Bad outlook

Hi Fortiemac

I’m fairly new on here but I have been reading a lot through the posts the past few months as my mam has just started treatment for squamous cell Oesophageal cancer. One thing that I did read was that the radiation and chemo continue to work after treatment has finished and that the scan a few months after could show further shrinkage. I’ll see if I can find the post for you. 

I wish you all the best. 

Hello Ruby,

Many thanks for your post.

What you say is interesting (and positive).  My understanding from my oncologisd is that the month delay after the completion of therapy until the final scan was to allow for the contiuation of effect for a while.   She didn't mention that there might still be some effect to come.   I think there may be  a certain amount of "expectation management" in what they   tell you.  For my part, I'm certainly happy to latch onto any cause of optimism in my own case.  Thank you.

I do wish your Mum the very best of luck.  Let's hope that the treatment does the trick for her.

I should mention, perhaps, that in fact my Chemo was stopped after two of the three prescribed sessions - something to do with my blood analysis, but I can't remember exactly what.  I was initially prescribed 3 chemo sessions and 25 radio, but only had the two chemo.  (The cynic in me might suspect that the chemo ws curtailed because treatmeent was rationed because of the damned plague.  I know it was for some new patients.  Your Mum has been lucky getting her treatment quickly, in that respect.)

Every patient is different, as we constantly remind ourselves here.  I was lucky with side-effects - my main problem was being so weak at the end of, and for a while after, the radio.  In that regard I'm over it now.   Just dealing with the mental stuff .....

Best wishes, and thanks again for the post.  You have given me a chink of hope  (to mix metaphors).

Hi Fortiemac

Thanks so much for the well wishes. It’s great that you didn’t have many side effects. My mam is 2 weeks into her treatment but has only had one chemo session so far as her peg tube was inserted wrong and got infected. She was due to have 5 chemo and 28 radiation. Due to the infection 2 of the chemo sessions didn’t go ahead so I was hoping that they would give her these at the end but that remains to be seen. I found that link which I hope might offer you some peace of mind for the time being. 

Best of luck xx 

https://community.macmillan.org.uk/cancer_types/gullet-oesophagus-cancer/f/gullet-oesophagus-cancer-forum/172392/recovery-from-chemo-radiotherapy-only-no-surgery

Hello again Ruby,

Many thanks for that reference.  Reading through those posts has been a bit of a tonic for me.  One wonders how different Oncologist might interpret, and tell their patients about, the same set of facts (blood test results, scan images...).  Some might put a much more positive/negative interpretation of preceisly the same objective situation!  We really are, as in all medicine, I suppose, at the mercy of the indivdidual clinician.  

As a cancer patient, with all the "baggage" that comes with the word "cancer" I have a lower "worry threshold".  I feel highly sensitised and think about the situation the whole time.  E.g. I am now supsicous that my third, cancelled, chemo session was missed due to treatment rationing as a result of the current plague and that if I'd had it then the treatment programme as a whole might have worked .... etc., etc?

Anway, thanks again for the reference and it puts a more positive slant on where I find myself.

Hi Fortiemac,

I know it has been a little while since your last post, but I was wondering whether you had asked for a second opinion? 

I hope someone will be able to offer you some further treatment/support with your diagnosis

Lowe'

