Hi everyone

After much hesitation, I finally joined the OCF thanks to my new found friends Christine B and Gabe! I am still unsure about the workings of this site so please bear with me as I learn!

My name is Liza, I am 43 and was diagnosed with SCC of the buccal micosa which arose from Oral Lichens Planus (very rare, I am told!!)I was being monitored by a dental surgeon for months. The Lichens eventually failed to respond to any treatment, the pain changed and it started to look a little angrier than normal.A biopsy was done which much to my dismay came back positive for early stage SCC. I then got referred to an ENT surgeon who recommended I have surgery and a neck dissection. Surgery was on 27/9/2010, 10 hours long, nodes were negative and all margins were clear.No radiation or chemo was needed at the time.

A few weeks ago, I found a lump in my neck, the size of a small pea. Went to see my doctor who who sent me for an ultrasound of my neck and a biopsy. However, the ultrasound showed another lump just under my jaw bone which I had noticed a few weeks after surgery. I just thought it was part of a gland or something to do with the surgery.The ultrasound report said it was nodule in my submandibular gland. But, I was told the submandibular gland was removed during my surgery!!My surgeon is cautious about what he thinks although he seems to believe the lump is something that is part of the work done in that area during the operation. God, I hope he is right!! But, I am terrified it will come back positive. Everyday is getting harder to get through as I wait for the phone to ring. All kinds of thoughts are going through my head..I have never experienced such fear in my life. I am trying to keep busy, and just praying to God constantly to give me courage and strenght.

I have already been in touch with Christine B and Gabe who have been so helpful and kind with her advice. Thank you Christine and Gabe! I was just wondering if there are any more buccal mucosa cancer patients on this site? It seems to be quite rare.

Have a nice day :-)

Hi Liza:
I have not had buccal mucosa cancer, but understand it is very rare. I pray that you are rid of any cancer now and that your biopsy will come back negative. I know exactly how you feel about being so nervous; I go nuts until I get results of any test(s) I have, but I pray the good Lord will be with you and you will have good results. Happy to know you. I'd say try to relax, but I know that's not possible. Let us know when you hear something.
julieann

Hello Liza!

Welcome to OCF! Glad you found us, sorry you had to!

First...ease your mind. We have a saying on these boards that it's not cancer until the biopsy says it is. Waiting can be a cruel game, but put it out of your mind. Just breath and believe. Know that fear and anxiety are only in your mind, thus they are in your control.

If you are having trouble controlling those emotions try chemical assistance. I'm an advocate of medical marijuana. Now I do NOT condone smoking it...but vaporizing it or using it in food products are just the ticket. It'll help your appetite too If you're opposed to that, ask your Dr about anti-anxiety meds (scripts never worked for me) to help you get your head wrapped around your emotions. Yoga or meditation is another route...personally I would combine MJ with the yoga as it helps keep off the unwanted pounds and keeps my swimsuit physique

Anyway, keep your chin up and keep using this site for the great advice and support that people like Christine are so adept at!

Eric

Thank you for the welcome Eric!! Nice to meet you! Fear and anxiety are definitely horrible emotions..at the moment I am managing with meditation and prayers.I constantly remind myself that living is for today, tomorrow is not in my control!! Plus, I have to stay strong for my family. But, heck its not an easy road to stay positive all the time so I give myself permission to fall apart if I have to :-)

Keeping fingers crossed till the results come back. Till then I hope to just breathe!!

Liza

Thank you Julieann for your well wishes. Appreciate it greatly :-)

Yea Liza, welcome!!! So glad you joined OCF!!! Now you will have the whole world in your corner

Christine, it's because of you that I put my fears aside and told myself I had nothing to lose but everything to gain. So, thank you for being there for me and for the special person that you are :-)

Liza

Hi and welcome to OCF from a fellow Aussie Liza,
I am glad to see you found your way here and once you get to know us you will find we are not scary at all
There is nothing wrong or even unusual about the fear and worry you are experiencing and waiting for test results is just the pits! How long do you have to wait?
When you get a chance just add a signature so people here can see that summary every time you post and this helps with replies.
Got to MY STUFF, PROFILE, scroll right down to the bottom and add it where you see
Signature: (up to 300 characters) You may use UBBCode in your signature.
You can cut and paste mine or someone elses and edit it to fit your profile if you like.
Thinking of you and wishing a clear result from your tests but in the meantime come here for any questions you have.
Gabriele

Hi Gabe

Thank you for your help..I did have a signature but it disappeared somewhere! Awaiting results is definitely the pits...it sucks to be in this position.The biopsy was done last Thurday so I hope the results will be out today or tomorrow.I am encouraged by so many stories of courage, strenght and survival on this forum...I wish I could channel some of that courage at the moment!! I hate being this terrified! Anyway, there's not much I can do apart from keep busy and try to focus on other things.

