Hi my name is Denise and my biopsy results came back on April Fool's Day. They biopsied my tongue after a routine dental appt. I am still in shock though I probably shouldn't be....I was a smoker for years. Feeling very stupid and scared. Waiting to hear about appt with cancer center for further testing and treatment. I have been really worried about my job, money and how to manage to pay bills if this takes awhile to take care of. I am alone though I do have some friends. Anyone else have this concern right out the gate like this?? Praying for some good news in the next couple of weeks. Hoping the best for all. Thank you. Denise
I feel for you, Denise. that initial news is as if a chasm has opened up in front of you.
We have free medical care here and in the past I've taken sick leave. You might have a small tumour that needs a minimal excision ... if it's bigger, reconstructive surgery and if there are other relevant prognostic factors you might need radiation. I always look at the worst case scenario then hope like mad for the best. At least your dentist picked it up!
Whatever the diagnosis and treatment is, be assured that surgeons can do marvellous things with tongue surgery now.
Having no partner/caregiver can be daunting but is manageable. People turn up to help. There are support groups and the Cancer Society.
And we will be here:)
Denise, welcome to OCF! You are in the best place for info and support to help you get thru your OC battle.
When I was first diagnosed, I was a single mom with 2 teenagers. There was no help available so I know where you are coming from. You will need helpers. Most people really do want to help but dont quite know what they can do. Others (and these will really surprise you) will run for the hills and avoid you like the plague. Some people cant handle someone they love being sick, maybe its the fear of being forced to face their own mortality that spooks them. Starting right now, anyone who offers their assistance tell them when the time comes you will let them know what they can do. Write down every single person (weather you are close with them or not) with their contact info. Contact the American Cancer Society and get the ball rolling. They can help with $300 to use for transportation to treatments or a pharmacy voucher to help with prescription co-pays.
I know its not easy but try not to get too far ahead of yourself with the "what if's". Worrying wont change anything, it will only cause unneeded extra stress making you feel worse. Read and educate yourself. An informed patient is a strong advocate. We are here for you and you can lean on us.
Best wishes!
You've found a great place for love and advice. The only things I would add are 1) as best you can don't worry about what you don't know. As Christine said above the what-ifs can easily make you lose focus. In my experience 80% or more of the things I worried about never happened. 2) Starting today do what you can to get stronger and healthier. If the prognosis is awesome and little to nothing need be done, well you're stronger and healthier. If you are heading into a fight you'll be better equipped! Win-win.
Bless you and good luck!
Thanks to you guys for your encouragement. It's true...the "what if's" do make you lose focus. I had my follow up today with the oral surgeon that did my biopsy. He said I would definitely be having further surgery, didn't know how extensive. Tomorrow is my CT of the neck. Scary as heck. Friday I will get the results when I go for my first appt at the Cancer Center. I can't believe how life and especially my perspective has changed in just over a week. Trying to handle things that I can before any kind of surgery. Good News today though! A friend of mine is gonna lend me $10,000 for a down payment on a condo. That will bring down my monthly bills by a large portion...I am renting now and if I have to be on disability, the less my bills are the better. So, that was good news. I also went for an orientation meeting at this place called "Gilda's Club". Hope everyone is doing good and thank you again for your encouragement and kind words. Denise
I like that your friend is helping you. Some people really rise to the occasion when a friend has cancer. I've found that to be the case a number of times. Just when I'm wondering how I'm going to cope, someone offers to do something heroic!
Gilda's Club sounds helpful. You are setting yourself up well before treatment. Now make sure you eat well in case your surgery hinders your eating for a while.
Best wishes:)
Hi Denise. My diagnosis was five days before yours, and although it is different cancer I am willing to bet I've been experiencing the same emotions and feelings as you. I can sure relate to the change of perspective and the worry. For the first week and a half I couldn't go more than 15 minutes without thinking "holy crap, I have cancer".
I can tell you that every test I've had (biopsy, CT scan, PET) has increased my level of knowledge and sense that I can overcome this. So I hope your own confidence improves the way mine has. The folks here have been really supportive and the information you can find in past threads is invaluable. Good luck to you with your battle.
