Parotid Gland Cancer

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 Hazel,

    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!

    Good luck,

    Chris

  • Hi Chris

    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 .

    Hazel

    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.

  • 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 

    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.

  • 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. 

    Best wishes 

    Chris

  • 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 .

    Hazel

    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.

  • Chris

    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. 

    Dani
    Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
    The blog is my personal cancer journey, warts and all. 

  • 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.

    Best wishes, 

    Chris 

  • 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.

  • Hi Alichapp.

    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. 

    Thank you, 

    Chris 

  • 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!