Hello
Decided to write about what has been described by the hospital as Supraglottis Cancer as when I searched I could not find anything relating to cancer in this area.
On 25th March I visited my GP as I had been getting a sore throat and pain on swallowing for about 3 months. To be honest I thought it was an apthous ulcer as I am a Crohns sufferer and the past year have had a lot of flare and pain. Also had been on Vedolizumab infusions (this is an immunosuppressant supposedly that only targets the gut) which had not agreed with me and made me feel very ill. Another story but one I wanted to mention in case it is ever proven that immunosuppressants caused this cancer..... GP sent me on 2 week referral to the ENT.
ENT appointment was Tuesday 9th April where I was seen in outpatient clinic and a camera was put up my nose. The consultant openly said that looks like cancer to me. I queried the apthous ulcer and Crohns theory to which he informed me it would have healed within weeks if that was the case and sent me for a Panendoscopy and Biopsy which took place on 26th April 2019. After the Biopsy surgeon again said it looked suspicious. I was discharged with requests for Ultra Sound on Neck and CT Scan to be booked and a follow up appointment with ENT for results.
I had Ultra sound on Weds 8th May and CT scan on Friday 10th May with ENT follow up for Tuesday 14th May early in the morning. A couple of years ago I signed up to an on line ap called my medical record where I can see upcoming appointments and blood test results which was very useful for Crohns appointments, while checking the appointments on this I noticed that also on 14th May I had a further appointment in the afternoon at MDT oncology, once I saw that I kind of expected the diagnosis I got.
So on the morning of 14th May I walked into a room that contained my consultant a junior doctor and a cancer nurse. Consultant asked me what I expected to hear to which I replied there was only good or bad news... He looked me in the eye and said you have cancer on the underside of your epiglottis which is near your voice box. The Ultra sound shows no spread to Lymph nodes but the CT scan had not been fully looked at yet but would be before I was seen again that afternoon on MDT where the team would meet to plan my treatment.
At MDT meeting I was called to a room with Consultant Surgeon, Consultant Oncologist, Speech Therapist and Specialist Nurse. Was told that scan had shown something suspicious in my lungs and they would ask the lung team to look at the CT and possibly they would want a PET Scan. It was recommended to treat my cancer with laser surgery, but this came with a risk that food and drink may go into my lungs, Aspiration, if this happened I would get pneumonia and multiple chest infections so there was a chance I would need a permanent feeding tube. The speech and language therapists would be able to teach me different ways to swallow which may help. If there was any concern that all the cancer was not removed then I may need Radiotherapy afterwards. Alternatively I could opt for a combination of Chemotherapy and Radiotherapy but because the cancer was in the cartilage this was less likely to achieve a cure around 40% whereas surgery gave 60%. At this stage I opted for the surgery as the higher odds were more appealing accepting the risks.
On Thursday 16th May I received a telephone call from the hospital asking if I was free to attend a Pre-op assessment on Tuesday 21st May followed by surgery on Thursday 23rd May. Panic set in and I kept thinking this sh** just got real. Think that the diagnosis and scans etc went by in a bit of a dream and I kept expecting Jeremy Beadle to leap out of the hedge telling me it was all a joke. How could I have cancer apart from feeling a bit tired which always did with the Crohns I wasn't ill I had things to do and life to live.. It all felt like a dream. So gave myself a talking to put on my big girl pants and made the appropriate plans. Went for the Pre-op all was good to go, got home that afternoon and received another call from the hospital stating surgery was cancelled on instruction from the consultant....
Next day got another call from the hospital to say that they had postponed the surgery until lung team had reviewed my scans and that a PET Scan was required and this had been booked for me on Friday 24th May. How I was not to mix with children or pregnant women afterwards as I would be mildly radioactive... So Friday morning presented myself for yet another ride in a circular machine Felt like I had been in every department by then. Its a private company that does the PET scans so they guarantee to get results to consultants in 48 hours. So I waited to hear what was going on thinking I would get a new date after Tuesdays MDT or a referral to the lung clinic and a week went by and I heard nothing so I telephoned the cancer nurse. She went off to find out what was going on and called me back to say Lung team had only looked at the scans the day before at their MDT meeting and were not overly concerned but wanted to see another scan in 3 months, that is all I know in regards to anything in my lungs so have to assume that there is nothing to worry about ? She also told me I was back on the list for surgery with ENT.
