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I am new to this forum and just wanted a little bit of advice for my husband. He was diagnosed with a T1 cancer on his tongue this January, he's 41 and has never smoked and barely drinks. He has already had an operation to remove part of his tongue and 80 (!) lymph nodes from his neck. He's recovering really well.
I just want to help him find an easy way to exercise, as (along with the other post operative problems) he has a very stiff shoulder. Does anyone recommend yoga? I know we should ask his consultant all these types of questions, but we often forget all the useful questions until we come out of the appointment!
Everyone on this forum is so brave and it is helpful to read all your discussions. I sometimes feel a bit helpless as the carer, as my husband is so stoic and I want to be brave for him. Hopefully we can gradually get back to normality. Today he has has some good news about the lymph nodes taken out of his neck, the cancer doesn't seem to have spread, so we are very relieved.
My husband had similar surgery over Christmas, and had a visit from a physiotherapist before discharge from hospital. She checked his range of movement, and had he had any problems with his range of movement, she would have given advice on exercises. Ask for a referral to a physio if you missed out on this. Your specialist nurse should be able to sort this out for you, if the time you have with your consultant is taken up with other matters.
My husband's lymph nodes did show signs of spread, so he's up for 7 weeks of radiotherapy starting next week; also the tumour in his tongue was of a larger and more aggressively spreading variety, so we are being treated to the 'belt and braces' approach of surgery plus 'access all areas' RT ie neck both sides and tongue too!
All best wishes and do keep in touch. We are here for the long haul, as the check ups go on for 5 years.
I have been through some very low times, especially when the consultant told us 2 lymph nodes had cancer cells in them, but the prospects for a full recovery after the RT are still very good.
My husband has never smoked, and barely drinks - he was only 48. Apparently, there is a sharp increase in so-called 'low risk' patients like him getting oral cancer, and no one knows for sure yet quite why. It's a real beggar though eh?
Thanks for your reply, we will certainly find out what physio can be offered, My husband walked to the school to pick up the kids today (I was stuck on the train, blast public transport!) and said his shoulder was really playing up.
It is good to chat with someone who knows what I am talking about. Friends are great, but they really don't know what we have been going through. Xmas 2009 wasn't the greatest, but you have to keep things as normal as possible for the children. I also find that some people have avoided us for a while, a guess they don't know what to say.
My aunt was waiting for the results about her lymph nodes and the results weren't so good for her, her breast cancer has spread. She had cancer of the cervix and had got the all clear and then 1 month later discovered the breast cancer. She's in my thoughts constantly...
I will certainly keep in touch, please contact me whenever you want a chat, it helps, especially when you are a bit down (so does playing the radio really loud in the car and singing along, but maybe that's just me...annoys the kids though!)
If you have a partial or selective neck dissection, you only have a few lymph nodes in the area removed.
There are different types of modified radical neck dissection. Your surgeon may just remove most of the lymph nodes between your jawbone and collarbone on one side of your neck. Or they may also remove one or more of the following structures
If you have a radical neck dissection, your surgeon will remove nearly all of the nodes on one side of your neck, as well as all of the sternocleidomastoid muscle and nerve tissue, and the internal jugular vein.
Sometimes a neck dissection operation is needed to give the best chance of stopping the cancer from spreading or coming back. But there can be side effects. These will depend on which structures in the area have been damaged or removed during the surgery.
The accessory nerve controls shoulder movement, so if it is removed, your shoulder will be stiffer and more difficult to move. If you have a partial or modified neck dissection, the weakness in your arm usually lasts only a few months. But if you have your accessory nerve removed during a radical neck dissection, the damage is permanent. Your doctor will refer you to a physiotherapist, who will show you some exercises to help improve the movement in your neck and shoulder. It is important that you do these exercises regularly.
If you still have problems with pain and movement a year after surgery, despite doing your exercises, your doctor may look into whether a further operation to reconstruct some of the muscles might help. But this will not be suitable for everyone.
