Hi...I so wish that I wasn't here.

Here's my background. I'm a 51 year old non-smoker (never) who rarely has a drink. I was diagnosed with geographic tongue about 6 or 7 years ago. The anterior portion of my tongue was reddish, and it was sensitive to spicy, acidic foods and carbonated beverages. In 2007 my dentist noticed a whitish plaque on the right edge of my tongue and recommended biopsy. Two biopsies were taken and both came back benign. This past summer I developed a lesion on my tongue that was painful, and didn't go away. I had it biopsied in September, which came back benign.

In October, my only sibling, my sister, committed suicide. Two weeks before Christmas, my mother was diagnosed with inoperable lung cancer. I took time off work to make the associated appointments for my mother's care. I decided to have the lesion removed from my tongue, because it was so painful. The ENT surgeon who did the September biopsy did the surgery. Since the biopsy was benign, we didn't do frozen section at the time of surgery. The permanent section came back Oral Squamous Cell Carcinoma, and the margins weren't clear. I had a wide excision done a week later, with clear margins (this was 1/26/11.) My doctor told me that the lesion was 1.3cm in size. I haven't had any other diagnostic tests as of yet. My next appointment for re-check is 3/15/11. I would like to ask about a CT or PET scan, but am unsure what exactly to ask about.


I am an RN Surgical First Assistant. I've worked in the Operating Room for appromimately 25 years. I fully understand the ramifications of oral cancer. I am not willing to undergo heroic surgery, etc...radical neck dissection is totally out of the question...I've done those surgeries. I don't wish to experience one. I am divorced and not in a relationship, no children, no nieces or nephews, no stepchildren. Just me and my parents, who are in their 80's and frail health....oh, and 3 cats (who I love like the children I never had.) All I really care about is staying healthy enough to care for them until they die. Once that happens, I'm also ready to go.

Please give me some suggestions for where I need to go next.

Thank you so much...
Kellijojo

I think you need to go and talk to someone that will understand you situation and then help you thru these thoughts. Why no Neck dissection? It isn't that bad. I am divorced too and have gone thru everything that can be done alone just about. Parts of my tongue taken on both sides, neck disection, radiation and chem, rad seed implants which I think were the worst thing so far, I can't even count the different things like MRI's, CtScans, Pet scans, biospies and the rest. I have had 3 abdomial aortic anneurysm surgeries, the nissen fundiplication , 7 shoulder and elbow surgeries and others. Now I am waiting to meet with an ENT in Pittsburgh to lower my stomache back to it's original location for a feeding tube. Then my lower jaw all has to go and maybe my left shoulder blade will be a jaw, that is id there is enough left to work with. Heck, it's life I want and can take the funny face and skinny body I now possess. If I can make life worth having, then you can too. 1st OC surgery was in Aug 2007. But diagnosed well before that. I knew I had it but never had a name until the Dr told me it was OC.

My daughter is the charge nurse for the heart unit here and my biggest supporter. My ionterpreter too. LOL

Kellijojo,

Where in Michigan are you? I am also from Michigan and am wondering if you are being treated at a Cancer Care Center? I can recommend a wonderful doctor at U of M and perhaps he may change your outlook.

If we should happen to live somewhere near each other I would be more than willing to help you out after any surgery.

Please don't give up!

Yvonne

I work at Mid-Michigan Medical Center, in Midland Michigan. We have affilliation with Pardee Cancer Institute. Dr. R, who did my surgery, asked if I would like a second opinion to U of M, but I was so shell shocked that my mind really didn't process everything that he was telling me.

Just to keep my stress levels going full-steam-ahead, I haven't leveled with my parents about the cancer type I have, nor have I mentioned it's fairly grim prognosis.

Losing my sister 3 months ago, and the prospect of losing my mother very soon (and watching my dad die of a broken heart once she's gone)....well, I'm just starting down this path, and I feel like all of the fight has already been beaten out of me.

I would love to learn the name of the U of M doctor. Dr. R. sends many referrals to U of M, so it's entirely possible that they know each other

Kellijojo, welcome to OCF. I am so sorry to read your story. Im sorry about the loss of your sister. That must have been a tragedy for your entire family.

