Hi everyone! :soapbox:

I launched the RDOC Mouth Cancer web site in January 2002 to provide an additional resource for :worried: patients at the Restorative Dentistry Oncology Clinics held at St Luke�s Hospital, Bradford and at Pinderfields Hospital, Wakefield, where I provide oral care and advice before, during and after their cancer treatment. Now in January 2003 (one year later) the RDOC Mouth Cancer web site receives over 6,000 unique visitors a month! It is gratifying that so many are finding the web site useful.

I welcome patients, carers, health professionals and others to introduce themselves on this new message board. I hope it allows all of us to pose questions, help others, share ideas and opinions, and learn about other people's experiences dealing with mouth, throat and other head & neck cancers. :boxedin: Doctors may provide you with advice, but they have not personally experienced the process. Sometimes, only someone who has been there before you can give you the answer that you need.

This message board allows you to seek help from them. It is easier to face hardship when there are others who care. It allows interaction between individuals with cancer, their friends and family members who seek information and help from survivors and other carers.

I hope that individuals will come forward and participate in creating a significant support community. :yes:

My best wishes to you all.

Vinod

Hi Dr Vinod, I went to the surgeon on Monday and great news - he is able to rebuild my gum and do implants although it is going to take a while because the NHS are not funding this at the moment - so now it's just a matter of waiting, but at least it can be done!!!

Hi Shelley
Great news. Hope you don't have too long to wait. Often after cancer surgery, normal control of a denture is difficult. Dental implants will help anchor a prosthesis to allow chewing function, lip support and improved appearance. I have had some good results. The result is often compromised by the extent of surgical resection and whether the tongue is affected. When I get the time, I hope to put some of the 'anonymised' treated cases on the website so that you can see what is possible.

Went to your home page: great pics of the flood and a good laugh! Keep cheerful.

Regards

Vinod

Hi Dr Vinod,
I must say that I am really positive about the outlook and will keep you posted. Hope you signed my guestbook

Hello Dr Vinod... Thank you for your reply.
I found out today my dad goes for a scan on monday coming,not sure what the scan is all about but he is going for one!,just the thought of things getting done makes me feel a little relieved.
I read peoples messages yesterday,before i actually thought it a good idea to sign up,most of them say it's the waiting that is so hard to deal with and i agree with them,it took 2 weeks for my dads biopsy results to come back it felt like a year.
I am keeping a smile on when i am in someone elses company,keeping myself busy doing things i like,and generally just trying to not think the worst.
I was really shocked when i first came to this site,i never thought i would find a place where normal everyday people who get affected by these issues can just come and have a chat,share their experiences etc.... and to have a doctor here too.. who actually reads and replys to what us normal people put is just great.
Just the thought of other people knowing what you are talking about is comforting... I wouldnt like to think how i would feel if i was told it was me who had cancer,it's bad enough my dad having it... But somehow people seem to keep cheerful! Your all an inspiration.

Well Shelly hope u dont have to wait as long as I have ar first I had a good service fromthe dental hospital University Hosptial of wales but when I needed implants everything came to a dead stop despite ringing up and checking in the hosptial I could not get any sense out of them I have now told surgeon what has happened over a year before any appointments came through I am so disfgusted i am going private though believe me it is goin gto cost I thought there was billions being pumped in health service but not where its needed for the patient I have now writtena letter of complaint

quote:

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Originally posted by Dr Vinod K Joshi:
[qb] Hi everyone! :soapbox:

I launched the RDOC Mouth Cancer web site in January 2002 to provide an additional resource for :worried: patients at the Restorative Dentistry Oncology Clinics held at St Luke�s Hospital, Bradford and at Pinderfields Hospital, Wakefield, where I provide oral care and advice before, during and after their cancer treatment. Now in January 2003 (one year later) the RDOC Mouth Cancer web site receives over 6,000 unique visitors a month! It is gratifying that so many are finding the web site useful.

I welcome patients, carers, health professionals and others to introduce themselves on this new message board. I hope it allows all of us to pose questions, help others, share ideas and opinions, and learn about other people's experiences dealing with mouth, throat and other head & neck cancers. :boxedin: Doctors may provide you with advice, but they have not personally experienced the process. Sometimes, only someone who has been there before you can give you the answer that you need.

