Topic: awaiting a diagnosis from the uk

hello everyone

I am waiting for my mum to get a diagnosis and looking for reassurance and support, its been a bit of hellish time recently, I also wanted to find out about other peoples experiences of waiting for final diagnosis

bit of background history

mums been unwell for a while, very tired, very sleepy, bloated stomach, unreliable bowel movements, frequent UTIs, long history of cellulitis in her legs, has a longstanding history of asthma, copd, spondylitis so has had her spine fused several times in several places

mum started going a bit yellow approx. 3 weeks ago, so dad took her to the gp who booked her in for an urgent appointment at the hospital, however mum took really ill just before the last bank holiday weekend this may- she became very unresponsive, very fast heart rate and temperature, rushed into hospital, they were treating her for an infection of the bile duct due to a blockage/obstruction

the consultant said that they had ruled out gallstones and were looking at something more suspicious, this particular consultant also deals in general medicine and had already seen mum in the new year where they thought she had lung cancer due to xray showing enlarged glands and broke the news to her that she had it but then 3 weeks later after all the tests had come back and after dad insisting they tested more thoruoghly, she got the all clear and they decided it was a deep infection


,mum had her blood tests, ultrasound, ct scan, the same consultant who saw mum over the lung cancer scare has said there is something suspicisious showing up on the ct scans but wouldn't go into too much detail about where or what but said they are looking on the lines of cancer. mum had the ERCP two days later where brushings were taken and I think a biopsy was taken of some sort and a stent was put in, the dr confirmed there was a stricture present but wouldnst say anymore

the stent had worked its magic and mums jaundice started going down and mum felt a lot better as they had also addressed the infection with antibiotics. so mum was sent home about 1 week later

we were advised all the results would take over 1 week if not 2 weeks to come back as they have to analyse it all together, I managed to speak to the gp to see if any results had come back in, she said the brushings results came back in and said nothing alarming was found on them but said that she wasn't sure that all the results from that test were in and said she was wanting to chase up whether a biopsy was also taken, that all she told me at that stage,

at that point, I was feeling very hopeful that it wasn't cancer as the brushings would have shown something but then I got a phonecall from the gp to say that the local mdt have said that mums case is very complex and reffered it onto a specialist mdt in another area, I looked this team up and they specialise in bile duct, liver and pancreatic cancers mainly, so now I am thinking there is something there hence the referral to this team. the gp said she cannot go into anymore detail until she gets the full report on Monday /Tuesday, so the journey to diagnosis is still not over.

Re: awaiting a diagnosis from the uk

Dear Moonpie, Welcome to our remarkable family and I sincerely hope you will not be needing us, but in the meantime......the waiting for results can be unbearable. Sometimes CC can be very difficult to diagnose and I am wondering where your Mum is going for treatment. Honestly, I would start searching to have a backup plan like a different Hospital. You want to make sure they are adept at dealing with CC. We strongly advise 2nd and 3rd opinions. May I ask your Mum's age, she sure has been through a lot. I am glad she got the stent and is feeling better. Being involved with CC takes a whole lot of patience, like waiting to hear a Diagnosis. This is a tough one to be hit with but I promise you that once a plan is in place (if it is CC) your fright will turn to fight. You might want to do some reading up on posts here as knowledge is the best tool we have for fighting CC. Wishing you the best and please keep us in your loop.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: awaiting a diagnosis from the uk

Hi Moonpie,

Welcome to the site. Sorry that you had to find us all here and I am very sorry to hear what your mum has gone through, but I am glad that you have joined us as you have come to the right place for support and help and I know that you will get a load of each from all of us here. I too am in the UK, in Dundee and my dad was diagnosed and treated here at Ninewells. And my mum also has COPD so I know a bit about that as well unfortunately.

