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Fast growing tumor in submandibular salivary gland and I might be in for a RIDE---help i am scared

tambelina
Posts: 9
Joined: Oct 2012

Yesterday the ENT did a biopsy on my 3 and a half week old lime-size tumor that is just under my jawline. The liquid was clear and bloody and the bad news arrives Tuesday. I already know... and I am a very healthy and optimistic person. Because I am 45 years old, a single mom of 3 with a mortgage and pets and the whole nine yards, can anyone tell me how to move fast on this monster and get the upperhand, if possible. The ENT said I will have to get a CAT scan and surgery and stopped right there. I wonder if I should call them Monday and say, "hey lets move on the CAT scan..schedule me one, please".
I truly believe he didn't discuss the surgery (only that I would have surgery) because it will be a different doc (like an Oncologist) that will be referred with Tuesday's bomb drop of the biopsy result.
I feel it growing under my chin now and up my jaw and it is very noticeable to everyone. It was not painful much until today and talking or chewing is beginning to hurt a lot.
I also wonder how long I can keep this from my kids (7, 14, and 16 years old).
There will be no family help. I hope someone can tell me I can wing this alone and still feed my kids and meet the school bus twice a day and drive.
Please don't suggest I wait for the test results. I already know the answer.
Also I might add...for the past 3 weeks I have gotten severe dizzy spells that stop me and my hands frequently go numb. This might not be related but it is also new like the tumor.

KTeacher
Posts: 874
Joined: Jan 2011

If you have been reading the posts, people here are honest and real. As soon an you get the final results you need to be prepared to let your children know. Because of their ages, I would talk to the 7 year old differently than the 14 and 16 year olds. Start making some casseroles and/or food that the kids like/eat to put in the freezer. You will need to talk honestly to the older children, you will need their help. Contact people at their schools that you trust with this information. Children might react differently than you expect. I usually have a children's book for anything, can't think of one right now. Really, no help? Good friend, neighbor, co-worker? There are times during treatment that I could not drive myself. Contact your medical facility as soon as you do get the results--there are people and programs through ACS that might be able to help. The kids will be living this 24/7 with you. You will need to reach out to their friends families for R & R, they will need to have some safe breaks. Where do you live? Hopefully the hospital and cancer facility are close to you.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

welcome! this is a great place to express pain and fears, find sympathetic ears, and get advice from the school of hard knocks.

not gonna attempt to make any medical calls, since you've got the ball rolling and will get answers soon.
but why would you want to keep it from your kids? your 16- and 14-year-old are old enough to step up and be at least some of your family help. my 20-year-old was my family help throughout my ordeal, and he was a rock (except for when he put his fist through the wall in anger at my diagnosis).
granted, there is a big difference between a 20-year-old and a 16-year-old...but your kids might surprise you. give them a chance.

hwt's picture
hwt
Posts: 1816
Joined: Jun 2012

I certainly hope this is not cancer for you. If it is, things will move quickly. Prayers that the biopsy doesn't show cancer.

katenorwood
Posts: 1800
Joined: May 2012

Yes you need to be proactive with this, but not to the point of driving yourself crazy. I had ACC in the right submandiblar gland (size of a chicken egg) had a radical neck resect last Dec. My gland in front of the tumor was filled with fluid for a long time before it started growing quickly. Your ENT will refer you to an onc if the biopsy comes back positive for a cancer. But also will schedule that CT scan before you know it. There is excellant information on the ACS sites for rides and help if you need it. And I would suggest that you call your local chapter of ACS...talk with someone about all of these issues. They are very caring, knowledgable people. (I have done this myself numerous times) And please continue to post here, I want you to know we are here for you and your family. Katie

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

"It ain't cancer till somebody in the know says it is"...I know you're scared, and your mind is rolling a thousand miles an hour...start doing some deep breathing, and remind yourself of our little saying.

I agree, you aren't going to be able to keep it a secret if it turns out to be bad news...so upfront with it for the teenagers, and a 7 year old explanation for your youngest is the only way to go. You will need help, so don't underestimate your older kids....they can really be amazing.

I'm glad you found this site...the people here are wonderful...knowledgable and supportive...I don't know what I would have done without them.

p

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

You seem very much like me. I too had pretty much planned a good and bad news scenario in my head and proceeded accordingly before I even got the biopsy results back. I had several irons in the fire...but with that said, so true that "it ain't cancer until somebody says it is" ...I pray it's not. I think most of your type ( and my type) of "pushing the cart before the horse" is not so bad, I had five kids and a stay-at-home wife ....you are a single mom with 3 kids and no family help....so I get it. I managed (stll do, just small ones now) decent size hotels for a living with Hilton Hotels for 10 years, "projecting" good and bad scenarios was just a part of my culture...and planning accordingly....that included crunching numbers and going over statistics.

