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advice as such, but please bear in mind what our consultant told us, namely that such statistics are by their nature out of date and not necessarily guidance to future survival rates.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 .
Blog is .com not xom
Thank you for your message.
I have read your blog and I found it inspiring, and if you don't mind me saying so I think you are one brave lady. Much braver than me!
Those radiation burns on your neck looked awful. Did they try and treat it? And did it help? Like you I have inquired about acupuncture for dry mouth. The hospital have put me on the waiting list. Did you think it worked at all?
I have also spent a small fortune on special mouthwashes and toothpastes for dry mouth, and "Calendula" face cream which is meant to be very good for treating radiation burns. Hope it all works!! I know the hospital can give me special tablets for dry mouth but the side effects can be quite nasty apparently. I had bowel surgery in April and the last thing I need is diarrhoea!
Well I start my 6 weeks of radiotherapy on Monday. I hope my poor little car can manage the 2 hours of travelling everyday!
Thankmyiu for your kind words , brave who me nope just decided the b......r wasn’t going to beat me so put myself into work mode treated it like a 7 week secondment! Lol nit in Every I would choose but positive mental attitude got me there.
Yes Lees st James Cancer unit were brilliant once my neck broke down in week 4 I was given polymer bandages that we adapted to fit my neck they were £74 a doll so thank god cor free prescription s the tape was £25 a doll as well I had to leave each one in until greeen ooze was coming through it smelt yucky but got told green was good so went with it. Took 4 weeks post treatment for it to clear but no limit was put on couldn’t have as many bandages as needed.
Be careful using any cream other than what your radiotherapy team advise as they know what works plus yiuve to be careful don’t use it prior to treatment as it may cook I only applied sobreseem daiky After treatment.
good luck with the drive am sure car will make it ,but are you driving yourself ? I defiantly couldn’t have driven so bravo if you are.
Any questions just ask always willing to help anyine remember positive mental attitude if I can do it anyone can .
Chris yes the acupuncture had really helped by dry mouth I have had to pay privately £30 a session as my trust don't do it .inky thing I will say Ian you have to go in with a positive attitude towards complementary therapy any doubts block your pathways or chakra my acupuncturist told me , so I lie there willing it to work or as hubbybsays hocus pocus but I don’t care
Thanks for that Hazel.
Yes I will use my cream after each treatment. I won't risk it before. It's got really good reviews from people having radiotherapy.
There will be no-one else available to drive me unfortunately. My wife works 3 days a week and has to look after her 100 year old mum for another 2 days. If the side effects get too bad I will have to go by taxi. It will cost me £70 a day so I'm praying I'll be ok.
Ouch presume hospital doesn’t have patient transport either ,I know a lady in Edinburgh who is 2 hours away in borders and they are treating her in hospital Monday to Friday out for weekends . You should be ok first few weeks I just couldn’t face the drive into Leeds every day on a bad day we were 90 mins away due to trafafix on a good day 45 mins. Will be thinking if you Monday please keep us updated .
i was a four hour round trip from my RT
what the hospital did offer was a free residential hostel on the top floor of the RT unit.
As for me, my husband was OK driving but it made the days when I was seeing my Macmillan support nurses and my oncologist’s registrar as well very long ones.
It might be worth checking that out.
Thanks Beesuit. I will enquire about that. I want to avoid patient transport if at all possible. A few years ago I had to use it when I injured my leg. You can be sitting in the minibus for hours if they had lots more people to pick up. And the same going home if you are the last to be dropped off.
Chris, my husband had to use patient transport 5 days per week for 6 weeks as I was working in Germany during the week. My employer let me stay at home for 6 weeks during surgery and immediate aftermath, but then I had to go back. His patient transport turned out to be taxis/uber drivers and he was usually on his own. I think minibuses May be a thing of the past - worth asking how they do it now in your area.
I'm being treated at the Royal Marsden in Surrey and unfortunately they appear to use minibuses. I've seen them parked outside. But I will check with them next week.
You are probably rather more urban than us, then - husband was travelling 20+ miles each way to Gloucester for the radiotherapy, and I don't think they can easily make minibus routes work in more rural areas. Good luck!
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2020
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: 668265007