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Vocal cord cancer, radiotherapy worries!

Crimbosocks
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Hello,

I have recently been diagnosed as having a solitary extramedullary plasmacytoma on my vocal cords. Apparently it’s very rare! My only symptom was a hoarse voice and 18 months after the voice started to change, I had the polyp removed on 2/11/17. Following the results of the biopsy, I underwent several tests to check if the cancer was anywhere else, which thankfully it wasn’t.

I’m now due to start a course of radiotherapy and I am really, really scared! I’m 45 years old with 4 children. I’m healthy, fit and until diagnosis had nothing wrong with me. From what I’ve read, I’m going to be very ill during and following the treatment and I’m really struggling to come to terms with it. 

I’d like to know the truth as I don’t want to be shocked by the side effects. My oncologist just said I’d have a very sore throat! I’m now reading about hospitalisation and feeding tubes and am very scared. 

I’m due to have 4 weeks of 2gy a day, so 40gy in total, starting on 8/1/18. If anyone else has had the similar treatment of the same area, I’d really like to hear from you. Part of me is wondering if I should just ask to be monitored to see if they got it all out in the surgery and wait to see if it returns before going onto radiotherapy. Obviously, I don’t want to have cancer but equally, I don’t want to have the radiotherapy unless it’s 100% necessary. 

Help and advice gratefully received.

  • Offline

    Hi Crimbosocks,

    I have myeloma and while I've had a large plasmacytoma, it was in my pelvis. I only had 10 sessions of radio but within 3 months it caused ratiation colitis which turned to sepsis and I had to have my sigmoid colon removed. I ended up wearing two bags, colostomy and mucus fistula. These will be permanent.

    I was of course made aware that there were possible side effects of radio but in retrospect I think they were glossed over as unexpected. I certainly had no notion that they would be so serious or of how common side effects occurred.

    I view a couple of cancer sites on a regular basis, one of which is cancercompass. There are loads of threads on there detailing the fairly serious effects of radiotherapy to the mouth/neck/throat area.

    I can't advise you on any decision but I would advise visiting cancercompass to read peoples' stories. No doubt you've read many explanatory sites to see what could occur, so reading peoples' stories might give you an idea of how people are actually affected.

     

    Best Regards

    Taff

  • Offline in reply to Taff

    Thanks Taff,

    Thanks for your reply, I think I’m going to go for a break in treatment and monitor the situation. I’ll have to speak to my oncologist and see what she thinks but as SEP is so rare in the vocal cords, I feel they’re just going down the ‘throw everything at it’ route of treatment. 

    I’ve read that 3/10 end up on a feeding tube during radiotherapy and 1/10 people still aren’t eating solid food 1 year post treatment. I’m not sure I’m willing to take that option without monitoring the cancer first! 

    Thanks again for your thoughts

  • Offline

    Sorry deleted wat I wrote as thought had done it in my post 

    but did want to say 

    I hope u get on ok and like u it is a worry wat to do but whatever u choose good luck 

     

  • Offline in reply to Crimbosocks

    Hi Crimbosocks, just spotted the article below which might be of interest.

    http://ascopubs.org/doi/full/10.1200/jco.2009.23.7461

     

    Regards

    Taff

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    Hi crimbo and welcome to the site

    i had throat cancer, I did not have to have the surgery but did have 30 sessions of Tomotherapy and 6 8 hour session of chemo 

    i guess though the radio therapy though is going to impact you in the same way as you mention feeding tubes

    the treatment impacts people in different ways, but we all get through it and you have come to the right place to get the information to help you through this process

    as I said our cancers are different but I am working on the basis that the treatment will impact you in the same way, I’ve therefore included my blog that detailed what I went through and gives you tips on how to get through it

    gammaraygary.wordpress.com/.../

    shout if this rings any bells with what you have been told and ask anything ... there are many of us on here to help you through all parts of this process

    vatch

  • Offline in reply to Pauline19647

    Hello,

    I'm starting RT next Monday 22/1. I’m still really worried and liken it to choosing to hit myself repeatedly on the head with a hammer!

    My treatment is in Cheltenham, a 75 minute drive from home. I’m having 40gy over 4 weeks. Hoping it doesn’t affect my salivary glands too much. I’ll let you know how I get on.

    Good luck with your treatment.

  • Offline in reply to Crimbosocks

    Hi crimbo

    Radiotherapy is fine at the start and it’s a progressive treatment

    after every treatment make sure you moisturise the area with a a water based product E45 will do the trick and don’t use a lotion .. stick to the lard type substance

    are you having a feeding tube?

    vatch

  • Offline in reply to Vatch

    Hello,

    I do not have a fixed feeding tube but have been told that a number of patients will have a nasal tube by the end of treatment.

    i go back Friday to see my completed plan and will them know what parts of me are going to be zapped by how much. It really feels like a severe case of self harming! I deliver a seemingly fit, active and healthy 46 year old on Monday and they are going to break me over a number of weeks and it’s a lottery as to whether I’ll ever get back to being myself! 

    I hope for the future generations that there is a better treatment and proton therapy becomes the norm becasue RT is frankly barbaric.

    Thanks for your blog, glad you’re getting back to being you.

    Regards,

    Crimbosocks

  • Offline in reply to Taff

    Thanks Taff,

    this was the first example of my type of cancer that I saw online and it gave me a lot of hope. I have to get through the RT but there is a good prognosis if I can recover from that.

    take care,

    Crimbosocks

  • Offline in reply to Crimbosocks
    Crimbo The treatment is a difficult one, but we get through it I was a very healthy and fit guy of 52, I played football, squash and golf and did not smoke before i got throat cancer. as you can see from my blog, yes it does hit you, but you recover, it takes a bit longer at our age, but you do get better, but its slow improvement I have discussed the differing types of radiotherapy in my blog and dependent on what you have will depend on how quickly you recover and what the impact is. I know its all scary but education of what you about to enter will slightly dampen the fear, and regardless of how much i now inform you of what you are about to go through, and how prepared you think you are ... cancer treatment is different for everyone ... we have no option but to get on the treatment roll-a-coaster and take the ride. I am assuming that your medical team will advise you that at some point during your treatment, that your throat will become sore and that your swallow function could become impaired and tender. Its important to keep the weight on and most of the time they give you fortified drinks to add the calories If your treatment is taking you in this direction I would discuss the possibility of having a feeding tube post treatment. It sounds horrible but it saved my life and those who i went through treatment, who refused a stomach inserted feeding tube, who then had to have a nasal tube inserted, said that having the tube inserted at a time when there is a lot of trauma and soreness in the throat, was not a pleasant experience i can only talk from my own experience and first hand accounts of those i met and befriended during my treatment. Others on here may be able to offer more exact advice if the have been through like treatment. Ultimately you will get back to normal, but it will take time. You just have to accept it and give your body chance to regenerate in its own way Hopefully i have not put the fear of God into you, that was not my intention Shout if you want to know anything else Vatch

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