Hi Diagnosed today

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Hi all 

I've had my diagnosis today for squamous cell carcinoma in my neck so awaiting the start of treatment.

How long did you have to wait before start of treatment from diagnosis?

Thanks 

  • Hi Becksley

    Sorry to hear about todays diagnosis Im sure it must have been a tough day for you.

    Have you spoken to Oncologist/Cancer Nurse Specialist or Consultant about what your treatment plan involves ?

    I had 4 week wait to see my Oncologist ( at my nearest Cancer Hospital) then another 4 week before Chemo and Radiotherapy started due to the for preparation needed.

    Everyones experiences are different  and waiting times will differ.

    This is a very supportive group who will try their best to answer any questions or concerns you have..

    Debbie x

  • Sorry you find yourself here Becksley, but there are great people around who will walk you through the process. and hold your hand whenever wanted/needed.

    I was diagnosed on Oct 8th, and then had surgery on Nov 28th, followed by chemo/radiotherapy starting in mid January (ten and a half years ago now).

    It's a fairly long process, but it was always emphasised to me that it was more important to get the right treatment rather than quick treatment.

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    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Hi Debbie 

    Thanks for your reply I will be having a combination of radiotherapy and chemotherapy starting within 3 weeks hopefully.

    I meet the Oncology team next week and have to have more scans to check there has been no further spread  of the cancer .

    I was told I may need a peg for feeding and will not be able to work for a few months.My job is supporting family members who have loved ones with substance use disorders so involves talking a lot.

    I'm not sure what to expect if there will be hair loss etc and how it will impact me daily as I live alone so not good a great deal of support.

    Things are a bit up in the air at the moment but no doubt will be a new normal for me in a short while 

  • Hi Becksley,

    Its all so overwhelming at first but for most of us once treatment starts the anxieties seem to lessen.

    Have you been told if your diagnosis is HPV positive? as these SCCs react really well to chemo and radiotherapy treatment 90% cure rate

    Im sure the Oncology team will give you more information and talk you through your treatment plan etc .

    I was terrified that the cancer had spread but was assured to hear by my Oncologist and many wonderful people on this site that this is very rare. I remember feeling like a rabbit in the headlights for weeks until the day I had my mask fitted and CT scan (both so much easier than i had anticipated).

    Many of us have some variant of a feeding tube fitted as swallowing becomes painful and for some of us near impossible.I hated my PEG but  soon realised it was keeping me alive x

    Please inform your team that you live alone they can help you with transport to and from the Hospital etc. If you have good friends, colleagues or neighbours now is the time to be brave and ask for their support .

    We will also be here with you whenever you need us . This group supported me and many others  when we needed it the most x

    Debbie

  • The chemo many of us have Cisplatin,doesn't usually cause lots of Hair loss , most women find  it goes mainly from the back of the head ( I looked like Id had an undercut ) It is growing back soft and silky started a couple of months after treatment x

    Sounds like you have a very supportive role in peoples lives ,Im a Counsellor and currently still off work(5.5mths post treatment ) but everyone is different and some return to work much sooner than others.

    Off to sleep now Fingers crossed

    Debbie 

  • Thanks Debbie 

    I will not be rushing back to work want to ensure I'm fully recovered rather than going back to early to end up taking time off again. Nothing worse than having work on your back for taking time off too many times I have had them on my case already for being unwell

    Sleep well x

  • I am waiting to hear if it is HPV positive waiting for that result to come through.

    I will brave and ask for support I can be a stubborn mule but think this is a bit bigger than I can deal with alone .

    It's great to have had replies from you and others makes it so much easier when you know others have been there and understand what is happening, makes you feel less isolated x

  • Definitely, it's great to have spoken to people so quickly takes the sting out of the day .

    Unable to sleep my mind is whizzing about at the moment 

    Thanks for your reply Pray

  • How long did you have to wait before start of treatment from diagnosis?

    Hi   and welcome. Debbie and Mike have covered it well. 
    SCC in a neck lymph node is the classic presentation of HPV driven cancer. The primary  will be somewhere else, usually in your throat. It responds really well to radiotherapy and cure rates are in excess of 90%. So hold onto that. My first consultant contact was September 29 and RT started December 12. I’m here alive and well five years later. 
    The treatment is tough but it works and most of us make an uneventful recovery. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Hi Becksley, sorry you have had to join our group. It all seems to be going along well, with your team getting everything into place, and a start date for your treatment, you will be in good hands. I would always advise anyone to have a PEG or RIG fitted, if they are offered one. My RIG was a lifesaver for me, and lots of others on here would say the same, about theirs. Any questions or worries, just ask.

    Ray.