need to look after you too.
Moonpie,
I will also start by saying I am NOT a medical person. I am only speaking as a person who had CC and from my person experience.
First let me say that I am so sorry about your Mum and the dilemma you find yourself in about how much information and honesty about the course of this disease you should share with your parents.
As person diagnosed with this disease I can tell you that I would have been angry if anyone had been dishonest with me about my diagnosis and prognosis, however, I do think that doctors approach each hurdle individually and talk testing first, then about whether surgery is an option and chemo/radiation. This has been my experience for all of the cancers I have had. They try not to dump too much information on you at once. But there does come a time when they should tell it like it is and it sounds like maybe that time has come for your Mum.
In order to deal with the diagnosis and prognosis, I had to pass through many stages until I came to “fight”. I could not have bypassed anger, shock, hurt, sadness, and anger. These are normal responses. As difficult as it is to witness or be part of bringing on these emotions in others, it is the natural course of things.
Life is living each day with full knowledge of what we are facing. I vote with Lainy and Gavin about being truthful. It’s not easy for sure.
btw…I had a Whipple and it’s a huge surgery and a long recovery whether it’s laproscopic or a full open incision. My sense is that it’s “what” they are doing that impacts the body, not how they got there.
I wish the best for you and your Mum and Dad.
Take care,
-Randi-Moonpie,
Here is a link with more info that Sylvia provided about her keyhole whipples –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2600
And a link to the surgeon who did the procedure –
http://www.leedsth.nhs.uk/no_cache/consultants/consultants/?tx_lthservices_pi8%5Bconsultant%5D=727
http://www.leedsth.nhs.uk/a-z-of-services/hpb-and-transplant-services/
Gavin
Hi Moonpie,
Thanks for letting us know how the conversation with the consultant went and it sounds to me like you got all of the answers to the questions that you had. I do hope that it makes things clearer in your mind as to what is happening and what the options for your mum are. I know as well that you will find out more info re chemo etc when you meet with the onc on Monday.
As to the whole sugar coating thing, I have to say that I am in Lainy’s camp on that one. With my dad, he wanted to know everything so that we knew what he was up against and what was happening. I always said to my dad that he was that patient and he had to make the decisions that he felt were best for him and him alone, and not do what he thought that we might want him to do. I said to him frequently that i would support him in what ever he decided that he wanted to do, no matter what.
I too feel that every patient should be told the truth about what is happening so that they can make informed choices for themselves. Of course, if they ask your advice or thoughts then you should give them, but I feel it is up to each individual to make their own choices based on knowledge that is given to them from their doctors, consultants, oncs etc.
My dad took a lot of hard knocks along the way in his fight with CC and he bounced back each time a few days later. Knocks such as surgery being ruled out, chemo being talked off then not being able to do it at all, that sort of thing. Your parents may surprise you with strength that you perhaps thought that they don’t have just now? Personally, I don’t think the onc will fluff up anything but will tell your mum what her options are re chemo and what it involves.
As to the whipples being done via keyholes, one of our members Julygirl had that done here in the UK and here is a link to one of her posts about it –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4205
As to whether that could be done for your mum with her existing health issues I could not say either way. But it still sounds to me like it is a very invasive procedure and Sylvia had to go through testing to see of she would be a candidate for this keyhole surgery.
There is a webinar here on the site by our Dr Giles called dealing with the emotions of diagnosis and I think that it may be of help to you. It can be found here –
http://www.cholangiocarcinoma.org/media.htm
And no apologies are needed for the length of any posts at all. You go ahead and post as much or as long posts as you want to! Like Lainy, I too can be long winded as well! Stay strong.
My best wishes to you,
Gavin
OK, First of all I agree with how you feel. I’m going to be blunt, I can’t sugar coat. I am not in the Medical field by any means, I try to use common sense and logic. How would you feel if your roles were reversed and you felt oh, this is going to be a breeze and it’s all not so bad only to find out you have been lied to albeit with good intentions, and that you have one of the worst Monsters in the world and the only cure is actually surgery. I feel that every patient has a right to know and should be told the truth so that they can help make their own decisions and plans for this journey that no one wants to take. We try to be realistically optimistic here. They are NOT nipping it in the bud as the only cure is surgery. That is why she should be in on the planning. I tend to go along with the Consultant. I am thinking I would have a talk with your Dad before Monday. Tell him about your discussion, that it was out of love and concern as you are afraid the best decisions are NOT being made. please listen to your gut, it won’t steer you wrong. IF you can get Dad on your side, it could be done Monday with the Doc as I am sure there will be many questions for him. It also sounds like all this is being done without an ONC? Most GP’s don’t have a clue what this CC is all about. People don’t go down because of learning the truth. Oh, it will hit hard along with shock and disbelief but trust me that once a treatment of any kind is started the boxing gloves come out and the fight begins. Mom may be stronger than you think. How close do you live to your parents? I would not change things just yet until other plans are made down the road and you feel you just need to move. Yes, most ONCs tell it like it is. I am sorry for the long post back at you but everyone knows here that I can be long winded! btw THERE IS ALWAYS hope AND miracles right here. Please let us know what happens!