Where about in the UK are you and where did your mum have the testing done? Also, you say that the gp said to you that your mums case has been passed on to a specialist team, did the gp say where that is? The more information that we have the better that we will be able to help. I know that you won't hear the full diagnosis for a few days yet, but please, when you do hear tell us as much as you can and we will do our best to help.

My dad also had a stent inserted as part of his treatment to deal with the jaundice and like your mum's, it worked very well. He had a metal stent inserted, do you know if your mums was metal or plastic?

Your mum sure has been through a lot medical wise hasn't she. I know that this is such a stressful time for you all waiting for test results etc and we have all gone through that so can so relate to what you are feeling right now. But please try and stay strong and know that we are here for you. Keep coming back here and remember to let us know more when you know more as well. We so know what you are going through and we care.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: awaiting a diagnosis from the uk

I forgot to ask as well, can you tell us a bit more about how the copd affects your mum. I assume she is on inhalers etc and how long ago was she diagnosed with copd?

Thanks,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: awaiting a diagnosis from the uk

thank you lainy and gavin for your swift replies. I have had a bit of a look through this website and think it is a fantastic and supportive tool and have read that many people have been on very difficult journeys and my heart goes out to you all and hope that with the support of family, friends and this website, people have the strength to get through it.

mum was dealt with by our local hospital, however this hospital have a very poor local reputation for a number of key clinical and administrative tasks, luckily my mums ERCP was done at another hospital within the trust but has a much better reputation, the mdt was done between the local hospital and a dr where the ERCP was done but they thankfully accepted that they cannot manage the case so the case was sent over to Blackburn Royal- hepato-pancreatic biliary team for their discussion. I have done some reading about the team and they are a specialist team for bile duct,liver and pancreas issues and seem to have a good reputation.

gavin, my mum had a plastic stent put in, I have heard that the plastic ones need to be replaced fairly often, Im not sure whether the plastic one will stay in or whether they will do something else pending diagnosis. my mum has had asthma most of her life, she is now 62 . the copd was something diagnoised about 3-4 years ago, she is on inhalers, often on steroids, antibiotics and nebuisers at home, it got so bad that we have home oxygen on standby.

Re: awaiting a diagnosis from the uk

Dear Moonpie, my husband had plastic stents for about 2 years. They do need to be changed about every 6 weeks to 3 months. Please make sure when and if they are changed that your Mum is put into that twilight sleep. Lately we had a couple of places in the UK that did not put a patient or 2 to sleep. Absolutely insist. The procedure only takes about 1/2 hour if all runs smoothly. The patient is then kept until they are wide awake and then sent home. The specialist Team is  so important and I commend the one Hospital who admitted that CC is out of their league. We do have quite a few members in the UK and I am sure you will be hearing from them. You are quite right, we have the most courageous, loving and kind people as Members from all over the world. It takes a ton of strength and patience but honestly once a diagnosis is made and a treatment plan put in to place your fright will turn to fight.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: awaiting a diagnosis from the uk

Hi Moonpie1,

Welcome to the board.  It must be a very difficult and stressful time for you and your family.  This board is a phenomenal place and there is always support and advice available.

I too am in the UK - North of the border in Glasgow and came here when my sister was diagnosed last year. This and http://www.ammf.org.uk/ were invaluable in getting armed with reliable and credible information. 

Initially my sister was ill with an infection of the bile duct really improved once that was treated and a stent was inserted.  It sounds like if needed, your Mum will be with a specialist team rather than your local hospital - essential that an experienced team take the lead on this.  Please let us know how things progress this week if you can.

Clare

In the stars now . . . .

Re: awaiting a diagnosis from the uk

again, thanks for replying to the post so quickly, 

I don't think my mum was put in a twilight sleep as she came out quite anxious of the procedure, she hasn't mentally prepared herself or accepted that she may need to have another ERCP let alone more follow up work, my dad and I have been telling her white lies until Thursday evening when I sat down with mum and had a more open and truthful chat, whilst I don't want her to get worked up and use up valuable energy, I don't want it all to come as a big shock either, mum has come to terms that whatever the outcome is, there will be follow up work needed and she has a more positive look on things.

thanks clarem, I will take a look at that page, in the job that I do, I work closely with a hospital and can speak to a range of people at that hospital to explain the more technical things, I feel more reassured that a specialist team are looking into things as I would be worried sick if the decision lay only with our local hospital.

