Hi my partner finished radio and chemo treatment for tonsil cancer with lymph node involvement nearly three weeks ago and I was just trying to get an idea of what one can/should expect in terms of after treatment monitoring and scanning if being treated on the NHS.

What are other patients’ experiences?

• How often were you/they seen?
• Who was involved in the follow up monitoring? Who did you/they see: oncologists and/or ENT specialists?
• What was the extent of the examination? Did it include an endescope?
• When/how often did you/they have scans and what kind of scans were they?

Many thanks

Cathy

Hi Cathy

I went through more or less the same thing as your partner. I hope he is doing as well as can be expected. Before I answer your four questions I have to point out to you that, not only does each patient handle their treatment differently, but their recovery will be likewise. Also, different NHS regions do things differently (gawd knows why!) so this is something else to be mindful of.

In response to your posers, in my experience the answers would be:
1) Every six weeks at the start of the follow up procedure
2) ENT
3) Sometimes an endoscope, sometimes not.
4) No use of scans at all.

I hope this helps you, although I know in my heart that you are still a bundle of nerves and will be for a while.

Please make contact if you have anymore questions or thoughts. I've been there, I'll do what I can to help.

All the best

Ray

Hi Cathy, .Ray has logged it as it was for us .
6 week checks for us up to 2 years as Paul had a terrible struggle then it went to 3 months then 4 months depends on how much support a patient needs or difficult side effects .
If a patient is doing well then after a year or sometimes 2, will go to 6 months etc .

Paul's bloods were always checked in first 6 months post treatment and he is always weighed .

Scans are of no benefit in early stages due to RT damage which causes scarring and unclear readings .

Bell.

Hi Ray and Bell,

Thanks so much for your responses. I am glad to have establishes that ENT folk are involved as I think it particularly important that they are involved in discusions about if/when Chaz should have a neck dissection in out first follow up. I think our situation may be slightly different as Chaz had lymph node involvement and they will have to do a PETSCAN about 12 weeks to guide a decision about whether to perform a neck dissection. It is really worrying that he has not already been offered a dissection as it seems well established that an neck dissections increase survival rates and there are risks in taking the wait and see approach ( http://ohsu.org/ent/gen/pubs/positron.pdf )

I also think they have to/should perform whole body PETCT scans at regular intervals on patients that present with locally advanced cancer as a prophylactic measure to ensure that distant metastsis (which is a distinct possibility once cancer cells are in the lymph system) is caught as early as possible.

(http://esciencenews.com/articles/2008/10/21/chest.scans....high.risk.patients)

I have read of a couple of cases on this message board that suggest the some health trusts are not very diligent in this regard which is part of my reason for starting this thread. I think patients with lymph node involvement should be aware of this and try and negotiate full body scans where possible.

Also find it encouraging that they tested Paul's blood as it would be reassuring to know that things like lymphocyte counts were back to normal post chemo.

Best wishes,

Cathy

This message has been edited. Last edited by: CathyS,

Hi Cathy

My cancer had spread to the lymph glands by the time they diagnosed me. As it was too far gone to operate, they decided on aggressive R/T and chemo. The effect of this is that it has left me rather weak and 17 months post treatment I am still very short on taste buds and saliva. I am more concerned about being able to eat properly than contracting it again!

If you have any concerns about anything that the NHS do, then question it and keep doing so until they give in. Remember, no matter how nice they are to you at the time, you are just another number.

"Never give up, never give in"!

Ray

Hi Ray,

I think my partner would very much agree with you! He is much more concerned about being able to eat and last night was horrified by the new experience of a horribly dry mouth. Did you have unilateral or bilateral radio?

My attempts to understand treatment processes and know what I should ask of the NHS are all part of a ridiculous, obsessive and pointless effort to gain some sense of control as I can't do anything to help him with is saliva or taste. I also feel quite guilty for burying my head in the sand when he was first diagnosed and not reading and asking more questions then. I am slowly becoming more assertive with the service, being encouraged by a very strident friend who manages a project within the NHS! Have recently started to email onocologists which seems to have quite promising results. I don't know whether its because anything in writing is more official or because it is easier for them to find time to answer?

But bloody hell its completely exhausting and I think my partner might be happier if I sat back and just went with the cancer centre directed flow. Its so difficult to know what is best for him...Anyway I am encouraged by your message and from reading some of your past posts - Victor Meldrew :-) it sounds as if you have been managing to cope with the emotional and physical challenges of this horrible disease extremely well.

Take care and thanks so much for replying, I really appreciate it. Hope it is as sunny in Somerset as it is in Brighton.