So went back to work, I work part time in a vets as a receptionist and started putting my life back together again. Was working extra shift on Thursday 13th June when I got a call from the hospital to ask if I could attend for day surgery on Wednesday 3rd July and expect to stay the night. Agreed this was good with me as 27th June was my birthday so at least I got the chance to enjoy a nice steak dinner and a couple of glasses of wine before surgery as risks previously written about could mean I would be on a feed tube for at least a while.
Wednesday 3rd July - arrived at hospital day surgery as requested at 7.15am. about 8.30 got called into a side ward with chairs as anaesthetist wanted to see me and check me over, all good on that discussed teeth and lips etc nothing to worry about. Then along came a surgeon I had never met before who wanted to put a camera up my nose as it had been 7 weeks since they last had a look see just in case anything had changed. He struggled a bit as I have narrow airways in my nose but eventually got a look, said nothing seemed to have changed much but wanted to know why I was having surgery and not Radiotherapy. This confused me as previous discussion said my odds were better with surgery but he seemed to think it was 50/50 and I would possibly still require Radiotherapy after the surgery. He basically went through all the things that could go wrong with surgery at worse case scenario ending up with a Stoma to breathe and tubes to eat, then he went and consulted outside with his superior. He came back to say that they could go ahead with surgery but it would be a long operation waiting for frozen sections and was I sure that I wanted surgery not Radiotherapy. This confused me and was starting to stress me out as it was not what I was expecting from previously agreed treatment plan. So I said I wanted to go ahead with the surgery as I have a morbid fear of the Radiotherapy, the thought of being fixed to a table with a mask absolutely freaks me out. So waited around a bit stressed and eventually about 1.30pm I got called to theatre.
Imagine my confusion when I was coming to in the recovery room and noticed the time was 2.30pm, obviously having had anaesthesia one is a bit confused about what where and how you are where you are.. Was then given some oromorph and asked if I wanted anything to eat or drink. Now I am really confused as I expected to wake up with a feed tube for anything from 1 - 60 days I had been told. So sleepy and confused thought I was dreaming, then got moved to a corner as there were no beds available on the ward and stayed there until about 7.00pm in the recovery room. Meanwhile I had tried a few sips of water and found I could swallow it. Moved back to the ward, my other half came to see me but I was rather sleepy and not good company as kept dosing off, then around midnight I started to wake up and thought what the hell has gone on. Apart from a bit of a sore throat I felt perfectly fine, in fact the biopsy had been more painful. Got up went to the toilet and was absolutely fine. Next morning a doctor again never seen before came round I asked him what they had done as it did not seem to be what I was expecting. He just said we removed the lesion and will see you in clinic in 2 weeks time to discus the Histology, that's it. You can go home. So nurse came removed my two catheters and said they were going to go do the paperwork and I could go. I asked if there was any drugs to take as they had given me antibiotics for breakfast. He checked and said yep I was right I had to go home with 6 weeks of strong antibiotics, have to wait 3 hours to get them from the pharmacy. By now I have had enough and burst into tears, saying what was going on was it cos I am over 60 and not worth saving not had the op I was in for, no one knew I was supposed to have antibiotics and would have left without them if I had not noted what was given to me earlier. I am between desperate and angry and have no idea what happens now am I cured or not?
Eventually got drugs we got pushed to a departure lounge as they needed my bed and actually we had a bit of a laugh as one of my partners friend's wife works there and she was making us laugh. But I was still angry as I had no idea if I should be dancing in the street or slitting my throat...