Thank you for your positive thoughts..I appreciate it so much. It's heartening to know that even strangers from the other side of the country and/or world are thinking of me.


Have alovely day :-)

Liza

Hi Liza

I'm sorry to hear what a tough time you are having at the moment. Waiting to hear biopsy results is awful - somehow, when you KNOW, you can deal with whatever the outcome. Members of OCF understand what you are going through. We have been there in one way or another. I had a neck dissection also and there is a lot of scar tissue and swelling involved, hopefully your symptoms are tied up with that.

I'm so pleased you have joined OCF. As Christine says, now you have the world on your team! Please let us know your biopsy results.

Have you looked at the main OCF site? It is full of useful information.
Thinking of you and wishing you well, love from Helen

Hi Helen

Thank you so much for your post..I am in tears right now with the support I am receiving from people I don't even know..what a wonderful world it is!!

My surgeon seems to think it could be a scar nodule..pray to God he is right but that doesn't mean I am not beside myself. I find my thoughts drifting to areas I don't even want to comphrehend..bugger this disease..I hate it so much!!

It is so great to see you are a long time survivor!! Congratulations! I love seeing so many people actually survive this illness...gives me hope.


Anyway, thanks for your support..I am so gald I joined up!!

Take care Helen

Liza :-)

Hi there, welcome to the group, but sorry you had to find it.
I too was told I had lichen planus on my tongue, but I know mine was a misdiagnosis. they gave me antifungals that almost always clear it up and it did nothing and when they finally biopsied it was stage 3.

I know how the waiting game is and how it feels to hope someone is right. My most recent scan showed new borderline hypermetabolic activity on my lower jaw, and doc isn't worried, doesn't even want to biopsy as it's "borderline" and "hypermetabolic activity" can be soooo many different things. So I try to not let it bug me and just go with what he says, but parts of me just want them to biopsy for peace of mind.

I will keep you in my thoughts that your biopsy comes back negative and that it is just scar tissue. I know i have a few lumps and bumps that are scar tissue, but they were from surgery and radiation, so I will pray that that is what yours are too!!

I agree that you can't be positive all the time, and i feel it is also ok to let yourself fall apart, but I have only allowed myself so much time to fall apart and then pull myself back together. Can't be strong all the time, those that can, I just don't know how!!

You are doing an amazing job fighting this, keep it up!! Live each day to its full potential and try your best not to let the anxiety and worry take over your day!!

Hi Liza,

Hopefully all is good (from a fellow Aussie, Sydney!) and I'm glad you found OCF.

I had tonsil pillar cancer and a rad Dissection, plus radiation 7 years ago. The radio gave me a bit of a run-around, with scar tissue in my throat. Have recently had 2 gastroendoscopies with dilation and it is so goo to be able to swallow much better! I mentioned to my surgeon about a lumpi I could feel in my neck where the secondary tumour was removed, so he checked while I was under GA. Luckily it was only the Atlas poking through what remains! Phew! I hope you're as lucky as I am ;-)!

Cheers!
Meredith (who will be over in WA sometime to soon to visit my uncle who just had a shunt put in his brain (he has frontal lobe pressure and hopefully this op will help him walk again!)

Hi bethers0808 (sorry don't know your name) and Meredith,

Thanks for the welcome and for the positive comments. bethers 0808, my lesion started when I bit my cheek really hard about 2 and half years ago..saw an ENT doctor who was not too concerned. The lesion kept coming and going until about 2 years later when it stopped healing. Saw my dentist who referred me to an oral surgeon and he diagnosed it as Lichens Planus. Got given steriod creams,they were useless and steroid injections which cleared it up for a while but then I noticed the pain had changed. Finally had a biopsy which came back positive for SCC (a day that my life changed).I appreciate your comment that I should be allowed to fall apart!! How can one remain composed all the time when you are fighting this battle? Wish I could but falling apart actually releases a bit of stress and tension for me and boy I seem to be very stressed lately!!