Hello

I hope you don't mind me joining your conversation I only joined the community group yesterday. I was wrongly diagnosed with a globus/reflux in October last year and then my voice changed and went back to GP and ENT and then on March 13th diagnosed with Stage 4 Primary Oesophageal cancer, secondary in my lungs and possibly something in my iliac bone, the latter of which they don't mention anymore. I am 53. Shock was an understatement especially after globus diagnosis. They told me on diagnosis it was inoperable and that I would also be at the bottom of the ladder with treatment should covid take off. I found that somewhat insulting given the wrong diagnosis and my age and all this bad news in a week. So I sought private consultation with Rutherford as I wanted to pursue the immunotherapy route as a friend advocates it and I know it is used successfully in lung, neck and throat cancer and Oesophageal treatment might be on the horizon. My oncologist slammed it down immediately on the first triage said not sponsored or approved etc by nhs. However, Rutherford said it was an option privately but costs of fortune. So I went the chemo route pills and intravenous every three weeks, I wasn't especially ill but I had to have a stent put in after two months and had various signs that to me felt like the chemo worked initially but not after around the 3rd cycle.. Then miraculously a sort if trial came up for immunotherapy as I have been constantly pushing for it fuelled by the information and research I have done and the fact that I felt I was compartmentalised into a palliative route and am realistic about the situation, but I am youngish and not ready to go just yet! Anyway frustrated by hospital delays in paperwork etc and in my experience having to always be on it with docs, chase everything and things do go wrong, not least starting with my globus diagnosis to begin with. So I said no more chemo at the 5th cycle mainly to prompt them to get on with paperwork and got the results of a scan after another breathing episode whereby a scan showed quite remarkable growth in my lungs and less so in oesophagus.  I did one immunotherapy treatment but then went to hospital as (and I don't think it is anything to do with the immuno) my breathing was so impaired and it turned out that my tumour had grown into the stent and was giving me less than 50% capacity in my windpipe. I then had 10 sessions of radiotherapy (which was not an option to begin with and inoperable) and course of steroids and feel 100 times better and resumed immunotherapy on Tues. I guess what I am saying it I do have hope and do I feel the need that you have to push for everything and question stuff. I am also feel apprehensive about the immunotherapy as feels like my last option but I am fighting this thing with all the energy and positive thinking I can grab. So I guess I am saying whilst we are in the incurable/terminal cancer zone and cannot believe I managed to get on this immunotherapy but it was from my questioning and I think you have to with your treatment. It is our lives. Anyway, I would be interested to hear if anyone has any experience or heard about immunotherapy treatment and our type of cancer as I am somewhat of a guinea pig but have to do it as I think if it works, it will be quite a defining moment for treatment of oesophageal cancer. We do need all the help we can get as it a nasty one and I had never even heard of it! All the best with your treatments but hoping to hear back from someone as mainly I converse with friends and family who are so supportive but not dealing wth what we are dealing with. Many thanks 

Hello Lowe' and March23 (below), And first of all thanks for your posts.  (Like so many here I have been having trouble with this website and not getting notifications until recently.)

Having been somewhat "cast adrift", as it feels, by the NHS cancer services, I have gone through a variety of mental states and have been in the "resignation" phase just now.  I am (was) just  waiting until my first "3 month" appointment comes around with my oncologist.  I have, frankly, even been wondering about my diagnosis/prognosis, as I still have no symptoms of the disease.  I am temperamentally a rather phlegmatic bloke and perhaps I have been too passive and accepting.  March23's post shows what a "bit of backbone" can achieve and perhaps I should be making some enquiries about private treatment.   (I could fund it to the tune of some £ks.)'\;l.  I did mentions the possibility early on, but my onco. said ' that they wouldn't be able to do anything  (I was asking about a further PET scan at the time) because they didn't have the equipment.  (I later discovered that a private hospital in Milton Keynes was doinfg it (indeed they were doing the PET scans for the localNHS there, though it proved there had been doubts about the quality of their services!)).  Anyway, both your posts have made me think that just waiting for things to happen via the NHS is wasting time.  I know that the damned Plague was having major  effects on the treatment (i.e. non-treatment) of new cases, and I am beginning to wonder that treatment for existing patients isn't been effected, too.

How do I actually go about moving things on?   I had, for some while, been thinking about getting an appointment with my GP to delve into whether my interpretation of what I had been told by the Onco. is reasonable,  but I got put off by all the general news about difficulty getting appointments, and I am not happy now at with how the telephone consultations seem to go.  Perhaps I should pursue that?  Could a GP advise about private treatment, or would he just bounce me back to my Onco?  I feel OK about phoning my allocated nurse at the hospital - could I ask her?  Or could I ask for the Onco to call me for a chat about it?

In my random diddlin' around on this website (I mostly look in, (in addition to this group) the Atheists group and the Incurable group) I have come across several mentions of "immunotherapy".  I even took the trouble to try to discover what it was and how it is relevant to our illness, but I didn't make much progress in understanding.  I have also seen  many mentions of "trials", but I thought that was simply pot luck and not something one could enquire about?  (Indeed, early on, before I ever had any CT or RT, I was offered a place on a trial.  It was to discover any benefits of a 20% increase is RT doses.   In fact, after much dithering, I finally decided not to go on it - for fear I would be able to blame any bad results on being in the trial.   Anyway, as I understand it in any given trial there is only a 50% chance of getting the trialled treatment rather than getting no such treatment (i.e. being randomly put into the "control group"?).

I really don't know what to do.  Or even whether these musings are just folly and I should trust the good old NHS to get on with me?  Mind you, the events of how the NHS has dealt with us in the Plague (under political direction, of course), does make one pause for thought, to say the least!   I don't want to become a nuisance to my Onco, as when it comes to it,one is completely at their mercy?

Hello Lowe' and March23 (below), And first of all thanks for your posts.  (Like so many here I have been having trouble with this website and not getting notifications until recently.)

