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Ben,
I am like you. I also have an HMO, and was treated at a Cancer center, but in a smaller town. My original diagnosis came after one dentist saying it was something, and two opinions saying it was nothing, and then one finally did a biopsy to find it was something. After that I never sought another opinion. I stayed with my ENT that did the biopsy. He referred me to the cancer center at the hospital and that who is I went with. I am not looking at being two years out of treatment.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Ben,

I was 33 years old when I was diagnosed, I had a young family, made a fantastic living and had almost the exact same questions and views as you did when I first came across these forums three years ago.

When I was first diagnosed, I thought more about what it would do to my family financially then how my death would affect them, I even took comfort in the fact that I'd been smart enough to have life insurance in place. Where the life insurance gave me comfort, it did very little for my wife and two young boys, who would rather have me then anything the money could buy. It was a very narrow way of thinking on my part in retrospect.

I became disabled and unable to return to my career due to complications from treatment and surgery, my wife lost her job due to the economy shortly after I started treatment. We went from making a solid six figure income to living off of the charity of others and my wife working two meagerly paying jobs to try and make ends meet. Four years (this month) later, we still make nowhere close to what we did before cancer and financially "ruined" when compared with the lucrative living we enjoyed in our former life. Yet despite our financial situation my family life is great, my wife and kids are thankful for everyday they have with me, and I them and we are loving life.

I was also caught up in percentages and odds etc as I was a businessman and rabid poker player in my previous life. It took me forever to get passed what the numbers said and realize that statistics mean absolutely nothing in individual cases. A 90% chance of living means nothing to those that fall in the 10% that don't make it. Three years ago, Brian thankfully gave me the same advice he gave you and that insight set me free in a sense. You see in my case, my odds of survival were horrible due to how late stage and involved my cancer was and thoughts of death constantly occupied my thoughts. Now, I just live every minute of everyday as it's meant to be, to the fullest as I know I'm not guaranteed my next heartbeat much less tomorrow.

I hope you eventually are set free from some of that thinking, I know I'm in a much better place because of it.

I have a blog on these forums, maybe you can relate to my journey of acceptance so I invite you to read Letting the Healing Begin under the Coping Anger/Fear section.


Welcome to OCF. Glad you found us, Best of luck.

Eric

Last edited by EricS; 01-29-2012 11:03 AM. Reason: always spelling

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Anne:
Minneapolis might still be out of network for my insurance, I think. I will find out.

The doctor may have said four lymph nodes were removed, I can't remember. How many are on the left side of the neck? Hmm, some Googling tells me they're called "Submandibular" and there are three to six of them. Is that right? So that would mean three would be on the left side, I assume. That would mean he removed all of the left-side submandibulars. Are you saying he should have taken the right side ones too? Or other ones near thee three left side submandibulars?

By the way, does the involvement of both tongue and lymph nodes mean it has "metastisized"?

Charm:
I believe I'm stage III or IV. I'll be told my staging on Wednesday. When My doctor said 70-80% he only knew about the tongue, he did not know about the lymph nodes. I think he gave me stage I statistics.

Cheryl:
If you reach five years cancer-free, odds are not the same as everyone else. Odds are 50-50 again. Every 5 years, you have to win a coin toss. You have to win it every time, or game over.

Christine:
Does it really matter that much whether you're at the "Ivy League" of treatment centers? Is cancer treatment really that non-standard? Maybe I could manage commutes to the Twin Cities. Or I might be able to move in with a friend in Tucson. She lives in a three-room house and she had a heart/lung transplant about 12 years ago but is in pretty decent health. I think she'd have me.

Angelia:
I'm sure I'm at a higher stage than you at first diagnosis, but nice to hear.

Eric:
I actually don't have a spouse or children. Just parents and a sister. Maybe I shouldn't worry about financial ruin since I can't pass it on. Man, I don't want to lose my house and ruin my credit for life, though. Obviously I should if my chances are so much better if I leave St. Cloud, but are they? Sounds like you started out wealthy and with an education. I'm starting out a high school graduate with a union job at a factory, insured by an HMO, living paycheck to paycheck on $34,500 before taxes, single and with no dependents.

All:
Good points on statistics, and I always had basically your view on them. I still wanted to know them.

Last edited by AvatarMN; 01-29-2012 12:09 PM.

-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben,


I'm a high school graduate with a year of community college under my belt. I grew up as a poor kid in an economically depressed area of Idaho, for many years my mom was a single mother of four kids and we lived in a singe bedroom trailer on the wrong side of the tracks. After high school I moved to Seattle, lived in my car for sometime while working my ass off.

Money, credit, even houses, cars etc...inconsequential in the larger picture brotha. Life is more then where you live, what you drive or how much you make. As a momma's boy I'll tell you that your family won't care about any of that either, just how much they'll miss you when you're gone.