Therefore on Friday morning when feeling a bit more with it I rang the cancer nurse and asked if she had any idea what they had done and why. Again she went off to find out and rang me back quite quickly. She said that surgeon did not think frozen section was required and that the cancer did not seem as bad once he started the removal so he had sent it all to histology for full breakdown of the type of cancer it was and the result of this will determine if I need to have radiotherapy ( she did say it is more than likely required) so in fact this is good news, why couldn't the doctor seen Thursday morning just have told me this. She also asked from the surgeon if I was coping with the pain and managing to eat and drink, which I am.
So Now I am waiting for an appointment to see what if anything happens next. Have I got away with this lightly or are there more instalments to come.....
First yesterday morning an appointment popped into my on line portal for next Tuesday 16th July with the MDT Oncology team, Assume this is to discuss the histology of last weeks surgery. Lets hope I get the all clear and we can close this blog and I can count myself one of the luckiest ones. Old man is texting, where are you, no one there to cook his tea I suppose, sometimes I do despair. To explain 3 years ago he had a very serious motorcycle accident which entailed 2 months accommodation in the hospital, and left him with some brain damage as he had 3 bleeds on the brain due to accident and multiple fractures all over. He has done well to get over it but if he gets stressed he reverts almost childlike and there is me with the cancer having to deal with his problems all other family problems and my own health. Suppose that's why who ever rules this universe may have decided to give me a little test and perhaps let me off lightly. So lets hope they give me the bums rush next Tuesday because I cant afford to be ill too many people want to drop their shit on my doorstep to deal with lol.
Well here we are at Tuesday 16th July 2019, just got back from my oncology appointment. Actually feel a little more positive about things after chatting with Dr Upal, sounds like this but this is not his actual name. Anyway he explained he did the surgery 2weeks ago and thought he had removed all visible signs of cancer but histology has showed some stray cells so he wants to go again with a further Trans Oral Laser Resection. He thinks I have done great to get to where I am in 2 weeks, eating, drinking and talking without having to rely on pain killers, obviously made of some strong stuff. Anyway we now wait for another surgery date to go again. He has said we will hold the Radiotherapy card in case it comes back later in the journey but we cant play it more than once so to trust him with current plan of conservative surgery. Hope he is right.
Thursday 17th July 2019, got an early morning call from the hospital to make an appointment for a pre-op assessment, this seems like such a waste of time and money for the NHS they only operated 2 weeks ago and I was seen in clinic 2 days ago where it would be pretty easy to tell if I was well enough for another bout of surgery. Cant give me a date until this has been done so it is not going to happen within 2 week time frame. So am going back to work on Monday, they understand that my voice may not hold up to a full shift of answering the phone and talking to customers but will do my best. Have to say that I feel very confused this week swinging between thinking I am one very lucky SOB to get away with cancer so lightly and what is all the fuss about or worrying that neither myself or the Docs are giving it enough respect and it could be travelling around my body gumming up the works as we speak, guess only time will tell. Just does not feel right that someone with an ingrowing toenail can need more attention and pain killers than I do as a cancer patient, but to be honest I have never really taken this seriously since being confirmed on 14th May.
Well following on from above I went for the pre op assessment on 30th July then got a call on the way home to book the surgery for Wednesday 14th August. Usual thing be in for 7.30 in the morning and expect to hang around. Was only expecting to be a day surgery case this time so not too much prep done anywhere. Called in to side room for meetings with Anaethatist and surgeon all good and getting to know me now. Walked down to theatre about 11.30 am was joking with the docs before sleepy byes.
Woke up in recovery round about 2.30pm so been a long one this time, was struggling to breathe for a while and fighting the oxygen masks and nebulisers they were trying to give me. Had 3 morphine injections that I know of so calmed down once they took hold. Makes me laugh docs come to see you after surgery and you are in no fit state to take in what they are saying however I recall them stating epiglottis is clear as they had done frozen sections this time however they had found a very small lesion on my vocal chord, also removed but will need to discuss that at next meeting? They also removed a skin lesion from my chest as a favour am pretty sure this is one of my Keratoacanthomas but I think they sent it for histology to be sure. All in it sounds pretty positive and I may be sat here cancer free. In which case I have got away with it lightly.
