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Throat Cancer in cartilage of Epiglottis

15 May 2019 08:19

Diagnosis given and MDT appointment same day, stage is T3, radiotherapy will not work as it does not get into the cartilage and would only give 40% chance of cure, so my only option is surgery.    If they have to remove too much I will be on permanent feeding tubes and possible voice box removal but this is worse case scenario.  Speech therapist has to teach me how to swallow properly as this will likely cause aspiration of the lungs and I will get multiple chest infections.  Pretty scary stuff.  Possible radiotherapy after the op has healed to ensure all is gone but have to take it one day at a time.

Has anyone else got experience of cancer in this area.  I have read some of the blogs on radiotherapy but was not prepared for this.

Surgery is planned for next Thursday 23rd May.

Throat Cancer in cartilage of Epiglottis

18 May 2019 14:28 in response to MO60

Hi MO60, 

I noticed you hadn't had a reply yet so I just wanted to let you know I've had a quick look through the forum for you and found the lovely @TinaDL ‍. Although her husband has been on a slightly different path treatment wise, his cancer was found in the epiglottis so I just thought I'd put you in touch as it's nice to chat to someone who understands what you're contending with.

If you'd like to chat with someone about your upcoming surgery then do give our cancer nurses a call. They're available Monday - Friday between 9a.m - 5p.m.

Wishing you all the best for the 23rd MO60, we'll be thinking of you.

Kind regards,

Steph, Cancer Chat Moderator

Throat Cancer in cartilage of Epiglottis

27 Jun 2019 19:35 in response to MO60

Well today is my 61st Birthday and I have had so many flowers had to go out and buy new vases.  Had a lovely Steak dinner and a couple of glasses of Champagne.  Really glad that my surgery was delayed until next week now it has given me a chance to come to terms with things and to enjoy my birthday.  Keep fighting wherever you are and whatever stage you are at.  Some days like today i keep expecting Jeremy Beadle to leap out of the bushes and tell me its all a joke as I dont feel ill, how can i have cancer?  Then I read about Dog the Bounty Hunters wife who started off with Stage 3 throat cancer 2 years ago and who died yesterday, then it hits me that this is serious.  Excuse ramblings probably champagne talking.

 

Best Regards

Mo xx

Throat Cancer in cartilage of Epiglottis

27 Jun 2019 20:22 in response to MO60

Hi Mo happy birthday try and keep,a positive mental attitude I can’t help yiu with surgery as I onky hadn’t radiotherapy n chemotherapy but hang on in there

 

hazel,x

Throat Cancer in cartilage of Epiglottis

27 Jun 2019 20:54 in response to RadioactiveRaz

Thanks Hazel

There is no only about Radiotherapy, I think that scares me more than surgery as might have to have some afterwards.  It all depends on the histology am having Trans Oral Resection with frozen section, which means they will send bits down to path lab before completing surgery to check if they have it all.  Feel like a bit of a trekky going into the unknown as I have no idea if I will be able to eat afterwards or alternative feeding as consultant put it and worse case scenario Stoma, so it really is a bit of a mystery till they start cutting but surgery gives me 60% chance of a cure whereas Radio and chemo combined only gives me 40% so have opted for the higher odds.  But it does all seem a bit surreal, guess you all felt that way before treatment began.  I know it wont be easy but I also want this cancer out of me.

Have a lovely evening at least the sun is shining.

Love Mo xx

 

Throat Cancer in cartilage of Epiglottis

27 Jun 2019 22:22 in response to MO60

Mo I missed your birthday sorry . I hope you had a happy one . All the very best for your treatment . Hugs Ginny x x

Throat Cancer in cartilage of Epiglottis

27 Jun 2019 22:47 in response to Ginpo

Thank you Ginny

Its been a nice day.  Been keeping my self busy as Surgery is now on the 3rd next Weds so been trying to not overthink things and just going with the flow.

How is your husband now, is he starting to feel a bit better after his treatment, I have been thinking of you as reading all the threads it gets worse before it gets better once the radio finishes.  Best wishes to you both.

 

Love Mo xx

Throat Cancer in cartilage of Epiglottis

28 Jun 2019 09:08 in response to MO60

Hi Mo we are all different but the same I was freaked in case of surgery but ok with radiotherapy knee the after effects would be bad just didn’t realise how much I would miss saliva we all tske it fir granted until u don’t gave any n trying to explain it to anyone I get blank stares. But the cancers gone yep it has but the after effects are still there cx re alternative feeding how about think tomorrow s world good old Raymond Baxter always envisioned us popping a pull instead of food n cooking so you may be ahead of the trend. Hope that made u laughs. Ps I likened my dark period to Apollo 13 and being sling shotted  round the back of the moon. 

Keep in touch please let us know how u get on 

h d

Throat Cancer in cartilage of Epiglottis

4 Jul 2019 19:13 in response to RadioactiveRaz

Actually feeling angry and upset.  Just got home from hospital after so called surgery.....  Story is we were told to be at hospital 7.15am yesterday morning, around 8.30 we were called to a room to see the anaethatist, who was fine with everything.  Then about an hour later two surgeons I have never met turned up, they wanted to put a camera up my nose as not been looked at for a couple of months.  Said nothing much had changed but i would be better off going for radiotherapy and said the odds were 50/50 for either but invasive surgery we could not come back from.  But having looked at all these things with original surgeon I decided to go ahead with surgery.  Was told it would be long and i would have a feed tube when i woke up and all the things that could go wrong with breathing etc.  Surgery was delayed and i eventually walked to teh theatre about 1.30 yesterday afternoon, imagine my surprise when at 2.30 i noticed the clock in the recovery room.  No one came to see me and explain anything, was kept in overnight but slight sore throat less pain than after the biopsy was all i had.  Saw another different doctor this morning and asked him what had happened as no frozen sections were done.  He did not want to talk to me just said they had removed the lesion and sent it for histology.  This is not the op that i understood i was having so now I have no idea if by some miracle they have removed the cancer or if I now have to undergo radiotherapy as well or what is happening but have an appointment for 2 weeks time yet to arrive.  I am now so upset as i dont have a clue what is going on, the treatment plan was ignored and i know i still have the cancer there is no way they have removed it with this small op.  Sorry for long rant but want to write it all down so there is a record.