Denise, defintely contact the American Cancer Society. I had to travel for my treatments and they were able to hook me up with a free hotel most weeks. They were a Godsend!
Welcome Denise,
I shared the same concerns as you when I was first diagnosed, living alone and being very independent. What you mention about work, money, and management of bills should be considered as you move forward. When I went through chemo, the social worker mentioned filing SSDI, and taking other measures, just in case, and I laughed to myself saying I'm not doing any of that. Well, I wound up having to do that much sooner, and more.
As far as cancer, that was the easiest part, my doctors took care of that. People, getting what is legally due, and dealing with the things you mentioned proved more difficult, still is, especially when ill.
Not that all situations have the same outcome nor can we predict everything, but everyone should have a plan in mind before treatment starts, more like a plan A, B and C for me, become familiar with your work benefit packages, employee manual, FMLA, short and long term disability, continued payment of bills like through automatic bank payments, transportation, food delivery, food preparation, house cleaning, pet walking, even what your medical and prescription plans cover, do not cover. Some things you may do yourself, have another person, relative or hired help do, and can be changed, modified as you proceed along.
I also suggest to start having your own file with every test, procedure, pathology done. It will clarify things, can save time and money later on, if copies are needed.
Good luck with everything.
Well, I had my neck CT and am getting the results on Friday at my first appt at the Cancer Center. I worked last night (RN, Emergency Psych Unit). Well, it's all starting to sink in now. Some of my coworkers are clearly uncomfortable. I don't really care, I have my own crap to worry about right this minute. I am worried about what the scan might show. I don't want my throat involved in any of this. For some reason, that creeps me out more than the rest. I also realized that I could very well not be able to sing anymore. I do it just for fun, I'm no Barbara Streisand. I guess I have been starting to feel sorry for myself. Like PJE said, "holy crap, I have cancer."
I am trying to focus on getting my stuff in order and taking care of things prior to any treatment to make things go more smoothly. Thanks to everyone for the support and encouragement. Denise
You're a nurse - you're medical background will help you!! Knowledge is power and is the best thing to help you advocate for yourself.
Your co workers should be way more understanding geez this is what they do for god's sake.
That said. Hopefully you have good insurance, and disability leave. This should lessen the worry immensely.
You have the same type of tumor I had. Please read my post to the person in the message above yours. It gives a little information about the treatment for this cancer. Hugs and welcome. and sorry you have to be here.
Thanks Cheryl, I read your other post as well about the treatment/surgery. Friday is the big day, so I am trying to not trip out before then. I have been a nurse for a long time, but I really don't know much about oncology. Years ago, I worked at Children's Hospital of Los Angeles on the hematology/oncology unit but I really don't have much knowledge about this sort of thing we are dealing with here. I do have good insurance and I do have disability which is not all that great but at least I have something. I also live in Louisville where the James Graham Brown Cancer Center is located. I actually work in the same hospital...I enter for my job not 100 yards from the cancer center. So very strange but lucky all in all.
So, maybe you know this...at the first appt will they want to schedule surgery?? I need a week or so to get it together before hand. How many sessions of radiation do you usually go for and are they daily??? I have tried to look some things up online but was unable to find much to answer specific questions. I guess everyone's treatment plan is different.
Thank you for your support and encouragement...it is greatly appreciated.
Denise
For surgery - they may get you to sign off it right away. But generally it takes a week or two to book you, minimum (now knowing you're a nurse and possible colleague may get you in faster (that's just the way it is folks). My dr. is tops in his field. The day I was due to meet him his mom died !!!! I met with his fellow instead ( a very hot Australian guy... he trains ENTs from all over the world ) the fellow went over everything with me and had me sign off. The next week the dr. insisted on seeing me and asked me to sign a separate form asking me to give him permission to split my jaw. I signed it but made it clear it was only an option if he absolutely could not get all of the tumor any other way (no laziness allowed) He triages his own surgeries so he scheduled me for three weeks later - I had my preop done early and told him if he had a cancellation I was game to go when he was.
