Base of Tongue Cancer

Completely agree about it is important to get calories in, and have a positive frame of mind and humor helps a lot. As far as I'm aware the difference between a T2 and T4 is the size/depth of the tumor. Hence probably why I had more damage around my neck and likely to have a corresponding amount of damage inside my throat.

Dear All

Yesterday I had another Fine Needle Ultrasound but this time on my apparent "normal" right lymph followed immediately by a one hour MRI scan on my neck which was hard work. My left lymph is the one which has been raised for months and is positive but my right lymph has been flat and normal. The radiologist took two or three samples from my right lymph as she said one node was raised - I have a cough and she said it was precautionary as they are planning my treatment and will need to over treat me as opposed to under treat me. Last night the right lymph was extremely sore and really swollen and now appears to be of a similar size to my left one. Is this to be expected as I assume it's inflamed or should I be contacting the hospital? I am a bit worried as I read that sometimes cancer can be contained within a small area and then the biopsy can cause it to spread quickly.

Thanks very much

Paul

Hi everyone 

So I had my 6 teeth out yesterday which hasn't caused to much pain thankfully!

That's the first hurdle done

Due to start treatment in couple weeks

6 weeks radiotherapy with 5 sessions of chemo.

My cancer is T3N2 behind tonsil 4cm and in left lymph mode.

Can anyone give me an idea what to expect with this treatment, can side effects very a lot in patients?

How many of you had the feeding tube in tummy?

Any advice would just be good

Thanks

Sam

Hi Paul

Same as you I had a needle biopsy on a raised left lymph node which is cancerous and the also found a small one in right which they said was okay.

Now they want to do another scan on Monday to double check that right one

Before radiotherapy starts in couple weeks.

Maybe they like to double check stuff.

It's scary though all of this I am hating but it's curable I've been told so I'm holding on to that thought

Best wishes 

Sam

Hi Sam

Good to hear it wasn't too bad having your teeth removed yesterday.

Yes the side effects seem to vary a lot from person to person.  I think you can expect to feel tired, and to have a dry and sore mouth which will make eating tricky.  So best to be prepared for that.  Otherwise deal with side effects if and when they arise. There are plenty of helpful tips in recent discussions on the subject of eating.

I had the PEG feeding tube in the tummy which I was glad I had.  However again it varies according to our circumstances and plenty of patients seem to manage without one.  

Best wishes for your treatment.  x

I was right where you were in Sept. 2016.  Newly diagnosed with Stage IVa base of tongue cancer HPV+ (thank goodness).  I too had been a pretty healthy 56 year old.  I was very lucky to have my GP look at my swollen lymph node and say it was likely cancer.  I was shocked and scared but got going on treatment right away after the biopsy confirmed the bad news.

I won't soft sell it.  Toughest thing I have ever went through.  Three rounds of chemo.  All day on Monday (2 different chemo drugs) and then on the 24/7 pump (a third one) until Friday afternoon.  I had all the bad side-effects.  After the third round, I had a month off before radiation.  I recommend eating like a lumberjack as soon as you can and do whatever ever exercise you can tolerate during that window to get ready for radiation.  I put back on 15 pounds in 4 weeks.  Then on to 35 radiation treatments with a chemo treatment on each Monday for 7 weeks.  The first 10 or so were not too bad but then you start to get the cumulative impact.  Eat whatever you can (mashed potatoes and milkshakes were about it for me).  Fill in the rest with Boost or Ensure.  I avoided the feeding tube but lost 40 lbs. by the time it was all over.  Actually, the worst time was the two weeks after the last treatment.  Sort of like a sunburn gets worse in the evening after being out all day.  You will be exhausted throughout this process.  Priority one is to take care of yourself.

I say all of the above not to scare you but to prep you for what is to come.  It is very hard.  You can do it.  Take the meds they offer if you need to but remember they have side-effects too.  The magic mouthwash was very helpful. 

One year ago today I was doing radiation treatment # 27 and in pretty bad shape.  It will get better.  Last night I ran 3 miles on a treadmill.  I kept off about 30 pounds I didn't need.  My hair is back.  My taste buds are back about 80%.  I still have dry mouth but I drink water all the time and it is fine.  The opening to my throat is smaller permanently but I just take smaller bites when I eat.  I have had two clean scans.  Another one next week - fingers crossed. 

