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Firstly, sorry I haven't been online for quite some time; my last post I was pretty dejected but there were some really positive comments in response which did cheer me up, thank you :-)
I felt I should give a quick update! To recap, OH had left tonsil cancer, plus 3 lymph nodes. He joined the Compare trial and had extra intensive RT for 5x5, plus weekly chemo for 5 weeks. He only had 4 of his chemo sessions, by the last one his blood count was too low. The burns were pretty awful,and he was totally dependant on the RIG for nutrition, thank goodness he had it!
We are now 12 weeks post treatment, as of today! He had his RIG removed 4 weeks ago and is managing well, we keep the food moist and not too much pepper or spice and he's enjoying eating more and more. We have shakes to top up the calories when needed. The skin has healed beautifully and he has really soft skin on his neck (no hair growth yet) which is lovely to snuggle in to!!!
Dry mouth remains a problem, he generally has milk with his food and a glass of water by the bed; we tried a saliva spray but he hated it! Guinness seems to work well too...
We have our PET scan on Monday, and review either Wednesday or a week Wednesday, so keep your fingers crossed for us please!
All in all - summer has been pretty tough, but this community has been amazing, and so has the Norfolk and Norwich oncology team and the team at the Big C centre.
I know we started our journey at a similar time to a few others, and having a nosy around it seems like most of you are progressing well too, so well done everyone!
All the best
Good vibes indeed, and it is good to hear he is doing so much better now. Things at times do seem to take a long time in getting better, but our body does have a lot to repair and get over.
Lovely news ricoshay! Firstly no need to apologise at all, we are here as and when needed, glad your OH is doing so well. Guinness sounds like a great shout (in moderation obviously), wish someone had suggested that to me.
Good luck with the PET, sure all will be well and great you had a good experience with the team in your area. We are very lucky that "bad" news in our little section of the community is rare, plenty of niggly nasty stuff which can't be underestimated but proper bad outcomes are very much the exception rather than the rule.
Onwards and upwards to you both.
What is a Community Champion?
Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
well done to both of you for getting through it all
it’s a long slog but daily baby steps get you there
keep fighting and keep well
Good evening ricoshay, as Mike says no need for apologies as we all know on here how time-consuming and difficult this journey can be, so well done in getting through it all as I, remember what a struggle it was for you both. Must say I have enjoyed a few glasses of Guinness, my mum once told me that stout was encouraged as it added iron? Not sure about today's doctors, but I always did what my mum said :) we are pleased the community helped and was of some use to you, we will be here if you ever need us in the future. Fingers crossed for Mon and Wed, best wishes, take care.
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I can confirm what Chris says about Guinness - when my mother first qualified as a midwife in the late 1950s, it was still prescribed to nursing mothers because of the high iron and B vitamin content!
Glad to hear you OH is doing well and feeling much better. I can empathise as my OH is just over 13 weeks post treatment chemo radiotherapy for oropharyngeal scc with a large lymph node. Sounds like we had a similar journey so I know it’s not been easy, also like your OH still have issues this end with dry mouth and all the similar side effects that people report on here. We are waiting for post treatment MRI results in fact hoping to get a call from the specialist nurse later today to feed back from the MDT meeting they are having now!!! Has a bit of a shambles of a follow up appointment on Wednesday when we saw the oncologist who said she couldn’t tell us anything as the scan report wasn’t back! So waiting for a verdict today!
hope the scan and results goes well at your end , good luck!
Good news Bluebird. It’s still a devil waiting for those results isn’t it? Fingers crossed. I had an MRI at 12 weeks as well but the results weren’t reported to my oncologist by the time my next appointment rolled up. I had to sit there while he told me he’d looked at the scan but the report wasn’t back. I could have strangled him! So he said, “Have a look at the scan and see what you think?” So we looked at it together and the tumour was gone!
Thank you that Sounds very similar!!! Enormously frustrating!
Now been told today that the primary is gone , which we are very happy about! However the lymph node has question mark over it, they are not sure if it is necrosis or still active cancer in the lymph so now having a pet scan at the end of December to try and work that out! Fingers crossed the cancer is gone and it’s necrotic, they said the necrosis self resolves if it’s just that, anyone else had that experience?