Also, I made this call to the consultant today independent of mum and dad knowing, I feel as though I have been given the hard truth which Is what I wanted, whereas mum and dad went to the gp yesterday where our GP only gave basic details, so mum and dad left the surgery thinking that the bile duct stricture may not be cancer and they are offering chemo as a way to blast out the tumour and that if mum has a bit of cchemo they are in effect nipping it in the bud and getting it taken care of, whereas my understanding is more that chemo is going to be used as a palliative option.
I know I may be looking at the worst case and if after time this stricture really is benign-then that will be fantastic news but for now I have to put some trust in the consultant and follow a line of action
Prior to this, my dad and I went to see the GP and dad is very worried about breaking the bad news to mum so he was asking the GP to take the edge off things and only be direct in her answers if mum pushed for the answers, maybe this is what the GP has done and hence mum and dads perception of the situation now.
I feel that the GP has sugar coated the situation a bit too far, or maybe my parents are in denial or trying to hide the truth from me ( as I am young, live far away) maybe as a result of the GP honouring my dads earlier request to take the edge off for the truth,
I don’t feel at this stage, it is for me to say to them ive been having discussions with the consultant and know the harder side, but what worries me is that we have the oncology appointment on monday and I worry that the oncologist will either be going along with the GPS approach of fluffing it up a bit or be very blunt and come as such a shock to them both.
But I am worried that given the knowledge of this disease, some people can go downhill quickly whilst others it may not happen so quickly, this is what worries me that I want to put plans in place to make sure my mum and dad are supportd and maybe even try and find work closer to home, but feel that if I start to make these plans, its going to cause alarm and suspicion,
I am finding this bit hard to come to terms with about how to approach and act around my parents over the diagnosis.
I have got the contact details of the oncologist and may ring him in advance and express my concerns, I don’t know how oncologists work, are they very hard hitting and give the facts or would they work with
I am a firm believer in having hope to guide you through and despite all this horrible information that’s been handed over recently, there is still a part within me that says mum could be fine, mum could do really well and exceed expectation and that is very comforting but at the same time I think my parents shouldn’t be treated like children by the medics and mum needs to be given the facts before jumping headfirst into chemo without weighing up the pros/cons etc and also to enable me to help get the support to my parents and make any changes I need to do so.
I am so sorry for the long postings, I find it comforting to write my thoughts and updates down on here especially as I am not near my family at the moment.
Hello again,
thank you again for your quick replies and support, thought I would provide an update
I managed to get a callback from the consultant who had been dealing with mum, he was a very calm, very humane and very clear man. he was very patient with me and allowed me to witter on and ask the questions I wanted and gave answers and I feel that there was sincerity and a good base of knowledge behind his results and his answers
one of the first questions I asked him was to clarify the diagnosis, he explained that the two teams together had said that due to the length, height, shape of the stricture, the way it looked on CT scan and through the camera on the endoscopy, abnormal blood tumour markers all typical of cholangiocarinoma.
I queried him further and said that I had read a journal article stating that malignant strictures are often more than 10mm long whereas benign strictures are often shorter, he stated that mums stricture was 23 mm long and again other measuresments also indicated that mums stricture was over the documented thresholds for benign indications.
I then asked would it be in mums interest to get a tissue biopsy done and to confirm the cholangiocarcinoma, he said that it would take up to 6-7 weeks to get the test done, analyse results and confirm an answer, he said that he does not feel this would benefit mums overall treatment as the goal of treatment will remain the same-as the two teams feel with a certain level of confidence cholangiocarcinoma is present
I did forget to ask whether the biopsy would be good to show if the cells are fast or slow growing, but can ask about that later on I guess, he did say that the ct scan shows no obvious sign of spread but he has said that there might be microscopic spread and that the stricture is 23mm which he said is quite long and also that he feels there is pancreatic involvement.
I then asked him about surgery, he felt that the whipple surgery would be out of the question due to mums pre-existing health, I don’t know if there is such thing as keyhole whipple surgery? I don’t know whether that would be as invasive and demanding on the body as traditional surgery. I now understand that they cant just remove the bile duct as he said the location of it means that part of the pancreas will have to come out aswell as the intestine hence the need for a whipple procedure.
I went on to ask about chemotherapy, he said that with this type of cancer, only certain chemo only have shown to have some effect slowing growth/spread but not eliminating it it and it is so difficult to really tell whether chemo will have a good effect. he said that the oncologist wil need to go through with mum whether he feels that mum is strong enough physically to undergo chemo.
I feel that I understand what he is saying, basically that the cholangiocarcinoma will not be removed, therefore it is only a matter of time before it spreads, so therefore the decision needs to be made as to when to use the chemo,
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