On your upcoming check up your doc should be talking to your about any further treatment and tests. A CT or PET scan would be done several weeks after a surgery to make sure the risk for a false positive is less. Imnflamation can bring false positives. It takes weeks for any swelling from a major surgery to subside.

I understand your reasoning behind not getting any further treatments. Im sorry that you feel like that. I guess sometimes its better not to know what goes on in the OR. I have had a neck dissection and it really isnt bad. I have bigger problems from other things than from the neck dissection. Even though you are divorced and not in a relationship, you can still have a long, happy and productive life ahead. At least consider it.

Hi Kellijojo,

I am so sorry for your loss and for what you are going through. I too, am an RN and worked in OT for a while so I know how gruesome those operations can be. But, I have had two neck dissections,first one was in Sept 2010 and it was a selective one. All nodes removed came back clear but unfortunately I had to have another one, this time a modified radical dissection where they removed all the remaining nodes, glands, jugular vein and the muscle as well. After nearly 3 weeks, it has healed well, apart from shooting, weird and spasmodic pains which come and go. Yes, I have a dent in my neck,an awesome scar, swelling but I am glad to have the cancer out. Now, I am awaiting to start rads and chemo...wish I didn't have to go through this part of the journey but I realise it gives me better odds of surviving this illness.

Please do not give up. Having a cancer diagnosis is probably the most frightening thing to have happened to me and to have it come back so soon after my first bout was extremely hard to handle. I still struggle with it everyday but having the people on this forum as my 'angels' has been unbelievably good for my soul and psyche. Without them, I don't know how I would be dealing with this. Please use this forum to vent or ask for advice.I, like many others have stopped looking at statistics and instead take inspiration from the many survivors who are living a full and productive life despite the challenges they may face.

I wish you all the very best. My thoughts and prayers are with you.

Liza

Kellijojo - I'm so sorry for what you have been through and are now experiencing. There are lots of wonderful people here with similar experiences to yours and can help you in many different ways. I'm not an RN - I am just a mother and if you were my daughter, I would want you to fight like you've never fought before to help yourself get to a better place and survive this cancer beast! My son was at a very low place in his life after divorce and diagnosed with SCC, and he's a survivor now with a beautiful lady in his life. Don't give up - there is a life and love after cancer. Stay with us and let us know what's happening with you.

Kellijojo - first off I am terribly sorry for what you are going through at this time - I lost my mom ten years ago and miss her desperately to this day. I am an only child and weathered the lung cancer with her to the end - it was devastating. I cannot imagine losing a sibling too - that's just horrible. It already seems like you've lost so much, and I know sometimes it seems like moving forward is impossible but I have to agree with all of the posters here.... Firstly I was a nurse and working the OR has to be hard because you see what goes on behind the scenes but I have to tell you the neck dissection is not that bad. I HATED the trache but that's gone in 3 to five days and while it is a tough surgery I recovered well and am now 4 weeks out ( as of yesterday ) I have been very lucky and have not had a lot of pain. mostly numbness and stiffness. I know it's not the same for everyone but it is manageable please don't give up you are only 6 years older than me and have a whole lot of life left. I also had 1/3 - 1/2 of my tongue removed and am eating and speaking fine ( though my new part is still swollen and i have a bit of a lisp)
Secondly as a parent in would never want my child to give up. Fight because you are your parents gift to the world. And as a nurse you affect people's lives every day - that is your gift.
Thirdly - get a referral to a ccc - in the interim have your gp or ENT requisition an head neck and chest CT and an MRI - to see if there is node involvement - I had one node involved but that and 39 of it's friends are all gone now so I am happy. I still have radiation and chemo facing me in the next few weeks but that's me... Everyone is different - that may not be your story. OC statistics are a melting pot - they throw everything in there but the kitchen sink and do not take into consideration age, other health concerns, history of smoking, aggressiveness of the cancer etc... They just churn out a number. My tumor was 2.4 cm x 1.4... Yours is smaller and you caught it early.
I was scared sh*tless when I first found out, so I understand but please don't give up.
Best wishes to you and take care.

