what to do ? where to go?

[btdawgh]

I have not been diagnosised,but I am fairly confident I have Panocoast Lung Cancer. I have had symtoms of it for awhile...but have been dismissed by doctors...now I really need to know where to go to find someone who will listen to me. I am in Houston Texas and know MD Anderson is here...is that where I should start? Any certain doctor?

....I have been telling my doctor about the shoulder pain and scapular pain and now the arm pain but he will not listen....I think when you approach a doctor with a concern you believe to be true they look at you like....are you a doctor?

I am not...but I know me...I am not interested in spending time and money in having "muscle tests" or the like...if I do have cancer, I want to know NOW not after they have managed to run every test they can think of that will show nothing muscular and then they will tell me I am nuts or tense or depressed and or every other thing they can manage to think of....I am 59 years old have smoked since I am 14 old...everytime I ask about a symptom I have I am dismissed and told "nerve irriation" and the like.

I don't think that is what it is...I know the online info can be dangerous and should be read carefully but like they say..."if it walks like a duck and quacks like a duck...it probably is a duck"..

if it turns out not to be lung cancer then so be it, but I doubt that will be the case....I have a history of esphogus(spelled wrong I am sure) Barrets ESPHOGUS...pre-cancer...I was in an investigational study in Knoxville using a YAG laser in the late 90's ...it seems to be gone...but returned within the past few months...I have read Lung Cancer can result from that....and in May I had both my Thyroid and Parathyroid out...nodules and history of radiation...also a risk factor...

As I write this I am smoking a cigarette...yes, I am stupid...given the fact I am a single mother to two adult children with Muscular Dystrophy and an ex husband who has nothing to do with either of them. I am "it" for them...and don't really want them to even know I am writing this..

Since I can't seem to get any doctor PCP to listen to me about my pains all I can think of is MD Anderson here in Houston...but how difficult is it to get to see a Lung doc. there without another doctor sending me there?

Is there anyone "out there" on these boards who has or has beaten Panocoast Lung Cancer ? The symptoms to it are a bit different then some other Lung cancers as I have read. I have also read the survival rate for it are not good.

I know this board is for people who already know they have cancer...but I don't know where else to go to ask my questions. I do hope this is not a problem for anyone here.

I have another appt. with my PCP tomorrow to discuss regulation of my Thyroid Hormones...which he has not done well...since I am taking the same amount as before my surgery and I can barely move physically and am sure I need more.

This is my last pack of cigarettes...I promise, not that it will change the outcome of whatever I have..but I am armed with the nicorette gum..which is the worse thing for my esphogus but I have to start somewhere..

My mother broke three ribs last year..died at age of 84 after smoking two packs of cigarettes daily for as long as I can recall...she lived here with me also and the crud from the nicotine did motivate me to stop for several weeks...but I started again..I am weak and I do have lots of stress in my solo life and I am not a "drinker"...

If I don't "belong" here...I will leave..until I get a diagnosis....but I hope to find "support" here as I don't have anyone other then my disabled children and I am not ready to share with them yet.

My main question is ...how do I get to see a doctor who will investigate my symptoms in relation to my lungs?

Thanks for listening to me and no matter what happens now or in the future my thoughts are with everyone on these boards...my family has a long history of cancer and I have had cousins in my generation who "did not" beat the odds in dealing with cancer...prostate(told you I could not spell) as well as Colon Cancer..which has claimed the life of more then one of my family members...so I am well aware of the struggle faced by those on these boards.

[cindi o'h]

Ask your doctor for a chest xray, without telling him/her about your suspicions of a "pancoast tumor". Let him/her know you are have a high pack history and want to be screened. If you report that you have been coughing more than usual, and even maybe short of breath, your doctor will quickly comply.

I am hoping strongly that the xray delivers nothing to you but good news.

cindi o'h

[Ellen B.]

I agree with Cindi. Ask for a chest X-ray. Henks tumour was visible on the X-ray.

Pancoast is very rare and shoulderpain can have many other causes. I hope the X-ray will show nothing wrong!

Ellen.

[RandyW]

Yes inform THe Doctor of shortness of breath. This gives them a reason to do an X-ray and start the whole investigational process to finsd out what is wrong. 1 step will lead to another if 1 step turns upa positive. My late wife was diagnosed when she went to PCP with what she thought was Laryngitis. The tumour it turned out was pressing on a Vocal Cord Nerve. this is bestI can offer for now and have to agree with everyone else on this subject. Sending Prayers for Good results. If not we will be here for whatever you need to know and whenever you need some support and compassion.

[MsC1210]

Hello and welcome

I cannot offer more than the excellent advice you have already gotten but wanted to say hi and welcome you to the site.

Praying that your doctors will listen and that things turn out to be better than you are fearing.

Chris

[Kasey]

btdawgh,

First allow me to welcome you to 'our' place. I am a pancoast survivor. This board saved my life! Literally!! There are 2 other survivors here (these 2 wonderful 'angels' are the ones who reached out to me with hope and info) who have been surviving even longer than I have. I have been almost 'stalker' like tracking down pancoast survivors and I have located MANY. These folks have survived anywhere from 1-1/2 years up to over 18!!! That's right.

Now, before you can trek off to Anderson or anywhere else, you most likely need just 2 scans to ultimately determine pancoast. One is a chest x-ray and the other is a CT of the chest. I would think your PCP would be accommodating enough under the circumstnces to get those underway for you.

Not to scare you, but the pain you are experiencing could also be tumor pressing on nerves, etc. too. OR it may be nothing at all. Ask for the scans before you worry yourself into a frenzy. THEN and only then will you be able to meet this head on and make progress.

You have come to a great place for info and support. Be sure to let us know how things go, okay? In the meantime.............take a few deep breaths and be firm with you doc about getting those scans done.

Kasey

[marym]

HI,

There could be so many causes of pain in a shoulder. I hope the one you have is not lung cancer.

But, just get an xray. I did have a shoulder problem. After 2 weeks of rest and 2 weeks of physical therapy, I demanded that more investigation be done (so far, no diagnostic tests had been done). A simple Xray and I was diagnosed. I hope your diagnosis is somthing different - but you can go to your normal health care provided, a lung cancer specialist is not needed for this.

Good luck.

Mary