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I'm new and scared

lucky123
Posts: 17
Joined: Jan 2007

Hi everyone, I'm 37. Call me Lucky. Wish we could be meeting under better circumstances but oh well.
I am on the long road to just getting diagnosed! I am beyond frustrated at this point. It all started in 2001 and I still do not have a reason for the lower left sided pain and weight loss.
They did a ct scan and I have a small nodule on my right lung but I've always had pain in my lower left side. Military doctors kept saying in the begining that it was everything from IBS to menstural problems. It wasn't until they noticed the weight loss that they are now taking me serious. I am begging for a colonscopy now and STILL they giving me the run around. They are alarmed more about the right lung. I just know in my heart that it has spread since this nodule wasn't there before on any test.
I weigh 94 pounds now. I am so afraid that by the time they finally check my colon it will have spread and they will refuse to let me even fight!

I am a fighter, I just need to get started!!!
Would any of you just go pay for your own colonscopy? How much are they?

Military doctors suck so bad. They just want to give you motrin or tell you you are too young for cancer. It's almost like they wished I would just go away and stop calling. Please pray for me. The pain really stinks an I am depressed. My husband (active duty) is so kind and wonderful to me. But he can't relate to the hell I am in. I need friends going through the same thing. I need hope.

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Lucky - First of all, don't assume it's cancer, but I absolutely agree with you, you need to get checked out. There are many stories where the doctors said 'too young for cancer', including mine, but you don't need to hear those right now. I'm not sure about the health system in the States (I live in Canada), but do you have to go to military doctors? Can you not go elsewhere? I would fight for a colonoscopy and a c-scan and fight for your health. Don't let ANYONE deter you. The sooner you find out what is going on, the sooner you can move on to treatment and better health. You have found the right place to vent, please keep us updated and don't hesitate to e-mail through CSN if you have any questions or just need a shoulder. You are in my prayers. Monica

Patrusha
Posts: 488
Joined: Jun 2006

Lucky,

Hopefully Spongebob will be along to help you deal with the military. I think a colonoscopy in my area is about $2,000 out of pocket. Tell the docs there is a family history of colon cancer in your family.... your aunt or something and you just learned this from a cousin .... and they'll do a colonoscopy lickety-split. I am not one to advocate lying but you need to make them pay attention. Hopefully they'll do it and it will be nothing, but you have to push them...

Please keep us posted.

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Lucky -

I am sorry you are going through this. You need to push for a colonscopy.

I hope you don't have to pay for itself yourself, but if you do, perhaps you can negotiate with a doctor to only charge you what he would accept from an insurance company. I had one in November and following are the charges that were billed and what the insurance actually paid. The latter is still a lot, but only about half what the theoretical charges were:

Billed
------
Facility Fee - $800
Anesthesiologist - $720
GI doc - $1079
Total - $2599

What Insurance Paid
-------------------
Facility - $572
Anesthiologist - $539.40
GI doc - $266
Total - $1377.40

I live in Washington, DC where things are not exactly cheap.

I hope you get to the bottom of this soon.

Take care,
Betsy

lucky123
Posts: 17
Joined: Jan 2007

great someone in the DC area too!
I'm praying I don't have to pay for it to get it done sooner. Thanks for the support. You (all of you) have made my day!

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Lucky,

Unfortunately, doctors are still in the dark about how many people younger than the recommended screening age of 50 are being diagnosed and being diagnosed at an advanced stage.

You need to do whatever you need to do to get a colonoscopy and more testing. Listen to your inner voice. I too started having small problems about 4 years before I was actually diagnosed. I let the doctors convince me that there was nothing wrong because I was "too young to get cancer". By the time I was actually diagnosed, I had to go to four doctors before one took me seriously enough to schedule a colonoscopy. I was at stage III by this point. Had they listened to me the first time, I would have likely been Stage I. You are your own best advocate. If you think something is wrong, keep pushing until they listen. Maybe you can get the scope just to "shut you up" know what I mean? Keep bugging them, every day if you must.

If worse comes to worse, yes, I would absolutely pay for the scope myself if I felt strongly that there was something wrong with me. Then, if my suspicions were right, I would fight like hell for them to repay my costs. That is me.

Please keep in mind that there are numerous things that could be going on with you.

If it does turn out to be the ugly beast, know that there are many survivors here at all stages. Even with mets to the lungs and to the liver. It is not a death sentence anymore and you are starting out with the right attitude to beat whatever may be troubling you!

My prayers are with you.

Tricia

PS It was the day after my 27th birthday that I was diagnosed. It took a very young doctor barely out of school to finally say, "this could be any number of problems.... here's the list... but, I can't make that diagnosis without further testing."

