Base of Tongue Cancer

Hi I am hazel aka radioactiveraz. I didn’t have surgery but I had chemo radiation in July august 2018 pre covid. From diagnosis I was 63 days to treatment starting. I too had lymph node spread at diagnosis was several lymph nodes then at pet ct scan few days prior to treatment starting was 7 lymph nodes. Will your husband be having radiotherapy after ? 
I got the good news in January 2019 that I  had full metabolic response to treatment snd all signs had gone. 
hope this helps the waiting is by far the worst part. There’s a lady on here Panchshe’s had similar operation thst your hubby may be having her tumour was further forward but she may be able to help. 
Keep in touch Hazel xx

Hello Dejavu. Welcome to the community but sorry you have had to find us. I know chow worried you must be with all the news how Covid is impacting on cancer treatment. 
Hazel has tagged Panch who is recovering from radiotherapy after her tongue reconstruction. I’m sure she will be along soon with a comment. 
I had base of tongue cancer diagnosed mid September and not treated till mid December and I’m still here and that was nearly two years ago 

Do you know whether he is having a neck dissection and/or  radiotherapy? 

Hia 

Mine wasn’t base if tongue but was T3N0M0 by the time they cut it out.

Diagnosis and scans happened early - mid September -  and I was initially given an operation date of early October. However, the scans showed it was bigger than initially thought and they said that as it was now a 10 hour operation it would have to be pushed to November!

I think that’s the only time I cried in front of the consultant. 

That was the stage at which we stopped pussyfooting it around and basically asked how much and when if we went privately. The answer was in 4 days time (a bit too soon for my head) or the following week (Oct 5th)

However, we were really lucky as another surgeon was around who actively wanted to use leg tissue for a flap and they were able to shuffle things around to Oct 5th. I’m pretty sure that we would have paid tho - even without insurance.

The Radiotherapy is less than fun and they may recommend chemotherapy too.

Your delay isn’t as long as The one I thought I might have to face, but the important thing is to get that tumour out as fast as you possibly can, so if nagging helps, I’d do it and make sure that you’re first on the list and prepared for any cancellations.

i was in hospital for 12 days: no visitors, so phone, iPad, charger and spare charger cables!! 

When my diagnosis was confirmed they thought the cancer was in my tonsils and tongue.  I got the diagnosis about a month in front of you (but in a different year) just as I was going away from 3 weeks holiday.  The advice was to keep the holiday as any delay was unlikely to cause me any detriment.  In the end I had my first curative op on 3 Jan and the second one 22 Jan.  I was grateful to have Christmas without post op recovery. 

Probably much the same delay as you are looking at.  I am still here - alive and very much kicking!  But, in my case they never found the primary site despite all the digging around in my throat and neck.

The waiting is worrying, I am sure you have an allocated CNS - speak to them if you need any information and practical advice.  They tend to be far more pragmatic than the surgeons!

Good luck.

My husband was diagnosed on 16th December and we were due to go on holiday three days later and was strongly advised not to go due to him needing treatment so we cancelled and then on 29/12 were told to self isolate as his op would be in next two weeks then in 9th January told his operation isn’t until February.  Very frustrating for him and an increased length of time worrying.

Thanks for your reply my husband is having a 12 hr op and has to have half of the tongue removed and his lymph nodes, they are taking the flap from his arm. How has your recovery been and how long after the op did you start radio and chemotherapy, they have said they won’t know if he has to have this until after they have analysed what they take away.

Hi thanks for your reply, yes he is having the neck dissection and they have said they won’t know if radio or chemo will be required u Tim two weeks after the op once they get results back. all sounds pretty scary stuff he is so worried as am I

The surgery takes a lot of getting used to!

Ive not had chemotherapy. My Radiotherapy was delayed until +8 weeks as I sought a 2nd opinion (my own team couldn’t decide whether or not I needed it !) but 7-8 weeks after surgery I could make an attempt at chewing soft meats, brioche, pasta.

I have found my nutribullet invaluable, but I also have a mini blender which keeps things a little coarser for when you don’t want an absolute purée. (Yes, thinking about food as fuel is HARD - I like my fine dining - but it’s one of my targets for the future).

Yes, it will depend on what they actually find and the analysis of the tumour, its margins and the lymph nodes (histology).

Waiting is hard - especially if you can see/feel continued change. Just get his stuff (& mind) ready in case they have a cancellation xxx

I forgot to say - your eating ability will obviously be affected by whether or not all your teeth remain. 

They took 6 of mine - for access & so that I didn’t bite the new flap. Make sure that you have a dental assessment- they almost forgot with me!

Thanks so much for replying, was your op last year? Is the dental assessment done before or after operation? We have asked the Macmillan nurse about getting an earlier date but they have not had a response from the hospital as yet.