After 4 years of being told the lump on my Parotid gland was "harmless" and "nothing to worry about", a different Consultant insisted I have surgery to remove it. I was later told it was an "Adenoid Cystic Carcinoma." A rare malignant cancer. There is no Chemo that can treat it so I am just about to commence 6 weeks of radiotherapy at the Royal Marsden.
The doctors and various specialists have told me the awful side effects I can expect. I have been very naughty and have spent hours on the internet researching this cancer and it appears that it will very possibly kill me in the next 10 - 15 years with or without radiotherapy. I am now questioning if the radiotherapy will be any use to me. Can anyone give me advice?
Hi,chrisuk1, Sorry to read you are in this position. We all say stay off Google, however it is very hard not to, I think everyone has a look from time to time when things are worrying them. The problem with the internet, it has so much information on it, that is incorrect and not medically proven. The only advice I could give you is, ask your team about it, and tell them what is on your mind. All the best.
I can't give you advice as such, but please bear in mind what our consultant told us, namely that such statistics are by their nature out of date and not necessarily guidance to future survival rates. The % of people who survive 15 years is of course calculated based on people who were treated 15 years ago, and treatments have moved on, and will move on further in the next few years. Plus for rare cancers the sample sizes on which they base the statistics are very small.
My husband had radiotherapy for his tongue cancer (post surgery) as they were concerned that the margin was smaller than they would have liked, and one lymph node had been affected. It was not a nice process, but 4 years later he is still here - if you read the stats, the 5 year survival rate would only be 47% for the stage and type that he had.
One of the good aspects of the NHS (compared with private healthcare systems) is that they count their pennies, and only tend to recommend treatments which they really think will be beneficial. So personally if they are advising RT I would ignore the stats on the web and listen to them.
what an awful situation to find yourself in.
Have you had a PET/CT to see whether there is in fact any residual disease?
I would be asking my oncologist (not my surgeon) how radiosensitive Is the cancer? Some cancers respond well some don’t. He/she should be aware of the most up to date information.
There was a post here, I think, or in somebody’s bio who had a recurrence if his squamous cell and was told that while immunotherapy might well help him NICE obliged his doctors to give him ordinary chemotherapy first which they knew was going to be ineffective. Beggars belief.
SCC I’ve been informed by my oncologist is not chemo sensitive but the chemo potentates the effect of the radiotherapy
So you see there are many ways of approaching the problem
On a good note I have a friend who had the exact same cancer in 1997 and he is alive and well to this day
Thank you everyone for your posts. They have been very helpful.
According to my Consultant the whole tumour has been removed and the radiotherapy is purely to mop up any cells that may be lurking around. I questioned the effectiveness of radiotherapy against this type of cancer with the doctors at the Royal Marsden and was told it will increase my chances by 10%. Because I am an old cynic I immediately thought that means there is a 90% chance the radiotherapy will be a complete waste of time! Nonetheless I have decided to go ahead with the treatment and risk the awful side effects I have been promised I will get! At least I will know I have given it my best shot.
In the meantime I have lodged an official complaint against my local hospital for misdiagnosing me for so many years and I have also consulted solicitors. Yes I am very angry.
So upset for you.
I am medically qualified, a vet.
When I found my cancer I knew immediately what it was.
My GP was unconvinced he could even see anything but as we are fellow professionals I got my referral.
Even my MaxFac surgeon wasn’t convinced but did get me an MRI. The rest is history and the thing was caught in its infancy.
Getting a correct diagnosis can be a minefield that only the savvy can negotiate at times and it shouldn’t be that way.
I wish you a manageable time and a speedy recovery.
RT is hard but it’s doable.
Come back here when you need help. We’re all old lags at shortcuts to well being and expert at pain relief. Don’t suffer in silence.
You have had some good advice about your original post, but I would like to add one thing. Your 10%/90% thoughts are rather wide of the mark in terms of how the numbers are actually used. If radiotherapy is going to increase your chances by 10%, then what they are saying is that if you had a 50% chance without radiotherapy, then with it you would have a 55% chance. The difference may not sound much, but if you are one of those 5 in 100 then it means a great deal! It is certainly not a waste of time, because you can never predict the outcome till it happens, so to pass up the opportunity to improve your chances would be shooting yourself in the foot, I think.
Also, statistics are a very dangerous tool, because we have no idea how they were set up. If you see a 5-year survival rate for a cancer, you don't know the sample size, the relative proportions of patients who were diagnosed at which stage, or the number of people who did not reach the 5-year mark who died from the cancer, as opposed to other causes.
For my cancer, for example, the statistics would all depend on how I phrased the search. If I looked for 'head and neck cancers', the rate is approximately 50%. This would include people of all ages, people who had all kinds of cancers, and people who had been diagnosed at anything from stage 1 to stage 4. Actually, for my specific cancer (HPV+ tonsil cancer) the 5-year rate is around 90%, so hugely different even though it still includes all the people who were diagnosed late, and who died of other causes.
This is why google is such a dangerous thing, because it is virtually impossible to find the context for the figures that you see.
All that being said, I feel that you have made the right choice for trying everything. I do hope that it all works out for you, and that you can use this experience as a way of educating the doctors so that they will not make the same mistake again.
You are quite right, it's very easy to get hung up on statistics when you are told you have this awful disease and as you say, they can be interpreted in many different ways.
I am not expecting an apology from my hospital as that would be an admission of guilt and after reading several stories in the press, the medical world are never too keen to do that. What I am hoping is that the next person who turns up with a lump on the Parotid gland will be investigated more thoroughly.
Thank you Beesuit. I'm sure I'll manage ok but at the moment I'm still in the depression/angry stage. When I first saw the Consultant at my local hospital 4 years ago he told me not to worry because "most" lumps on the Parotid are harmless. In hindsight I guess the word "most" should have rung alarm bells. I probably should have asked for a second opinion but we tend to trust our doctors and I naturally assumed he knew best. Another lesson learned.
Hi chris thins is Hazsl aka RadioactiveRaz I am now one year post radiotherapy for tonsil cancer with several affected lymph nodes . I am a wimp I cry at a broken fingernail but last year age 61 I did 35 radiotherapy sessions and 2 chemo .i a, still here to tell the tale ok it’s hard but as Beesuit aid it’s doae le . I too git 2 wrong diagnosis ok mine didn’t have a time ago it was 3 diagnostics within 3 weeks I went from latent Tb to half my tongue will be cut out quite a brutal consultation to start with. To at biopsy stage being gently told it was my tonsil with h p b 16+ virus .
yes like someone else said google is dangerous if yiu just out in a generic head and cancer survival status for tonsil cancer you get less than 50% survival in 5 years. It was only when I had a chat with my oncologist who gave me the figure 90%+ok I may walk out of the door tomorrow and get hit by the proverbial bus so I ain’t worrying about survival it’s take one day at a time. Baby steps is used a lot in her please don’t get down come on her someone will always get back to you. .
i have a blog www.radioactiveraz.wordpress.xom where I give a honest account if my last 18 months pop by and give it a read .
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com
i give a honest account of my experiences with tonsil cancer
T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions. Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can .Onwards and upwards to infinity and beyond.
Blog is .com not xom
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