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Quality of life after a total Glossectomy with Laryngectomy
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posted
My Dad was diagnosed with a malignant tumour at the base of his tongue in April 2008. He had chemo and radio therapy, and was given the all clear in February of this year (2009). However in June he started getting a sore throat again and had problems swallowing. After nearly 5 months of scans and check-ups they finally discovered the mass that was causing the problems and, yes, it was another tumour...or more likely the same one grown back because it had never entirely gone. He had laser surgery a week or so later but they were unable to remove all of the diseased tissue. The next step was a partial Glossectomy and neck disection to remove the lymph nodes on the left side. Two days later (Wed 16th Dec 09) we were informed that the tumour is more aggressive than they had thought and was travelling along the nerves in his tongue and around the wall of his throat. They offered him two options; a total Glossectomy with Laryngectomy or pallative care until he dies an awful death in weeks/months. In my mind there is only one option...I cannot imagine a life without my Dad! I have been trying ever since to talk to someone who has had the same surgery. I would really like for someone to visit my Dad to give him advice and hope. The surgeon was quite positive that the surgery would work, cure the cancer and that Dad would be able to live a relatively normal life afterwards; however the speech therapist was the complete opposite, basically telling us that dad will be lucky to ever leave the hospital and if he does he'll have little or no quality of life. Is there anyone out there who can help??
 
Posts: 4 | Location: Greater London | Registered: 18 December 2009Reply With QuoteReport This Post
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The speech therapist is a total cretin. Who to believe - a consultant surgeon who has vast experience of this treatment or a speech therapist.
Bin the therapist.
Life won't be easy afterwards but your dad will have aquality of life worth living.

tony k
 
Posts: 205 | Location: leicester | Registered: 25 May 2006Reply With QuoteReport This Post
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Thank you Tony. I agree about binning the speech therapist, I have already started looking into other options and have got the name of the head of the department. I could not believe she was being so negative immediately after Dad signed the consent forms! Thankfully I spoke to her before she went anywhere near my Dad and told her not to go anywhere near him!
 
Posts: 4 | Location: Greater London | Registered: 18 December 2009Reply With QuoteReport This Post
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hi, so sorry to hear about you dads problems. My mom has a cancer of the tonsil and tongue. they have treated her with radio and chemo, and have suggested that if this does not work they will then go onto surgery.

I just wondered if when they do the operation on your dads tongue they will give him radio again afterwards, as my moms oncologist has suggested that they can only use radiation once.

Also they have said they will scan mom in Feb to see if the cancer has gone. Im quite worried waiting in the interim, I just want to know she will be ok. So I was wondering why it took so long to give your dad the all clear. I hope they wont leave us for 9 months.

Oliver.
 
Posts: 79 | Location: West Midlands | Registered: 09 September 2009Reply With QuoteReport This Post
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Oliver,

Dad had one course of radio and one course of chemotherapy concurrently. They have told him that he cannot have any more radiotherapy as it is so damaging to the healthy tissue, that is why they operated on Monday and want to do the total Glossectomy and Laryngectomy ASAP. With regards to taking so long to give the all clear, that is because it takes time for the treatments to work, then they need to do a number of tests before they can give the all clear. The problem was, with Dad, they gave the all clear when it actually wasn't. They think there were a few cells left over which just grew back twice as aggressively, leaving surgery as the only option. I hope your Mum recovers well from the treatment. One thing I will say though is, speak to your Drs...hassle them even, because they are never forthcoming with information!

Katy
 
Posts: 4 | Location: Greater London | Registered: 18 December 2009Reply With QuoteReport This Post
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Hi Katy

Well we have been to the hospital today, the want to send her for a PET-CT scan in Feb, to find out if its worked.

I our case the oncologist has been very open, however while this is good, he can scare you half to death at times.

I hope your dad gets through his surgery ok. I hope my mom does not have to have any more surgery. Its a vile feeling seeing your parent in a hospital bed. My mom was in for two weeks, and every day it seemed something else went wrong, I had used to dread waking up. Its a traumatic time, and I have found the last 3 months somewhat of a nightmare, but there is always hope at the end of the tunnel, so dont give up!

Have the doctors told you when he is likely to go for surgery? And I dont wish to pry too much, however are they removing his whole tongue? my mom had a tonsil cancer with what was described as minimal lesions to the tongue, what ever that means!

oliver
 
Posts: 79 | Location: West Midlands | Registered: 09 September 2009Reply With QuoteReport This Post
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I have had a total laryngectomy and total glossectomy two years ago. I feed myself with a PEG tube. I cannot eat, drink or speak but otherwise in good health. I was first diagnosed in 1992 and I have had a total of twenty operations, chemo and radiation.I have wonderful doctors and i plan on living to 100.

Like2bike65@cox.net
 
Posts: 2 | Location: Virginia,USA | Registered: 25 December 2010Reply With QuoteReport This Post
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Thank you Willie.

Just to update everyone. My Dad is doing really well so far. It's just over a year since his surgery and he is pretty much back to his old self. He was playing golf within about 2 months of being out of hospital and was off his feeding tube not long after. He was able to enjoy his surprise 60th birthday party with a few pints of Guinness and his weight is up (and steady). His wife is amazing and takes extra care when planning the menu so if it is something he cannot eat normally it is always something that she can blitz up. He still has no form of speech at this stage but the Drs are hoping to try something soon, now that the wounds are all fully healed! If not, there's always lip reading and the writing board! Whatever gives me more time with my Dad! :0)
 
Posts: 4 | Location: Greater London | Registered: 18 December 2009Reply With QuoteReport This Post
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This is great.. your dad is a survivor.... one of our other members on RDOC (Sharifah) used to write about her laptop & i would exchange emails with her while she was in the hospital. i've only used a big box computer since the early 80s. however, i ran out and bought a 10 inch laptop before my surgery and used it extensively in the hospital when i couldn't talk. i used it to communicate with my doctors, nurses, wife at my bedside. i also stayed in touch with friends and news over the internet. the hospital was wired.

so i would highly recommend you get your dad on a laptop for ease of communication until they get something else for him.

pete228
 
Posts: 124 | Location: united states | Registered: 25 July 2007Reply With QuoteReport This Post
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I signed up for this forum mainly because you have just sent chills throughout my entire body. My father was admitted to the hospital on Dec 21st 2010. Exactly one year after your first post. He was diagnosed with Stage 4 tongue cancer and we are trying to find out as much information about it as possible. When I saw how Tonyk responded to you tears filled my eyes because that is my dad's name. . His surgery is set to take place on Feb 10th. Hearing your success story has really helped my mom and I tonight. . I'm so happy to hear he is doing well! Hope to hear from you soon =)
 
Posts: 1 | Location: New Jersey | Registered: 31 January 2011Reply With QuoteReport This Post
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