I am back at work tomorrow, I have had two weeks off to support my dad as we are a small family and it has really been myself and dad supporting mum through this time, luckily work have been brilliant and no pressure but I feel I need to get back as more time off in the future may be needed.

The gp said that she wil ring either mon/tues a soon as she gets the report from the specialist mdt, I believe they had a secretary taking minutes down so its really down to the efficiency of admin now,

Re: awaiting a diagnosis from the uk

hello all,

I have had the call we have all been dreading,  today, the gp told me that my mum has been diagnosed with cholangioacarinoma in the bile duct. they have said that due to mum having COPD and other existing health conditions they will not consider her for the whipples procedure but they can offer chemotherapy.

I am in shock but at the same time knew this was coming,the gp did say that all 3 teams including the specialist team in Blackburn agreed that it was a cholangiocarcinoma due to the length of the stricture and other key featurs and due to her tumour markers, howevever the brushings revealed inconclusive findings, The gp said that all 3 teams feel that it is almost certainly bile duct cancer due and feel that further testing would only confirm this.

I have a lot of questions brimming round my head, is it right that they can make this diagnosis without the brushings? if they do more tests and confirm that it definitely is, it wont change their decision to operate as both teams said the surgery would put mum at an unacceptable risk,, is there any less invasive surgery such as a bile duct resection?,  they didn't even tell me whether the cancer had spread, shouldn't they be doing further testing to establish this?am I right in thinking that once the ble duct cancer is in the bile duct causing strictures, then it is already quite advanced? the gp said that chemo can be offered but said that it may not change things greatly, if mum was only offered chemo alone, would this be an effective treatment alone or is it really only a palliative keep the symptoms at bay option?

I feel as though they have already given up on my mum, but it could just be me at the moment, maybe because we have just been given bits of info

Im sorry for all these questions, I am over 7 hours away from my family and want to try and begin to get my thoughts in order as we have a meeting with an oncologist next week and want to be prepared to ask the right questions

Re: awaiting a diagnosis from the uk

Dear Moonpie, I am so sorry to hear this news. I can only go by my own experience with my husband. He had a Whipple with very acceptable clear margins. 4 different ONCS/Radiologists said NO chemo as it will really not help him. Surgery was the only road to go but because of where the Cancer was located, chemo would not work even after the Whipple. Now, some will go ahead with the chemo after, but I do not believe we have seen that it makes a difference. Yes, it would have been Palliative. We looked back with no regrets even though the CC returned 3 years later. He then had Cyber Knife and that bought him another 2 years. We felt we got 5 1/2 years out of it all but a lot depends on the patients physical condition. Teddy had NEVER been sick with anything. In the end he was offered Palliative chemo once again and he asked the ONC how much time it would buy him and when he heard 5 months he chose quality over quantity, he called that time our Honeymoon! Teddy was 78 but enjoyed everyday, even if they were not the best. So, bottom line to me is, IF they offer Palliative care, what will that do for Mum?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: awaiting a diagnosis from the uk

moonpie....I too am sorry to hear of the diagnoses.  In re: to the brushings, it is not unusual rather to receive inconclusive results.  You must know that brushings are minute in itself and the likelyhood for the physician to retrieve a good sample is slim. Often times a biopsy is performed to confirm the suspicion of this cancer.
Whipple surgeries are quite invasive and difficult to perform.  I would consider another opinion from a surgeon "very" familiar with this disease.  Here are a few links to some of the postings:
http://www.cholangiocarcinoma.org/punbb … 26&p=3
http://www.cholangiocarcinoma.org/punbb … hp?id=4303
Also, Helen, AMMF, provides a listings of physicians and fantastic information for our UK members:
http://www.ammf.org.uk/
Please, keep us posted, moonpie.  We care.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: awaiting a diagnosis from the uk

