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Picture of Dawn S
Posted
Hi,

My name is Dawn, in August 2008 I had been troubled with what was thought to be a mouth ulcer on my top jaw, which was causing severe toothache, so I visited my dentist, who extracted the tooth and put me on a course of anti-biotics and painkillers. This seemed to take care of things initially, but then whilst on holiday the following month I once again found myself in severe pain. On my return from holiday I visited my dentist again, who referred me to the dental hospital as an emergency case.

However, six weeks later I still had not received an appointment and the pain was so severe my partner took me to the A & E department of our local hospital. I thought I would be given a stronger course of anti-biotics and pain killers. You can imagine my surprise to be told that I was going to be admitted and that they would need to take a biopsy. This was Saturday evening and I was taken to surgery on Monday morning. I was discharged a couple of days later and was told to return to clinic the following Tuesday.

It was 4 weeks before I was finally diagnosed, as they had to do many tests before finding the type of cancer I had, and a week later I was re-admitted and the surgery was booked for 19th December. Fortunately, I was home on Christmas Eve.

I am just about to start a six week radiotherapy course, having had the cancer removed, along with half of my top jaw and the roof of my mouth.

I'm told that having a melanoma in my mouth is quite rare, hence the lengthy time taken over the diagnosis, and I would like to hear from anyone who has experienced a similar case.

I hope there are people out there who will be able to give me reassurance and comfort.

Thanks for reading.
 
Posts: 4 | Location: Leeds | Registered: 31 January 2009Reply With QuoteReport This Post
Picture of cookey
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Hi Dawn

i am from leeds as well.which hospital are you being treated in?Melanoma is not an oral cancer i am familiar with but it sounds as if your surgery followed the pattern of many oral cancer patients what exactly did you want to know ?
liz


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 656 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
Picture of Dr Vinod K Joshi
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Hi Dawn

Melanoma in the oral cavity is very rare. Did you have a swelling or a pigmented area in that part of the mouth? Treatments for cancers in mouth area are very similar, so you will find a lot of the posts here of relevance.

I assume that you are wearing a temporary plate in the mouth following the surgery to help with speech and feeding. Hagg had a tumour in the palate and he is "11 YEARS and still kicking it". Smiler

Best wishes
Vinod Coffee


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3346 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
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I ahve no experince with this typ eof cancer but want you to know that we all support you - this is a great group!! please continue to post and you will find so will others Smiler
 
Posts: 165 | Location: USA | Registered: 16 July 2008Reply With QuoteReport This Post
Picture of Dawn S
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Hi Cookey,

I was originally being treated at Pinderfields Hospital in Wakefield, under Mr Mizen and I saw Dr Joshi on Friday. However, I Have been to the Bexley Wing of St James' hospital for a mask making in preparation for my Radiotherapy.

I am told that it is extremely rare to have a melanoma in the mouth as it is clearly more common form of skin cancer. Therefore, I was hoping to converse with someone who has, or has had, the same type of cancer to compare experiences.

Which hospital are you being, or were being, treated at?

Dawn S
 
Posts: 4 | Location: Leeds | Registered: 31 January 2009Reply With QuoteReport This Post
Picture of Dawn S
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Hi Dr Joshi,

You may recall I saw you on Thursday at Pinderfields, where you fitted a temporary plate and gave me details of this website with the suggestion of contacting like minded people with similar experiences.

I will be seeing you in about 4 months, although it is feeling a little bit loose at the moment so it may be a little earlier.

Thanks for your help.

Dawn S
 
Posts: 4 | Location: Leeds | Registered: 31 January 2009Reply With QuoteReport This Post
Picture of cookey
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Hi Dawn

i am not a patient ,i am,or should i say was the wife of a young oral cancer patient.I am also a long retired state registered nurse.I have been a member of this forum for 2 years and am only too familiar with all the twists and turns of this pernicious disease,and have recently taken part in a research project being run by macmillan cancer research out of saint james hospital.We are hoping to establish a patient mentoring service to redress the gaps in care during and post tx,and i am happy to be a part of this.

take care
liz


Love liz

Never take your eye off the ball it may just smack you in the mouth
 
Posts: 656 | Location: Harewood West Yorkshire | Registered: 19 February 2007Reply With QuoteReport This Post
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Hi Dawn, I had SCC in my sinus and had my upper jaw and soft palate removed and 41 RT sessions. Since then I've had very successful reconstructive surgery too because the plate was doing my head in and I couldn't get on with it.
As Dr Joshi said, I'm 11 years and still kicking it so if I can be of help get in touch. Hagg.


12 years and still kicking it.
 
Posts: 781 | Location: Devon,UK | Registered: 27 March 2007Reply With QuoteReport This Post
Picture of Dawn S
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Hi Hagg,
I hope you are well, would you mind if I ask you a few questions about your reconstructive surgery, as being a young 48 year old, I'm still quite conscious about my appearance and I'm considering the possibility of undergoing a reconstruction, after my treatment has been completed.

