We are Macmillan. Cancer Support
Well I would really appreciate your advice here. Dad was diagnosed with throat cancer October 2011 which followed radio/chemo..and then surgery of the lymph nodes . December 17th he got the all clear. He really came out the other side and was feeling pretty OK. He made a trip to me in Greece at Christmas, looked great, felt great but had a slight sore throat. Immediately went for tests when he went back and we got the unfortunate news today ...ITS BACK???? They have scheduled surgery for 20th of February to remove voice box. Obviously this news is fresh and I am so mad!! Anybody out there who can help me and give me advice please feel free.
i know the feeling personally as the same thing has happened to me,i first got cancer of "the floor of the mouth" that progressed onto cancer of the lower jaw bone a year later,so had extensive surgery to rebuild lower jaw bone, that worked out ok and and the bone from leg has now formed a new jaw bone.About a year later i had a lump on my neck below the adams apple,we thought it was a boil,not my luck as it turned out to be cancer returning ,they were not sure if larynx was affected but they looked down my throat to have a look,they said "there is a good chance during surgery that theymightl find out that it had spread to larynx (voice box),you guessed it my voice box had to be removed.The rest is history.They can never guarantee that the cancer has totally gone as my case shows,i was never mad but upset that it had returned again and was going to take a very important part away. and never speak again .so bit the bullet and had the operation done.I MUST STRESS that there are ways of getting people to talk again in different way,which is better than a kick up the backside, and now two years on im ,hoping it has gone.Please contact me if you need advice im willing to help if poss,try not to be to mad,as im sure dad will be ok in the end.My age is 51 now but 48 when it all started.How olds your dad? All the best luck hope all can go as well as excpected,all my love Chris .x
Many thanks your prompt reply! Sorry to hear that you have been through the battlefield with this horrible disease and Im mighty sure that you have kicked it now. I really would appreciate it if your tell me what to expect. Surgery is booked for the 25th in Ireland. I am living in Greece and when he went through his chemo and radio I took six weeks off work to be there for support for both my parents. Dad is 66 but healthy and fit. I have been on this site this morning trying to get information.. Also I have asked his consultant to email his diagnosis and results so that I can get a second opinion. I do have a friend of a friend who specialises in head and neck cancer here. (don't think the doc liked that but hey, tough luck) I think a second opinion can't hurt us. Again, Chis if you could give me a brief description of whats ahead would really appreciate it.
Glad you are feeling well.
The actual op is not to bad it involves making an airway in the neck called a stoma,the first 4 days (approx ) involves having a tube in the neck to keep the stoma open until it has healed and formed properly,during this time he will experience mucus build up that is removed by nurse by suction but is just like a normal person sneezing and coughing . Once the tube has been removed he will feel 100 times better and will wear a special bib that covers the stoma to act as a filter and protector. He will now be able to breath a lot easier and when he coughs or sneezes he covers the stoma with a tissue to catch it, he will know when they are coming as its just like the normal coughing/sneezing feeling. When he is having the op they fit a speech valve in wind pipe,this will be used later as a way of speaking if all goes well,it is a very small device.He will not be able to drink ( or eat i think ) until 7/10 days when he will have a swallow test,this involves drinking a coloured liquid,if all has healed up and no coloured water can be seen by looking in the stoma he will be able to eat and drink,if it leaks out he will have to wait a little longer until it heals.Once he has passed the test then he is a free man so to speak, and can carry on as normal,except the breathing side of things.
There are sticky base plates that can be stuck down around the stoma site which allows filters ( heat exchangers ) to be fitted instead of the bib, there are several sorts that let more or less air flow through. These filters are better as it helps the lungs to behave more normal because without them its just cold air going down windpipe into lungs so they regulate the flow. He will get fluids and food via a tube that goes down the nasal passage into the digestive system until he has passed swallow test, but i was fed etc via a tube in stomach as it was already in situ due to previous operations ( i still use it now for liquid food supplements as i cannot eat only drink) Sometimes they use a nebuliser to help break the mucus up a bit in the early healing stages.
My stay in hospital was about 16 days,but i did get a stomach bug (nobodys fault)so had to wait for that to clear up.I think the norm is about 2 weeks depending on how he heals up.He will soon get into his own pattern and lead a near normal life,so it not as bad as it seems to begin with. I was 49 when i had it done that was 2 years ago and have never regreted having it done mainly for family life etc. So i am living proof that there is life after cancer,its been a battle but worth it. I hope this help i hope i have covered most things if not please contact me again.In the meantime i wish you and your family all the best and hope things turn out well for your dad,Cheers for now Chris.x
Many thanks Chris for your reply. We are all still a little in shock and finding it hard to take the news in. I am sure that the operation will be a success and six months down the road, like you, I hope that he also will resume his normal life.
Your information has really helped but just one question, you say above that you use the tube for liquid food supplements. Is that the case for everybody after the operation. Are solids a part of the past?
Thanks again Chris and wish you all the best!!
Hiya Sinead,,No its not the end for normal eating, your dad should be able to eat like yourself although he will lose some sense of smell and taste due to not breathing through the nose.Im glad i have helped,even just a little.It can be hard explaining things in text.like the photo on your profile page.All the best Chrisx
Thanks for the reply. Yip a long road ahead, but I guess we will beat this thing. Normally I am a really positive person, but I took this bad. The reason so, is Dad is also normally positive but he is just so quiet at the moment and down. We got the news Wed night last week and I moped around the house until today!! I went back to work today and I feel better for that. I will take some unpaid leave and head home to Ireland next week. I want to be there for support and to get the positivity ball rolling again.
I am sure I will torment everybody with my millions of questions in the future, but until then, thanks again for the information.
Hi Sinead, yes indeed positive thinking is a must ,it helps that i am an optimist and that has what has helped me through the last 4 and a half years. No operation is thing to look forward as i i have one on Monday to look forward to, its not to do with my laryngectomy,its to rebuild my lower jaw. so i know what he and you are going through,leaving you with positive thoughts,Chris
Well Chis, you have been though a lot, so I wish you all the best on Monday!! I am sure your positive regime will be in your favour!! Speedy recovery, and lets talk soon!!
All my best wishes,
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?