Hi

Vinod kindly asked me to join this message board when I recently wrote to him. I think it's great that this is a board with UK stories in particular.

Last June 2002 I was diagnosed with occult (hidden) primary SCC . Since then I have had surgery for a single node removal, 6 weeks radiotherapy treatment plus the subsequent taste loss and resultant 4 stone weight loss. ( But I love my new figure - the only bonus of this disease.)

I have been wondering how others cope with the concept of """occult""" primary.

Well, welcome Pauline it's good to see a new name.

I saw """occult""" and was immediately intrigued.

However, I'm sorry to say this was a totally new diagnosis to me. For further highlight my ignorance what's """SCC""".

Me, I've just had a nice simple cancer of the tongue.

Occult means hidden.

No doctor in UK has ever used this word to me although I have heard them use it as an aside among themselves. The (mainly) Americans on the ACOR listserv use it all the time and seem to have incredible details of their own individual cases all in abbreviations like TN this TN that, stage this stage that!!! ( I have no idea what TN means even now, so maybe someone could help here)

I had a small neck lump and a doctor gave me a Fine Needle Aspiration (FNA) in the lump and revealed what I think were called poorly differentiated SCC cells - in other words the lump was a secondary site of Squamous Cell Carcinoma.

I had the lump removed the following week and they took six biposies from my mouth, throat, nose area etc., and found nothing of obvious size indicating a visible cancer.

The assumption after various body scans was that the primary site was microscopic, and possibly less than 1 centimetre and probably hidden in the area where SCC is most likely to be found in the tongue/oral cavity and nasopharynx/throat area.

So oncology gave me radiotherapy treatment in the area where they "think" it would most likely appear within 5 years without treatment. Not that having treatment is any guarantee of finding it. Still let's stay positive and hope they got the nasty beast. I have not had chemo and wonder if they are keeping this in reserve should something appear.

So the difference between you and me is you know where your cancer was exactly. I like you have had it, indeed may have had it in my tongue may still have it there, but have no real idea where it is. I like to tell myself everyday that I don't have it anymore ( ever hopeful)! I hope I've explained this.

Probably we both have eating habits that have changed a lot, dry mouth and hoarser voice.

This message has been edited. Last edited by: Dr Vinod K Joshi,

Dear Pauline

Nice to see you here.

The TNM refers to the clinical staging of the cancer following a physical examination, imaging (to evaluate extent of primary and regional disease as well as for metastatic disease); chest x-ray (second primary or metastasis). It is confirmed by the surgery done. It helps communicate the extent of the tumour (staging) and can relate to the treatment option offered. It also helps researchers to study the tumours.

TNM staging
Primary Tumor (T)
TX - Primary tumor cannot be assessed
T0 - No evidence of tumor<br />Tis - Carcinoma in situ
T1 - Tumor <2cm in greatest dimension
T2 - Tumor >2cm but <4 cm in greatest dimension
T3 - Tumor >4 cm in greatest dimension
T4 - Tumor invades adjacent structures (mandible, tongue musculature, maxillary sinus, skin)

Nodal Involvement (N)
NX - Regional lymph nodes cannot be assessed
N0 - No regional lymph node metastasis
N1 - Metastasis in single ipsilateral lymph node, <3 cm in greatest dimension
N2a - Metastasis in single ipsilateral lymph node, >3cm but <6cm in greatest dimension
N2b - Metastasis in multiple ipsilateral lymph nodes, none >6cm in greatest dimension
N2c - Metastasis in bilateral or contralateral lymph nodes, none >6cm in greatest dimension
N3 - Metastasis in a lymph node, >6cm in greatest dimension

Distant Metastasis (M)
M0 - No distant metastasis
M1 - Distant metastasis

The TNM is then used to Stage Group the tumour:
Stage I
T1N1M0
Stage II
T2N0M0
Stage III
T3N0M0
T1 or T2 or T3N1M0
Stage IV
T4N0 or N1M0
Any T, N2 or N3M0
Any T, any N, M1

By the way, I don't remember it all!

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Thanks for the reply Pauline.

Change in eating habits, well for sure. I'm on permanent PEG feeding as I just can't swa;;pw any solid foods. I can manage porridge, but even soggy biscuits give me a problem.

Happily I can drink virtually anything, except spirits and anything really acidic.

I've no dry mouth, other than when I first wake up in the morning.

Hoarse voice, well I don't know I'll have to ask. That might sound crazy but my speech, to my inner ear, sounds so comical I've never thought whether us hoarse or not.