This message board allows you to seek help from them. It is easier to face hardship when there are others who care. It allows interaction between individuals with cancer, their friends and family members who seek information and help from survivors and other carers.

I hope that individuals will come forward and participate in creating a significant support community. :yes:

My best wishes to you all.

Vinod [/qb]

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Hi, Dr. Vinod --

I just signed on today - just learned that my mother, 87 with Alzheimers, has a large, cancerous mass extending from her soft palate and seems to be invading her voice box. She isn't in pain, although it hurts to the touch when doctor examined her yesterday.

My husband and I are stunned, but trying to fast-forward through the typical emotions after diagnosis to gather all the information we can to make a loving decision for her care. I'm her only child, have Power of Attorney for her medical decisions and am naturally, eager to get to the """best of the worst""" decisions for her treatment. Surgery is out of the question, given her age. Next step is biopsy, but they want to do general, for an hour and to insert an abdominal feeding tube in case it'll be necessary down the road whether we elect to do nothing (pain management and hospice) or do chemo/radiation.

It breaks my heart to think of putting her through such hell during the remaining months/years of her life. She doesn't know the severity of the situation, we're waiting to get all our facts before we may simply let her know what's happening. However, I'm concerned about how the information would be processed by her, perhaps scaring her more than necessary. If she had her faculties, it would be one thing, but our biggest obstacle is how to make the decision for her and how to let her know what's coming... Any advice for how to deal with cancer diagnosis with an Alzheimer's patient of her age?

Hope to hear from you and would appreciate any advice/referral to other on-line sources, etc...

Thank you for you time and for this medium of support. Also, I welcome any other member's sharing/advice, etc...

CZ

It's with real sadness I read the posting from our friend in Colorado.

What a dreadful decision to have to make.

My own mother is 93 and in residential care, and her short term memory has now totally left her. However, before she reached her current condition (and before my cancer) we had talked at length about her situation. A result of that talk is that, God forbid, I'm ever faced with the situation our American friend has, the decision has been for me, namely """No treatment, let me go with dignity""".

Mind you, my mother's so healthy physically there's a chance she'll be at my funeral.

I only hope ther's someone out there who can offer our friends some practical advice, all I have to offer are my prayers.

Hello Colorado

I am sorry to hear about your mother.

To establish a diagnosis of cancer, a biopsy is definitive. Usually this is done under a local anaesthesia. However, Alzheimer�s makes cooperation difficult. Oral sedation and IV sedation are hugely unpredictable. So, you'd probably be looking at general anaesthesia, but then again, that can tend to worsen the Alzheimer's (so some anaesthetists say anyway). The GA would also allow a PEG to be placed to allow enteral feeding. But would your mother cooperate sufficiently for it all to work effectively?

You also have a difficult decision to make if the diagnosis turns out to be cancer.

A cancer in the palate is often treated with surgery and followed by radiotherapy in an attempt at cure. There will be the trauma and discomfort of surgery and radiotherapy (and the mask needed she will need to wear) - it could be all be distressing to your mother especially if the Alzheimer prevents her from understand what is happening. The defect created by the surgery will require the provision of an obturator- denture to allow feeding and speech. The remaining teeth will require excellent oral hygiene if they are not to decay. Alzheimer's patients are seldom cooperative and the dental treatment will be difficult. Maintainance of oral health will be a challenge.

My advice is to seek palliative care (brachytherapy?) that shrinks the tumour if possible. Please discuss your options with the oncologist and your family doctor. The plan should be to keep your mother comfortable and pain free with as little distress as possible. Keep her happy and cheerful. Do things together, and treasure the time you have together. As feeding becomes less effective, she may get weaker but she will hopefully be comfortable.

When I see the leaves falling in autumn, I think - are the leaves just what we think they are - leaves that fall and die? Or are they just an expression of the life in the tree? Perhaps, just because we shed our bodies, the life expressed through us is not ended. Death comes to us all in one way or another and it may not be what it seems. There is a point in time and life when we all need to say our goodbyes.