Usually post op you have 5 - 6 weeks to heal. In that time they will do another CT, to prep you for rads, and they may also have you see an MO - in case they choose to do chemo as well. Plus blood work, meetings with a dental oncologist and hearing specialist (if chemo is part of the game plan), and maybe a radiation info session and an appointment with a dietician (most CCCs do this and have it all in house).
I was blessed enough to get it ALLLLLL ( I am being sort of facetious here but believe it or not - as hellatious as it was - I am glad they hit me with the works.
Generally 33 rounds of daily rads with weekends off is how it goes. Treatments are quick. maybe 20 minutes.... I wore a sports bra with no metal and a tank top and never had to change after the first day. SO I'd show up walk in lay down they'd set me up and cook me.
They also gave me chemo 3 times - week one - three and -six. They missed the last one because my blood was unhappy. This happens a lot. Sometimes chemo is given in six doses (weekly) instead. My hospital keeps you in house for chemo. They want you overnight where they can run an IV because cisplatin is hard on your kidneys. My father in law who also had cisplatin for esophageal cancer had it as an outpatient (so it depends on the Dr. I think because we were both treated at the same cancer hospital.)
When I was first diagnosed I was T2 N0 MO - There were 5 weeks between dx and surgery in that time a 1.5 cm node popped up.
The dr. told me the first day he met me that he would be removing 40 nodes from my neck as well as 1/3 - 1/2 of my tongue - and he didn't want any arguments. And frankly I would have asked him to do the dissection had he not suggested it.
Anyway showed him the node on the morning of the surgery (which BTW did NOT show up on any scans including an MRI 4 weeks weeks prior to the surgery and believe it or not - at that time I could actually PALPATE IT!!!) and he said it didn't matter it was coming out.
Turns out it was cancerous and it had extra-capular extension meaning it had already broken through the node into the surrounding tissue. all this in 5 weeks.
While surgeries and tumors are different depending on the structures involved most treatment regiments are the same. 28 - 35 rads (33 usually for oral tongue) and chemo (cisplatin, carboplatin, or erbitux)
Friday!!! good luck - BTW I didn't have my jaw split though he said he lost 10 lbs in the OR because of me. My surgery was 14 hours long. I came out with a catheter, trache, ng tube, 2 drains and a face that looked like I'd been hit by a truck. (I even had a black EYE!) I also had two donor sites so they were bandaged as well and sutures along one side of my neck, and an IV in my foot. PS you will need something to write with usually they put in a non fenestrated trache day one and two, then they move you to a fenestrated trache for a day or so before removing it entirely.
As bad as it was - I am thoroughly grateful.
HUGS (ps - I used to be a nurse!) feel free to friend me on facebook and PM me there.
Hi Denise,
I also had tongue surgery. It was stage two but while waiting for my surgery it went into my neck and became stage 4a. It was an awful year indeed. It was one year since my diagnosis on March 26th.
I'm praying it's gone and that it never comes back. I had two clear scans. I was on the feeding tube, through the stomach due to the treatments last year. I was literally starving to death. I was in and out of the hospital all year long. I really thought I was going to die.
But now it's an year and I can eat whatever I want mostly. Fruits are still too tarty
But I managed to drink a large glass of orange juice every morning. I can't swallow my thyroid pill so I crush it.
I look slightly disfigured under the neck but there is huge improvement.
I'm trying every wrinkly cream under the skin for my chin... Got premature wrinkles there.:(
But overall... I'm just so really grateful to be alive.
Kimberly
Hey Kimberly! How long did you have to wait for surgery that it moved into your neck?? Wow, you sure went through alot. I am so glad that you have had clear scans.
I hope you continue to do well. Denise
Hi Denise:
I hope all went well with your surgery. I know that you were probably scared but in time, you will be just fine. I have been praying for you since I know all to well what your going through. This cancer certainly has had its ups and downs but in time you will come out a winner. Take care of yourself while you recover and be patience. All good things come to those who wait. Having said that, take your time and you'll be back up in no time.
Hello Neicy! Welcome back, how are you? I wanted to say hello before I get ready to teach. I will be thinking the best for you all day. You have a huge support here, rest well.
Sophie