I think you should just tell the ENT / or any doctor who will listen what you just told us...tell them you are in fight / survival mode (even though you do not have a firm diagnosis yet) and I would think they would completely understand ...now this is not to be sexist...but if your doctor is a women....I would think she would get your angle a bit better than a male ...don't be afriad to push...just do it diplomatically. I had managed to get an appointmet with a sympathetic lady at the place where they treat cancer before I even had results from my biopsy (she explained they don't even make appts until a firm diagnosis is recieved)....I told her simply "I have five kids and a wife" ..if the results come back for cancer I want to see you the next day please....and in reality the results came back and within 3 days I had my appt. which according to her take 2 weeks to get. When I saw them, that same day I was fitted for my mask and received my PET scan for staging ...the mask was totally on the fly...not planned ...but I think they could hear my voice and knew I was scared for my wife and kids...they were truly wonderfu to me...

So follow your instincts....try hard NOT to assume the worst case scenario...just plan for both....I truly do pray you do not have to join our club....though they are a wonderful bunch!

Keep us posted ...and know I whispered a prayer for you and your family before I clicked the submit button .. :)

Tim

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

DO YOU HAVE INSURANCE?

If you don't have insurance, or this will obviously be much more than you can afford- the government's Compassionate Allowance program is a good route to explore. If you qualify, that is. Your costs, if chemo and rads are involved, will be enormous. Your Oncology Center most certainly have people who can get in touch with the proper government people, if you tell them to. Will need to have your financial bottom-line info prepared for them, so you might wanna start with that. I don't wanna scare you, but the cost of treatment can easily run over $150K with the Ops, etc. I figured mine to be just under $200K, total.

Typical to not have a CAT scan/CT before treatment, or an Op for tumor removal. Rather, at Pet Scan is typical, as it is the best test out there to find where all the C is, if that's what you have. You should ask your ENT/Onco about that- though I suspect your Onco will tell you that is what needs to be done. And, PETs do cost around $5K.

As for the dizzy- that is typical ear/head related, but what causes it can be a number of things.

Tambelina, all of us know and can relate to this being a very difficult time for you. For me, the worst of it was before the tx started. And with your domestic situation- it will be a life lesson for you and the three kids. I would suggest a heart-to-heart talk with your kids, with what you've told us. Your teenagers are gonna have to help you with this, if it is C. I truly do hope it is nothing more than an infection.

kcass

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Hi tambelina,

I am sorry you are here, but welcome you all the same. I have to believe you do not have cancer until “they say you have cancer”. Say you are correct and the lime sized tumor is cancer and you want to continue life and go through treatments like every thing is normal. It is possible; under the right circumstances some body could probably wing it. It is not likely; I’ve never seen or heard of any one accomplishing treatments unscathed. I admire and respect you for your independent streak, but have to tell you from this point forward life can be a challenge. You know your kids, they are guessing right now about what’s going on, it is best to be honest and straight forward with each of them, as appropriate.

I sincerely hope the best for you. Look over our threads, search out questions you have, just ask, we’ve all been there to some degree.

Best,

Matt

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Sorry to hear you have to join us. My cancer was restricted to the larynx. It is different enough from your tumor to make my experiences not directly relevant. However, you will find others who have walked your road. The important thing to remember, we all get to the end of treatment. Rick.

luvofmylif
Posts: 344
Joined: Sep 2012

I agree with what everyone on this site has said so far. I totally understand where you are coming from. Sometimes not knowing is the worst thing. That was the case for me and my mind went crazy. There is alot of information to process in a short amount of time. But, like it has been said don't imagine the worst until the drs give you the dx. As one smart veteran on this site told me, "don't fight any battles that havent' happened yet". Save your energy.

I believe whatever happens you and your kids will get through this together. You all love each other and you will make it...one day at a time. So, try to take it one day at a time and enjoy today with your kids. Face tomorrow tomorrow. Today is a gift.

