first appointment with the oncologist-left with some hope
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Hi Moonpie,
Sorry for the delay in my replying to you, things have been hectic here and still are. Personally, I think that the sooner your mum has been referred and seen by either Christies or Liverpool the better. She will be in excellent hands at either of these hospitals and the teams there will be able to answer all of yours and your mums questions. And of course, she will get the correct and accurate diagnosis and therefore a treatment plan will be advised which you will be able to trust. And trust me, you will all feel so much better once this happens and the plan starts as at that point your mum will be fighting back. I realise that this is a scary and at the same time a frustrating time for you all but it will get better and easier.
From what you have said, I would certainly say that the onc you saw does not specialise in gastro cancers and that is why your mum is being referred to somewhere who really know what they are doing. I do agree though that where ever your mum goes she probably will not be offered a whipples as it would be too risky due to her existing health conditions.
Some links that will provide more info on the testing and diagnosing questions you have –
http://www.ammf.org.uk/cholangiocarcinoma/diagnosis-2/
http://www.nhs.uk/Conditions/Cancer-of-the-bile-duct/Pages/Diagnosis.aspx
As to PDT, should this be offered to your mum at any point then please let me know and I will be more than happy to discuss anything at all about it further. There are a lot of tips that I will be happy to share with you if your mum wants to go with that treatment.
I know that your mind starts running and your anxiety levels rise as well, that is normal. But that’s what we are here for and we so know how you feel.
My best to you and your mum,
Gavin
Hi Moonpie,
It must seem like one step forward and two backwards. I think the sooner your Mum is seen at Liverpool or Christies the better. Has anyone given you and indication of time to hear from them? I would be all over this, keeping the pressure on as it is taking precious time going from team to team waiting to get a proper diagnosis, staging and initial plan of attack in place. Don’t let this third referral get lost in system.
It may well be that surgery as an option is still not possible but you need to be confident this decision is coming from the expert team. If it can’t be done, then my next question would be what can or is available to your mum to give her the quality/time/pace of life that she wants in the weeks/months/years ahead.
To quote Lainy – “Go with your gut”. I too am a great believer and it has never steered me wrong yet.
I can’t answer on the spyglass ercp or endoscopic ultrasound – to my knowledge it was a routine ERCP, routine liver ultrasounds, MRCP and CT’s my sister had. What I do know is someone here will.
Hang in there Moonpie – this is an incredibly hard time. I felt completely out of control at this stage but get the right team and plan in place for your mum and at least an element of this awful experience will start fit in to place.
The mdt at two hospitals both agreed thst because of mums asthma and copd and other existing health problems mum would not be a candidate for surgery. They said that she would not survive the surgery or would have major post operative complications.
Whilst i hope with all my heart that its at an eaely stage-i cant help thinking something is at amiss. I dont think he has the authority or expertise to say its carcinomainsitu when the ercp they did disnt look righr into the bile and pancreatic ducts. I have to say it worried me wgen they said the stricture was 23mm long and very dilated. I just hope that the next team really getto the bottom of it all.
Does anyone here have any experience of the further testing that mum wil be gping in for? The endoscopic ultrasound and the spyglass. Mum has a plastic stent in-will they need to remove that to get a good look at the duct and put another one in?
As you can tell-my mind starts to get more active and anxious at night time-i feel thst we r making progress and getting mum to the right place but all the info along the wat is just so confusing.
Oh my, I have never heard of such rhetoric from Doctors who should not be dealing with something they know nothing about. They should just admit it and let you move along! Did they say why they would not offer a Whipple?
The ONLY cure so far is surgery. Sounds like they know nothing about CC, and I certainly hope you hear really soon from the other Hospitals.Hi gavin,
Thanl you so much for taking the time to explain in more detail about pdt-i now understand that there is a lot more to it and those useful tips about the lights indoors and wearibg appropiate clothibg outside i just would never have thpught about. If mum does get offered that il make sure these things have been explained to her.
When we were with the oncologist who now i realise doesnt specialise in gastro cancers,made a comment about the staging of it. He said he felt that it was at an early stage and said its likely to be carcinoma insitu as tests showed no mass but did show a signigicant stricture of 23mm in the bile duct and was qyite dilated due to the height of the stricture-whilst this news sounds v promising and certainly what i want to hear-it has again confused me in that if it is at that early stage then surely she would stand a great chance of it being cured? However they have said that whipples surgery will not be offered. Also if it was at an early stage then surely mum wouldnt have had such a severe decline in health with her haubdice and symptoms leading up to it.
I am feeling that the sooner we start to deal with liverpoiol or christies and mum gas these further tests then the better. I just want accurate info and so does mum-her poor head keeps going over and over.
Hi Moonpie,
PDT for CC is not really new either and has been around for a few years now. Some trials for it have been done and at least 1 I think is underway in the US. Most of the trials seem to have come out of Europe where I understand that it was offered more that in the US I think. The data from these trials and the one in the UK has been mixed and personally, I feel that much more investigation, work, trials etc needs to be done on PDT with regards to CC.
