Oesophageal Cancer after Laryngectomy

Ok so had a prelimary meeting with the Oncologist and seems quite positive, unfortunately the Cat Scan was cancelled on Wednesday so they didn't have those results but he suspects from the previous scan results it has not spread from the site. I have the PET scan now tomorrow so at the next meeting on Tuesday they can finalise the plan whic he tells me will be having a PEG fitted for safety even though as none of them can't understand I am able to swallow most food- just bloody bread that is difficult !- it will be in for approx 12 weeks to ensure I am nourished. I am having Chemo/RT for 5 weeks, he says also the Chemo once a week will pick up any stray little buggers.

Have a further meeting Tuesday PM at St Lukes, Guildford for further information and hopefully timescale of starting, my weight and health they say is excellent so they don't see any big problems. The Oncologist says that due to the growth being so high up, an operation would have to be a final, final option after all others have been tried, I am so relieved for this due to what I have read and I have so much admiration for all those who have had to face that battle.

So at last a plan has been put in place with a new Oncologist that specialises in this cancer, 3 chemo's 3 weeks apart and 25 RT and 5 chemos, no need for a feeding tube as they say my swallowing will be limited effected- soft foods towards the end and the fwew weeks after. I had a dreadful week as appointments were cancelled last minute but on Thursday the reasons were explained and also my Speach Therapist Nurse came to the rescue before to say the PET scan etc was fine and no spread of cancer, it all kicks off 15th December so will luckily have a break at Christmas having only had 1 chemo session

Hi Kasvin

Sounds like a extensive treatment plan has been put in place for you, duly considered and for your best chance of recovery.   In some ways December 15th seems so far away, and in reality it is just around the corner... so very soon you will be having the start of you chemo, and fighting to win.  

I wish you every success with this treatment, and don't forget the forum and the Macmillan specialists are here for you. Good Luck. 

Lowe

So had my first Chemo on the 15th Dec and second one comes next week 5th Jan followed 3 weeks later by another chemo and the start of 5 weeks of daily RT. Have to say the first chemo didn't effect me that much except for no proper sleep for a couple of nights and constipation for about 5 days-getting some supositories seemed to wake up th ebowel without taking them ! the sleep matter was explained to me by the Nurse that they pump you so full of sterioid that it will happen. I had some fatigue for about a week and particularly about 2-3pm so had a nap at that time not too long.

St Luke's in Guildford is a great place and you are well looked after

Tony

Hi Tony

Thank you for the update, Dal says he would never take steroids after 2pm otherwise he would not sleep either, he no longer takes those with his current treatment. 

Pleased to hear that overall there were little in the way of side effects, and I hope that is the same on Jan 5th. 

With regards to RT this is something I know almost nothing about, so I hope you will continue to update us, on how things go, fingers crossed for almost no side effects throughout, or at least, side effects that you can effectively handle X

Lowe

Update- not going too well, the chemo is fine but the RT has completely demolished my stoma, we are now frightened that the airway may have become very sensitive, the stoma is bleeding then scabbing overnight so the next morning cleaning the airway starts the whole process over again

Met with the Oncologist yesterday and she is going to speak with ENT but frankly as I have always thought the worse of RT has come true, I have had it yesterday and today this is my 3rd week of 4 but won't know until next Monday at clinic what they think ! I have had 4 calls today each with seperate issues and they have brought forward my appointment next Monday so think that will be decision time, then of course you have the add on damage that goes on working after the RT is finished, plenty to think about.

All I hope is that the voice valve/speech won't be affected more than it is at the moment, it was the one thing I specifically asked at the beginning that the stoma wouldn't be damaged -Ha Ha !!

Hi sorry to bother you but my husband is going in for a laryngectomy next week but the hosp have been awfull with giving us any help and he has questions as he is very afraid of the surgery as has things going round his head like how do you blow your nose. And cough up flems as he also has copd  and coughs up a lot in the morning ect which may sound daft but I know it's doing his head in, so thought I'd come on here an find someone who's had it done and ask them, hope you don't mind? Xx

Welcome Benllech, firstly sorry your husband is facing the Laryngectomy it is extreemly worrying and I can understand his concerns regarding issues after. The first thing is has he spoken with the MacMillan Speech Therapists yet as they are there for any questions and normally have the answers. I was lucky as my Consultant was very explanatory and my team of speech therapists are fantastic.

