Hi, first timer here!

1. Hi Didi01

welcome to our small community sorry you’re found yourself here. I am Hazel aka radioactiveraz. I am 33 month post radiotherapy for tonsil cancer with several affected lymph nodes main cancer  was in my tonsillar crypt yes who knew our tonsils had crypts !! I alos  had spread  to soft palate and anterior tonsil wall. I had 35 radiotherapy and 2 out of planned 3 chemo. Best advise I can give you for now is stay off dr google you will only frighten yourself. Stick to on here. Your mind will be all over the place just as you describe up and down. There’s lots of us on here that have successfully completed treatment and are living our life’s to the max. 

By th time my treatment started I had 7 lymph nodes. 
many questions just shout one of us will get back to you. 
Hazel x

Hi Didi01

Welcome and I think we will be able to give you some reassurance as fellow H&N cancer patients or carers.

The first thing is don't Google anything.  You see the worst that was on offer by way of treatment a decade+ ago.  Things are very much improved now.  Also H&N cancers are generally very good at responding to treatment.  That treatment can be very tough, but lots make it through and see a good quality of life afterwards.  In many cases it takes some time for things to settle down and you to find your new normal.

You are in what is probably the most stressful phase now - the diagnostics.  Once you have a diagnosis and a treatment plan things will fall into place and you will move swiftly through the process.

The only bit of your areas of concern I missed out on was the throat, but I can add tonsils to your list!  After 5 lots of surgery my primary cancer remains unknown, but is probably at the base of my tongue.  I think the discounted the nasal passage early on.  I've had my lymph nodes removed along with the tonsils and 3 goes at my tongue to find it!  Something shows on the PET, but not on CT or MRI.

I've elected not to go onto radiotherapy/ chemo at this stage as there is no point without an assured target to zap.

The point of this is that everyone is slightly different, but everybody here brings a nuance to treatment pathways that will help you cope through your own pathway.

I am still here and enjoying life.  I am sure you will in a few months time

Hi Didi and a warm welcome from me too. 
I know this part of the road can be the most difficult; the waiting, the second guessing, the wild imagined consequences. 
Try to keep busy, tap your GP for some sleeping tablets to get you through on a very short term basis if you can’t sleep. 
Once you have a treatment plan in place some sense of calm and purpose returns and things become easier. 
It’s not uncommon to have a cancer in more than one place. Hazel has said hers was in her tonsil soft palate and lymph nodes. 
With the proper treatment radiotherapy and chemotherapy can take care of that so trust your team. They are good at what they do

Best of luck and please hang around and let us know how you get on. 

Hazel, many thanks for your response, it’s reassuring to see where you are now. I have stalked you a wee bit and looked at your past comments and notice that you also have a place in Spain, it was great to hear that you were able to go whilst getting treatment. I am so looking forward to going back. Thanks again.

D

Hi Peter, great to hear from you and thanks for sharing your experiences to date. The Google advice is so true! I have promised myself that I will no longer google anything but ask any questions on here!

thanks again

D

Hi Didi01 I have recently just completed treatment for base of tongue cancer which had spread to both sides of my  lymph nodes. The treatment is doable so hang in there and beat this horrible  thing . All the Best Regards Min 

Thanks Min, hope you are feeling ok after treatment and wishing you a speedy recovery. Can you give me an indication of timeframes between first consultation and treatment? 

Hi Didi01

To answer your question on treatment wait times... In many cases what seems like a delay is not really important to this cancer.  I had my diagnosis 3 days before a month long trip to the USA - which I still took (and it was the best thing I did)!  Then I had scans etc to plan treatment before the first curative surgery about 7 weeks after the diagnosis.  Generally these cancers are relatively slow in developing so time spent doing detailed planning is well worth it rather than rushing into treatment.

I assume you have a CNS (maybe a Macmillan nurse) allocated from the hospital?  Speak to them as they are normally best placed to give sensible advice on timescales and options.

Hi Didi01 Gosh that's a good question which I can say was none stop and every week there were hospital appointments . It sounds like you are smashing it at the minute with the scans etc. The needle aspiration is nothing. What you have to remember is your team needs a load of information in before they decide which route to take. You will probably have to go for a hearing test and visit the hospital dentist. You will be starting treatment once all boxes are ticked and then its full steam ahead. All the Best Regards Min