Need advise, direction, or something.....

[VeryDistressed]

First and foremost, I apologize if this message is inappropriate, I really don't know where else to turn. I sincerely need some advise, help, direction, or something. ... I'm about ready to loose my mind over all this.

I've been ill for approx. 1.5-2 years, and cant seem to get a doctor to take me serious. My symptoms were as follows, ...... Started having a overall tired and "run down feeling", unintended weight loss from 135lbs. to 118lbs within a 9 month time frame. One swollen lymph node in my right armpit, and once in a great while in the genital area (but they would reduce after a few days), light right side chest pain, and a feeling of fullness. I went to our local general practice doctor and he performed blood work and thyroid test, yet said there wasn't anything abnormal that he found. Nothing changed for a few months, so I went back a second time, ... he again did blood work, again reporting he found nothing concerning. I lost a few more pounds since last visit. I communicated my sincere distress that I might have lung cancer due to the fact that I have been a heavy smoker (clove cigarettes, 2+ packs a day) for 17-18 years. He said I was "too young for something like that" (I'm currently 34, 35 in 12/03), yet I should quit smoking. I insisted that he take a chest x-ray for no other reason then to under my stress, and he did.... reporting nothing was "abnormal."

After living with these same symptoms with no improvement at all, a family member suggested I drive to the Capital city's emergency room (we live in a very small town) to be checked out. When I arrived, the attending doctor took chest x-rays, ran a EKG, performed blood work (I think he called it a "CBC and chem panel") and even a blood culture. His diagnosis? -- I had a profound case of "COPD." I was told to follow up with my regular doctor concerning the swollen lymph nodes (now I have the same large one in my right arm pit, and a number of small one in my left arm pit.... as well as two on each side of my neck) and abdominal pain/fullness (before I could not describe where it was actually coming from... now I can feel a hard area right below my ribcage on the right side.)

I made another appointment with our local doctor, and he performed "blood work" again,..... and again conveyed he found nothing of concern. He did ask me if the pain was greater after eating fatty foods..... I said the pain doesn't get worse at all... its always the same uncomfortable feeling. He said it was probably "gastritis." I just didn't agree, and still feel its more then that. A friend recommend that I see her doctor, with I have. He too did blood work and said "I think your just fine." I'm sincerely concerned as I feel worse than I ever have before. Tired all the time, the right side hard area under my ribcage is always uncomfortable, chest pain is more prevalent, etc. If you can help I would be very grateful as I'm starting to think no one really cares or is taking this seriously. I have a 19 month old son I dearly love and I owe it to him to do whatever I can to prevent/deal with this the best I can. Thank you and God bless.

[bart ziggie ( Greg )]

Distressed, It sounds to me like your fears and concerns are genuine. You didnt mention where you were from except a very small town.On your visit to the larger city you metion an x-ray,ekg,blood work, etc..did they do a CAT SCAN ? Your symptoms are of concern to me. You need to have a CT SCAN of your chest done ASAP. A simple x-ray is not a foolproof way of detecting tumors and or lung cancer. As far as the drs. comment about the age thing forget it ! I was diagnosed in march of this year with SCLC at 34 years old. My symptoms were quite similar to yours. I also have COPD. Its obvious to me that 1.5 years is way too long to be living with the fear that one might have lung cancer. You have got to find something out immediately for your own piece of mind. Do whatever it takes to get somewhere to get additional testing done. In my opinion a CT scan of your chest would be a good place to start. I wish you the best in this matter. Please keep us posted on your status. Hope this has been of some help to you.

Regards

Greg

[marisa]

Hi Distressed! First off... try to quit smoking! My daughter has just turned 30 and she has been diagnosed with COPD. Her doctors have told her if she doesn't quit smoking she will be on oxygen constantly within 7 years, that's if she doesn't get lung cancer first. I would strongly advise you to go to a larger community and demand a CAT scan. I wish you all the luck.. it sounds as if you are going through alot of anquish!

[berisa]

Hi Distressed, Greg and Marisa are right. Insist doing some further tests such as CT Scan. Maybe if you could tell where are you living in, all nice guys here could give you a hand by suggesting some good clinics / hospitals etc. Best Regards to you.

