Hi.
My husband is having PET on Thursday to try and find the source of the scc cells found in his neck lymph node. He is also having pre assessment next week for biopsies of tonsils and base of tongue - which is where they suspect this originated. He is still firmly against knowing any of the treatment details. Very anxious as to what the scan might find and if this has spread anywhere else. Our Nurse Specialist isnt that helpful but did say if its where they suspect, they would be aiming for cure. Husband is busily doing jobs, gardening, walking the dog. I know this keephis mind off it but I also think he is trying to prove a point.
Do they usually let you know the results before seeing them again? This waiting is awful. Keep everything crossed for him please!
All I can say is I am on his side and only wanted to know as little as possible, I also found that to try and put it out of my mind was the best way of coping was to keep busy and talk about it as little as possible (I am a wimp when it comes to things wrong with me).
I was told at a meeting but get the impression that is not always the way, as for the waiting if there is something it should move quite fast, mine did and it was hard to stay positive when I knew the date of my op, it was even harder when it was put back for a week as I had put all the effort into the first date.
I think my wife was the same as you as I take it you want to know everything, if this is so ask the consultant if you can speak to him when he has finished with your husband, mine was happy to do this so I just left the room.
I would say from reading your post and the way I was try not to have it as the only topic of conversation (it's hard not to) as he will I would think be having his own battles, talk to family and friends to help yourself get through it but don't stay off the topic completely as this might also be a problem. It's very hard for both of you I think in my case even harder for my wife and family as I just had to deal with what was going on and they had to work around it.
I am not the best writer so if this is not how it is with you then I am sorry but I have tryed to answer the questions as I saw them, good luck with it all.
Hi madaboutmutts
My experience was that my team always tried to get results to me before my next appointment if they possibly could, but there didn't seem to be any specific time scale. I was like your husband in wanting to keep busy. I remember spring cleaning the house from top to bottom while I was waiting for results, first time in my life I've ever had any enthusiasm for housework.
I think Ron has written an excellent reply and I agree with what he said. I found it took my husband and I some time to find a way of what worked best for us. In the end we agreed that we would set aside an hour a day for talking about our worries. The rest of the time we would try to keep our minds off the subject if we could. As Ron suggested, it's a good idea to speak to your husband's medical people on your own if you want to. I wanted as little information as possible but my husband often wanted reassurance and more details about something. So I'd leave them to their conversation.
The waiting is horrible isn't it. We found we both felt better about it all once I had a definite diagnosis and a treatment plan. I will have my fingers crossed for your husband.
Keep posting, we're all here to keep you company while you wait. xx
Thank you for taking the time to reply. Spoke to Specialist Nurse today who said they would let us know the results about a week after scan. If source is found elsewhere the treatment plan could change but it as they suspect its in tonsil/tongue area ( he will he having biopsies of these soon) they will go ahead with surgery and radio/chemo every day for 6 weeks. Also ssid this would be the treatment even if primary is not located. We will not see Consultant till scan and biopsy reports are known. So looks like about 3 weeks till we get a firm plan. My husband just wants to get on with it - and Im just terrified but could get an Oscar for acting as though Im not!
Hi if you want an idea of timescale I have detailed this in my blog think yiu May have glanced at it. The nhs have a set time scale don’t worry things will be happening in the background once treatment starts everything flows .Try and talk about it with him it will help but like others say don’t let it dominate yiu there’s plenty of us on here who have come through treatment and getting in with living our life’s .yes even if primary nitbfound which happens quite a lot the treatment invariably is the same . Mine was found in right tonsil do u know if hubby is h p v 16 a+
blog www.radioactiveraz,wordpress.com
keep in touch
Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi madaboutmutts (me too)
My timescale was scans and biopsy were all done within a few days of each other. I saw the consultant and various other members of the team 2 weeks later for results and plan of action.
Try not to let your imagination run wild while you're waiting for the results. Any help or advice there are many of us here who have received the same/similar treatment.
I wish you and your husband all the best.
Linda
We have been in totally monogamous marriage (not a shadow of a doubt) for 48 years so HPV unlikely! Just hope they will find out where this thing has originated so we will know what we are up against.
Makes no difference madaboutmutts. 80% of people carry HPV at some point in their lives without ever knowing about it. It can remain in the body for many decades. It's definitely not an indicator of infidelity so no stigma should be attached.
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