Meredith, nice to meet a fellow Aussie.Congratulations on being a long term survivor...like i said in my above post, it gives me hope. Praying hard that my tests are negative!When are you coming to WA? Are you coming to Perth? Hope your uncle gets better and the shunt works.

Wishing both of you a very nice day :-)

I just got a phone call that delivered me the worst news ever. My cancer is back and its in my neck where they did the biopsy. Having a PET and CT scan on Friday. I am absolutely terrified. Looks like I have to have surgery, radiation and chemo. How am I going to cope..can someone please give me some advice because at the moment I just want to run away somewhere and hide. And plaese pray for me.

Liza

Liza, Im so sorry!!!! I am praying for you. Im so glad you have become a member of OCF so you have so many people helping you to deal with this. You have gone thru this once and now you must do it again. It can be done but its not easy especially doing radiation.

Right now try to eat all you can without worrying about calories. Eat all your favorites, its ok to gain a few pounds. Your eating will be changed for a while. Dont worry about this, its only temporary.

I will keep you and your family in my prayers.

Liza, I am so sorry that you are going through this again. I will certainly keep you my my prayers. We are here to support you! Be strong and try to have faith. Like Christine says eat all you can and enjoy!! no guilt!

Liza,

There are many of the members on these forums that have survived multiple recurrences. Charm and Christine are two who I look to as examples that one cannot only survive a recurrence but really live afterwards.

It's understandable that you are afraid, however know that we are here for you as you go through this. You can do this thing. You are in my prayers my dear.

Keep your chin up

Eric

Having it caught early is half the battle and it sounds like you are right on top of it - so all good! You can and will get through this and there is life on the other side. Just remember that you can get through anything if you close your eyes, and that we are all hear to walk each step with you.

Donna

Sorry to hear that it came back as cancer, but you are a strong woman and you will get through this. I know it's tough, but you can get through this. You can talk to your docs about depression and anxiety meds as they will help you through this, I was put on them from day one when i was diagnosed and it helped me. I will keep yu in my thoughts and hope for quick recovery.

I am so sorry that the news was not good Liza.
Words you will see here often are �one step at a time� and �breathe�.
Now you need to see what the tests on Friday show.
You are already getting good advice from people who have been through this and are here to support you now.
As per my PM if you want I am happy to chat. As time goes by you need to come here often and lean on your OCF family.
Gabriele

You will get through this, Liza, because that's what you have to do. Everyone here will support you all along the way. So glad you found us, even though we wisht that you didn't need us.

Hi Liza:
I am sorry the results of your biopsy weren't good, but with the radiation and chemo, you stand a good chance of survival. Recurrances are so bad, but they can be beat too. So, do what you have to do and get cancer free. I, along with the other Forum members, will be sending up big prayers for you. YOU CAN DO IT!
julieann

I am very sorry to hear your news, Liza. All I can say is that your treatment will help and hopefully cure.

I did not find radiation easy although I had great help from docs, technicians etc. However there is no doubt that it cured my cancer which had spread to the lymph system. I am nearly 8 years from end of treatment.

As you now know, OCF members are here for you as you begin your new treatment journey. Thinking of you, love from Helen

Thanks everyone...it's a battle trying to stay focused. I am not ashamed to say that I am petrified of the treatment and the outcome. How do you guys stay so positive? I would love to hear about the one's who have had recurrences and are living proof that survival is possible. I keep thinking about my family and what they are going through...and I feel so sad. My chest feel so heavy and has this awful feeling 24/7..I am trying to deep breathe, pray, meditate but my mind sure has it own plans and is not allowing me to have any peace.I really need to dig deep for the courageand peace that I am lacking at this point. Any advice would be appreciated.