Here is a link about my dads experiences with it –
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1940
As to how it works, they would inject a patient with a chemical as you say up to 48 hours before they do the treatment. The chemical, Photofrin spreads through the body’s cells and masses in the cancerous cells. Then they go in with the laser and when the laser hits these cells with the Photofrin in it it reacts with the laser and hopefully attacks the cancer. That is of course just a very basic run through of how it is supposed to work.
My dad handled it well but there are some very very important side effects one has to deal with, and I can not stress enough how important it is to know about the side effects. A person is extremely sensitive to direct light of various types and in my dads case this lasted for a few months. Direct light would include lights from bulbs and sunlight. Light will affect someones eyes and skin so my dad had to be covered up for a few months when he was outside after having PDT, hat, gloves, scarf and he had to get his glasses darkened by an optician to the strongest level before he had the treatment. As I said, I can’t stress enough the impact that light as a side effect can have with PDT.
But taking all of that into account, he handled it very well! It just took a bit of time to get used to everything before the effects of the Photofrin wore off. Plus in the hospital, he had to stay in his own room on the wards as his skin and eyes would not have been able to handle the lights on the ward. They had to switch the lights in the ward off an draw the curtains so that he could leave his room to get to the showers in the ward. He was in that room for over 3 weeks before he could leave.
Where would your mum prefer to go for treatment, Liverpool or Manchester if she was given the choice? Christies has a very good reputation and much experience in dealing with CC patients. I don’t think that it will take weeks and weeks for your mum to be refered and your GP should be able to help if it is taking too long. Keep in touch and let us know how everything goes.
My best wishes to you and your mum,
Gavin
hello everyone, thanks again to you all for your kind words of support and encouragement, you really are a great bunch of understanding and compassionate people and I am so thankful that this website exists. Soon I will feel able to offer other people advice and support in their journeys.
Gavin, thank you for clearing that up about the PDT, I haven’t really looked into it much, I just assumed it was new as I had never heard of it before, am I right in thinking that PDT is quite new in its use for bile duct cancers? How did your dad find the treatment, my basic understanding is that they inject some sort of chemical into the blood whereby the cancer cells are attracted to it to make them stick out more and then a laser light is passed in and it is the light that kills the cancerous cells? It sounds a lot easier on the body than traditional radiotherapy?
How long do we expect to wait for the other hospital-Liverpool to write to mum for an appointment, I really don’t want mum waiting weeks and weeks but understand that we are accessing another cancer network fund and all the administration that goes with, would it be reasonable to wait two weeks and then maybe make a phonecall to enquire on progress?
Hi Moonpie,
Thanks for letting us know how things went with the onc and I am happy to hear that you mum is being referred to either Liverpool or Christies, she will be in good hands at either of these hospitals. PDT is not a new treatment though, my dad had PDT as his treatment with a stent 5 years ago and I wrote a lot about that here on the site at the time. If you want to know my thoughts about it or anything PDT related just ask and I’ll help as best I can.
Please keep us updated on how things go and let us know what the treatments offered to your mum are when she gets to see the team at what ever hospital she goes to. I am happy as well to hear you sounding a bit better about everything and once your mum starts a treatment I know you will all feel even better still.
My best wishes to you and your mum,
Gavin
Oh Moonpie,
I don’t want to belittle the gravity of the situation by saying this is good news but this is a big step forward and has made me smile for you. Your concerns and questions have been taken seriously and a specialist team is the way forward for sure. You will have no shortage of knowledge here on the therapies you mentioned – just wait for the stampede of help!
Thanks lainy- i am pleased that this oncologist is supporting further testing to inform the best possible treatment plan for my mum. I know its still going to be a long journey with bumps in the road but hopefully with the right specialists on board -we will all be in good hands. My prayers have come true
WOOT! WOOT! Sounds good to me and like you said, I love, realistically optimistic! A good position to be in. Sometimes the more people are told and understand the less frightening the whole thing seems. Enjoy your visit and look forward to more good reports!
Hello all,
Went to the appointment with mum and dad and i must say i walked away from the meeting feeling that mum was listened to and that he believed in my mums case. Dad took it much better than i thought he would. I am so proud if my mum and dad and its great to be at hone with them for a couple of days. After speaking with the oncologist i feel that realistic hope has been given.
I asked him whether further testing shoukd be carried out before embarking on a treatment. As the diagnosis has been made in the absence of a biopsy. Inconclusive brushings were tsken. They based the diagnosis of cc on the length height and shape of the stricture and raised tumour markers. The oncologist agreed that he feels the results strongly show cc but he said that it would be in mums best interests to be referred to a specialist team r at the royal liverpool hospital where they have specialist ercp with spyglass and one with an ultraspund attachnent to detect small tumours and have a good look around and repeat ct scans.he said that at the moment he feels that the cancer -if it is that-may be in an earlt stage. He said that whilst mum cant have surgery due to her health he said that he would want mum to be referred to either liverpool or manchester-christies where mum could be offered internal radiotherapy and he mentioned a new treatment called photodynamic therapy. He was very realistic and said whilst it cant be cured he feels that mum shud be offered the chance to be treated under a specialist team abd be offered a combination of therapy.
This is the best ive felt since this journey started. I know we are not out of tge woods but it is uplifting to know that they feel mum should be given a good shot at getting as much info about the condition and being in the best place regionally to get treatment
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