Hi Maris

It is a lot to take in and know what you mean as all so fast and confusing.
As far as bloods go, and only by my experience, they test for all sorts and I had various bloods tested along the way. So who looked up blood tests to cause the confusion or was that just part of the overall testing being done.
Scan and biopsy will show up anything untoward and should take around 10-14 days for results.
So were you already booked in to have tonsils removed ? and they had a further look yesterday?

In so many cases they will double check and does not automatically mean anything sinister but I'm kind of confused with the timeline of events so as you have indicated as well, I would suggest that now you have had a chance to draw breath, you phone up dept or upport team and ask them to clarify what they are actually testing for and why was liver/kidneys mentioned.
I think at this stage, I would try and get some initial clarify to find out a little more on current situation.
It does seem a little confusing but please seek clarity for your peace of mind if nothing else.
Good luck with tonsil removal and to be honest, its a little challenging recovering from but please feel free to friend request if you want to chat on a one to one basis and if you feel i can help in anyway at all

regards

Ian

Hi Ian

thank you for replying , I wasn’t due for tonsils out had had swollen tonsil for about 9 weeks, had really bad throat pain and lump on side of neck  , drs said virus on the three occasions I went , on the third occasion I insisted on an ENT appointment , then that was yesterday , she never mentioned liver and kidney but sent me for two blood tests I googled what they for ? Got phone call today to have tonsils out Monday 

maria

Hi Maria

have got your PM request and I have sent you a reply in private messaging
Advice I would normally say to all though is to please stay off Google. There is so much mis information out there as wel as being out of date and there is always a good chance of self diagnosing something sinister when majority of cases really quite unfounded.

regards

Ian

Thank you again your so kind 

Hello all

Hi I’ve just come across this site an been reading how people have been gettin on with tonsil cancer I was diagnosed in December left tonsil had 3 lymph nodes out an it was found i 1 of them I started treatment 14th January 5 sessions of cemo but only managed 3 an 30 sessions of radiotherapy I’m almost 12 weeks from treatment an I’m still struggling with eatin my mouth is still sore I’m on 6ensures a day I struggle to get anything down if I do my mouth just goes sore I’m due to have a scan on the 20th of this month but I’m thinking it’s to soon they have said it might still show up that something is there but doesn’t mean it cancer it could just mean that it hasn’t healed properly yet an if it does they would leave me 4 weeks till 16weeks out of treatment an scan me again so I don’t see point of the scan or am I working my self up over nothing an just get it out the way I have posted this somewhere on this site then noticed these messages so copied an pasted it on a reply so not sure if Ive done it right x 

Hi Nicola , so sorry to hear your news , I got told by ENT on Wednesday just gone my tonsil looks suspicious after being told by drs for the last nine weeks it’s viral , going for tonsils out in the morning , ******** my self is an understatement , did you have tonsils out straight away ? I’m so confused as was on my own and couldn’t take it all in , I know you prob don’t wanna hear other people’s worries as you are worried yourself but I’m just so confused and trying not to google ! Really hope u stay well and from what other people have said it’s a highly curable one , still doesn’t stop you worrying though 

thank you 

maria

Hi Nicola,

Am sorry to hear of your diagnosis and joining our unwanted little club.
You will have see from a few of the posts that some recover quicker than others while ome take a little longer. I'm same as you and taking longer to recover and struggled with appetite and fatigue being the main ones post treatment. I lost a lot of weight in a short period of time and was on 6 ensures a day for a period and then stopped. I was then put back on supplements around 6 weeks ago and have been told to take them for at least another month and my treatment stopped last November so its been a long haul.
I would say its better now and am able to east most thngs again but still have fatigue issues and sleep is still fragmented and still get really tired. How is your fatigue doing as there is a correlation with your diet/appetite etc with fatigue. I went back to my support team around 6 weeks ago and they explained a little more about good calories and wasted calories and should concentrate on nurtitional value etc.
I have kept a blog from the get go, warts and all and it pretty much logs my journey throughout with the timelines broken up into sections as well as a section with many tips picked up along the way. Ive posted the link below for you to have a look at and you might find it a helpful insight.
As for your scan its pretty normal to have CT/PET scan after 3 months but like yourself, I was warned there is a high chance of what they call false positives as the back of throat will still have swelling and may show up lights from from the dye they put in. I was told if that were the case, dont worry about it and they would wait another 3 months and do again and this would happen in approx 60% of patients according to my consultant.
I suppose one of the benefits is that, like myself, it showed I had a positive response to treatment so it does lift your spirits although it does not mean, like a lot of people around me assumed, that all my side effects would magically disappear overnight.
I understand your point of view but from a clinical point of view its probably some baramoter how treatment went and how back throat is in some detail, but with the kicker that you might need re done again in few mths time.
Its a double edge as you will be pleased to get a positive response but frustrated at maybe having to have re done. I would say the thing is to try not to overthink the scan thing,although not always easy, but recogise we know in advance and told there is a high chance of false positive readings and not to be alarmed about.
I hope this helps in some way, but please keep me posted with progress and let me know if there is anything I can do to help in anyway at all. Also happy of you wanted to friend request if its easier for you to chat more on a one to one basis and for posting/replying.

Stay positive my friend and the succcess rate from this treatment is really high and the light at the end of the tunnel really exists. It just comes with really naff side effcets over quite along period of time

radiotherapythroat.home.blog

kind regards
Ian
 

Hello Maria yes they did act straight away as soon as my results came back from the pet scan did take them from July tho I had biopsy, cameras ultrasound an cat scan and all showed up everything was fine I felt fine aswel wasn’t expecting the news I had all I had was a lump on my neck as if I had swollen glands on the 1 side it was only that another doctor wanted a pet scan they done it other wise they was just goin to remove the lump so I’m grateful he wanted the pet scan and no if u have any more questions go ahead an I’m worried I have 4 children to look after they have already seen me go down hill once I couldn’t bare them seein me like it again it is pain full having the tonsil out but not for 2 long good luck an please keep me updated xxx 

hello Ian thanks for replying to me i think I’m finding it hard as I usually heal quickly but I guess not with this  an I’m not to bad I’m not sleeping in the day I have 4children that keep me on my toes an I love it I love that they keep me busy an if I am tired I don’t get chance to rest I find if I do rest I’m thinking to much my neck an cheeks are swollen still An was your throat still abit sore when u have the scan? An I done quite well with the weight I only lost about 6lb an put it straight back on I’m not a big girl anyway so they was worried if I did loose it cuz I couldn’t afford to but I kept it up an I’m not sure how to add you as a friend but would Be great if u could add me an I will be definitely reading your blog thank you xx 

Hi Nicola I am 8 month post radiotherapy for tonsilmcancer I have a detailed blog 

www.radioactiveraz.wordpress.com where I detail mybtreatmentband recovery it’s difficult but if you read it hopemit gives you some tips  ask away any questions these is a link to ian who is Anchor 1707 blog on it as well

good luck mynscan was at 16/ weeks all clear still having saliva issue but living my life 

hazel,xx