Best wishes

Vinod :coffee:

Vinod I agree with all you say here. The trauma of surgery is different in that it tends to be a one off or a two off event for most individuals. Radiotherapy for about 30 treatments over 6 weeks is a different matter and might almost be likened to a daily punishment which starts out as painless, but which feels like severe treatment once it really starts to take effect

Having to deal with having a mask made and fitted and then the treatment daily whilst wearing the mask was hard enough for someone who has all brain faculties working. For someone who is confused and wary of others a difficult scenario
My own mother in 80s, but in total control at present apart from mistrusting banks!!! Much as I would want her to live as long as possible with a similar diagnoses I could not see her go through the radiotherapy treatment I had a year ago at her age without her strong desire to do so. It almost finished me off, so it is hard to comprehend how someone 30 odd years older and with Alzheimers might cope.
I would say make her as comfortable as possible, rather than put her through radiotherapy procedures that will alarm and frighten her. Do not underestimate the internal throat burning and physical pain and symptoms during and post radiotherapy. I cannot imagine how radiologists would even get cooperation from her to be perfectly still during treatment.

Just my opinion - as someone who thinks radiotherapy saved my life to live another day for now. Please remember I was a willing participant in the treatment. I understood it would be lousy.
If CZ you can get your mother to cooperate and understand what will happen then it would be worth going ahead with therapy, but otherwise treating her may be less rather than more caring. Less may be more in her case.
She is already in my prayers as are you and your husband.

This message has been edited. Last edited by: PaulineT,

Hello, Pauline, Dr. Vinod and Pikeman--

You are all so kind to take the time and effort to consider our situation with determining the right treatment (or lack thereof) for Mom.

Your insight has been most helpful in our fact-gathering phase. We will weigh our findings with our profound goal to keep her quality of life uppermost in mind with this decision, even if it will shorten it. We certainly couldn't bear to see her """terrorized""" by the docs and clincians mentally, physically, emotionally and physically at this point in her life.

Pauline and Pikeman, you are both so brave in your battles - I wish you peace and smooth transition through your respective situations and hold you all in our prayers as well.

Once again, it's lovely knowing we have caring friends across the seas! I appreciate your input more than I can express.

Take good care,

CZ

ps--We're having a beautiful, fall day here in Colorado today - bright blue skies, puffy white clouds, high of 60 - great leaf kickin, football and chili weather!

Hi CZ, I'm really sorry to hear about your mother. I lost my mum last year at the young age of 68 (she had been ill on and off for about 2 years)and this year my dad,who is now 80 has been very ill and recently had his right leg amputated. The hardest part is not being able to do anything for them, the pain and the suffering - all we can do is pray and hope that everything works out for the best. My thoughts are with you and your family.
Shelley

CZ I found it difficult to write my post above. After all you like me love your mother and want her to live well for as long as possible.

I never meant to sound harsh, but just want to say radiotherapy is an underestimated treatment. Indeed that is what my ENT consultant told the student doctors in the room at my last visit. He toled them never underestimate the severity of symptoms a patient has during and post radiotherapy. The radiotherapy Oncology Consultant told me radiation treatment for head and neck cancer patients was the most difficult of all.

Having said that I know of 2 people who had radiotherapy for prostate in January and one was like like a bouncing button and the other really suffered and was quite ill. That fits in with what I was told before starting treatment that some are much more affected than others.
I had the metallic mouth taste within 10 minutes of my first treatment some don't experience it until week 4.

I would say you know your mum, you know what her present limits are and the medical team will also have input that may make sense to you.
Good luck and whatever choices you make, having thought out the pros and cons you will be able to know you have done the best for her in her situation.

HI, Pauline Dr J etc,
I had I think 36 sessions of radiotherapy at to say it was not nice would be an understatement.
My mouth was blisterd inside and out and how I got up every day and got ready for the hospital I will never know but the strenght came from somwhere.
From time of diagnosis to operation was only a few weeks for me but had been looking on the Cancer sites because I was conviced it was Cancer.
I SEEMED to get the impression that the radiotherapy eradicate any stray cancer cells and I would be fit and well after it was over but as you know thats not the case.Maybe I am just nieve.
I will never forget going there and them forcing the mask onto my face although it was all swollen and the mask would not fit.
Well did the Radiotherapy do me any good I am not convinced .
I am glad that I CANNOT have anymore. Paul

Sorry Paul I answered this bit in the NHS thread. I agree the mask and being bolted to the table is barabaric.

I was fortunate that one radiologist used to rush in before another and lift off the mask ever so gently because my husband told her on the quiet, that I found her the best at doing the removal.
One man just used to yank it off --ouch!