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Head and Neck Cancer Reoccurance

thairrashid
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This is my first post on this forum. My wife was diagnosd with Head and Neck Cancer, whereby it was cancer on some of her lymph nodes and her tongue. After radical surgery her tongue had to be removed and lymph nodes which were affected with camcer. Anyway this was followed by 30 bouts of Radio and 5 of Chemo.

This treatment ended end of Jan and a few months later my wife was still getting pain in her new tongue or flap. This was dismissed at the time as thrush or possible infection and everntually last week they did a CT scan and they found cancer again. Unfortunately the consultant is saying he doesnt want to operate on my wife and says the options are chemo to try and reduce the tumour growth, drugs trials or do mothing and you have 4 months to live.

My wiffe is 48 never smoked or drank. I am not prepared to give up on her and would like to hear from anyone else with options available, I did say why can't you operate again he stated it was too much to put my wife through again, so rather than what let her die not an option with young children.

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    Hi there thair

    i sorry to hear about your wife and the concern it's causing you

    i also had a head a neck tongue cance which only lodged itself in my neck lymph nodes, I am now 3 years in remission

    however after 30 Tomotherapy and 6 chemo session, within a week of finishing treatment I devolved a lump on the toungue and had to go through a biopsy and testing again

    i also never drank or smoked and I was 50 when I went through and played a lot of sport.

    although not as severe as your wife's I know it's a real set back having gone through the initial treatment

    although I kept all of my tongue, the pain soreness and discomfort I suffered was unbareable, so your wife must be going through a lot more and I can understand the doctor not wanting to do anything at this point, although this does not help you

    hang in there with your medical team, I assume that you wife has a peg inserted .... just make sure she keeps drinking those fortified drinks ..... I lost 3.5 stone in 6 weeks so having to prolong treatment must be hard for your wife

    have the doctors told you that expectation is 4 months?

    im sorry that I have not had any magic words to make things better for you, there are many people on here who can offer you words of advice and support at anytime of day on here ..... so whenever you feel the need .... come and talk to us

    i wish you and your wife all the best and please let us know how you get on

    vatch

     

  • Offline in reply to Vatch
    Well the surgeon told us if you do nothing then it's 4 to 5 months however if you have clinical trials it depends. I also understand a second round of chemo could be an option. I've now asked to see the oncologist who can talk about second line treatment.
  • Offline in reply to Vatch

    Vatch What the consultant had said was that if we do nothing then expect 4-5 months however trials drugs is one option and maybe chemo. I have also now made an appointment with the oncologist and see what he says in regards to additional chemo treatment before trying trial drugs.

  • Offline in reply to thairrashid

    Thair

    im sorry to hear that

    obviously more will become cleaer when you have had the meeting with your oncologist ...... you have some options so try to stay positive

    it must be physically and mentally draining for you wife to have to face this again so close to just coming out of treatment and you two trying to support and keep things going to

    its important, during this time, that you don't forget about looking after yourself too as your wife will need emmense support from you again, coupled with running a family, job and yourself

    we are not only here to help and advise on your wife's situation, but for you too .... so if you feel the need to lash out and talk about you, then do so .... although a lot of us blokes just tend to ignore what we are going through and just get on with stuff .... but us blokes are on human and not super human

    when I went through my cancer I could do very little for mys

  • Offline in reply to Vatch
    Vatch I agree as I am not only taking care of my wife and our 2 children, I have to try and look after myself. What I still find quite intriguing is that why the hospital disregarded the pain in her mouth and put it down to radical surgery followed by radio and chemo. Whilst to an untrained individual it may come across as this, you do not expect professionals to come to the same conclusion, I certainly warrant that they should have carried out a scan much sooner (6 weeks sooner). But tomorrow we will see the oncologist and hopefully he will give us some options which we can give proper consideration to. Its been more than 12 months that my wife first started getting the symptoms of the cancer which were ignored by the GP and Dentist for 3 months and this time the hospital which is equipped to detect failed to do so.
  • Offline in reply to thairrashid
    Well today we had a meeting this morning with the Oncologist in respect of looking at other treatments options as well as the London Marsden Clinical Trials. The oncologist was a bit more positive in respect of that he stated London is possibly not the only option as I stated we don't want to go down the road and get told Marsden cannot help us. I did also discuss alternative treatments in Birmingham and he said whilst he believes London maybe a better option he is not entirely sure if the treatment have in currently in place wil be successful due to the nature of the tumour. However, it dawned on me that this is not really a reoccurrence this is the same cancer as it is in the same place and on her new tongue, which means they must have left some blood supply when dissecting the original tongue. Later on this week or next we are due to see the reoccurrence team at QE and we can look into alternative chemo see if this will help. At this stage I think we want to explore all options and who knows maybe the treatment could be successful me and my wife are keeping a positive attitude as I said in the hospital for the sake of the young children we have.
  • Offline in reply to thairrashid

    Hi I'm new to the forum and have just read your posts. I am so sorry to hear about your wife and I hope you've had a good treatment plan put in place. I had a double flap reconstruction followed by chemoradiation and the surgeons were excellent. The fear of reoccurrence is always there and we depend on the experts to recognise the symptoms. it is concerning they took so long to scan your wife...even if just to put her mind at rest. I pray for your wife and young family and also you who is bearing the brunt of all this and hope that the docs can provide some level of cure that will allow your wife a long and happy life. 

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