And a further thank you to Dr. Joshi for the explanation of those technical abbreviations. That I've printed for future reference.

Hi Vinod and Pikeman, Thanks for the welcome.

That really is a great explanation Vinod. I've printed it out too, although I'm still not convinced of a self description!!! Maybe TXN1. Should maybe Tis be added? I think it's just the kind of thing that should exist as a cancer leaflet for patients. I wonder why it is that the Americans seem to know their case file this way yet we don't seem to know what stage we are at. Maybe because so many claim health insurance they have to define their case.

Pikeman at present I am at least able to eat small amounts of specific foods. Nothing tastes like it did, as time goes on I think it would be a small price to pay if the radiotherapy worked. Some days food has a better taste than other days. It just varies a lot.

Some biscuits seem better than others. Safeways round shortbreads dipped in tea crumble better than other shortbreads and travel across the mouth better than some do for me. I found Jaffa cakes dipped in tea quite good for me too and they come in 3 packs so are handy to take out with you. I always make two cups of tea for any food at the ready as I eat now, as sudden choking easily is an issue. Most food I put out now is teaplate sized portion wise and I often leave half of it, but I keep trying new things. The more I read about other people not eating the more I think what I can eat is at least something. There would be no fat people if they all had this taste problem!

I've not had a PEG, but had nasal feeding for 4 weeks and felt very weak and invalid like during that time. It was interesting how people in shops and taxi drivers treated me differently. I don't eat porridge right now as I lived off a tabespoon or so of it alone with milk for most of the radiotherapy period. Maybe I should try it again. Good stuff.

HI Pauline, I read with interest and """join the club""" comes to mind. I am the same I only eat with a teaspoon and when i start to feel hungry I dunk a biscuit whic is usualy choclate and i get it every where. You say people outside treat you different can you explain swop notes to see if I am not going paranoid I have just done my account of life since being diasgnosed in November 2001 you can read it if you like DBs story.Please keep in touch .

Paul

Morning Pauline, couldn't agree more re. Vinod's techno jargon explanation. I suppose at some juncture I should find out where I was at amongst all thos TN's etc.

Incidentally, if you haven't already been there Paul's story is worth reading. He's had the guts to print warts and all.

And don't beleive that business about there being no fat people if everybody had the taste problem.

When I started on this complete liquid feed (which comes in one flavour - yuck) I weighed about 8 stones, I'm now up to 13 stones. The plus point is that I can regulate my calorie intake quite easily. I started off on 2 litres, i.e. 2000 cals., of feed per day. I now do between 1.4/1.5 litres per day dependant on other calorific intake.

Stay well, and keep posting

Hi to you all.
Paul I read your story with interest and can see you have a real and immediate battle again on your hands. I sincerely hope you will get the right treatment fast.

People outside don't treat me differently now - I meant that when I went out when I still had the nasal tube taped to me back last December taxi drivers started to open the door for me and even do my seat belt up as if I was incapable. Also when wearing the nasal tube I went shopping one day and even though I used to tape it discreetly suddenly people grasp you are wearing it. Supermarket assistants rushed over to help me pack. A first! Someone in Marks said I should have made arrangements to use one of their wheelchairs, despite the fact that my legs worked perfectly well!! I expect I probably looked odd as I was still burnt from the radiotherapy being so fair. I could feel people looking at my stange tan!

Like you one other problem I have is when using the phone. I like to have a cuppa or some water to sip beside me and then I am ok. If I talk for say 10 minutes the dryness gets so bad that my words start to strangle themselves so to speak. I think I am aware of this more than other people though. It's ok with people who know about the problem, but harder when talking to business clients. Just a sip seems to solve the problem so I have water bottles at every phone. So we all get misunderstood on the phone Paul, but I know how maddening it feels too to be asked to repeat something especially if diction has always been clear in the past. Saliva is everything. I drink fluid all day constantly. Do others do this?

You can see the pictures of me at various stages of healing on my website. I'll just give you this url which will lead you to earlier pages.

http://www.fashion-ebooks.com/Radiotherapy_3.htm

Pikeman I think that although I don't fancy it if it ever comes to it at least the PEG helps maintain body weight. I have to say that I cannot stand Ensure or that emulsified liquid peanut oil (Cal something) that looks like cream. The Ensure gave me awful stomach pains and it was only after taking it for a week and stopping it that a radiotherapist told me it doesn't agree with everyone.

Do you miss real food? At first I felt really miffed, but the longer my diet is restricted to specific items the less interested I've become.

Former gourmet talking too.

Wowee Pauline - I've had a brief look at your site. I'm almost afraid to babble on. Very, very professional.