Best wishes

Cath

Hi Cathy

If by "sunny", you mean cold, wet and miserable, then yes!

Please make sure you don't over compensate for your past guilt by going full on now. In saying that, I cannot put myself in your position anymore than than you can mine. To me the whole diagnosis and treatment thing was no big deal. As I've said before, cancer happens...get on with it. I guess it must be harder for the friends and relatives as they are bystanders who can't do a lot but worry.

I really have no idea what kind of R/T I underwent. All I know is that I spent seven and a half weeks of daily weekday sixty-odd mile round trips which took it's toll. The six in-patient dates for chemo weren't the greatest but I met some special people, some who survived and some who haven't. We had some great laughs on the ward, which was quite easy for me as I have an evil and twisted sense of humour. A doctor came round for a routine check and said "hello, I'm Dr Nick" (I expected a Simpson's like response!) and asked how I was. I replied "well doctor, I've got cancer and may die". His face just dropped and he didn't know what to say. Actually, dying was NEVER an option as far as I was concerned, but he was such a misery, I just had to freak him out! Another time, the nurse was checking me into my bed and I said to her, "typical NHS, they go and stick a manic depressive in a bed next to a window". Talk about sense of humour failure, within twenty minutes I had a clinical psychologist round probing my head! Well...you've got to have a laugh, haven't you?!

As for the dry mouth, I use a product called Glandosane. It is a small spray tin and comes in Peppermint (the one I use), natural and lemon flavours. It is readily available on prescription and I find it better than the small spray bottle I bought from Superdrug and filled with water. If you choose the latter option then use tap water as it is actually less contaminated than the bottled stuff.

Once again, handle all this as though it is just another hurdle to overcome. That is all it is really...cancer is nothing special. Personally I couldn't stand people fussing around me and told everyone to sod off, but as you've read, I AM Victor Meldrew!!

Ray

PS You can send me a stick of peppermint rock when my taste buds can handle it.

Hi Cathy your diligence is correct and proper and you have to express your feelings at the clinic and ask why they are not doing what you feel they should.i am sure they will explain and if you are not happy then push them .Blood tests are imporatnt as depending on area targeted bt RT can cause upset to pituitary gland functions causing problems with thyroid etc which can be masked by RT fatigue etc.

Dry mouth will reach a peak over the coming months and may or may not return .After 2 years Paul regained minimal taste bud function but no Saliva at all ,he was unfortunate .He now copes well with eating and as along as their are sauces can eat most things .Spicey foods area no go as he can't tolerate them at all.He uses the Biotene toothepaste,and mouth wash.Also has a special high fluoride toothepaste from dentist he uses at night .The biotene and glandosane mouth spray are free on prescription .

Cold sores on mouth area are also a constant running problem especially if he is golfing or outin the wind .He is now taking aciclover 1 a day permanently and this has stopped this .

Think the problem is the fact it takes a long while for things to recover and everyone is different but after 2 years you will know what is coming back and what is not at least that is what we found.
Bell

Hi there Cathy
I used to think, like you, that we should all have a PET scan every year (or two) and that surely in the long run, we would all have fewer health problems and so on however I've changed my view ~ I think.
Last year, before (or was it after?)Trevor had his neck dissection, we were hanging out for this PET scan. We had never heard of it before, and knew it would tell us everything and show us everything and then the drs could just get to and fix it all. If only that had been so.
It was great that it showed no sign of any nasties and all that had to be done was chemo and r/t to clear up after surgery and all would be well with the world. Sadly no.
To find out 12 months later that Trevor's entire duodenum was cancerous and half of his pancreas (and it was not related in any way to the earlier cancer in his neck) just blew me (and the drs) away.
I queried the value of the scan with our r/t specialist and he said it is still the best they can do but of course, spots/activity have to be a certain size before it shows up.
As Big Ray says ~ that's life, really.
I guess I'm trying to say that you should concentrate on dealing with what's presented. It seems to me that patients are treated according to their presentations and not everyone has the same thing in the same order. A neck dissection may be in order at some point down the track. I think Angie Baby was worried that Bill didn't have surgery with his stage 1V cancer but here he is all recovered and well again.
There is just so much to think about isn't there and as the carers we feel we have to fix it all. If only we could .........
Good luck with your searching. I hope you find the answers you want and need for Chaz.
Cheers
Deborah
Sorry if I've rabitted on .......

Just to add Cathy. I hope the other half hasn't developed oral thrush, but don't worry if he has, it seems to be common.

Make sure he brushes his teeth (and tongue) 3-4 times a day and uses the prescribed medication. A rotten side effect of the treatment, but it soon seems to pass.