Liza

Liza

So sorry to hear the bad news about the cancer coming back. My wife and I were in total shock when mine came back and even my ENT surgeon teared up as she described the salvage surgery and exceeding the maximum radiation. Words can't describe how it feels to be told the cancer is back and feeling sad and depressed is normal. In fact you would have to be some psychotic Pollyanna (just my outrageous opinion) or a fracking Saint to accept this right off the bat.
I neither am nor was either one, but luckily we don't have to have immediate peace. Surprisingly enough, LIFE will bring you there although nowhere as fast or straight as you would like.
Sometimes I consider quitting posting on OCF because I feel like if I was a newbie and read about just how badly this has all turned out for me despite being HPV+ and having a top notch CCC, I'd worry. But then I see a post from someone who has been told this terrible terrible news. The fear that each and every OCF patient and caregiver has deep in their hearts: the cancer is back again; has turned into bitter reality. But only someone who has survived and thrived can reassure that it can be done. I did it, you will do.
Trust me, there is life after cancer coming back. It's a good life, not the optimal one. It's not a paradise, but it's not hell either. It's just life. You do have the courage already inside you, but just like the Cowardly Lion character in the Wizard of Oz, you don't realize it yet.
I can't eat, I can't drink, my speech is impaired, yet I would not trade my life for anyone else's. Why ?: because you can't trade your life. The key to moving on is to stay focused on the NOW not fantasy. Do the TX, the surgery, the radiation, the chemo. Then recover. Give yourself permission to truly mourn the life that is no longer yours, but open up to the life that you will have. Read the Book of Job in the Bible. Read "Why Bad things happen to good people". Or for a more pratical approach, read the American Cancer Society pages
When your Cancer comes back
Last but not least, EAT, DRINK and BE MERRY now. Heck I still put wine down my feeding tube. It's just the Catholic in me but God does have a plan for us all, we just can't see it clearly here (although that plan does include wine, see the first miracle: the wedding at Cana) Seriously, when this is all over, I'll bet you can eat and drink but just have some scars and speech therapy. Is it easy to accept this? NO. But does it get better with time. YES
Best Wishes
Charm

Liza:
Isn't CHARM great? No one could have said it any better than he. We are so blessed to have him on the Forum. He told it like it was/is. He and others have done it, and you can too. So, never, ever, ever give up. We are all here for you.
Big hug from julieann

I for one Charm am so glad that you continue to post on these forums. You are and have been an example for me and I hope to be able to meet someday my friend.

Liza, for what you are going through you've found the BEST place for support and comfort. I'm glad you are here and I hope you let the love and hope we have take hold in your heart.

keep your chin up

Eric

Liza, just look at how many friends you have in your corner already. When you see others who have been thru recurrences already are here encouraging you, it should make it a little bit easier. Nobody wants to go thru this once let alone twice, but it can be done. Im so glad you are able to see the compassion that makes OCF so great.


Charm, this is one of your all time best posts!

Charm, you are another person on this site that has inspired me. I am going to read your post as well as all the others to give me the courage I need. Sometimes, I feel like a caged animal. I guess it will take a few days for my brain to process all this. I feel so unlucky to get a reccurence after 4 months. I thought I was healing so well :-(

It's so strange that ever since I went to have my ultrasound, I feel so many things not right around my throat and neck area..almost like its psychological. Wonder if anyone else experienced these feelings?

Thank you once again to everyone for their prayers, advice and positive thoughts. I am very blessed to have met you all. God bless xx

Liza

Liza,

You are right, truly inspirational people, I am so glad that you have found this wonderful community of people that are going to be able to support you through this. Of course I will be here for you too and like I told you, you had the courage and fight to do this before and you can do it again.

Claire x

OMG Claire!! You have just made me cry. The fact that you joined OCF just to support me is intense, loving and just beautiful. As you can see from all the posts I have received in my short term as a member, these people are true heroes who have given me back hope, confidence and faith in human kindness! And of course having a friend like you close by is a blessing too xxx

The brain is a wonderful thing and also our worst enemy at times. Is the symptom we identify "real" or is our brain just "messing with us". I have truly found it amazing how symptoms and issues I was having instantly disappear upon hearing the words "all clear". Let your doctor do the diagnosing. I have tried many times to do it myself, but turns out I'm not very good at it!!

Another way of looking at your quick recurrance is that it is good that it happened now while you are being so closely monitored. You know then that whatever the problem is has not been lurking for long - early treatment is the best.

Hugs

Donna

Hi Liza,

I'm sorry I'm just finding this post now and I'm sorry to hear the cancer is back. My cancer was treated surgically so I'm afraid I can't help you with what to expect with your treatment. I can help you with the emotional part...which I found to be hardest. First, you joined the best group and you will get the support you need.

I respect your ways of trying to deal with the stress like meditation and prayer and I'm also happy to see you plan to allow yourself time to fall apart, you are human and that will happen. A lot of people here, myself included, took medication to help with the crazy emotions of cancer. I took Lexapro and saw a therapist and I'm happy I did. It is important to stay positive and level headed as much as possible and I feel like the Lexapro helped me do that. Along with my family and my family here of course.