As a foot note I will say I have to have thickened liquids this time not sure how long I will need these hopefully will learn how to cope and not require them for long. I am a strong sensible woman after all. Soft diet, not actually eaten for 3 days apart from a small bowl of ready brek. I am sore this time and struggling to swallow, also bringing up some mucus. A bit bruised round neck and jaw as well.
Hoping this might be the end of my story but have a feeling that it is not, the fact another lesion grew in my vocal chords in 6 weeks is a bit concerning but I will keep that to myself for now. See docs again in 2 weeks.
Think its time for an update. Been 6 months since last surgery and was given the all clear after this second laser resection. Thought well that's it has all gone get my life back on track and get on with it. Meanwhile my Crohns decided to poke its penny worth in and after new MRI it has been seen that the crohns has now increased to over a foot of active disease, as I can no longer take immunosuppressants IBD team put me on Modulin (liquid only feed) for 8 weeks, have not had a meal since 3rd January and dietician appointment is next week which is 7 weeks from start. Tummy not so painful so hoping it has worked and they are talking about putting me on Methotrexate. Meanwhile the lung team realized they had not followed up on my spiculated nodule which did not show up glowing on Pet scan. They did a new CT scan in December and called me in for results early January. Apparently the spiculated nodule they were concerned about because of its shape has not changed at all but there is another nodule in the bottom of my left lung and this has grown a little so more scans to come next month.
Meanwhile having regular cameras up the nose to check the epiglottis, last one in January said the stump of the removed cancer is slightly raised so only allowed to go 5 weeks between checks for now. Next appointment with them is next Tuesday 18th Feb. All in I have been thinking I got this and all is gone I am cured. In addition to All my other crappy silly illnesses I get multiple Keratoacanthomas that mainly grow on my face. I have a retired from NHS dermatologist who still runs clinics privately for people and he has been great over the years. I had one on my eyelid, one on my forehead and during the past 3 - 4 weeks I have had a rather large growth put in an appearance on my upper lip. I thought this was a KA but on seeing my Doc this evening he has refused to treat it as he does not think it is one, so tomorrow I am going to have to try and talk to someone to see if Maxillo Facial will see me as part of my treatment as it is a possible secondary and to have this removed will mean losing half of my top lip. As you can imagine I am feeling pretty down about this. Don't know what to do at the moment will have to make some calls in the morning and will continue this update as and when I find out what the hell is going on in my old body this time.
Feb 25th 2020 - Time to update what is going on. Called hospital in respect of above and they bought forward my appointment by a week with Head and Neck Oncology. When Doctor noticed my lip he called in his colleague from Maxillofacial who said he wanted it biopsied within days, so had this done under local on Friday 14th Feb. Head and neck did usual cameras up the nose and got very excited taking pictures as there is new growth on the original site. Also wanted to biopsy again so appointment made in pre op assessment for today 24th Feb. Passed the pre tests then went to see the nurse for medical history etc. Explained appointment for results with Max facial on Thursday, She went into my notes and said oh it must be this one and her face changed so I said its not good is it and she agreed but could not discuss further. She went off to talk to the anaethatist and came back to say that they wanted me to return to see him after my appointment on Thursday and my lung CT next week.