Mo xx

Throat Cancer in cartilage of Epiglottis

4 Jul 2019 20:22 in response to MO60

Hi Mo you have every right to feel angry i think I would  have refused to to leave hospital without someone giving me an answer. Have you tried speaking to original consultants secretary and getting at least a phone consultantation booked in. ? I know you were freaked out at the thought of radiotherapy look if I can do it anyone can will always be on site to talk you through  it  send me a friend request if you want to be a bit more private in the meantime don’t let it fester away inside if you try and remain positive 

Hazel x

Throat Cancer in cartilage of Epiglottis

5 Jul 2019 12:07 in response to RadioactiveRaz

Thanks Hazel I rang the cancer nurse this morning and she went off to chase down the consultant.  It seems that they decided frozen section wasnt needed and depending on the histology of what they removed i might have to have some radiotherapy.  So I have to wait 2 weeks to find out what the next step is.  Consultant did apologise through her to me as it was not explained and hoped i was coping with the pain and able to eat and drink, which i am although must say quite a bit swollen today, dont feel like much at all and sore just natural swallowing.  So its not quite dancing in the street news but better than I expected although seems likely I will be having some Radio which i absolutely fear, its the thought of being tied down I am going to panic because of something that happened when i was young.

Lots of Love Mo xx

Throat Cancer in cartilage of Epiglottis

5 Jul 2019 13:33 in response to MO60

Hi mo I will get u through this number one nothing to panic about. 

If u have radiotherapy ask if they will put eye holes in your mask it really helps and staff don’t always think to ask 

number 2 it’s rare for you to be on the table much longer than 12-15 mins 

so I am sure you have a favourite walk fav place to go ? Fav film or similar practice now lying down in bed in sofa outside shut your eyes set s timer for 15 mins and take your self mentally there  I did with bike rides I included coffee stops loo breaks anything . Surprising some days I didn’t even get half way n the staff were coming in to get me out  

3 ask if they have CD player maker uo a playlist or take I pod in u can’t hsbe ear buds in but maybe music on your phone  

I varied ftom queen to spring stem ABBA to Elton John stagg used to love guessing which ones I was having that day  st the end I left the CD s for them  

the mask personalise it mine had a name I walked in every day said good morning to her n told her the next few mins she was helping safe my life  

please don’t fret  

why do u say something when u were young ? Are u h p v positive if do remember 84 % of the world is 

hope this helps keep in touch try to eat soft things poached eggs on mashed avocado are goid

h x

 

 

Throat Cancer in cartilage of Epiglottis

16 Jul 2019 23:08 in response to RadioactiveRaz

Hi Hazel had follow up with Oncology today and surprise surprise as I thought they did not get it all.  At least the surgeon had a one on one with me and discussed what he has done and why.  So next step is that he is going to go again with another Trans Oral Laser Resection and remove a bit more as there were still some rogue cells to close to the edges.  Bet I dont get out of a second op as well as this first one but lets give it a go.  He said we could do this several times but once we play the Radiotherapy card there is no where else to go but complete voice box removal and Stoma so best to conservatively cut and keep a close eye on me, throw Radiotherapy at it if it comes back and take it from there.  Hope he is right I dont like the thought of it wandering around in case of mets.  Anyway he said 2 - 3 weeks and to ring and pester if not heard in 2 weeks a new date so here we go again.

 

Best Wishes Mo xx

 

Throat Cancer in cartilage of Epiglottis

17 Jul 2019 10:01 in response to MO60

Hi Mo

thank you for updating like you say u know your body and I agree once the radiotherapy card as come into play it can’t be repeated. In my case as one if lymph nodes was too close to spine to operate in comfort we had to take the chemo radiotherapy road. Kerp on top of appointment don’t slip through the net. Keep positive they know what they are doing

take care keep in touch

hazel xx 

Throat Cancer in cartilage of Epiglottis

17 Aug 2019 00:13 in response to RadioactiveRaz

Hi All

Had my second laser surgery and did not get away with it so well this time.  Am on thickened liquids at the moment due to ammount they had to remove from Epiglottis.  Good news is this time they did the frozen section and have got it all.  Bad news is they also found a small lesion on my voice box this time so need to wait untill meeting in two weeks to see what the score is with that.  Admit i am struggling a bit this time, throat is so swollen breathing is affected and i cant stop coughing which is making it sore.  managed a small bowl of ready brek before discharge yesterday and had a little mash with cheese today but not really interested in food.  Hospital was awful again they didnt give me any pain killers because i could not swallow them, they didnt give me the nebulisers recovery asked them to guess its cos they are under so much pressure.  Got to see GP as i am iron deficient and this is not urgent to them so try to get an appointment, impossible.  Feeling a bit down and fed up with it at the moment.  Still sure i will bounce back.

 

BR All Mo xx