Moonpie,

I am sorry to hear this news about your mums diagnosis. I know you say that you were sure this was coming but I know that it will still come as a big shock getting this confirmed. I was afraid that your mums COPD would certainly be a huge factor in any doctors or surgical teams thinking with regards to a highly invasive procedure such as the whipples to deal with CC. I see how much my mum struggles with pretty much everything due to her COPD and I know that she wouldn't want to go through such a procedure, it would be far too risky.

A second opinion is always an option should your mum wish to seek one and under the NHS your mums GP I think can refer her to a centre or doctor etc of her choice. The link about AMMF that Marion and Clare gave you will be invaluable should you wish to look further at this and here is a link to major treatment centre's in the UK.

http://www.ammf.org.uk/cholangiocarcino … t-centres/

Did the GP mention any other treatments or just chemo? Chemo is an option but the decision to do or not is a personal one and one that your mum will have to think about. You will no doubt learn much more about everything when you all sit down with the onc and do not be afraid to ask questions of him/her. It will certainly help you all to prepare a list of questions to ask at that meeting as it is very very easy to forget things that you want to ask but forget to do so.

I had a look at the treatments offered by the Blackburn team and they do offer quite a lot. I would say that from what I read and saw that they would be quite experienced in dealing with and diagnosing patients with CC. How do think your mum would feel about seeking a second opinion?

I know that your head will be spinning right now with everything that is going on and from what you have heard today. But please remember that we are all here for you and will help you as much as we can.  Keep coming back and please keep us informed about everything.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: awaiting a diagnosis from the uk

Dear Moonpie1,

I am so sorry that you have received this news.  Nothing can prepare you for it.  I just echo really what the others have said. 

Write everything down for your meeting with the Oncologist so that you can work through each question.  I'm sure the meeting will answer many of your questions but no matter how trivial you think it is, ask it.  It is important that you understand not only why things are being done but also why certain things cannot be done for your mum. 

You are correct in saying that by the time this cancer presents it is usually quite advanced.  Surgery depends on many factors but generally speaking, a resection is advanced surgery, without having pre-existing illnesses such as COPD.  I haven't been on the forum that long but there are members that have not been able to have a resection, had chemo and then been to have a resection but as you have mentioned, it does sound like your mums existing health conditions are compounding everything. 

I understand the helplessness you feel and your head must just be reeling.  My sister had her surgery abandoned as her cancer was far more advanced than first thought and chemo was the only option available to her.  I was also many miles away from my sister - it takes 6-7 hours to drive to where my family and it just makes a very stressful time even more difficult when you can't immediately be with them.

Please look after yourself and use the forum for all the support and advice you want.

Clare

In the stars now . . . .

Re: awaiting a diagnosis from the uk

thank you so much everyone, your kind words have touched me and its a great comfort especially when I am not with my family at the moment, I have had friends on the phone so that has been helpful to talk it through with them.

I have decided to give my mum and dad some private time together and wil make plans to visit at the end of the week, work have been great and said there is no pressure to rush back, I am going to stay next week so that I can meet with the oncologist.

Im not sure my mum will want to go through further testing as she has been through so much recently and the gp had basically advised that the second opinion will mostl likely yield what we know already as the Blackburn team have agreed with two teams already on their thoughts re diagnosis.Whilst she is strong, I don't know whether her energy will be best spent undergoing treatment and follow up work if she feels that's right for her.

what I am concerned about is that they cannot grade/stage it and so im not sure whether they are ruling out lots of other treatments based on that,

I am guessing that the whipples procedure that was talked about but has been refused by the team due to her ill health suggests that they know that the disease has spread beyond the bile duct or else they wouldn't mention such procedure?