[quote=Cheryld]I also had 1/3 - 1/2 of my tongue removed and am eating and speaking fine ( though my new part is still swollen and i have a bit of a lisp)
[/quote]
I had about 1/3 of the right side of my tongue removed. I'm absolutely mortified by my sloppy, slurpy sounding lisp when I talk. The very tip of my tongue is numb, and I often bite it when I eat...I've already taken a few chunks out of it accidently. I hope this gets better.

I had a neck dissection as well, and didn't think that it was nearly as bad as the radiation and chemo. I also had a good part of my tongue removed. Right now, my teeth are my most annoying problems, and I do have some eating issues. And, yes, I do lisp a bit. You have come to the right place for support. These people here are amazing!

How long ago? It's been a month for me... Everyday it gets better - I still have trouble with d, t, sh... Give it time - I know it's embarrassing - people who know me understand - those that don't know me I apologize and tell them I just had surgery. They are always ok with it. It takes time. I hate being incapacitated but this is a journey - I know it will get better. My surgeon told me if it needs a little tweaking ( de bulking ) they would do it. But they did an amazing job. Seriously a lot the people here have had this surgery and a few months out their speech is almost normal. My dr. Told me that my speech will be fine - I may only have a small lisp when I'm tired. The tip of my tongue is still numb as well but it's tingly too... That means it's healing. Eat a little more slowly - watch the tip for a while. Truly give it a little time... And take care.

[quote=Cheryld]How long ago? It's been a month for me... The tip of my tongue is still numb as well but it's tingly too... That means it's healing. Eat a little more slowly - watch the tip for a while. Truly give it a little time... And take care. [/quote]

My surgery was 1/26/11, so about a week before yours....we'll have to compare notes! The tip of my tongue is tingly too(almost a metallic tingle) so I hope that means it will get better eventually. I've always been terribly self concious (I also have vitiligo), and this just makes it that much worse.

It does feel comforting to find a place where my fears are understood, and not judged....and be treated with so much compassion.

Thank you all so much!
Kellijojo

It makes sense that you sound mumbly - everybody heals at different rates but according to my daughter I sound like I have A lollipop in my mouth but I woke up a few days ago and sounded better - it takes time. I understand being self conscious - I have the opposite of you - I have melasma - it's been a pain in the arse for me - moreso because I do film work as well. Try auditioning when you mumble - so I get embarrassing believe me. Plus I am forever having to worry about makeup to cover my darkened areas... Everything shows up on camera. For now I told my agent I need time off but i would like to get back to it at some point.
Please do get your diagnostic tests -- just to be on the safe side... Take care and yes lets compare - you can pm me or email me anytime.
And yes this is an amazing place the people here are fantastic.

I am so terribly sorry for what you are going through! As the others have said, though, this is a wonderful place for support.

Your situation sounds a little similar to mine in that you had several benign plaques removed before the SCC was diagnosed. My total cancer area (after biopsy and two excisions) is less than 2 cm and my doctor told me this is a good place to be. He said that SCC is usually grouped at 0-2 cm, 2-4 cm, 4-6 cm, etc. The smaller the lesion the more likely that you don't have spreading elsewhere. This is why he didn't recommend a neck dissection, chemo or radiation for me. But even if I have a recurrance and eventually wind up having to have these I know from the example of all the fine folks here that it can be handled.

My oncologist ordered a PET scan after initial diagnosis. This measures the metabilization of sugar within the tissue and is an excellent indicator of lymph node involvement.I now know that I don't presently have metastasis to the lymph nodes or anywhere else. I would follow ChristineB's recommendation and get a scan once the inflammation has calmed down.

The speech too will improve. My impairment is worse than after the excision in October but its improving daily. Sometimes I remind myself of Sylvester the cat with my schloppy ssh's and I couldn't roll an r if my life depended on it. But today I learned that if I put a t in front of the r I can begin to coax the tongue into action. My biggest chuckle came with the suggestion that I put my tongue into my cheek and push. Are you serious? I can just barely get past my teeth let alone reach my cheek. But its a goal and one I keep reaching for. :-)

Life has handed you an awful lot in the last year and I'm sure you are feeling terribly overwhelmed. You sound strong to me however and I'm sure that once you sit down and take a deep breath and allow yourself to feel all the caring and support coming to you from these forums that you will find the strength to fight.

Wishing you all the best in the days ahead!!