When will your treatment be starting?

We are all here for you and I look forward to supporting to you during this hard time.

Hi Suzanne,

I had my CT and PET scans done yesterday and am seeing my surgeon on Monday. Treatment plan will be discussed then. For the time being I am trying to come to terms with the situation as best as I can. Sometimes I am terrified, other times I feel strong and confident...what an emotional rollercoaster this is. A few weeks ago, I was feeling healthy and on top of the world...its amazing what a difference the word cancer makes to your pschye, especially one that has come back so early.

What gets me through is my family, friends and my new family on OCF...the stories of survival give me immense hope.



I thank you all for your prayers.

Liza

Hi Lizzy
I know how hard this weekend is waiting until Monday. Just last weekend we were in the same situation with my husband and we got good news on Monday! It does happen. My husband just finished TX for a large reoccurance 12/17/10 and recently we thought he was showing several symthoms of the cancer returning. The Dr. said if it is back this soon it would not be a good thing. So with heavy hearts we were preparing for the worst and got the best news.

I remember well the shock last Sept when we got the news the cancer had returned, the extent of the cancer and the needed treatment. But if your news is not good, to live there is no choice but to go forward with the threatments and while it is not a walk in the park you can do it just like so many here have!

Praying and thinking of you this weekend that the time will fly by! PS: We took an overnight trip with friends to a casino and had a fun time - helped to think of something else and pass the time quickly!

Karen

Hi Liza, sorry I haven't been on to see your posts. So very glad that you found all of these wonderful people here. They have helped many of us fellow Aussies. I for one would have been lost without all of these guys when Steve was going through treatment. Steve's cancer was also in his lymph nodes. When he was diagnosed he was stage 4 and we were not given any hope. He will be 18 months clear this month. Even his doctors are inspired by him as they have told us they didn't expect this outcome. Stay positive Liza, there are many people who have beaten this disease even after it's gone to the lymph nodes. Come here as often as you need to, even if just to vent. Everyone here understands exactly how you feel and will offer the best support. Keep us updated and I will be thinking of you on Monday.

Sorry Lizzy - somehow I missed the page where you wrote you got the bad news to your bio. So sorry to hear that and we know how you are feeling waiting for the next step. Our thoughts are with you.

Hi Lizzy. Thinking of you and hoping everything is going ok.

I think the prayers, from people worldwide and the church groups locally were a big morale booster to my EGO. Good Drs are what we all need. The really caring and sincere ones. I am lucky as all of mine have been good and I have 3 that keep in contact with me over the phone if I haven't seen them for a couple of weeks. To me, thinking the positive way that you were expressing in your 1st post is a big positive. Welcome aboard our " Little Train That Can"

Hi guys

Thank you so much for your thoughts and prayers. I feel a lot stronger than I did a couple of weeks ago..I still have moments of total despair but they are getting easier to cope with. I am trusting God that my cancer will be removed, and then I can gain strenght to undergo radiotherapy and chemo soon after. I am no longer terrified of rads (a bit scared maybe!!) and I welcome the treatments because i believe they will get rid of this damn cancer. Along with that, I am also seeking help from an alternative source in order to boost my immune system, ready to wage war on this monster.

My day is the hardest in the mornings..I feel low and deflated but I have many friends and survivors here in Perth that are helping me through the ups and downs of this journey. With hope in my heart and prayers galore, I am ready for the challenges of the weeks ahead.

God bless you all..you guys are just the best!!

Liza xx

Hi Liza,
So good to see that you are in a better place and positive about your upcoming treatments. There is no getting away from the fact that it is not going to be a walk in the park these next weeks.
With the help of so many here on OCF and in Perth to support you it should make the journey just a little easier to cope with.
Missed you when I called but was nice talking to your daughter. I will try and catch you over the weekend.
Until then take care.
Love
Gabriele

Hi Liza,

Happy to hear your keeping an upbeat outlook...it is so important. It will be a long road and we'll be here for you every step of the way!!

Good luck, Liza, I know you can do it!

Thank you to all my well wishers!!

Liza

Just read your posting - I am at the beginning stages of this journey - but I know about fear and doubt - my thoughts and prayers are with you - you will get though this. Everyone here is so amazing and informative - and it's a great place to share. Best of luck with your upcoming treatments!

Liza - we're all pulling for you! You've got a great attitude and you're hitting this thing with courage and eyes wide open.

My thoughts are with you.
David2