I have had CIS on my vocal cord for 6 years and my most recent biopsy confirmed invasion so I now have to have treatment. I haven't had my scan as yet, but initial indications are T1a which is very early invasion and the treatment plan is 7 weeks of radiotherapy 5 days per week.
I have had the camera into my nose/throat every 3 months for the past 6 years and many many biopsies (3 in the last 18 months alone). I'm one of the lucky ones and I count my blessings every day, being under such close observation I have been caught early and for that I'm extremely grateful.
I am unusually calm, I don't feel too concerned appreciating how lucky I am to be caught at this stage. In my head I'm thinking "Ok, I've got this, count your blessings you're caught so early, what's the plan, let's get started & move on". I'm hoping to be able to continue working throughout my treatment, albeit at a reduced rate - my work is not physically taxing as I'm on a PC all day. I've read about fatigue (mind you I've been pretty shattered the past few months anyway although I'm not sure if I can relate that to the this - is it possible to be tired from it when not in treatment, I don't know), I understand you gradually start to feel more tired and get other side effects as treatment progresses but I'm also thinking I'm lucky in that I don't have to have chemo and endure a full body reaction to treatment that others do.
I've always attended my appointments on my own and am continuing to attend alone since diagnoses, I don't want to feel as though I need to rely on people but I also feel guilty as everybody wants to come with me, but I prefer to go it alone, I don't want to feel a burden.
I know everybody reacts differently to treatment, am I being naive in thinking I'll be fine throughout the treatment, that I can continue to work pretty normally, raising my family etc and attend alone?
Having been through, or going through your own journey, I would really love to hear about your experience and wish you well as you continue on.
Hi , its good to have this calm attitude as it does help cope throughout the journey , you are correct in saying that when its caught early they have a better chance of stopping the cancer , sometimes they might change the treatment plan once they see the scan results so be prepared for this . I have not had radiotherapy in this area as it was all used up after my first cancer operation in my mouth. So when the cancer returned around my larynx area my only option was surgery but they would not the extent until the opened me up , unfortunately they had to remove the voice box .Thankfully for you have been offered the radio so all should be good , you will get fatigue ,tiredness soreness during your course of radio but it varies from person to person ,plus you seem a fit 46 year old which helps , I was 48 . If I was you I would just see how you get on as I think you will need help towards the end of the course of treatment . I doubt if you will be fine all the way through and work might have to be scaled back , you should manage raising the family ok if the all chip in and help if you have a bad period, Please don't think you will be a burden as all these people want to do is help out so I would take up their offer of help when you need it , don't struggle, make this journey as easy as you can . Wishing you all the best on your scan results , take care .
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I have just read your profile, life has certainly taken you down a bumpy road yet here you are willing and able to share your experience and wishing me well - thank you, truly. I am so grateful to be at this early stage and almost feel like I don't belong on such a page given what I'm reading, I'm just trying to prepare myself for whatever might knock me I guess, so that I can be prepared to put on a stronger front as I'm not one for letting people in or know I need help and I honestly can't see that changing, much as I understand they only want to help and be there for me.
You're inspirational, I wish you continued strength, good health and thank you for being there. I don't think there is anyone out there that hasn't been affected by Cancer in some way, be it themselves, a loved one, family or friends, it's a very scary word but with inspirational people such as yourself it's a little light when needed most.
Hi S, its funny how things work out , it gives me a lot of satisfaction if I can help other people out who are going through the cancer journey as ,just the word cancer can affect people in different ways . Im like you and keep things close to my chest otherwise it can get complicated and maybe they are a bit to helpful . Of course you belong as its a cancer related question and you have concerns so please re-post if needed , take care .
I have been through the whole process, so I can let you know what to expect. I had 35 RT and 2 Chemo. Treatment finished March 2016.
They will probably offer to fit a PEG. This is in fact a tube which is fixed in the stomach and taped to your abdomen. It frightened the life out of me but I very soon got used to it. Soon after the treatment starts, you can have problems in the throat and restrictions in swallowing. The PEG allows you to feed yourself with high calory liquid food - usually ENSURE. (Don't have the strawberry, it is awful!) I was scared it would leak and imagined all sorts of internal problems. However, the way it is fitted, with a washer of sorts inside and out, it quickly welds itself and does not leak. After a week , get a nurse in Oncology to show you how to move it and clean it. After you have done it once, it is simple. This does not stop you eating normally - if you can, but if like most of us you have a throat problem then it would be very difficult to have it fixed later. So, unless a doctor advises otherwise, have a PEG.
Then there is the mask. It is moulded plastic which is heated to make it pliable and is then custom fitted. It looks like a fencing mask. It pins you to the table during RT. It is very necessary as they are working to millimeters and you have to be perfectly still. A bit claustrophobic for the first time or two but then it is not a problem. It is lattice work, so you can see through it.
I had the usual problems with chemo - a little bit of nausea and tiredness but nothing major.
As the RT progresses, some get varying degrees of nausea. Make sure you feed yourself with the Ensure. Up to 8 small cartons a day. I found I could only do a couple at a time. A chap I knew could do five at a time. You must get the calories into your system. If you can eat normally, get as much high calory sloshy food down as you can..Expect to lose weight, this is normal. I am naturally slim and weighed 75 K at the start. I went down to 64K. I am back to 71k.
The loss of taste and saliva are by far the worst. Different people have different experiences so there is no point being too negative about it. Some get taste recovery in a few months. I did not see much improvement for nearly two years. However, I am much better now. I am 76 years of age and doing almost anything I want. I have found that a cup of tea with most meals is a necessity. But I do allow myself a glass of wine or two afterward. Why not!!!
It is not the best of experiences but I kept telling myself " It is a damned sight better than the alternative!" The MacMillan nurses were fantastic and will always be there for advice and support. I was on my own and they arranged for District Nurse and Dietician visits. Very helpful.
A lot depends on what type of person you are. I have survived three cancers and I am a strong willed man. I did have my bad moments and I learned that it is best to ask for help as soon as you need it. No one will think you a wimp. They all know what you are going through and after a few months you can realise that there will be a steady improvement.
I hope this is helpful. I do not want to be negative and I feel that some idea of what awaits, is helpful. If I can help any further, please just ask.
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