So I have a possible 3 sites of Cancer. Been to MDT today and Radiotherapy is the treatment for my lip. Biopsy still needs to be done on Epiglottis, but Pre op would not clear me for surgery until I get results of latest lung scan also done today. I feel like I am going round in circles waiting for someone to make the first move and no one can tell me if I have a secondary on the lip from the Epiglottis or a new primary I am getting so confused with what is going on. I was trying to ask questions today and the Radiotherapist consultant said we have to get started or opt for Chemo for palliative care. Are you all confused yet because I am. So then the dentist arrived and thank god I have good teeth so no delays to start of Radiotherapy as the lip tumor is still growing and too large for surgery that might leave me with something resembling a face. Was warned that it will be very painful because of nerve ending etc. It is already so not sure how I am going to cope with even more pain and struggling to get any food in my mouth already and drinking through a straw. Feeling really down about all this and just want to howl and cry. It will be about 6 weeks before Radiotherapy starts and in the meantime have to have General Anaesthetic for a biopsy on new growth in throat. Appointment for lung scan results then straight to Pre op to see Anaethetist. Also been told to hound the admissions clerk as soon as I have been cleared because they cant operate on Epiglottis once Radiotherapy has started, so might add it to the mix so they can target lip and throat. Lets hope the lungs are not going to complicate matters. Also have ultrasound on neck to see if any swollen Lymph nodes on Monday, lets hope not. This time I am scared as feel it is spreading.
Well a lot has happened since I last updated this Blog. Ultrasound on lymph nodes was clear so that was positive. CT on lungs said there is some slight increase to the lower left lung nodule and to have a follow up scan in 6 months, they cannot biopsy because it is too deep in the lung so only radiology follow ups to keep an eye on these for the time being. Letter from them stated 'The spiculated lesion on her right apex of lung and also lower lobe of left lung lesion, though appear to be possibility of synchronous primary bronchogenic cancer, she was under close surveilance with regular lung MDT discussions since it was picked up in 2019'. So in their words I am not out of the woods but they are happy nothing is happening with any speed at the moment so wait for next scan and shelf this for the time being.
Had a chat with Anaethatist after this result on 10th March 2020, and he said he was happy for me to have the surgery on my throat which he described as being an excision biopsy, they would aim to get it all in one. He said this was to be marked as urgent and I was to chase admissions if I had not heard in a few days, so called Bev on the Monday 16th and she gave me a date of 2nd April, I also asked her to put me on cancellation list as was willing to go on short notice as this was holding up my Radiotherapy. She called me the next day and said they had a cancellation for Weds 25th March so I accepted. Following Monday I got a call to say they had to cancel this date and move it to Friday 27th. Thursday 26th got a call to say had to be moved to Monday 30th, then Friday 27th got a further call stating all elective surgery was cancelled due to Coronavirus and no new dates to offer. To be honest I got very upset as I feel I have now been hung out to dry and this Covid 19 could go on for months so I am left in total limbo. At the moment I supposedly have an appointment for mask fitting on 22nd April which also got moved out due to delays with surgery. I need to call someone to see if they will start the Radiotherapy as a stand alone and leave the throat until some time in the future because the growth on my lip is now grown considerably and measures 4.5cm by 2.5 cm and I have painful ulcerated lips. None of us know what is going on with this virus, I have been identified as high risk and have to stay in for 12 weeks, 1 week done. Also Ian has been laid off on the Furlough agreement the government have set up so he is home all the time which to be honest at the moment I could do without. Its a scary situation people dying and streets empty, probably need to write a bit more about it for the history books but just wanted to get this blog updated a bit before I forget what the hell is going on myself. I do realise how serious it is and if I do get it I might not get out the other side with the state of my lungs, Immune system and now cancer all over the shot, keep swaying between my usual upbeat personality and downright depths of despair. Only I could get ill at a time like this, just got to hope I can survive the next 3 months without it branching off anywhere else.
Not been keeping up with this as things are a bit crazy with the virus but I got a phone call on Tuesday 7th April to book me in for the further biopsy on my throat the following day. Had to be dropped off no one allowed in the hospital unless they had a patient letter. All very quiet and surreal. Anyway I got admitted and went to surgery, all very different to the last ones they applied a huge dose of oxygen to the lungs until I felt like I was drunk then put me to sleep, not sure why this was. Had biopsy done and surgeon said that what he had seen on the last up the nose camera had disappeared so he thought I was clear still. Not had the results but he also released me to Radiotherapy so this can start on my lip tumour.