Removing all of your sternocleidomastoid muscle will make your neck look thinner and sunken on that side.
Other common side effects of any neck dissection are caused by damage to some of the nerves that go to the head and neck area. They include
Taken from: http://www.cancerhelp.org.uk/
Thank you for the useful information I will pass it onto my husband. He isn't so keen on joining a forum, although I think it would be helpful for him. Then again he still hasn't got into Facebook either, which I find really interesting especially when old primary school friends have been in touch!
Is it tomorrow that your husband starts his radiotherapy? I will be thinking of you. Does he have far to travel for his treatment?
Maybe I should also stop singing infront of the kids, they are probably cringing in the back. I have been a bit crazy (my mother thinks I am mad!!) and have booked tickets for The Stranglers at the London Apollo for my 11 year old son's birthday present. I've grown very close to my eldest son at the moment as I thnk he has found everything that is going on with Daddy a bit scarey and doesn't know how to react around him. So its good to find an outlet to let of steam now and again.
take care, all the best
Dear Andi, I am not sure that forums are a 'bloke' thing always. I am a keen member here and on the Depression Alliance's online support forum, and we always seem to have a shortage of chaps. RT starts on Thursday and goes on for 35 sessions (gulp). It's really convenient as the Berkshire Cancer Centre is not too far away. For the surgery, we had to go to Oxford which was very difficult as over Christmas the snow caused no end of travel problems.
I loved the Stranglers first time out, and I hope you have a great time. Hubby uses Bruce Springsteen for inspiration (do you know the song No Surrender?). I sing along to all sorts in the car - currently sentimental old songs from the BBC drama Pennies from Heaven.
You take care, and keep in touch! Cathy XXX
I have been a bit silent of late, but have been thinking of you all. How are things? It must be tiring for both of you to travel for the RT, hope you are getting lots of support from the people around you.
My eldest son had his 11th birthday on the 14th, yes I was in hospital having a romantic c section 11 years ago (a glass of fizz and some flowers wld have been better), seems like yesterday. Took a nice group of 11 year old boys to Laserquest and then to Pizza Hut, they seem so grown up compared to the 7 year olds we had for a sleeper over last night. We are really trying to keep the boys social life as normal as possible. The eldest has had a bad time crying a lot at night and worrying about dying! Then again I think I was a bit melodramatic at 11.
Currently at work getting to grips with Reference Manager 12. Am I right in thinking you are involved in the medical field as a writer? I am a librarian by trade and am currently working in research at SGUL, doing systematic reviews on macular degeneration, another horrid disease, hope I am doing some good.
My husband is hoping to go back to work on Monday, I am a bit worried he is going to get really tired as the surgery as only 3 weeks ago!
take care, Refman beckons
Dear Andi, it was very nice to hear from you. We are totally exhausted and only 5 sessions of RT have been completed - just 25 to go...tee hee (not). Luckily, we are calling on friends/work colleagues and the local taxi company to help on the days we are both too tired to drive to the hospital, and that is working well, though I thought we might last out a bit longer...before reaching this stage!
My husband's surgery was much more extensive than yours - nonetheless, a staged return to work might be worth considering, if you have an occupational health dept to advise on such matters. Three weeks doesn't sound very long for all the healing involved to have got well under way. Just a thought. I can't see Mike getting back to his original workload (which was 4 days a week) for a long time. The consultant said think about June. RT is very physically taxing of course on top of the surgery itself - and the last session is on 24 March.
I am a health writer, and have published a 'best-selling in its field' book called The Scientific Basis of Oral Health Education. It was therefore somewhat ironic that my husband would be diagnosed with oral cancer, despite having none of the risk factors! I publish articles and features as well, for Glaxo SmithKline on a commercial basis, and for health charities on a voluntary basis. My last feature was on suicidal feelings for Action for ME - not sure if I mentioned that before. I keep up with systematic reviews published by the Cochrane Collaboration, so I have an inkling of how difficult your task must be. Good luck with it - I do admire your skills.
Take care. Cathy XXX
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