[kimblanchard]

Distressed,

I agree with the others that you need to get a CT scan immediately. Don't let others let you think your crazy. You know your body better than anyone. Keep pushing for answers, switch doctors, hospitals, etc.... until you find them.

Let us know the outcome!

Kim

[Snowflake]

One more suggestion, Distressed -

Don't stop with a CT of the chest, get one of the abdomen. Chest CT covers down the lungs, something lower than the ribs would be considered abdomen....and the contrast dye that ya have to drink for THAT test can give you the runs for up to three days afterward (a side effect that wasn't listed on my consent form)...

I have had pain on the right side below my ribs (not under) since surgery - I had a gall bladder function test recently and the pains, etc., could be caused by a malfunctioning gall bladder. I have a consult with a surgeon next week. My oncologist said it was my liver, dealing with the stress of the surgery, my primary doctor wanted to test the gall bladder...

Don't bite on the "you're too young" line (Greg, you are a mere three days younger than me). Lung cancer is not a disease of the aged...it's pretty indiscriminate.

As always, if you are not happy with what you are hearing from a doctor, find another one. They provide a service you pay for - fire 'em if you aren't pleased!

I hope you are suffering from some form of hypochondria, the BEST answer that you could receive regarding your symptoms....

Becky

aka Snowflake

[VeryDistressed]

Wow, what can I say but I'm impressed and sincerely appreciate all the responses I have received. I was worried I wouldn't receive any advise.... Honestly, thank you all again. To answer a few questions that were posed, ... I live in Kansas.

I informed my wife that I posted here about my situation, and she felt I neglected an important fact .... I have been coughing up large amounts of phlem (mainly in the morning hours) that is defiantly brown in color, yet sometimes includes red streaks or has a overall pinkish tone.

During my visit to the Topeka, KS emergency room, they did not perform a CT scan. The attending physician told my wife he was "concerned about possible lung cancer" and asked if I was having "tan colored stools." (I didn't know about that until just this morning.) He also told my wife, "I didn't see any tumors on the radiographs, but he's got COPD." I'm not sure it makes any difference at all, (if someone can tell me I'd appreciate hearing about it....) Does this information mean something, or since it wasn't a CT scan is the information invalid? If he didn't see any tumors does that mean its likely they are small if there? Can lung cancer be seen in a x-ray for that matter most of the time?

After reading your messages, I called our regular doctor this morning and said I wanted a CT scan done of my chest and abdomen area. He wants to see me at 9:30 AM tomorrow. I got the feeling that he didn't think it was necessary, yet at this point I really done care anymore .... I'll admit it, (something that's hard for me to do) I'm scared to death! I have a family, a very good little boy, and feel a huge responsibility to do what I can to figure this situation out for them. I will keep you all posted on what transpires.

Again, (I cant say this enough) thank you for offering advise when many of you have your own situations to deal with. I feel my situation is nothing compared to what some of you have faced (or are currently facing) I want it to be known that your helpfulness is not in vane, .. its very very much appreciated.

P.S. I've decided that I'm going to try to stop smoking starting on the 13th. Tomorrow I intend to ask the doctor about the patch. I just hope I can do it.... I fear I'll not be able too.

[Snowflake]

A few more thoughts:

Did you mention to your doctor what you bring up when you cough? I know there's a sputum test for TB, cancer, etc. Blood coming from ANY orifice is a reason to talk to a doctor, it's NOT a good thing.

Early cancer is normally NOT visible on an X-ray. X-rays are not for soft tissue, they are for looking at bones and other dense material. My tumor did not show up on a chest X-ray in March, but DID show up almost eight months later (according to my oncologist, it had been growing AT LEAST three years).

Good luck!

[Hebbie]

I am very glad to hear that the doctor is seeing you tomorrow morning -- don't let him talk you out of the CT Scan -- insist on it (and please mention to him the blood-streaked phlem). It is YOUR body and YOUR health (sometimes doctors need to be reminded of that fact!).

If anything, having the scan will ease your mind. I will be hoping for the best of results for you!

Keep us all posted,

Heather

[karen335]

Distressed,

I would find another doctor and get an opinion from him. Maybe the doctor you are currently seeing doesn't have the experience and/or expertise that you need. Especially since you are in a small town.