Not to answer for Christine, who's as knowledgeable as anyone on Oral Cancer (she sure should be) but yes, where you are treated is critical. It is THE most important decision you'll make. If I weren't treated where I was treated and by the top Dr's in the field, I'd be dead right now. I know that.

Last edited by EricS; 01-29-2012 12:30 PM.

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Your choice of treatment facility is the most important decision you can make. A real NCI cancer center which sees hundreds of OC patients a year would be a much better choice than somewhere that might see 2 or 3 cases a year. Give yourself the very best odds and run to a cancer center! A lesser facility may be your death sentence.

Another thing that may change your way of thinking is money is not more important than saving your life. I lost everything I had the last time I got sick. But you know what? All that I lost was only 'stuff'. I am still alive as are my children and that is the best possible outcome. Material things can always be replaced but people cant be.

Oral cancer is a very fast moving cancer. You may only have one shot at beating this so why not give yourself the very best chance at getting thru this. This horrible disease is deadly. Please help yourself and get the best medical care you can.

Last edited by ChristineB; 01-29-2012 12:41 PM.

Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Eric: LOL! Didn't mean to call you a fat cat or imply anything about where you came from, your character, or how hard you work, man. Just saying that six figures is a minimum of 3 times as much as I make, no judgements or comparisons of either of us as people. Just numbers. My financial ruin would come faster is all. But I can't pass it on to my loved ones, other than let them drain their accounts on gifts to me while I'm here (which I will discourage within reason). That's an advantage I have over you.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Posts: 1,844
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Ben,

I didn't take it like you meant anything other then what was stated. I just wanted you to know that I'm not some super educated professional that you couldn't relate to. As you said, it's all just numbers brotha.

There was a point during treatment where things were going south in a very quick way for me. I was hospitalized for a week and had to have several blood transfusions, my MO wasn't hopeful. When lying in that bed, I never once thought about my credit score or money, nor did my family. We just wanted more time.

You're family is no different I'm sure.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Ben,

Listen to above. A good Cancer Center is the best way to go. I know for a fact. I went through 5 Dr.s who had no clue. They all told me something different and how my cancer should be treated. If I had listened to the ENT today I would have no teeth, I would have had radiation and chemo and NOT surgery. I went to a Cancer Center my surgeon told me your tumor is growing outward not inward that's a good sign, you'll have surgery and if no lymph-nodes are involved you won't need Radiation or Chemo. Thank God for Moffitt Cancer Center.

As far as health care I'm sure they will work with you. I have health insurance but with a 3K deductible. Moffitt worked with me.

Check out a Cancer Center, hope all works out for you, keep us posted.

Connie





SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Ben,
I started in on a long email but decided to pm you (look under my stuff that will be blinking). It is mostly about my case, and lymph nodes.

The thing is, your community hospital could follow the NCCN guidelines for your cancer, they could follow the protocol of a larger hospital, and you could be more certain they do if you got a second opinion. Google National Comprehensive Cancer Network, or just NCCN. You have to join, or create an account, or something, but then you can get into and look at protocol yourself. Maybe you've done that.

Oral cavity cancer: you cannot rely on radiation to be your primary weapon, have to use surgery. I don't know if that applies to nodes of oral tongue patients, but I did have my treatment at one of those NCCN insitutions, MD Anderson, so I would guess that is the way to go. I've looked at the guidelines but it has been a while back. Yes, I think you should have had more lymph nodes removed. The PA to my ENT at MDA put it this way, roughly: we get patients all the time that don't have it all done right the first time, I guess partly because their doctors want to go easy on them, then they get a recurrence. His point was better get it done right the first time.

Yes, you have metastases to those three lymph nodes if the path report says so.

Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of February, 2018
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Anne,
I responded to the PM. I will also include the question of NCCN guidelines when I see the cancer team on Wednesday.

And I think you may be underestimating St. Cloud. The fact that the facility is very new may account for it not being on the lists you like to see facilities appear on. And remember the doctors are not necessarily rookies and may come from where hotshots come from. My radiation oncologist, the only one I've met so far, is from St. Louis, MO. And St. Cloud is quite a huge medical town. St. Cloud Hospital is the largest hospital in the state, I think. And there are many other large medical facilities in town. The Coborn Cancer Center is part of Centracare which is very large, and it's surrounded by lots of other clinics such as the HealthPartners one where my primary care physician practices (my insurance HMO is HealthPartners). St. Cloud is the third largest metro area in Minnesota, after the Twin Cities and Duluth, and it serves the needs of huge swathes of the states. They may see a lot more patients than you think they do. I'll ask them how many patients they get, with oral cancer, as well. I have a long list of questions!


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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