Looking at the pics. you must have suffered terribly from the radiotherapy. My wife and I both said """Ouch""" whilst viewing. At least it does seem to be improving with time.

Food, well I can't claim to have been a gourmet, but I used to love my food. Italian, Indonesian,
French (but not classic), Punjabi and let's not forget good English.

Having said all that what do I miss most - well would you believe TOAST.

The feed I'm on is """Fresubin Original Fibre""" and it's given me absolutely no problems.

What does bug me is that I can only tolerate a dosage of 225 ml. per hour. So you can work it out yourself how long it takes for me to take 1500 ml. I know many people feed overnight, but I've tried and I'm too much of a restless sleeper to try again. I finished up with ucky mess all over the bed, soreness round the PEG site, all in all not a happy feeder.

The only other moan I've got is the amount of mucus I;m still producing, Can be a bit embarrassing!

All in all though a small price to pay for survival.

Now I'll go an hook up to the second part of to-day's feed.

God bless

Pikeman

I think everyone suffers with it, but believe when docs know where it is only specific sides get blasted not everything, so the burn would be less noticeable if say on just one side of the face. The patch of white in the middle highlighted it.

Were you very burnt? I don't think people have any real idea of what radiotherapy is until they have it. I also think some people are more affected than others and some seem to sail through it. It sounds as if chemo is similar in that some sail through it and others say they feel like nothing on earth.

I also would love to have toast too. The smell of it drives me mad. In fact it's the really simple foods like a water biscuit and cheese that appeal most.

The only half satisfactory way to this has been a very slim rice cake with very runny goats cheese and 2 cups of fluid to wash it down.The strong taste is good and sticks less to the roof in a cloying way than a cheddar type does.

I had similar trouble with my nasal feed and could only tolerate low dosage and so it took forever. About 3 days before I stopped using it they brought me a portable machine with a back pack so at least I was then able to potter in the kitchen and move around more easily. Otherwise it seemed to take the whole day lying on the bed. BTW I could never feed overnight either at home although when in the hospital bed they insisted on it. Sometimes you all but strangle yourself turning with it!!

Are you mobile when you feed or is it a sit and be activity?

HI Pauline, To your question about ensure I do not beleive it maintains your body weight I lost two and a half stone and cannot but it back on.
HI Pikeman, When in hospital I used the machine but when I came home it took them weeks to deliver it so had to use the boxes 6 a day just kept me ticking over but I only really used it to give me the energy to get out of bed ,shower and get for my Radiotherapy if it was not for that I think I would have deterioated alot more.I was going to give the site a miss today but here I am again like a bad penny
Paul

I find now I do not like any foods that I particularly associate with the radiotherapy. I hated Ensure and the Cal peanut emulsion product gives awful indigestion - not surprising when it is pure fat.

Any news on your admittance Paul?

Hi Pauline, well to be honest I feel pretty guilty about everything.

To date, I haven't had any real pain. A little bit of discomfort but no pain.

Radiotherapy, burnt? Nothing, I even started to wonder if the machine was working. Then I was told told my neck had gone pink, and that was it.

However, I do find that, even after all this time, if I don't use moisturiser or sun cream (Factor 25 of more) I do feel the effect of the sun and wind. It's not painful but a noticeable tightening of the skin.

My wife had chemo after her mastectomoy, and she had a really rough time with that. She was supposed to have 8 treatments but at 6 they called it a draw. Now, thank God, apart from lymphoeda in one arm, she's fine.

I've now got the back-pack thing which does enable feeding on the move. But I've found that if I try do anything in the least strenuous whilst feeding I become nauseus(?).

However, it does allow me to go and watch the cricket. So far nobody has noticed that I'm feeding, and even if they do so what!

And Paul, you really must careful. You're becoming addicted to the message board. You do know, don't you, that there's no cure for it?

Look forward to further news from you both

Pikeman it seems to me that few people these days are untouched by cancer. I hope you and your wife continue to do well. Treatment affects individuals differently - you may be made of strong stuff!!!

My husband had a skin cancer removed 2 years ago so at least he understands my not wanting to be in the sun. I think the stats I read were 1 in 3 now and 1 in 2 people by 2010 will have some form of cancer.

Your comment about feeling gulity is interesting. Compared to people on the ACOR Listserv who have had 10 ops for this H and N disease I too feel guilty.

I suppose it might come to that one day. But I'll worry about that later. Don't feel guilty you have suffered enough. Having to live with a PEG can't be fun. I am sure the only way to cope is to accept the things we cannot change and get on with life.