How many tests do you have to have?

My husband was diagnoised with gullet cancer 19/02 after having a Endoscopy and a biopsy was taken, he then went for a PET scan then another Endoscopy on his stomach (on the paperwork it said no biopsies had been taken). The PET scan showed up abnormalities in the Lympth nodes under armpits. They have now booked my husband an appointment for his bronchoscopy and EBUS to test lungs for Wed. Can anyone give me info on these procedures as I am extremely worried? Any info would be welcome, thank you

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  • Hello - it's scary isn't it - but fir this particular cancer these tests are all the norm for staging purposes without which they won't be able to make the tight treatment plan. Waiting is torture I know but it is really important - they will also do tests to check for fitness for surgery. - should that be the way they go. Keep asking questions as you will have many - the lovely people on this site will be able to help . All the best

    Lyn

  • Thank you so much for taking the time to reply

  • Hi Merlin, the tests will go on and on, and even when they start treatment there will still be more tests as they go along. The only good thing is things move quickly when cancer is involved, you don't wait months for an appointment. Has he had a barium swallow yet? I'm trying to remember which tests I had, but it's all a blur, I just did what I was told to do.

    It's a long, long road, so just get through the days one at a time.

    I do hope all goes as well as possible for your husband. It must be very difficult when it's happening to someone you love.

  • Thank you, don't think he's had a barium swallow yet, as you say it's a bit of a blur, still in a state of shock. I'm trying to keep him eating as he's lost a bit of weight which of course I worry about as I know you need to be fit for treatment. I'm new to the site so wanted to get as much info as I can, it's the not knowing and the waiting to find out exactly what we will be dealing with. It's good to get as much info as possible and talking to people who know what it's all about makes it easier, so glad I found this site.

  • Hello Merlin,

    As others have said it’s difficult dealing with unknown territory, very little makes common sense and it’s hard not to worry. We’re thinking of you during this time.

    The procedures your husband is about to undergo are fairly routine now.

    Bronchoscopy involves the inspection of the airways and lungs with a minute TV camera on the end of a tube with facilities to take biopsies for diagnosis purposes, a very common procedure.

    EBUS Means Endobronchial Ultrasound another form of lung inspection via a probe where an ultrasound scan allows for a deeper picture to be seen within the lung and samples can be taken from that deeper area. EBUS is very up to date so your husband is getting the best practice

    Neither procedure is difficult to tolerate as Sedation or Anaesthetic is used as necessary and I don’t believe It’s risky at all.

    I hope this helps put your mind a little more at rest

  • Thank you so much for your support and explaining the procedures my husband will have to undertake, it makes it a little easier knowing what to expect.

  • Hi, as I'm new to this site unfortunately I can't answer any questions but I'm sure others will be able to give input to your question. Good luck

  • Hi Merlin. I can agree with one of the comments above that fitness is very important regardless of any type of treatment but especially if any surgery is required. Sitting around and worrying is not the way to go. Try & exercise as much as possible and eating supports this to create energy.

    Good luck and remember that treatments now are so advanced.

  • Hi, thank you for taking the time to reply. My husband was relatively fit before but has lost a bit of weight which I am trying desperately to get him to but some back on. He is not eating like he used to due to certain foods cause pain when swallowing, so it's mainly homemade soups liquidised, scrambled egg, ice cream, fruit and even spaghetti. He tires easily but does manage to get out with our dog for a walk around the block some days. I wonder if I should be giving him supplements to keep up him strength, has anyone any views on this?

  • re supplements. A good idea. One of the most palatable is slim fast made up with full cream milk and a dash of cream. Twice a day this will add 600 calories. The OPA booklet has a lot of ideas and your GP can prescribe but I personally found the above to be very good and highly portable if you are out too. Good luck.

    Charlie

  • Hi, Thank you for this, just downloaded the booklet, very very useful. I've heard of slim fast so will get some on Monday as 600 calories sounds great.

  • Just a though, start with just full cream milk and add just a dash of cream after a few days. Be cautious with the cream, it's very nutritious but high GI so a light hand:-).