I have heard about a bile duct resection but am I right in thinking that this is only for cancers within the duct and surely the team would have thought of that and surely that procedure is less invasive and risky than the whipples procedure?

I think the way I am getting through this early stage is to gather lots of info and use it positivey to guide my meeting next week so I can be absolutely sure they are not giving up hope on mum and are giving her the best treatment plan they ccan given the circumstances we face.

thank you again everyone

Re: awaiting a diagnosis from the uk

The bile duct resection I think you are referring to is similar to the whipple.  My sisters tumour (called a klatskin tumour) originated in the bile duct.  Her resection was to remove 75% of her liver (as the tumour had grown up and into her liver), gall bladder, bile duct and use a bit of her intestine to attach to the liver a create New duct for bile to flow to her intestine. The tumour had also affected a major blood vessel which was to be rebuilt.  Had her tumour been lower/nearer/affecting the pancreas then the head of pancreas would have been removed which is called a whipple operation.  The liver, gallbladder, bile duct and pancreas are all connected so to speak.  I'm sure the team will have considered surgery and the extent and type of potential surgery would depend on where the tumour is and what it is affecting. 

Like you, I wanted to be armed with as much information as possible.  I struggled to find credible info though until I stumbled upon here and ammf several weeks after her diagnosis.  Macmillan explain whipples and resection really well -
http://www.macmillan.org.uk/Cancerinfor … ancer.aspx

Sorry for typing errors tonight - on the ipad.

Clare

In the stars now . . . .

Re: awaiting a diagnosis from the uk

Moonpie,

You are so doing the right thing here in seeking to learn as much information as you can about all of this. Knowledge is power and the better informed you are the better equipped you will be to help your mum when it comes to decision making about everything. Learn as much as you can, don't be afraid to ask questions and as you know, we will help as best we can. Of course we don't know everything but between us all here we have seen and shared so much over the years.

I know that it must be even tougher for you right now not being there with your parents and I am glad to hear that your work are doing their best to help with time off etc. I think it is a good idea for you right now to give your parents some time and space as you are doing to help them deal with everything that is happening. I know from my experiences that getting our heads round this took a bit of time.

Have you heard of Macmillan Nurses? They provide excellent help to those with cancer and I think that they would be of great help to your parents. My dad had a Macmillan nurse and she was a godsend to us. She would come visit dad at home and was a great source of help and support for us all. They are not hospice nurses or anything like that, but they do provide so much support and help in so many ways. Your mum would be entitled to the services of a Mac nurse and should she want to arrange this then her GP or hospital team would refer her to them if she wanted that. Something to think about if not now then at some point in the future. Here is a link for you if you are interested -

http://www.macmillan.org.uk/HowWeCanHel … urses.aspx

Stay strong,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: awaiting a diagnosis from the uk

Hi again,

had a chat with my mum today over the phone and she is feeling very positive and very strong, she has decided to give whatever it takes to give her the best chance at fighting/keeping it at bay for as long as possible and wants to be positive along the way, mum knows surgery isn't an option, this is a weight off my shoulders that mum is starting off this journey with a good fighting spirit but at the same time being realistic,im sure we have a long way to go and there are going to be big ups and equally big downs , but with her family and friends she wont be alone in this.

had some good news as well, we have our first oncologist appointment on Monday, I am really pleased how quick this has been arranged, our gp has said that this particular oncologist-dr david fyfe has a very good reputation locally and is very thorough and very honest. at this stage, I think we are goig to see how the first meeting goes with the oncologist before deciding on second opinions as mums thoughts at the moment are just get stuck into treating it, we are behind her 100 percent, il be making sure that the oncologist answers the questions as well as he can and will tell mum if I feel that she may benefit from a second opinion,

I am off work now and will spend some time tomorrow writing down my questions for the oncologist and will travel back on Thursday.

thank you everyone for posting the links- it certainly is a comfort to have knowledge of help that's available.