Help with treatment options

  • 10 replies
  • 85 subscribers
  • 592 views

Hi all, I recently posted to introduce myself - I was diagnosed with hpv+ SCC in my right tonsil, with a suspected lymph node that was next to the tumour and slightly enlarged. I opted for surgery first to see if the node was involved, so 2 weeks ago I had the tumour (26mm) removed with 3mm clean margins and a selective neck dissection (3 levels). The histology came back showing the neck as completely clear of cancer as well as the 3mm margins clear. This makes my diagnosis T2N0M0. My consultant has said this means I have a choice - I can either 'watch and wait' and if there is any recurrence, I will have chemoradiation, OR I can have targeted radiation to my right tonsil area only, slightly lower dose, and no chemo, just to make sure all of the cancer has gone. Consultant said outcomes are good whichever option I choose, but I am finding it so difficult to choose, especially whilst in a fair bit of pain after surgery. Has anyone else had surgery only? Or surgery and radiation? Would be very interested in hearing how you chose your treatment path. Thanks.

  • Well done in getting this far along a very scary road. 
    I had RT only for T2N0 SCC as the tumour was inaccessible via surgery. 3mm is considered an adequate margin. You always have radiotherapy to fall back on if the cancer returns. 
    If my surgeon told me he had removed all the cancer I don’t know how I’d cope  with frequent monitoring and being on tenterhooks all the time. It’s difficult isn’t it? RT is curative of HPV positive cancer and the side effects are manageable. 

    Peter aka  is in a similar position if you tap his name and look at his profile 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi Sarah. I had surgery only, no treatment. My cancer was below left tonsil, I had both removed and base of tongue, with neck dissection. My consultant said I am clear, and advised no radiotherapy, so it can be used should it ever return. I had robotic surgery twice, and I’m doing okay now. Quite a bit of pain for a while,but I’ve got through it, especially with the help of everyone on this forum. It’s a personal decision, talk it through with your doctors, you have to do what’s best for you x

  • Hi Sarah difficult decision. I couldn’t have surgery as one if my lymph nodes was too close to spinal cord. I was T2N2NM. HPV 16 positive. I had the gold standard chemo radiation 35 radiotherapy and  2 chemo.As Dani said  take a look at Peters profile and chat with your oncologist. Yes chemo radiation is a one chance offer it can’t be repeated. I don’t know what I would do in your situation you have to be comfortable in your decision. 
    I am almost 4 years post radiotherapy. If you want to tell us how old are you that could be a factor in your decision making. I was 61 when diagnosed.

    good luck 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Thanks all for your replies so far. I have just sent a message to Peter so thank you for the connection.

    My consultant basically said it depends on my appetite for risk - if I could lead my life without thinking 'what if' then I could watch and wait; OR if I am more risk averse and would constantly think I should have had the rads, then I should just go with that option for peace of mind. But it is such a tough call. On the one hand, I like the idea of 'saving' the chemoradiation for a future recurrence should it occur (hopefully not), but on the other, I like the idea of belt and braces and do everything possible to get rid of it completely.

    I am 47, fit and healthy, never had any health issues before this. I have 2 daughters aged 11 and 15, so I really want to be around for quite a lot longer if possible! 

  • Hi Debbie - would you mind telling me what stage your cancer was and how long ago? How often do they monitor you now?

  • Good evening Sarah, if the consultant is confident that it was completely clear then i would maybe think twice before having chem or radio afterwards, the only reason i had it was,A, my consultant wanted to make sure it had all been removed and B because i did not really understand about cancer and treatments as i did not belong to a forum like this back in 2008  and just wanted it gone. In my case, it returned but in a different area so i had no choice but to have further surgery, also radiotherapy can damage the skin tissues etc in that area should further surgery be needed. As Dani said you can always fall back on having radio/chemo if ever needed,i also think surgery and techniques have improved since 2008 along with the cure rate. The final choice is between you and your consultant and will always respect your decision. Wishing you all the best.

                                                                           Chris x     

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Hi Sarah. I think you’ve got to be honest with yourself re risk and are you the sort of person that can compartmentalise and not be thinking what if.Only you and with your family can come to that decision at the end though it’s your body. . If you choose chemo radiotherapy it’s not a walk in the park I was 61 and I did it.The treatment gets harder as each week goes by. Recovery can be varied in time.  I was fairly fit and healthy well apart from having a cancer I didn’t know I had. I had just cycled 1100 km in Spain. I did return ti Spain 8 weeks after treatment and did a small ride. But we are all different. I really feel for you having to make the decision. Which ever way you decide we will all help you through it.
    Hazel x. 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Sarah. Have a look at the last two pages of this thread HERE

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Yes i had surgery only..but they didn't aks me if i wanted any other treatment. But i had adenocarcinoma cancer in the nose so it might be because of that.i was confused to as before i had the  tumour  re moved i had my top theeth out ready for radiotherapy so it does happen.i don't no if this will help you..but hope all be ok for you Thumbsup

    1. Hope you don't mind me asking how long ago did you have surgery..and hope all is good with you Thumbsup