Having been somewhat "cast adrift", as it feels, by the NHS cancer services, I have gone through a variety of mental states and have been in the "resignation" phase just now.  I am (was) just  waiting until my first "3 month" appointment comes around with my oncologist.  I have, frankly, even been wondering about my diagnosis/prognosis, as I still have no symptoms of the disease.  I am temperamentally a rather phlegmatic bloke and perhaps I have been too passive and accepting.  March23's post shows what a "bit of backbone" can achieve and perhaps I should be making some enquiries about private treatment.   (I could fund it to the tune of some £ks.)'\;l.  I did mentions the possibility early on, but my onco. said ' that they wouldn't be able to do anything  (I was asking about a further PET scan at the time) because they didn't have the equipment.  (I later discovered that a private hospital in Milton Keynes was doinfg it (indeed they were doing the PET scans for the localNHS there, though it proved there had been doubts about the quality of their services!)).  Anyway, both your posts have made me think that just waiting for things to happen via the NHS is wasting time.  I know that the damned Plague was having major  effects on the treatment (i.e. non-treatment) of new cases, and I am beginning to wonder that treatment for existing patients isn't been effected, too.

How do I actually go about moving things on?   I had, for some while, been thinking about getting an appointment with my GP to delve into whether my interpretation of what I had been told by the Onco. is reasonable,  but I got put off by all the general news about difficulty getting appointments, and I am not happy now at with how the telephone consultations seem to go.  Perhaps I should pursue that?  Could a GP advise about private treatment, or would he just bounce me back to my Onco?  I feel OK about phoning my allocated nurse at the hospital - could I ask her?  Or could I ask for the Onco to call me for a chat about it?

In my random diddlin' around on this website (I mostly look in, (in addition to this group) the Atheists group and the Incurable group) I have come across several mentions of "immunotherapy".  I even took the trouble to try to discover what it was and how it is relevant to our illness, but I didn't make much progress in understanding.  I have also seen  many mentions of "trials", but I thought that was simply pot luck and not something one could enquire about?  (Indeed, early on, before I ever had any CT or RT, I was offered a place on a trial.  It was to discover any benefits of a 20% increase is RT doses.   In fact, after much dithering, I finally decided not to go on it - for fear I would be able to blame any bad results on being in the trial.   Anyway, as I understand it in any given trial there is only a 50% chance of getting the trialled treatment rather than getting no such treatment (i.e. being randomly put into the "control group"?).

I really don't know what to do.  Or even whether these musings are just folly and I should trust the good old NHS to get on with me?  Mind you, the events of how the NHS has dealt with us in the Plague (under political direction, of course), does make one pause for thought, to say the least!   I don't want to become a nuisance to my Onco, as when it comes to it,one is completely at their mercy?

Hello Fortiemac and Lowe

Thanks for coming back to me. First time on the community web so it was really good to get feedback. 

Fortiemac, I am not sure where you are based sounds like it might be near London and I am in Devon so I think and hope that my treatment has not been effected by Covid even though on the dreaded official day of diagnosis I was told under no uncertain terms that I would be put at the bottom of the ladder if covid erupted as I am terminal so what's the point in investing - that's how they made me feel anyway. This came two weeks after a barrage of insane bedside manner inappropriateness in my eyes, but I think these medical folk become wooden in there communication. I hadn't even been properly diagnosed and the Upper GI nurse told me I that it was in my oesophagus, gone to lung, maybe pelvis (which doesn't even get mentioned now), that is was inoperable and I had better get my finances sorted out! I was aghast, shocked and furious because this came two weeks after the dreaded March 13th day and six months after they told me I had globus, should be relieved it's not cancer and all I had done was complain of a lump feeling in my throat and had gone back to the docs when things didn't change. When in January my voice started changing (I can only whisper now but have been told as long as I can breath and that is a good sign, insane) I went back was told I had globus and reflux (nobody bothered telling me about the reflux) and put me on relux pills. After three weeks still no change went back again for another GP to look and felt a lump by my clavicle and said, that looks exciting, for whom I thought? Not for me if it is serious, he sad that twice as well,  and then I had dreaded check up and all this happened. 

