Tonsil Cancer - the journey begins. HELP!

Hi and welcome. 
This is a useful thread to start with 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

And you could take a look at my blog for the order of things. 

Hi HPV 16 positive is a good thing. The tumours  respond well to treatment. I too non smoker non drinker but i got  cancer HPV  16 + This is  fastest growing  in numbers head and neck cancer steadily increasing sadly in our generation and will continue in the next generation. My grandson has had the HPV vaccine so hopefully in years ti come it will be eradicated, providing more take the vaccine but that’s for another day.  

Your hubby will be processing what’s happening p, once treatment plan is in place everythjng gets a little easier when yiu kniw what you’re dealing with. I had 35 radiotherapy sessions and 2 of planned 3 chemo. Surgery wasn’t  an option for me as the lymph nodes were too close to spinal,cord. 

my blog below will give you my timeline I did a weekly report. Younmay find it useful to show family and friends. Especially n for after treatment finished when people think we are back to normal. It takes a good while once treatment finishes but friends can think we’re over it just a forewarning. 
Yes we get stressed and yes I wasn’t always nice to my husband who did everything for me. But it was the stress of treatment so be aware. 

Any questions  just ask. 
hugs Hazel. 

Hi HB and welcome to the community.

I had the exact same diagnosis exacly 1 year ago.

Opted for both surgery to remove affected tonsils and lymph nodes folowed by 6 weeks Radio/Chemo Therapy (I wanted every treatment they had to throw at it, to get rid of it).

What to expect:

They will probably advise to have some teeth removed (wisdom teeth as wel as any not fully healthy teeth, as preventative measures). Apparently the RT affects the ability of the jawbone to heal after treatment, so they advise to remove teeth likely to be a problem in the future!

They will probably suggest fitting a PEG which is a tube into the stomach to syringe feed through, and while this sounds gross and you think will not be needed, belive me (and others here) it will be a real life saver in later weeks!

Tonsil removal and neck surgery to remove affected lymph nodes can be painful, mainly the tonsils, and mine took 3-4 weeks to recover from.

Once recovered, 6 weeks of Chemo and RT starts and although this 6 weeks can be a relatively painless part of the whole journey, the after effects AT THE END of treatment are the real deal and this is where the real recovery path starts.

Expect not to be able to eat (or drink) for weeks after treatment ( this is where the PEG comes into its own and your partner will come to depend on it to get his hydration and calories in).

Expect to lose the sense of taste (when able to eat again) for weeks following CRT. (in my opinion, one of the worse side effects of all the treatment, but it does eventually come back, so bear with it)

Expect to spend weeks in bed following treatment (no energy due to not eating) recovering and managing pain in the mouth / throat.

While all this sounds like a lot, to get through, do stay really positive knowing that this is a treatable form of cancer, you and your other half are now in the hands of excellent medical professionals and wonderful nurses who all want the best outcome for your partner, and this type of C has a great full recovery rate.

I finished treatment at the end of Jan 25 and started back at part time work in Apr 25.

Do stay in touch on these boards as there are plenty of us with years of combined experience for you to call upon as you and your hubby embark on this journey of treatment, followed by weks of recovery and recuperation.

Best wishesto you both moving forward.

MickyC

Treatment and recovery takes a different toll on every patient, some suffer less than others. 

Loss of taste and appetite are common.

Pain in the throat and mouth are difficult to deal with.

Swallowing issues.

Depression and irritability can occur.

Very dry mouth.

Poor quality sleep.

Dealing with feeding tube issues.

Lots of other issues will crop up...stick with this forum...great for help and advice.

It is essential that carers and partners take care of themselves...take some time out...enjoy a little social life...we can stand it...and need you to do it.

Hi and welcome from me.  Sorry you find yourselves here, but it is the best place to be in the circumstances.  Lots of good advice already so I will not repeat it, but look at some other aspects.  However, continue to ask questions as you go through the various stages as we all respond in different ways to treatment and recovery.

Hang onto the fact that HPV+ induced cancers are really responsive to treatment with a very high "cure" rate.  The treatment may be brutal and the recover long and often frustrating but the vast majority of us go on to have a good quality of life afterwards.  

Once you have the final diagnosis listen to your clinical team's advice, but do your own research and make your own decisions.  Often these decision will coincide with the advice given, but in making them your husband will feel in control of his journey - and that is very important.  Unfortunately the loved ones around the patient often feel very much less in control and are "only along for the ride" as they react to the changes in the patient.  As you both go through this try to hang onto this fact when things get tough for both of you and you feel powerless to help.  You will do a great job in supporting him, even though on the face of it you may feel powerless.

Advocate for yourselves and don't be scared to raise issues and ask questions.  Clinicians like a (sensible) challenge and gain a lot from an informed dialogue with patients.  It also helps them work to the best possible outcome for your husband.

Don't be scared of the drugs, especially the heavyweight painkillers.  They work well to minimise the issues and need to be take by rote.  Also don't be scared if offered a PEG or a RIG.  Both are proactive ways to help feed, hydrate and medicate him when swallow becomes difficult.

Both of you need to find ways to decompress.  If you have a Maggies, or similar, at the hospital pop in and see them.  For me it was a place where I could hang out between appointments on the days when I had chemo etc.  For my wife they were a lifesaver keeping her distracted and providing support when she was down. In turn that made my life so much better.

I hope all goes well with the appointments next week.