Joan

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I will be praying for you. I can hear the anxiety in your post. Honestly I know this is painful and scary, but thankfully you have found a great support group here. These people are great, compassionate and motivating. I am praying you don't need us long because it's not cancer, but if it is we are here for you.
Vivian

Crazymom's picture
Crazymom
Posts: 280
Joined: Nov 2011

I agree with the others that you have to take a deep breath and wait for the biopsy results. After I got the biopsy it still took a couple of weeks before I started with the chemotherapy. The hospital had to get all the doctors arranged and tests done. I have a 13 and 17 year old (and a husband!), but no other family to help. My husband had to work a lot and could not physically be there to help that much. When I told a friend, a mother of one of my son's friend, she offered to drive me to all my cancer treatments. I hardly knew this woman. I was stunned. You need to tell people. You will be surprised who helps you. None of my best friends actually did a lot...it was an acquaintance I did not know that well. I sent an email out to the mother's of my 13 year old to see if anyone could bring meals the last couple of weeks of radiation. I told my husband I did not want to send out an email because I did not have anyone who cared. I was totally shocked that we had dinner delivered every night for 3 weeks. My experience is that people cared about me more than I knew. My 13 year old cooked and cleaned. I got a nanny to pick my 13 year old up and my 17 was a rock. He could drive, run errands do laundry, help with homeowrk...and stay with the younger one when we were at the hospital sometimes until 3:00am when there was problems. You will get through this. It goes quicker than you think. Start getting ready and make sure your closest friends and school knows. The boys will be fine. Praying for you. Do you have insurance? I had health insurance and short term disability so I actually got my paycheck for several months. Check on the insurance and start getting ready. Ann

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

...restores my faith in humanity. wow. terrific.
hope you're doing well.

tambelina
Posts: 9
Joined: Oct 2012

Thanks everyone for the useful and heartwarming support. There are some whoppers of great ideas. I am already busy doing the things you all have suggested. I can tell there will be a lot of sleepless nights where I'll be reading the threads and learning from what you've been through.
This is a lot of info to process, that is so true.
In the morning, I am going to beg for an appointment at the oncology doc group of NW GA where my ENT will refer me, I'm sure, as they are in the same building. I will for sure fill the freezer with meals that I can (or the kids can) easily thaw and heat up. My oldest (16) works at a grocery store 1 mile away. Tonight when I picked him up he said, "I am so glad my job is this close to home," because we had to circle back and return a key to the propane tanks and I was thinking, 'son, you don't know the half of it yet'.
Yes I will tell them all and you are right: INDIVIDUALLY. I will put it off, though, until I know what lies ahead and for how long. There are 3 weeks left of football season and both teens are heavily involved in it with the 14 year old girl in the band.

tambelina
Posts: 9
Joined: Oct 2012

Thanks everyone for the useful and heartwarming support. There are some whoppers of great ideas. I am already busy doing the things you all have suggested. I can tell there will be a lot of sleepless nights where I'll be reading the threads and learning from what you've been through.
This is a lot of info to process, that is so true.
In the morning, I am going to beg for an appointment at the oncology doc group of NW GA where my ENT will refer me, I'm sure, as they are in the same building. I will for sure fill the freezer with meals that I can (or the kids can) easily thaw and heat up. My oldest (16) works at a grocery store 1 mile away. Tonight when I picked him up he said, "I am so glad my job is this close to home," because we had to circle back and return a key to the propane tanks and I was thinking, 'son, you don't know the half of it yet'.
Yes I will tell them all and you are right: INDIVIDUALLY. I will put it off, though, until I know what lies ahead and for how long. There are 3 weeks left of football season and both teens are heavily involved in it with the 14 year old girl in the band.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

My oldest of five kids is 13. She is my only girl in the bunch ...once we knew it was cancer we spoke to the kids ....my daugther LOVES sports and she went to her coach and said she "has to quit the team and help her Dad/ family"...she did and there was a full week she stayed with just me in the RV (I lived in an RV at the treatment site since we were 100 miles from home) and she kept me fed through my feeding tube, made me what little food I would eat and made sure I got up for my radiation treatments, etc., etc. ...

My little girl grew up a lifetime in that time frame (my radiation of 7 weeks turned into almost 10 weeks due to delays and issue with neck burns and side affects from chemo. I have always been VERY close to my kids, we can talk about anything ...and this made us even more close ...hard to believe what children can do sometimes. I realize not all children respond the same...I have one child who I affectionatly call my "problem child" just between my wife and I of course, but I love him all the same ...

..on a happy note..the team and the coach invited my daughter to the "end of season team celebration" ..she was given an award called "character award" by her coach and classmates for doing the right thing and taking care of "family first" ..that meant a lot to this dad that they would do that for her ...

...no matter what happens in the future...I will always say "c" has given me a perspective on life I would have never had without it....

I pray this thread turns into some crazy infection ... but if not, you will survive and you will get through all of it even on those days when you think you can not take another step!! :)

Best,

Tim

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

That was a great thing the team did...very moving story. If/when you see the coach tell him/her that one other cancer survivor says "Thanks, what a lesson for the others".

hwt's picture
hwt
Posts: 1816
Joined: Jun 2012

moved me to tears..........

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