    Charlie

  • Thank you Charlie

  • Hi

    I have gone through all these tests and ended up having what I had dreaded all along , a major operation to remove the oesophagus.It was about June last year when the biopsies confirmed the condition and it seemed a long time until the operation was scheduled for January this year. During the early period, the condition didn't allow me to eat any solid food without it getting 'stuck' and having to bring it up. I found certain foods that did go down without any logical reason, fish fingers I recall was one of them I tended to start all meals with a tea spoon of honey (it seemed to help). my wife prepared home made soups and fruit drinks and these helped a lot.

    Once the 'chemo' started things improved (for me) and at the end of the 6 week course I could swallow solid food again. Then it was a wait for the 'op' which was (in my case) uncomplicated and not painful. Yes I was apprehensive, scared if the truth be told because of my age (76) but I needn't have been. I took the opportunity of exercising every day before the procedure (at least two mile walk a day) and now I am feeling good. I may or may not be out of the woods I've just got to wait and see and I know that giving advice is difficult because everyone is different and the condition may not be the same but I hope this helps a little . Good luck.

  • Hi, thank you so much for taking the time to contact me and sharing. My husband is 69 and like you very apprehensive and scared about the type of treatment they will decide on. I am so glad that your procedure was not as bad as you thought it would be, hopefully it will also go as well for my husband if an op is required. I am so glad that you are now feeling good and wish you all the best for the future.

  • The hospitals do have quite a lot of sophisticated scanning available to them these days. The more they do, the more the surgeons know in advance what they are likely to find during any surgery they undertake, and will also make a much better assessment of a patient's fitness and ability to undergo the surgery and the recovery period that comes afterwards. It is quite important that they deal with lymph nodes because they are the routes through which the cancer would spread to other parts of the body.

    All this will end up with their assessment of the tumour itself and how far it might have gone into the lining of the oesophagus; the number of nodes that seem to be affected; and whether there has been any metatstatic spread of the cancer to other parts of the body. Having more tests does not imply that there are more serious problems; it is just that some kinds of tests provide different kinds of information than others.

    Waiting for all the results is a nerve-wracking time for anybody, but it is important that they work out the best treatment for each patient.

    It is a testing and traumatic time all round. It would not be natural if you weren't both scared and apprehensive about it all. If you can face it together and do some talking to each other it usually makes things quite a bit less difficult.

  • Hi, thank you so much for taking the time to contact me. I feel that the more information I receive from people the better it makes me feel. My husband goes through good days (very positive) and bad days (worrying, can't eat, discomfort). We do talk a lot mainly me telling him to stay positive and putting it in his mind to fight this disease. I was a teenager when my father developed throat cancer at 43 - treatment for him in those days was aggressive radiation, I believe he had the highest dosage ever about 24 if my memory serves me right. He survived I think because of his faith, he never gave up and learnt to speak from his stomach after they removed his voice box. He had another 10 years before the cancer returned and took him. We didn't really talk about it in those days but I now know what my mother must have gone through but I also know that if you fight it you can survive and that's what I keep telling my husband.

  • Hello Merlin

    I'm 21 years post-op so you have plenty to look forward to !

    It helped me and my wife a lot by trying to stay in command of events ,so we asked umpteen questions about everything --you are entitled to be a nuisance --"what's this/how's that /why /what does it do/" etc etc .

    We kept a diary ,made copious notes ,insisted on copies of hospital paperwork ,googled everything--the USA sites are much more detailed , informative and helpful .

    On a slightly negative note this being on top of things probably saved my life on two occasions when understandably tired staff were about to make a mistake in the middle of the night !

    You will both come through this and will get some reward from the discovery that you are better human beings and have a stronger relationship.

  • Hi Gutlesswonder, thank you so much for your advice. Been on quite a few USA sites and you are right they are much more informative than UK ones. Have so much info sometimes I think my brain will explode taking it all in but like you I want to know as much as I can. My husband, Butch, has had quite a few bad days which we think is caused by the Tramadol tablets - dizzyness, feeling sick, eyesight shot, feeling tired all day. He was on Co-codamol before but made him feel really bad so docs recently gave him Tramadol. He's stopped taking them this weekend and is making do with Paracetamol till he can get to docs on Monday.