You will be a different person with a different outlook when this is done.  I cannot say that it all happened for a reason but it did happen and I am taking every positive I can from the experience. 

Thanks it's good to get feedback.

I'm hoping for the best through treatment and I'm a positive person.

Good to talk on hear it helps me feel stronger to talk with people who understand x

Hi Sam,

My one was a T4N2 base of tongue, which I think meant it was further down my throat as I didn't need to have any teeth out. Treatment was 2 chemo + 7 weeks RT from Nov16 to Jan17.

I agree with "antphamer" regarding "toughest thing" etc and keeping up with food intake. But as a word of caution regarding eating. to keep the head in the same position you will likely have a mesh mask made. If you lose weight (as I did) the mask becomes loose and setup for RT becomes difficult. I suggest try and preserve your weight but not bulk up beforehand.

Before treatment I had a PEG fitted and towards week 5 of RT I was nil-by-mouth.

I'm sure you will have regular "how are you doing" checkups. Be aware of how your body is reacting and feed that back to your oncologist. Many side-effects can be countered particularly if they are addressed early. For example I became constipated and thought it would sort itself out, after a few days it became near unbearably painful.

I am now 1 year post treatment and was given the all-clear back in June. As with Antphamer, I also have a dry mouth which has improved steadily over many months. Via a MacMillian's centre, I had acupuncture which may have helped my silvia ducts to recover.

Keep focused on the end-goal and work your way through the treatment day-by-day.

Best

Chris

Hello Paul, this is to be expected with the swelling and soreness after the ultrasound and if my memory serves me well it should go within a couple of days . It is extremely unlikely that the cancer has spread in this way . I'm surprised they did not tell you that you might get pain and swelling and to go back if I had any problems after a week . The radiologist is right in what she/he stated that they do over treat patients so they get a clear margin . Hope all settles down ,take care .

                                              Chris 

Hello,

I am sorry to hear that you have throat cancer and completely understand your concerns.

I thought it might be helpful to share my partner’s (Jim) experience over the last few months. He’s 58, was very fit before diagnosis and like you shocked to find out he had cancer. Although a drinker he’s never smoked. It was not in our plans as we have been together 7 years and had lots of travel plans in place.

Like you he was diagnosed with base of the tongue and lymph node cancer caused by the HPV virus. My understanding is that we all have the virus in our bodies but usually it doesn’t cause any problems.

Jim was diagnosed in May last year, had 3 lots of chemo before starting joint chemo and radiotherapy in September through to the end of October. He escaped having teeth extractions. Chemo for him was fine (tired but otherwise ok with use of ant sickness tablets) and he was told to bulk up before RT started. We spent the time eating lots and catching up with friends. He was adamant he didn’t want a nasogastric tube so opted to have a RIG fitted before RT started. He also naively thought he’d be able to eat anyway and wouldn’t need the tube! Proved to be a god send.

Jim didn’t respond to the pain medication very well (some don’t apparently) so by week 3 of RT was not able to swallow and spent a week in hospital having his pain and liquid food sorted out. We struggled through to the end of RT. The docs said he’d find a way of dealing with the mask and he did. Then we had 2 months of him being very very poorly but we got through taking each day as it comes. He lost 2 stone in weight after the end of RT - and is now at his BMI weight - every cloud! He needed me particularly at this time and I needed support from family, friends and this site to get through.

The good news is that the HPV cancer has gone - we were told that a couple of weeks ago. Jim is getting rid of the RIG next week and is able to eat Diary, eggs, soup, puddings, bread, chicken - if cut small. He has made amazing progress in the last couple of weeks which is great to see.

It was a difficult journey but we can now see the light at the end of the tunnel. My tips for getting through it - use your Cancer Nurse Specialist - tell them your every concern. Ask for help from family and friends - most have no idea what you’re going through but are happy to help. As a carer I had several box sets and books on the go as it can be lonely.

You will get through it. You will continually be told that everyone is different so listen to your body and trust your instincts. Stay positive.

Wishing you all the best.