Good vibes

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 

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.

L

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. 

Hi All

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!

B

Hi madaboutmutts. Fingers and toes x youve  come this far ,I am now 15 month post radiotherapy and living my life ,ok reduced saliva and still some food issues .

look forwards to hearing your news next week.

try nit to stress

Hazel x

HinBluebird fingers x for pet ct scan , I was lucky in a way my oncologist made me wait 17 weeks as he said if he did it before xmas Iin early dec it was  too early at 12 weeks as too many false positives come in his experiences for mr I . So,I had my pet ct scan 4 jan results 14 jan and hasn’t he promised me in day ine no signs of cancer remained . All my follow up appointments have been good , so try and take positives and fingers and toes x . Ye agree sometimes to consultant s become immune to patients feelings try and enjoy Christmas , just remember how far you have come since the start if this treatment .

Keep in tiuch

Hazel x

Bluebird6 when I had my PET scan I had the contrast, as well as with my CT and MRI scans

Thank you Hazel. So hope I will have good news to post next week!

B

Hi Hellibore1 and interested others

Hubby is now 10 weeks after chemoradio treatment 30 radiotherapy & 6 chemo over six week period - this followed surgery for removal of both tonsils.  His was SCC & HPV positive.  Final diagnosis was Advanced but locally contained cancer - with 3 lymph nodes confirmed and two suspected.

Following treatment and the usual follow ups we have asked if any scans were planned.  Usually reply was we will see, leave it for now.

The last follow up was with the original diagnosing Head & Neck surgeon who totally shocked us by his responses to our questions.  He initially ruled out any scans saying not necessary, then when my husband explained why he thought a scan was necessary he could barely contain his annoyance and asked what type of scan did we want.  When we said PET scan as that showed up where the primary tumour was (previously CT & MRI hinted but couldnt diagnose) he was adamant that we weren't going to get another PET Scan and ordered an MRI.  

We are aware that PET scans are expensive and as the margins of the tonsil were positive for cancer cells it seemed reasonable to ask for that.  It seems to be a postcode lottery relating to scans from what we can gather.

The information you provided in your post is highly relevant to my husband (and obviously others) and we may delay the timing of the scan - especially if a contrast dye is to be used.  

Regards

BrandyGirl

Thank you for your positive words, we are keeping a positive focus and very hopeful for good news in the new year , just crossing everything and trying to keep busy!

thank you

L