I was wondering how long after you completed your treatment was it before you were able to have the reconstruction done, how long did the procedure take, were you in hospital a long time and has it left any facial scaring.

Thanks for reading, hope to hear you from soon.

Dawn S
 
Posts: 4 | Location: Leeds | Registered: 31 January 2009Reply With QuoteReport This Post
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Hi Dawn, I ditched the plate as soon as I could but then everytime I talked nobody could understand me. After about 18 months of that I went for the reconstructive but I guess I could have had it earlier if I'd wanted.
It's a major operation, I'm not great at explanations but they take a piece of soft tissue from under the skin above the ear, keep it attached to the head at one end (for blood supply),then thread it through the cheekbone and sew it to the mouth. At first it's soft but as it heals it turns into the roof of the mouth, toughens up and you cant even feel the seam.
The speech was back to normal as soon as I came round from the op. I had to have ten days in hospital with no solid food to stop infection and it does leave a scar up the side of the head but hair covers it up. I've got really short hair because the scars are like free inkless tattoos and my mates all tell me that 'chicks dig scars' Lol Lol Lol Big Grin.
Hope that helps a bit, I dont know what the medical term for the op was called as I prefer to be told in laymans terms but I work in the hospital I was treated in so I can always go and ask my consultant if you need more technical info. Hagg.


12 years and still kicking it.
 
Posts: 781 | Location: Devon,UK | Registered: 27 March 2007Reply With QuoteReport This Post
Picture of Dr Vinod K Joshi
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From Clinical Update, Spring 2006
quote:
Excellent Outcomes with Palate Reconstruction Surgery

The use of the temporalis muscle to fill defects in the palate left by tumor resection has produced excellent outcomes for patients undergoing head and neck reconstruction procedures at Wake Forest University Baptist Medical Center.

Having done 400 major head and neck reconstruction procedures over the past decade, J. Dale Browne, M.D., professor of otolaryngology, is one of the region’s leading experts in both the microvascular “free flap” replacement of resected bone and soft tissue and the temporalis myofascial flap for palate replacement.

Although he didn’t invent it, Browne has pioneered the use of the temporalis muscle to rebuild the palate following removal of palatal and maxillary sinus malignancies, and is one of the few surgeons in the country doing it routinely.

Surgeons who treat these problems commonly rely on a prosthetic device such as a modified denture that fills the defect created by the removal of the tumor. This approach presents multiple concerns.

The temporalis flap, done at the time of the initial surgery, can provide superior results. In a paper published in Archives of Otolaryngology Head and Neck Surgery, Browne cites results from 16 cases and reports: “Fifteen (94 percent) of 16 patients were able to resume their preoperative diets. No velopharyngeal insufficiency was encountered. All flaps survived, and none required repeated surgical intervention.” Browne has since performed over 60 of these procedures and continues to see positive results.

Along with Chris Sullivan, M.D., Browne is the surgical arm of the Multidisciplinary Head and Neck Tumor Clinic and is commonly the point of entry consultant at Wake Forest Baptist for head and neck cancer evaluation and management.

The ability to perform both the cancer resection and reconstruction of the defect is a major benefit for the patient. In addition to the temporalis muscle flap, common reconstructions performed by Browne involve the transfer of donor replacement tissue along with a feeding artery and vein. Such procedures commonly involve the use of the iliac crest, fibula, rectus abdominus muscle, and wrist/forearm skin.

Browne recalled one recent patient who had no symptoms but whose dentist noticed a bump in the roof of her mouth. Subsequent biopsy led to the diagnosis of a salivary adenocarcinoma, and she was referred to Browne. To resect the tumor, Browne had to remove about half of the patient’s hard palate, part of the soft palate, and some teeth.

Following removal of the tumor, the patient’s temporalis muscle was transferred into the mouth and used to reconstruct her hard and soft palate. Her muscle flap healed uneventfully and her new palate functions normally.

She remains free of cancer years later.

The patient, an elementary school assistant principal, is delighted with the result. “It’s been a miracle. It’s been great,” she said.

“That whole facility could not be better. They’re much more than a doctor-patient relationship. They are there to help you in any way they can. And, you know, when you’re sick and you’re a patient, that means everything to you.”


View Webcast: Oral Cancer Removal and Palate Reconstruction

This message has been edited. Last edited by: Dr Vinod K Joshi,


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3346 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
Picture of Dr Vinod K Joshi
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A study describing the issues and results involved in palatal reconstruction:
Considerations for Free-Flap Reconstruction


Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.

"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
 
Posts: 3346 | Location: St Luke's Hospital, Bradford and Pinderfields Hospital, Wakefield | Registered: 14 December 2002Reply With QuoteReport This Post
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