Hi Bluebird. Yes - I had the same! The waiting is agony. The MRI often doesn’t show complete response to treatment at 12 weeks - there is frequently “uptake” of the contrast dye injected into the lymph nodes of the neck. especially HPV +ve cancers which are more likely to have a better outcome but are slower to show the response. The Oncologists know this, but don’t bother to explain to us!
So here’s the information I wish I had had before I walked into the room to get my MRI “result”,12 weeks after treatment, and which may be helpful to you: - “although the vast majority of tumours respond well and you are likely to have no further disease, there is a roughly 60% chance (yes you read that correctly)that the MRI won’t show this at 12 weeks! “ You are then sent for A PETscan which is far more likely to confirm whether cancer is still present or not. By now you are shattered with worry that the treatment hasn’t worked right? Well please dont be. The odds are very much in your favour, but the communication skills of many MDT members are poor. They have no understanding of the fear & emotion that patients and families suffer when there is uncertainty.
So enjoy your current situation of primary definitely gone, and the likelihood that lymph nodes also fine - they just don’t show it on MRI, but the PET is highly likely to confirm.
Thank you!!! That is so reassuring to hear and you are so right, they clearly don’t understand the enormous turmoil you are in having got to that point at the 12 /13 week follow appt to get the results . We finally got in to see the oncologist after 5pm on Wednesday to be told they couldn’t give us the results as the report wasn’t back, I could see the scan on the screen and having a bit of experience at looking at scans, although definitely no expert, I could see a worrying feature , which I know now to be this lymph node they are questioning. so we left in utter turmoil and then finally got the result from the nurse yesterday afternoon. Rollercoaster doesn’t begin to describe what we’ve been through the last few days.
really reassuring to hear you had the same , really appreciate you sharing that information. And yes it was HPV 16. So everything to hope for now,
I’m so sorry you had such a rubbish experience. It is unforgivable to bring a patient in to an appointment when the all-essential result is not yet reported. In a well-run MDT you should have been put back a couple of days until it was reported.However, they do their best! I absolutely know how awful the waiting is, but I can’t stress enough that the likelihood is a good result. So let all your friends know that you need to keep busy, do lots of fun things and hopefully the time will pass quickly. Many people now have a PET scan only, no MRI. My own team has moved to this. I really think they should be more honest with us - “you’ll be having an MRI which is great, but there’s a good chance you may need a 2nd scan” is not a difficult thing to say!
When this is all over and done with, please feed back to your team about how you felt at this time - they need to learn and improve.
Enjoy the busy run-up to Xmas - at least there is a lot going on at this time of year....Hilary
thank you for your reassurance, yes if they had just contacted us in the morning when they knew they didn’t have the report and explained and put the appointment back. Sadly it’s these things that make this experience so much harder. I have also had the conversation about whole Pet scan issue which clearly many centres are using and I had asked if it was possible to have instead of the MRI but they were quite resolute in going the MRI even though my hubby had a reaction to the contrast when he had the first MRI. They went ahead and gave it again, to which he reacted again!!! And now he has to have a PET scan anyway.
But we are feeling very positive and will as you say look to distractions till we can get a result in January.
Thank you again
for your help.
Lots of places used to stop at the MRI. I know Swansea did till they got routine access to PET/CT. The PET scan is a whole body scan so it would pick mets up. The MRI is just the head and neck. Hope your husband is OK after his reaction.
My husband ( tonsil SCC and lymph node P16)had his 12 week PET last week and we have an appointment on Tuesday - hopefully for the results . We are both getting very jittery about it and trying to stay positive. He is doing quite well but still has sore mouth/throat and finds swallowing difficult. He has lost no weight and camera exam of nose,/throat 6 weeks ago showed only post radiotherapy swelling. His lymph node has gone, but he does have quite a bit of lymphoedema- especially under the chin (turkey neck).
A good result would be the best ever Christmas present!
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