So from the word go I have been questioning everything. I had trouble with admin staff getting me a PET scan sorted not because there wasn't one but because they were "all over the place because of covid, understaffed, working from home blah blah," and I was just thinking get on with your job, I have stage 4 cancer and you misdiagnosed me 6 months ago!! Also I have been incredibly fortunate to have such a great support group and it was one of my best friends that brought up the immunotherapy and kept going on and on about it to my despair at times, as when dealing with this hell and confused about everything, what treatment to take and I was only given the option of chemo, but after much pioneering am now on my 2nd Immuno. I didn't have any massive symptoms to begin with apart from the lump in my throat since Oct last year. But they do come. I was put on the chemo intravenous and pills a week after I was officially diagnosed as radiotherapy and surgery were not an option. Strangely I was relieved about the surgery as that was the beginning of covid and I had visions of being in hospital for the rest of my days, not seeing any friends or family and it was also a decision I didn't have to make. So with the umph of my friend and her obsession with immuno (thank god) I did seek a second opinion through the Rutherford and took a PDL test. Because I had squamous cell cancer it is an option immuno so thank god for that. The private consultant was so positive and just made my mental attitude far more positive with the can do attitude and can't do NHS which at times I have had and I know they are limited with monies, and it helped enormously. I would have to have remortgaged etc has don't have finances for private health care but I am also only 53, always been fit and slightly (well massively) incensed about being put on a scrap heap without a fight. Besides how the hell would these medical folk feel like if it was happening to them which I think I have thrown back at them a few times. Anyway, turns out the Rutherford private guy knew my oncologist from way back so maybe she took me a bit more seriously then. As then I had to go into hospital to get a stent and she mentioned something about a possible early access scheme for immuno and oesphageal cancer, just dropped it in in passing which as massive to me. My eligibility was if chemo was not working all round and although my first scan was positive, the second one was not so much plus I got a blood clot and few other things so finally they got the paperwork done and as of now I have had two immuno sessions. I have had to chase the whole time, I've questioned everything not in a I know more than you way but just in a way that I have done my research and the private consultant said to me it just takes one person to put their head above the parapet to make them notice at times as lots of people accept their fate and don't. I am only 53 and I know my diagnosis is a bit rubbish, I know the immuno has only 20/30% rate of working and not really tested like lungs, throat and neck with immuno but I am not going down without a fight. It would be the wrong thing do for my family and friends and for me. So I would really encourage you to not sit back and wait for the NHS. I mean I am getting this treatment through the NHS or a pharmaceutical company they are partnering with so they have come good but I reckon I am only one in very few that has been put forward for this and wouldn't be in this position if my friend hadn't gone on a me and me them. You are at the mercy of the oncologist to a point, but it is your life and they have got it wrong with me at times where I've had things like shortness of breath and said so and they say stuff like they are not worried and next thing is I am in hospital with tumour growing into my windpipe by 50% and impacting my breathing. That was a shocker and suddenly radiotherapy was on the table and I felt and heck of of alot better. 

So I have no idea how this is all going to turn out but I am so relieved I am on immuno as I would be feeling panicky now if I had no treatment options. I don't know from one day to the next what side effects are gonna present to me and it is a nightmare but I have to fight for stuff. So I would really encourage you Fortiemac to question your oncologist to get on with your treatment and not be cast aside because every day does counts and we want to feel well to do stuff with our family and friends. 

Hopefully hear from you soon. 

Hello March13 and Lowe',

I have been spurred on by you both and with the experience reported by March13 I have just initiated the process of hopefully having an initial consultation to explore whether I might be a suitable candidate for therapies not on offer from the NHS. The initial phone contact witih the  Rutherford was just administrative but I was quite impressed by the manner of the fellow. In order not to put my metaphorical "foot in it" by transgressing the medical etiquette I have just put the phone down from contacting the NHS Oncology department to ask whether it's OK to be doing this and to warn that Rutherford will be asking for my records. I have to say that the secretary there was equally polite and efficient and gave the impression that I would in no way be getting a "black mark" for wanting what is, in effect, a second opinion.

I want to thank you both for encouraging me to get around to doing this and to leave no stone unturned. I am an relatively old fellow at 74 years of age and illness and the imminence of death should not be unexpected - I cannot imagine how unfair a diagnosis of cancer must feel to you younger ones, March13 and Lowe''s husband.

On a slightly oblique note: Yesterday I had my annual 'flu' inoculation and it happened to be given by the GP who initially referred me so promptly for the endoscopy that resulted in my fateful diagnosis, getting on for a year ago. The 'flu' injection was all rather hurried and peremptory, of course, and both he and I were fully masked, but I did take the opportunity to thank him for what he had done for me last November and bring him up to date with my progress (for what it's worth) - i.e. inoperable and now incurable. He said words to the effect (and it's been said to me before by the Onco) "go out and enjoy what you can". I'm not one for the idea of a "bucket list";  but just supposing I wanted, for example, to swim with dolphins or see the grand canyon it's not really the time to do such, is it, when there's a plague raging all over the world!? I am thinking of looking through the "Incurable" group in this Community, to see if they have suggestions for unlikely but plague-possible once-in-lifetime enjoyabilities. Any ideas?

All the best with your treatments.