Ray

Hi Cathy,

I completed treatment in April (rads only) and one month later had an appt with the rad onc for a check up, followed by monthly checks through August. In September I began alternating with the ENT one month, the rad onc the next. I asked the latter when the appts would be spaced further apart and he replied, "When I'm ready to say so." Huh. Enough for questions. He did have a smile on his face when he said it - I guess that counts for something.

So far, so good. NED (no evidence of disease) from both docs. I think but I'm not sure that after the first of the year the appts will be every other month. On the one hand, I love having the assurance that everything is going so well that I don't have to be seen so often; on the other hand, it's nice to have that reassurance every month that I'm NED.

On my last appt I asked the doc when I would be having my first PET/CT scan and he mulled it over as if he'd never heard of such a thing before. He said he'd arrange it and today I got a notice that I have an appt on Dec. 17th, so he did follow through.

Am glad to take the test but have read recently that they're not all that accurate (sorry - I don't remember the percentage of accuracy) but I guess it's all we have right now and we'll just have to hope we'll never be treated because of false positives (or negatives, for that matter).

I haven't had any blood tests before seeing the docs for this cancer but do have a blood test before every visit to my breast cancer onc (I see him once every 4 months now and am in my third year of remission). I think they're all looking for the same things, so the b/c onc may catch what the oral cancer onc isn't prescribing.

They use the endoscope every visit. I hate to say that I'm getting used to it, but it gets easier every time. The first time I had it done it seemed like it was a three foot piece of barbed wire that went down my nose - now it's something smooth that goes only a few inches. With your fingers, measure the distance between your nose and the bottom of your lower jaw - not quite three feet, more like two inches or so (or whatever your unit of measure is - am pretty sure that it's not kilometers)! Because the endoscope can't go to the bottom of your jaw, we're talking mere inches with a fraction.

I'm in good shape with no problems other than occasional dry mouth. Several months ago I had to ask for meds for thrush although the doc knew I had it. Sigh. Doctors are often like some rare species that science hasn't dissected and classified yet.

Although we sometimes think we're just numbers within a system, every so often we get a doc or a team that we connect with. I got that this time with the rad onc, ENT, and my dentist. I thank these guys for saving my life, difficult though they may be sometimes.

Best of luck to you and Chaz. Take care.

Mimi

This message has been edited. Last edited by: Mimi McC,

Ooops...forgot to say, good luck with it all.

Many thanks for all of your advice. I have had a helpful email dialogue with an onocologist who I think essentially confirmed Debs argument re scans (see below). It was also quite useful as I have made contact with the wife of another tonsil cancer patient who is in a very similar position to me re pursuing neck dissection options.

Firstly - follow-up of the known cancer (i.e. head and neck). Accurate staging is important before commencing very arduous treatment with an aim to cure. Detecting relapse is important if there are salvage options that will still cure the patient (hence in the case of head and neck cancers, much effort is placed into detecting relapse of the primary / neck where further surgery can still cure). Patients who unfortunately relapse distantly, do so in many different ways and routine scanning for this is counter-productive in terms of false reassurance (one normal scan does not mean that there aren't cells active elsewhere, and all imaging has a minimum size sensitivity) and also use of patients time and resources. Equally, excessive CT scanning has a known risk of causing a second cancer (5 CT scans of the thorax = about 1 in 2000 cancer risk) - recent data suggests 1-2% cancers in the US are related to CT scanning.

Secondly - detecting a second primary (i.e. lung cancer). This is potentially more interesting and of use to the patient, but is still considered experimental. Big trials of CT scanning in long term smokers, do find early lung cancers (a good thing) but also find lots of incidental scars, nodules etc, which lead to invasive tests, anxiety, and end up doing harm to the patient. At the moment, on balance, there is more harm than good for the population overall (though of course for those patients who get an early diagnosis it may be a big benefit). The Head and Neck patients, are definitely high risk for a primary lung cancer, and this is an interesting area but as yet there is not the data to inform exactly who and how often we should scan the patients. At present then, regular chest x-rays are still preferred.

A bigger issue I think for all of the patients coming to the end of arduous treatment is the uncertainty of long term success and ongoing fear of relapse. Oncologists have to stick to evidence based follow up schedules and think about the benefits of doing test A of test B, patients and their families have to find a way of managing their anxiety and risk (measured as percentages for populations, not necessarily helpful for individuals) and getting back to normal life, whilst accepting there are no guarantees.

ps I love BigRay's sense of humour and will send the rock when I get the sign :-)

Thanks Cathy, youve just brought a big smile to my weary fizzog. It is much needed. Gawd bless ya!