I am looking for a mouth cancer support group. I need to talk to others who have been through this, survived it and who will help me do the same. I am scared and know that in my heart whatever this is I am fighting that I cannot do it alone. And I don’t want to do it alone either. I am sending out a distress signal now in hopes that someone will help me with my search. PM me or email at marcies1960@aol.com.
Original Post
Hi Marcella

Welcome to the club no one wants to join!

The time between discovery and diagnosis is probably the scariest time--we've all been there. The best pieces of advice I can give you are 1.Don't go alone to these early appointments (if at all possible). You'll never be able to remember anything they tell you because there's SO much, and your mind's already going a mile a minute. 2. You'll be tempted, but don't try to research oral cancer on line. It's nearly all doom and gloom.

When are you supposed to get your results? My own biopsy was more a confirmation than anything--I'd already figured that I had tongue cancer. But then, I've always been of the "expect the worst, you'll be pleasantly disappointed" mindset.

Please let us know how it turns out.

Julia
Marcella - sorry to hear of your diagnosis.

You will be feeling highly anxious (obviously) . Do get help about this - see your GP - ask for advice about anti-depressants. They helped me enormously in coming out of the depressive fog of (what felt like) impending death.

That was 12/13 years ago. The treatment has a high success rate - it can be very arduous - but very copable with the right support.

good luck and keep us informed please

tony k
I am scared to death and do not know what news I will receive when I go back on September 13th for my results. I don't need any more bad news and sure don't want to think about dying right now. I have been looking for whatever resources I can to help me and have begin changing my diet. Cutting out sweets and adding vegetables and fruits and drinking lots of water and no more soft drinks is what's on the agenda. Any other ideas? Please send them along.
I already have anti-depressants. I already knew deep down that this was tumor of some sort. How did I get this? I have never smoked, don't drink and drugs has ever been an option. I live a clean good life. This isn't fair in any sense of the word. I have been a Christian forever and am married to a minister. People treat me like I have done something major wrong for something like this to creep up on me. What did I do? I have major questions that are more important than that one though. Chemo is the number one cause of death in patients - I know - my sister and my mother both died from strokes caused from the chemo. Is there another option should I have to go that route?
Hi Marcella,
I will try and leave a comment here or on your blog later.
Suffice to say that the negative power of the mind is unbelievably powerful - it has rendered me immobile at times over the last 20 months.
I have been on citalopram for 7/8 weeks and am feeling happier and much less anxious/worried etc. I have been extremely psychosomatic in my behaviour and had symptoms which I can barely believe was down to my own mind - but sadly - it has been.

I also know that, until things are diagnosed, you should try not be hyper anxious. I have had a number of mouth biopsies over the last 14 months - all were negative.
A positive is that these cancers respond very well to radiotherapy. I had secondary tumours in my neck lymphs. 60 neck lymphs removed (approx) and a large neck muscle. After radiotherapy I recovered well. Final RT was in dec 2004.

The only problems I have now are with my mind.

regards Tony K
That's all good to know and makes me feel so much better. The word cancer is a bad word to me - I lost my sister to ovarian cancer (it wasn't the cancer that killed her - it was the stroke from the chemo.) And I lost my mother to ovarian cancer (it wasn't the cancer that killed her - it was the stroke from the chemo.)
Two years ago I had a tumor in my right ovaries - it was benign. But they did a full hysterectomy and got everything out that even looked suspicious. But like you, it's the mind thing!
My mind has laid out plans and scenes for me the last few weeks that are both scary and mind boggling. I have been deprived of sleep and stress and anxiety have taken over everything I do. I have been a monster to everybody and I cry at the drop of a hat. I am tired and grouchy - next to being a beast when provoked in the slightest way.
My life is a mess right now as a result of all this. Any advice I get is much needed.
Thanks so much for your response...
Hi Marcella,
I've enjoyed reading your poetry from your website. Especially the beautiful, expressive simplicity of the 5 line poems.

Don't forget - as well as anti-depressants I also gained relief from taking sleeping tablets (zopiclone). It was nice knowing I was going to get 7 hrs strees free sleep.
Not to be taken long term though. Do discuss these options with a doctor.
The mind is so powerful - it's a shame it can effect us in such a negative manner.

regards tony k
Last edited by tonyk 2
I just got my results back - I do have cancer called Squamous cell carcinoma. I am made, upset and want to scream right now. How do I get through something like this? I feel cheated, hurt and all apart right now.
What are my chances of recovering from
Squamous cell carcinoma cancer? What if it has spread? What do I do with this? Has anyone reading this post had this kind of cancer and survived?
Hi Marcella

This can be a very survivable cancer, but a lot depends on the location and degree of disease. I had SCC T2N0M0 (stage 2, no lymph node involvement, no metastases) of the tongue nearly 13 years ago.

When I got my diagnosis, they told me that the tumor was "encapsulated." I thought that meant I'd go to the doctor's office, get the thing removed and go skipping tra la, getting on with my day. HA! Surgery wasn't as bad as I'd imagined, but still not a walk in the part--I'll spare you the details. The pathology report said that chemo and radiation were not warranted.

Have your doctors come up with an attack plan?

I hope it helps to know that you're not alone in this.

Julia
Can anyone help me with a diet plan that will help this cancer? Advice on the kinds of food to steer clear of and eat would be appreciated...
Not yet - I go back next week for x-rays, or whatever they do and then on the 15th I meet with the surgeon and cancer doctor. Any suggestions on what I should and should not eat...
Very sorry about the bad news Marcella - My SCC
was quite advanced - secondaries in my neck lymphs too.
These types of cancers (generally) are found earlier than others so survival rates higher.

The treatment of SCC by RT is most effective - so good news there.
Where was your biopsy taken from ? (if you don't mind me asking). I feel bad for you as I know how debilitating the stress is.
Make sure you have a good support network around you if poss.

Keep positive - success rates are good -
tony k
Hi Tony, At Louisiana Health in Shreveport. live about 50 miles south of Shreveport, LA. I am scared - and i am trying to figure out what to eat, what not to eat, how to handle this and anything that will help me.
I was wondering what part of your head/neck/mouth they took the biopsy and was this the primary site.
In terms of diet - just eat what you are comfortable with (plenty fruit and veg, fish etc - maybe stay away from sugary foods.
I use a nutribullet to blend up my fruits. I cant chew some of them well enough (particularly apples) - so I prefer to drink them
kind regards - tony k
They took the biopsi on my front bottom gums. Sorry about that. I need to get a blender and start making fruit smoothies I guess. I too cannot chew hard fruits because the tumor has loosened my bridge - the teeth - = it's just floating in the mass and makes eating very difficult. My daughter found a cancer detox plan that I am trying right now since I am trying to get off the sugar and red meat and stuff... water melon, kiwi and strawberries and plenty of water for 3 days. Then add them to my diet everyday after that...What do you think?
It's not unusual for lymph nodes to swell. It means they're doing their job and are not necessarily cancerous at all.
I am sure the medical staff will check all this for you. If some cancer cells have travelled at least they should be encapsulated in the lymph glands and therefore much easier to sort out.

I use a Nutribullet which macerates all parts of the fruit etc so no part is wasted or extracted out.

regards - take care - tony k

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