Stay strong and please try and quit smoking. I know it is hard to stop. I smoked for 38 yrs, never stopping... January 10th 2003, I went into the doctor's office smoking, I walked out and have not touched a cig. since. Doc asked me if LC ran in my family, scared the he** out of me. I am now a smokers nightmare, (LOL.) I am wishing you the best and will pray that the diagnosis is not LC.

God Bless

Karen

[Fay A.]

While you're at this I would like to suggest that you begin obtaining copies of all radiologic studies, lab tests, etc. that have been done (obtain these copies from the hospital/lab directly), along with requesting copies of your entire medical chart from the physician(s) you've seen. It is just a good idea for you to maintain a complete copy of your personal health record.

My Oncologist recently told me that she sees young, late stage lung cancer patients because their Primary Care Physicians fail to recognise that lung cancer can occur in-and DOES occur in-young people, including those who have never smoked.

One more thing.... tell your doc you also want a PET Scan. Another question....Do you have an HMO, and/or is your health care associated in any way with the Military? Or were you in the military? My opinion is they are notorious for failing to diagnose lung cancer in people who smoke until late stages, even when people are coming to them for help.

Wishing you well....hopefully this will turn out to be something easily treated once diagnosed. If it is lung cancer, then you've come to a great place for information and support.

Fay A.

[Ry]

Hey Distressed,

Just want to get my 2 cents in. What worked for my husband to quit smoking was Zyban or Wellbutrin (same drug different name). Wishing you all the best with that.

Please come back and let us know what the doctor says. We'll all be thinking of you.

[VeryDistressed]

Okay, went to the doctor's appointment today. He insisted on doing blood work and another chest x-ray. I requested a copy of his report so I could start keeping a record of this things. (thax Fay) They scheduled an appointment for the follow-up tests to be done on the 20th. Thanks again everyone for helping me out on this situation.

The following is the report I received today, anything "stand out" or not sound right (whats ROS or NAD?)

Review of systems:

General: Some anorexia. Some weight loss. No fevers or chills.

Pulmonary:

No shortness of breath. Cough occasionally productive of slightly bloody sputum.

Cardiac:

Some chest pain the right upper chest with no shortness of breath. No exertional chest pain, dyspnea or diaphoresis.

Gastrointestinal:

Anorexia. No nausea vomiting or diarrhea.

Past medical history:

Ref: Apr./03 chart for ROS.

Social history:

Patient is a smoker. He denies alcohol or illicit drug use.

Physical Examination:

NAD

Vital signs:

Reviewed nurses notes.

Pulmonary:

Clear to auscultation and percussion.

Chest:

No tenderness to palpation. 1 axillary node on right side which measures approximately 2 cm in length and is smooth. 1 axillary node on right side measures approximately 1 cm in length, smooth. Neither are tender. Both mobel.

Minimal findings on palpation of left axilla. No definite nodes noted.

Cardiac:

Regular rhythm w/o murmur gallop or rub.

Abdomen:

Soft. Bowel sounds normal. Nontender. No guarding or rebound.

Treatment:

Chest x-ray: Reviewed by physician. No pneumothorax. Significant COPD. No mass.

CBC: WBC 5.1 hemoglobin 14.9.

Medical decision making:

This 33-year-old male has COPD. The patient has some anorexia and weight loss. I do not see evidence for pulmonary tumor. However I am concerned about a right axillary lymph node. Patient requires referral and follow-up concerning possible biopsy of node. Patient insists on CT imagery, requires referral.

Diagnosis:

weight loss. Chest pain.

Disposition:

No smoking. Follow-up with referrals. Ultram 50mg every 3 to 4 hours as need for pain. #25. Keflex 500mg 4 times daily. #40. Return if worse.