Rang Radiotherapy on Monday 20th to see if I had my appointment on 22nd confirmed and told it was and to be there alone at 10.00 am. So this morning I have attended for mask fitting. This was really technical and I spent nearly 2 hours in the mould room while they worked out how to fit a mask that would protect good skin but nuke the hell out of the tumour which the DR said had grown considerably. I think his measurements were 6.5cm x 2.5 cm. Anyway they drew all over my face, asked me to try several types of gum shields but these pushed the tumour up my face too far so they have made a shield with like a little bite tool with a large outlet to breathe through surrounded by dental putty and I have to put this in every time I go for treatment. Then they covered my face in a thick cream and plaster of paris to make a mould of my face. They are going to use this to make a shield with lead lining which is meant to protect my good skin and lower lip which will be done by Friday afternoon. Then I have to go in at mid day on Monday to have the finished article fitted and okayed ready for first treatment at 1.20pm same day. Followed by 4 weeks of 5 days a week at all sorts of random times, some in the morning, some late in the evening but most around lunchtime. Also ordered some lidocaine lip cream which will help me to put in the mouth guard as its close fitting and was cracking my ulcerated lips now so said that I could manage it now but after a few treatments I did not think I could. Will just have to see how we go.
Not updated since treatment started, first week went fine was no where near as scary as I thought it would be. First they have to tape up my nose to pull it up and out of the firing line, then I have to insert what I now call my snorkel the dental putty thing, then I have a Perspex mask which is lined with lead around the firing line to try to protect good skin. Then there is an A frame with a lump of lead to get accurate beams or radiation. Now the team have got used to the measurements it does not take them long to get everything set up. So first 8 treatments were fine just taken 4 doses of Paracetomol daily. Last Thursday I was kept waiting for an hour, so my painkillers had run out by the time I got in. Then they wanted me to have a chat with Harry the head radiologist. I wasn't very nice to her I think was tired and in pain. Anyway she told me to move up to Co codamol, which I did but only two doses night and morning until yesterday. It all seemed to change yesterday, loads of internal mouth ulcers, pain was constant wouldnt go away so took co codamol all day. Had early appointment this morning and really struggled with my snorkel. Anyway managed to get some Difflam mouth wash on the way home which has a numbing affect so gives a temporary respite. Also taken a dose of Oromorph tonight as just cannot get on top of it today. Late appointment tomorrow so can have a lie in.
Never got the inclination to keep up with the details of the Radiotherapy so to summarise, by end of 3rd week I was on Co codamol 4 times a day and Oramorph 2.5ml 4 times a day. Week 4 was hard, every time I tried to get my snorkel in my mouth bled and the mask felt heavier every time it was used. I was so pleased to complete the 4 weeks as I had seriously thought of giving it up. It was a painful and brutal process. Saw DR 2 days before finish he said the radiation would continue for a couple of weeks so things were likely to get worse before they got any better round about 3 weeks time. Well he was right I have had an awful week one post radiation. My face is burnt, cannot clean teeth as it just rips out the loose hanging skin in my mouth. I have to peel my face from the pillow when I wake up. Been sleeping quite a lot as cannot concentrate on doing anything, not even interested in TV. Upped the morphine to 4 - 5 ml as it was not working. Pain and discomfort is terrible everything is so dry and my lips keep sticking together. All I am eating is half a tin of made up modulin so about 1,000calories. Gone down to 10.5 stone. The drugs seem to have upset my tummy. Cannot go to toilet or it is pouring from me, seem to go 4 days either way, take some movicol as feeling bloated and in pain, then am in pain for a couple of days while things clear again. Am so fed up with feeling like crap. Fed up with the virus and all that goes with it. In all honesty if I knew what this treatment would do to me I would never have had it. I am pretty tough but this has broken me am so depressed and down. If it comes back again I am not going to fight it anymore I don't have the strength.