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shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Lucky,
Even though I do not know anything about the military medical system, at least this spot on your lung has caught their attention. Now what do they plan on doing about it? You can read in some of the old posts that a spot on the lung may or may not be cancer, however it is true that colon cancer can spread to the lungs. Mine did.......So, what are they gonna do about it? Are they recommending further tests? It would seem logical that a colonoscopy would be one of the tests they would do. I like the idea of saying your aunt in Oklahoma had colon cancer, or something like that!
Good luck getting through all this. Hopefully it is something totally unrelated to cancer.
Best wishes,
Susan

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Lucky:

I went through the very same hell. IBS, this, that...then I started to lose weight, about 25 lbs in a very short time. Then they found 2 large tumors.

I hope you don't have what we are afraid of, but having a colonoscopy is absolutely the right thing to do right now. My colonoscopy at a local hostpital was ~$5000. The insurance company beat it down to ~$3000. If you pay for it yourself, you will end up paying for the sticker price. And that's a lot of money for anyone.

The things to remember with cancer and indeeed any disease:
1. Time = Life.
2. Treatment earlier = Better.
3. Hope is great, but hope is NOT a strategy.
4. You need a diagnosis, and then treatment.

What you need is a solid course of action that'll get you an colonoscopy right now. And if that doesn't lead to a clear diagnosis, then certainly more/other tests.

Here's what I suggest:
1. Contact the Lance Armstrong Foundation, tell them what you've been through and ask for help. They have so much clout, I think they can call your doctors and give them an earful.

2. Contact your Senator or Congressman, and have your family and friends help you call.

I will be happy to help you making calls and I am sure a bunch other people on this site would too.

Lucky - let me know how I can help. I really want to help you in some tangible, effectively and result-oriented way. Send me a private email if you want.

Ying

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Here's the phone number at the Lance Armstrong Foundation 1-866-235-7205. The web site is at http://www.livestrong.org/site/c.jvKZLbMRIsG/b.594849/k.CC7C/Home.htm.

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Lucky -

I have walked the EXACT road you have - CALL ME ASAP; I am active duty here in DC. I can help you cut through the crap - 301/427-2300, ext. 125

CDR SpongeBob

lucky123
Posts: 17
Joined: Jan 2007

Oh my gosh I have a million questions for you! Is it Bob??
My husband's a USAF chief at the pentagon and we are enrolled in Tricare Prime and our PCM (quack) is at Bolling. Sorry that wasn't nice, was it?

My husband called in a favor with the head Chief for Medical services for the DC area and he is hopefully going to get me in at Andrews this week instead of Ft Belvoir ( on the 23rd)
Waiting till the 23rd would have been insane. My freakin side hurts!

Bob Where did you get referred to for your treatment after your colonoscopy? WHere were you treated? I know Walter Reed is more for training docs (yikes)
Did you have have kind of say on where they would refer you after the colonscopy? Lombardi & Johns Hopkins are the best in the area (true?)but they aren't military so I'll bet getting a referral there from Tricare is tough.

Bethesda also does cancer treatment too and it looks like they have a center for it and not just a "wing" like Walter Reed.

I am being seen hopefully this week at Andrews but darn it all it is just a consult. Atleast it is something. So folks I am going to lay it on THICK,lol. I HAVE to get this test and soon!!
I just get the feeling time is running out (why?)
DO any of you ever feel like that?

I know everyone thinks I am not being positive and it's probably nothing but it has been YEARS of mild left sided lower pain but lately it is REALLY bad and waking me up at night.
and I am so darn thin. I HATE the way I look now. I'm only 5 feet tall and 94 pounds with NO fat anywhere. No matter how much I eat I gain nothing.

But I am a fighter and no wuss. The only thing I am truly afraid of is that the doctors will say, "it's too bad, we aren't going to treat it" and just give up on me and send me home...

sorry for the ramble Bob and the rest of you. It's been a long painful 3 days. I never thought I would ever hate 3 day weekends but I did this time. 3 days of no offices or bases open!!

I hope everyone is ok and is kickin the crap out of their cancer this week!!

Lucky

sallyg0119's picture
sallyg0119
Posts: 17
Joined: Jan 2007

Hi Lucky, I'm 32 and was told the same thing you were being told by my Dr. I changed Dr's and was told I have stage 4 colorectal cancer that spread to my liver and lungs. If you have to go to an outside Dr. then do it... It's your life fight for it......

suzannchili's picture
suzannchili
Posts: 135
Joined: Mar 2003

Hi. I heard the same crapolla too when I was 29 years old. It took me over a year and a change in primary care physician before I was sent for a colonoscopy. Do whatever you have to do to get a colonoscopy! Pay for it out of pocket or better yet lie and tell the doctor all of the symptoms one may have- blood in stool (this is a very effective one), diarhea, pain, weight loss, vomiting, etc. and have them order the test for you. It sounds like Sponge Bob is to the rescue- definitely call him- he'll have some great advice and he's easy to talk to. Good luck and keep fighting.

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