    Last week he had tests for lungs, windpipe and trachea, wasn't as bad as he thought it would be and as he didn't remember any of it because of meds felt ok when it was finished. He has 1 more test to do on Wed at the breast clinic for lympth glands then hopefully we will get results and can start planning for the future.

    So glad you are doing well, it's so nice to hear from people who have been through this and come out fighting. Best of luck for another 21 years hey? Keep well and healthy.

  • Merlin you are probably right about Tramadol.It has a bad press !

    I took it for 6 months ,quite effective at damping down the pain but a constantly varying

    spectrum of side effects .Pretty sure I was addicted but got over that by taking it right up to the Op then immediately switched to Morphia when the epidural didn't take properly.Beware of taking that for more than 3 or 4 weeks.

    On pain---if Butch is anything like me and of course depending on what sort of Op is recommended he need not fear post -op pain -- it should be entirely manageable.

    I found that the area of greatest discomfort for the first 10 days was around the diaphragm

    ( with an Ivor Lewis type "pull-up")The reason I mention that is it is absolutely vital not to shy away from the "brutal" physiotherapist who will appear at his bedside on day 2 or 3-- doing the exercises is the only way to restore lung function.More patients depart ahead of schedule due to pneumonia than any other cause.

    Apologies for the reality check - but forewarned is for-armed--- PMA--Positive Mental Attitude .And never forget that the best medicine of all is a good laugh .

    We are rooting for you both.

  • Dear Gutlesswonder thank you for your response. Believe me if Butch needs physio I will be right there to make sure he oes what he's told ha ha. Since coming off the Tramaol his syptoms have disappeared and he's feeling a lot better in his self. He refused any other hard meds when he went to doctor's today and is going to use soluable paracetamol for the pain and see how he goes with that. You're right PMA is a definite and I'll get on-line to find some good jokes. Cheers.

  • Hi Merlin

    Maybe I should change my handle to "Dutch Uncle" ?

    But seriously ,have you plucked up the nerve to ask your hospital's/surgeon's track record

    in dealing with Butch's condition ?

    As with most things in life practice makes perfect. One procedure a month would be of concern whilst one per week implies that the team is as slick as it gets ! Of course the long-term outcome figures (including complications/corrective 2nd Ops )are equally relevant.

    If it was my turn all over again and they couldn't/wouldn't satisfy me with such info then I would consider asking to be referred elsewhere -- a major London teaching hospital as the No 1 preference.

  • Ha ha - to be honest because we haven't had any of the results of his other tests we have no idea who the surgeon will be yet. At the moment we have been having the tests at Blackpool Victoria and Preston Hospital then once all the results are in we have been told the doctors have a video link to discuss and decide what treatment is best - this will be done at Preston. We have spoken to a few people locally who have had cancer and were dealt with by Preston and their comments have been good. As soon as we know what we are dealing with I will certainly take your advice and find out as much as I can about the success rates at Preston. Again thank you for your advice it is much appreciated.

  • We deal with patients all around the country and can assure you that you will get very good treatment at Preston.

  • Thank you Alan that is good to know.

  • Hi Alan

    Do you have any statistics on this vital topic ?

    I believe that the catalyst for any given so-called centre of excellence

    is an individual surgeon electing to pursue that particular procedure--as the reputation spreads like-minded practitioners are attracted to join the firm.

    I have read good things about Leeds.

    My own Op was carried out at London's Royal Free in 1991--since I have never had a straight answer I have a sneeky suspicion that I may have been the first Ivor Lewis !

    Given that I am still alive that must say something.

    Does this deserve a topic in it's own right ?

  • There are some medical papers about the outcomes from centres according to how many operations they do, and the gist of them is that the more surgeons do, the better. Hence the move towards creating fewer centres of excellence, but grouping surgeons into teams of, ideally 4 - 6, so that they can maintain 24 hour coverage for emergency operations etc.

    This also helps with trials and research.

