Stage 2 found in soft palette. 30 doses of radiation and 2 Chemo. No saliva 11 months later. All clear in October and now back again. Radiation out of question. Surgery or not if no guarantee to kill the cancer ? Is the surgery worth life if life is hell afterwards ? Looking to hear experiences from those that have been through this and advice on the procedures and outcomes. Many thanks.
I don't know if the surgery will be the same so I hope this helps?
I had tongue cancer and I had surgery
I had my tongue and voice box completely removed and reconstructive surgery on the floor of my mouth.
I was told no guarantee it would work (something to do with margins)
Nearly 3 years on and I am still here.
It has been extremely difficult at times however I believe yes worth it as I am still here.
Please feel free to ask me anything if you think it will help
Mark, firstly, thank you for your response. Your surgery sounds more comprehensive than what is being currently suggested for my husband. His cancer is soft palette but told "serious surgery" required ??? We do not know how much tissue needs or WILL be removed for the surgeon to come out tops and have stopped this demon in its tracks. The surgeon will no doubt take more than required to stop the progression but will this lead to no quality of life ? Cancer free but also void of mental and physical ability to live ??? Would you go through these last few years in hindsight ? Would you be still alive without intervention ? What are your regrets and what questions would you ask if that crystal ball could tell you the future and the truth of what you have been through ? We are searching here for answers and the experience and knowledge of patients that are living with their procedures and how that has affected their life, not what the doctors think will be best. (They do not have to look in the mirror everyday whilst they enjoy their steak, their patients live with the reality). Being alive is worth everything unless it has so many repersusions that daily living is a nightmare ??? Not in your case but this is our major fear. Thank you again.
If I had not had the surgery I would not be here to write this now
I was offered surgery or palliative care.
I am not going to lie and say it has been easy,it has been a long road to recovery.
I still get tired quite easily and the nature of my surgery I tend to suffer with a lot of chest infection.
And I still have some aches and pains.
There are a few things I can't physically manage anymore
I can't swim (neck breather) I would drown.
I had to give up work and I had a good job,a job I loved doing.
I can't walk far before I start to cough or my leg pain starts (muscle and fat taken from top of leg to reconstruct the floor of my mouth)
If I could offer any advice it would be to take any help the hospital offer you,also get referred to the psychology department. They can help on the road to recovery.
I still have a lot of hospital appointments and I am 3 years post op in April.
Quality of life is not as bad as I first imagined when I was told about the surgery.
I get out and about when I can,even had a couple of small family holidays.
I agree it easy for surgeons and consultants to advise what is best for you,like you say it is not them living the life following surgery.
I did have a peg tube fitted as all my food was in liquid form.
I had my peg removed roughly a year after surgery.
I can manage a very soft food diet,blended or mashed to baby food consistency and I am happy enough with what I can eat (peanut butter and jam ice cream milk shakes are my current favourite)
All of my medication needs to be disolvable or liquid.
All of these seem like a small price to pay for me to be able to spend more time with my family.
Like I said it's not easy but it's not that difficult either.
So as you can see there are a lot of pro's for me and a few con's
I am pleased I am still alive
And if I had to do it again?? Absolutely,it's a no brainer for me.
My regrets are catching the awful disease in the first place.
And if I could ask a crystal ball anything it would be how long have I got left?
After my treatment ended in 2014 I had a biopsy in 2015 to determine if treatment had worked
I was told all looks good no signs of cancer.
It was 6 months later I became symptomatic again and 3 months after that I was given the choice between op or palliative care
So now I am 3 years post op every single day is a bonus for me.
I hope some of this is helpful
And please feel free to keep asking me questions
If I can help I will.
Thank you so much for such a frank and honest response. Your help is greatly appreciated and you need to stay alive and so positive for many years to come with this insight and kindness in sharing your experiences. I am moved by your comments and we are taking all on board. Options will be given to my husband next Wednesday and I am sure many more questions will follow. Thank you.
Hello, I really don't remember the last time I was here! My dentist discovered a lump in 1993. Why me? I was looking for the ones like me...This site has helped me for 15 or 20 years???
Scamous maxilar (under tongue) cancer. First radiation with iridium therapy in 1993. Very stressful but positive after 3 or 4 months.
Another place under tongue (other side) discovered year 2000. Cirurgical removal extensivly, a large cirurgie taking 9h at hospital, recovery inside the hospital 4 weeks, reconstruction of tongue, another surgery one year later to liberate the tongue... A long way (lost my job, my face was different, couldn't eat or talk properly for months) and I'm always anxious for the examination I have once a year. All teeth removed. BUT still alive and thinking. 71 years old.
Please be patient with yourselves and remember that the support of others/family is very important. On the other hand, I'm convinced (as for my problem) that stress and living in it, years, days and hours of problems, is a strong cause for these cancers and recovering. Have HOPE, take care and a good life, denying what and who is wrong according your deep feelings.
An interesting reply, I notice you comment stress and fear etc. The is especially powerful "denying what and who is wrong according your deep feelings".
Is the implication the emotional damage inflicted by others contributes to our suffering?
Strongly YES. In Portugal where I live, the knowledge of this particular kind of cancer isn't spread enough... although we have good doctors and a "medium" level of skill but no care after. I mean that I had to recover my inferior teeth device buying them for an expensive amounth, 2 years insisting and lots of appointments, I had to make my treatment at home and alone (trying to read loud to enable the construction of sounds and phrases, with lots of creams to care for my face skin and marks, make my own food... and so on). You may understand my truggle, very much on my own. Your battle is you so different against normal life, normal people, a job where I have to talk and have interaction with customers. I felt miserable.
I'm convinced that the stress I have felt, working a lot, so many hours, be ashamed of my defficient aspect, people just didn't care... made the difference.
A continuous negative state of mind has a lot to do with cancer and the revolt of cells. I think that, from my experience.
My life is limited, my dreams ended. But I am alive. That's that.
May my words be a signal for you and others.
I agree with your sentiments, I believe the break down in my own immune system started as a result of acute emotional trauma when I was young, and then my vulnerability was exposed by cancer during an especially stressful period of my (recent) adult life.
Now I take each day as it comes, happy go lucky, stress sensitive but no longer stress controlled
All the best