I'll be specific to what you have asked-blowing your nose, his nose will not work after the op, however it will run slghtly especially when he eats, he will have no smell unless it is wafted into his nose as his nose has no breath, after a long time he may have the ability to blow his nose and wherever he gets his supplies of baseplates and HME's from they may have online sessions of tips I use Atos Care for my supplies but again the Sppech guys will advise and sort that out with him, I assume he is having a voice valve fitted which will give him a voice after a few weeks.

Regarding his copd, I have emphysema which also means I produce quite a lot of phlem, whilst he is recovering in hospital they will continually vacumn his stoma/airway and also nebulise him regularly to keep the airway moist and fluid, Iwas then supplied with both machines to bring home with all the supplies and still have and use both 2 years on particularly the vacumn as it easier to clear the airway however really it's idleness as you can cough up but it is a bit messy.

I think you will find everything will fall into place with support post op when all the different people become involved in the recovery, he will be on liquid feed via his nose for a while until he has the leak test to check that the windpipe and food pipe do not leak when swallowing drink,once that's ok then he will beallowed to start a soft food diet.

Please come back if you want any more questions answered and I will do my best, but if they advise radiotherapy after the surgery please question the Oncologists very thoroughly as to the pros and cons, I decided not to go ahead as the damage it does out weighed the benefit as I have just gone through with my latest Cancer treatment.

Hope it goes well, but just keep asking the questions, some consultants just don't communicate but the Speech Therapist will and I would be very suprised if they don't answer any of his worries, Take care and just ask if you need anything

Tony

Thank you for your reply,  when did they put you in touch with a speech therapist as they haven't said anything about that, they haven't been very helpful at all, just told us what they are going to do and left us to it, which I don't think is right with such a life changing opp!!

Also what do you mean about rt and the damage it does? They have said he will need some treatment after but whether chemo or rt I don't know? So what is the damage it can do?

Sorry to bother you but don't know where else to turn?

Thanks x

Hi, the speech team were involved from the start of the discussion with the Consultant so am suprised you haven't been offered further support from them, I would suggest that you ask re this important part of the after care which he will need, I don't know what area you live in, I attend Royal Surrey in Guidford and St Lukes Cancer Guildford. As I said previously it may be that all this kicks in after the operation but they should have informed you, I am a member of the Laryngectomy Club - https://www.laryngectomy.org.uk/ they have full info re laryngectomies and as you see they are a charity, I work for the Citizens Advice so only choose these types of info.

As for the RT, as I have discovered with my present Cancer I had Chemo and RT, the Chemo was fine but the RT done so much damage to my airway I am just starting to recover and it badly effected my stoma. I asked what damage would be done if I had RT after the operation and what they told me - possible swallowing difficulties, damage to speaking all sorts which they have to tell you I decided I would not have it, they said I had a 20% chance of cancer in the throat area and RT would reduce it to 10%, the thought of the possible damage made me go against it and my consultant had taken a lymph node from my neck and said the RT was just belt and braces. This is a decision that will have to be made yourselves but if all goes well and he eats, drinks and talks OK I would really question an Oncologist very carefully and ask the percentages. I would be suprised if it is Chemo after, if they are going to try and pre treat it would have been prior to the op both chemo and RT, and that can be dangerous as the damage is done and the surgeon has to rebuild the area connections after removing the voicebox.

All I can say is that once you get over the shock and learning life is OK, different but you are alive and I went back to work after 3 months you just change some of the ways you handle day to day living, the HME filters by the way protect against most airway infections such as colds and flu and it's been great for Covid as when I'm out I have a filter that is 98.9% protection

Hope this helps a bit, just ask if you want anything else- good luck to your Husband for next week, it is worrying but after the initial shock and change it does get better.

Tony