    It is complicated by the fact that as scanning gets better, the more likely it is that they find any metastatic spread, and therefore that tends to lead to fewer patients having surgery, because the operation will effectively have been too late to stop the spread. Or at least the decision on surgery to await the outcome of chemotherapy.

    But it is also complicated by resources and finance. Referring patients on to another Trust may not be so easy as it should be in some cases, but I have not really got any details on that.

    It is marvellous to realise that it is over 20 years since your surgery!

  • Hi Merlin - Gutlesswonder (great name!) is right you should absoloutely question your surgeon - once you know who he is. I work in a surgery and one of the GPs had cancer the year before and was so helpful to me - he told me the important questions to ask the surgeon were - what is your experience of this particular surgery and what have the results of those surgeries been. I did - I felt I had every right to do so - and the surgeon was not in the least phased by it. Keep your chin up - on the nutrition front - Maxijul a supplemental juice made into a jelly is an easy way of getting the calories in.

    Lyn

  • Hi Lynleahy, thank you for your advice. I'm like you I want to know everything and certainly won't feel awkward about asking a surgeon questions, as you say we have every right to. Butch has been coping fairly well with his eating, only experiencing some discomfort occassionally, one night a bit of fish got stuck but he managed to dislodge it was a bit worried about continuing but did and he managed to finish it without any more problems. The Complan was a no no as he said it was disgusting even the Choc milkshake. We decided to forgo all the strong pain relief as it seemed to cause more problems and made him feel horrible, yes it stopped the pain but the side effects just weren't worth it. He's managing quite well on strong paractamol. We went to breast clinic on Wed and after doc feeling under armpits was told that yes he would need to come back for an op to take a biopsy (next Tues) then would send off for analyisis. Then we should have all results of all tests and then know what treatment Butch will have - we were told it could be an op and radiation or radiation and chemo - I suppose depends on whether it has spread anywhere else. Must admit am very apprehensive about results, just hoping it hasn't spread anywhere else but I know that the odds are it has so will cross that bridge when we know for sure. Today has been a good day for Butch just hope there are more to come. Hope Nielsen is coping and we wish you both well with the results of his PET scan.

  • Hello Merlin

    You are about to arrive at the crunch stage , the importance of which cannot be over-emphasized

    I assume that Butch will be having a needle biopsy for the lymph nodes on Tuesday,also that biopsies were taken during endoscopy .

    These will be examined principally by microscope by a Pathologist.

    The comparison of samples and diagnosis resulting are dependent upon his eyesight , pattern recognition skills and degree of experience and expertise !

    It is some skill- I know this at first hand since ,arguably, my Father was numero uno in this country for several years.

    Unless the diagnosis is straight forward and unequivocal as to type and stage then you may want to consider a second opinion before the treatment plan is settled. This may cause a delay which may not be in his best interests.

    In my own case I developed a second carcinoma 17 years after the first.

    Naturally it was attributed to a secondary metastasis but rigorous pathology proved that not only was it a completely unrelated new primary but also that my original was mis-diagnosed.

    Caveat Emptor as the saying goes.

    No doubt someone will one day ask a question causing me to wax lyrical about the delights of having two thoracotomies. Spareribs for dinner -yum .

  • Hi all, an update - well we went on the Tuesday to be seen by a doctor who checked Butch's armpits to tell us yes he can feel lumps then were told to come back 1 week later for a pre-med check which we did. We were then given an appointment for an operation which is today. I believe the op is an insertion under both armpits to take biopsy - I assume this will tell us his staging, which i have been researching on internet (I need to prepare myself beforehand knowing exactly what stage he is at). It seems to have been a long process and we are hoping that we will now get the results quite soon, fingers crossed, on what his treatment will be. Butch has put on a bit of the weight he lost which makes me feel easier in myself, but has suffered extreme bouts of depression. Has had bad pain in his back under shoulder blade, paracetamol wasn't helping so had to go back to doctor and was prescribed codine which along with paracetamol has helped him manage the pain better. I am sat here waiting for the call to pick Butch up, glad that the tests are all now finally completed but extremely apprehensive of what follows next. I hope everyone had a good Easter

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