[Guest CindiB]

Hey distressed,

Not meaning to frighten you but if you're doctor will not schedule you for a CT Scan IMMEDIATELY, find another doctor NOW. My mother was treated by her primary care physician for eight months for COPD/asthma and acute/chronic bronchitis. NEVER did a chest xray no matter how many times she asked him and NEVER did a CT scan. Eight months of patting her hand as she got worse and worse, trying this and that inhaler, singular, zyrtech, PROZAC for God's sakes while her cancer was eating her alive. He kept telling her he could 'tell by listening' that she did not have pneumonia. When we finally forced him to hospitalize her three weeks ago the cancer had completely taken one lung, a great deal of her bronchial passages , was extensive through the chest cavity. RUN DO NOT WALK to get a CT Scan, don't worry about your doctor and what he thinks of you, what his opinion of you is, or whether or not he thinks you are a hypochondriac. This is NOT something to toy with. Your life could be at stake, at the very LEAST your stress levels must be through the roof. You do have many of the symptoms of LC which does not MEAN that you have it, but it also does not mean that you do not. Be proactive, INSIST on the testing. Call friends, neighbors, work associates, ANYBODY for a referral. DO IT TOMORROW. You may not have next week.

Cindi

Mom dx 10/13/03 Stage IV non differenciated NSCLC

Inoperable, incurable (OR SO THEY SAY)

started radiation to kill the monster last Tuesday

WE WILL FIGHT NO MATTER WHAT

[Fay A.]

There is no excuse for there to be a delay in biopsying those enlarged lymph nodes in your armpit!!!!!!! It's an easily accessible area. A new chest xray is probably NOT going to tell you anything more than what the previous xrays told you. The labs are probably NOT going to tell you anything new, unless they've ordered some new studies, and even then you may continue to have "normal" findings.

You seem like a really nice guy, Mark....This isn't about being a nice guy. This is about you deciding that the life you are trying to save (yours) is worth the fight you are going to have to put up in order to do so. Because even if this IS not lung cancer, you are sick with something...and it's serious. Bloody sputum is serious...a diagnosis of severe COPD is serious, and for your age group I would be questioning that COPD diagnosis. There is a type of lung cancer called Bronchioloalveolar Carcinoma (BAC for short) that looks like COPD and/or pneumonia, interstitial fibrosis, and sometimes TB.... Your story sounds so much like mine, Mark, that I may be coming across too strongly. I won't apologize, though. I don't want to frighten you...I do want to motivate you to do whatever it is you must to make your medical providers do the appropriate diagnostics so that you know what is wrong with your lungs, and so you can be treated.

If you are willing to share your doctors name and mailing address with me, via private message or email, I will happily write a letter to him that might "motivate him" to be more forthcoming with the required tests. ( I ran into problems so I did a Congressional complaint and had my Congresswoman "motivate" my insurance company and former primary care manager to do what was needed.) Also, you might consider telling this physician that you want a referral to a Cancer Center for your diagnostic work up. Better yet, write the guy a letter, make a copy for yourself, with a copy going to your state representative who handles health and insurance issues, send it registered mail with signature required to all parties, detailing what you have been going through, how many appointments and when, what was done, the docs findings, and that you are worried about having cancer. That you want appropriate medical care done on a timely basis. And don't go to another appointment alone. Take someone with you who is smart, who can write down everything that is discussed by you and these docs. Someone who will make a good witness. Documentation is critical.

Okay, that's it for me...I hope that you don't allow them to engage in additional delaying tactics, Mark. Your life may depend upon it.

One other thing....not everyone is this way, but I have to tell you that unfortunately some radiologists are not very good at their jobs. If you can do it order copies of the actual xray films that have been taken, CT films, etc. and have them read by someone else.

Best wishes to you,

Fay A.

[Fay A.]

PS to my post above:

the way his notes read he makes it sound as if he has already made referrals for biopsy, CT scan, etc., and that it is up to you to follow up making the appointments, etc. Contact his office in writing to ask about this. I send FAXES then follow up with registered letters. And ask those who love you (wife, Mom and Dad, siblings, close friends) to help you. I know you're sick and this is hard.

Fay A.

[Guest CindiB]

WOW Fay,

You go girl. I love the attitude.

Cindi

[Ry]

I can't really add anything more to the excellent advice you've been given from Fay and everyone. Reading through this thread sent shivers right up my spine. I am scared for you, something is wrong.

Years ago a good friend of mine found an enlarged lymph node under his arm while taking a shower. It turned out to be non-hodgins lymphoma. You need to find out what you're dealing with.

Please come back here and let us know what happens

All the very best to you and your family.