support group

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
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
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
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
quote:
Originally posted by tonyk:
Hi MARCELLA,
unfortunately I know nothing about alternative treatments and/or holistic treatments. My treatment was surgery (neck dissection) and radiotherapy (lots of it)

kind regards - tony k


i have to go for tests and blood work tomorrow - will keep everybody posted
I can say one thing with absolute surety (as regards myself - 100%)
When I was highly stressed and anxious about my cancer (and subsequent "false alarms") I felt pains, aches, buzzing noises (ears), in my neck and other parts of my body.

It was all stress related - and I am not for one minute saying this is the case for you - if you feel pain - you have pain. But do be aware of the power of the mind.
See your doc for suitable meds.

Good thoughts to you - tony k
my jaws ache, my ears ache and ring and my throat hurts. there is blood in my mouth every morning - a drainage from the teeth more than likely. the tumor continues growing with each passing day. i am at a loss for words right now, not knowing is driving me crazy. i want to go to battle with all the knowledge i can handle but right now, not knowing anything is really hard...
I am fixing to have surgery on October 18th - the cancer is in my jaw bones - they are going to have to remove my entire bottom mouth part and replace it with a bone and tissue from my leg, I will be on a ventilator for awhile, and have an air pipe in my throat and a feeding tube in my stomach. I may or may not have to have the feeding tube forever and I may not be able to talk or swallow for a long time either. It will be a 12 hour surgery and they may have to do radiation after that and then the chemo. And they are taking out my lymph nodes.
I have had a ct/pet scan about 10 years ago.
As far as I know they do the whole body.

The radioactively tagged sugar solution goes all round the body. It is picked up by the scan showing areas that are "using up" more of the radioactive sugar soln compared to other parts of the body eg - areas where cancer cells are metabolising.

Hope this helps Marcella - regards - tony k
Cancer has surely changed my life in so many ways. All these years I have taken my health for granted, and eat anything and everything, started getting a little overweight, and I didn't get regular dental check ups like I should have. That was because of the lack of health/dental insurance and funds ... nuff said. But now that I have mouth cancer, things are different. The very things i took for granted have come back to haunt me in some ways. So I am making a fresh start and doing the best I can to turn my life around and do what is best. Take a journey with me - visit my blog at https://journeyofsurvivalblog.wordpress.com/. I will try to post everyday...
Thanks for a great blog Marcella - it is very inspiring. You are a credit to us all. I am feeling a good benefit from my use of anti-depressants - something to think about if you need to talk to your doctor about it.

I presume your type of cancer (head neck cancer) - is a squamous cell carcinoma (these are the type of cells which are prevalent in that area.

It is well known that these cells are very susceptible to radiotherapy treatment. Indeed some people have RT as their only treatment (Actor Michael Douglas had throat cancer - successfully treated by RT).
Some people have a combination of both chemo and RT.
These treatments (tho tough to contend with) are clinically proven to be successful in the treatment of head/neck cancers.
Don't discount them Marcella - just make sure you get the advice of your medical team first.

kind regards tony k
Hi Tony

Thanks for the nice comments. Yes,i am following through with my doctor's advice regardless how I feel personally. I have mouth cancer - Squamous Cell Carcinoma. The last few weeks I started a mission on my own to find answers and try to find a cure for my cancer or find ways to stop the cancer cells from growing. I think what I am doing is working in that aspect. But needless to say I still have a large tumor and cancer but i have hope. I feel like I can do something to help myself - that has helped me tremendously. I do suffer from chronic depression and di long before I got cancer and was on anti-depressants for awhile and found myself sleeping all the time and staying tired so I quit using it. My doctor was furious because I stopped using it but I have a life and don't want to spend it in a sleepy state or walk around like a zombie.
However, on a brighter note, when I started using the immune boosters and cancer cell fighters and vitamins, not only did my immune system start to build up, i started feeling younger and alive again and the depression is gone. If anyone wants to know what i am doing to help myself just let me know, Email me at marcies1960@aol.com. Check out my website at https://journeyofsurvivalblog.wordpress.com/. I am still under doctor's care and will continue with the surgery and all but i am doing my part in helping myself. Hope this helps...

Add Reply

Likes (0)
×
×
×
×