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.

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

_________________
Cindi NSCLC lllB Dx:11/02 at age 47
squamous cell carcinoma. T4N3M0 poorly differentiated (grade 3)

Aggressive, Curative Treatment:
Chemo (carboplatin/taxol weekly) and 8 weeks of daily radiation.
then taxotere 3 cycles
tx ended 6/03

NED every 3 months
Moderate Asthma
11/03 heart attack and stent
transient pleural/pericardial effusions
hypothyroidism
significant radiation pneumonitis
1/05 pneumonia
interstitial fibrosis
9/05 pleurodesis (talc procedure)VATS procedure to resolve chylothorax and effusions. Now loculated effusions.
ll/05 PET/CT clear/NED
10/06 CT Clear again!
12/06 heart/lung troubles
Biggest problem remains shortness of breath. (SOB)


Celebrating FOUR years since diagnosis: 11/02
2 brothers lost to lung Ca. Dick died at 37 from nsclc. John died at 42 from sclc

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.

_________________
Henk (age 71 at dx) is diagnosed 9/14/05 having NSCLC, adeno, st. IIIB, T4N0M0, pancoast tumor, inoperable. Also has COPD.
10/05 - 02/06 chemo (cisplatin/VP16) and radiation. Several bouts of pneumonia since 9/06.

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.

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

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

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

_________________
Kasey ~ 8 year survivor ~ Stage IIIb 'inoperable' (yea, right!) lung cancer
9/20/04 Dx lc
9/24/04 Bronchoscopy
10/08/04 CT guided needle biopsy
10/14/04 Dx Pancoast tumor - NSCLC 111a(?) - inoperable - incurable
11/02/04 2nd opinion - Sloan-Kettering - concurs with local dx and tx
11/03/04-12/02/04 Radiation x22 chemo x5 taxol/carboplatin
11/04 - 3rd opinion - FoxChase -turned away
11/04 FOUND LCSC & HOPE
11/04 4th opinion NIH - surgery possible
1/04/05 Successful surgery - RU lobectomy - all margins, nodes, and path reports are NEGATIVE
2/05 chemo x2 taxol/carboplatin
3/05 Esophagus stretched twice
4/06/05 bloodwork, chest x-ray, CT scan, PET scan, NED
5/05 2 more esophagus stretches
7/13/05 bloodwork, chest x-ray, CT scan, PET scan, brain MRI, NED
10/05/05 bloodwork, chest x-ray, PET/CT scan, NED
1/11/06 bloodwork, chest x-ray, PET/CT scan, brain MRI, NED
4/05/06 bloodwork, chest x-ray, PET/CT scan, NED
6/10/06 emergency appendectomy
7/12/06 bloodwork, chest x-ray, PET/CT scan, brain MRI, NED
9/26/06 bloodwork, chest x-ray, PET/CT scan, NED
1/10/07 bloodwork, urinalysis, chest x-ray, CT, PET/CT scan, arm CT, brain MRI, NED
7/11/07 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, NED
1/9/08 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT w/contrast.....mm 'spot' lower right lobe - watch and wait 3 months
4/8/08 bloodwork, urinalysis, chest x-ray, PET/CT scan, NED
10/14/08 bloodwork, urinaysis, chest x-ray, PET/CT scan, brain MRI, NED
4/15/09 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, NED
10/13/09 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT/contrast, NED
4/13-4/15/10 bloodwork, urinalysis, chest x-ray, PET/CT scan, brain MRI, CT/contrast, PFT, echocardiogram, EKG, stress test, NED
4/11-4/13/2011 bloodwork, urinalysis, chest x-ray, PET scan, CT scan w/contrast, brain MRI, NED
4/16-4/18/2012 bloodwork, urinalysis, chest x-ray, PET scan, CT scan w/contrast, brain MRI, NED

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

_________________
4/05 - 8cm x5cm tumor upper left lung. Bone and Brain mets. 6/05 radiation to spine and left clavicle. 7/05 stereotactic brain radiation. 8/05 chemo started, trial of gemcitibine and carboplatin. 9/05 ct indicates some shrinkage. 11/7 ct indicates additional shrinkage.
10/18 brain mri inconclusive, re do in 6 wks; 12/13 brain and spine mri, results are spine is fine, brain uncertain if its progression or necrosis. Brain Pet scan 12/22, results are no sign of cancer. CT 1/3 showed 9% reduction. 2 more cycles ordered.
2/2006 CT shows no change. Removed from trial but kept on the same drugs to allow for a reduction in dosage. Having difficulty with blood counts, so reduced dosage is to try and keep me on schedule. 3/06 Brain MRI shows new met. Treament undetermined as yet.
4/20 switched to Alimta due to bad blood counts on the gemcitabine/carboplatin.
4/20 Brain PET and MRI show necrosis where radiosurgery was used. May require surgery or medication.
6/4/06 - bone scan shows pretty clean can't find cause of flank pain.
6/15/06 - MRI for spine and Brain. Results 6/21 and neither were great. The pain seems to be coming from a tumor around T8 and unfortunately 2 new bain mets.
6/24 - changed from Altima to Taxotera. Scheduled for sim and then 10 days of radiation. Also scheduled for radio surgey.
7/5 - began 10 days radiation
7/13 - radio surgey for brain mets*
7/15 - Taxotere 3xMonth
10/18 - Brain scan no new lesions, treated lesions responding
10/18 - spine MRI, shows two fractures, but not cauing pain or symptoms.
11/1 - Brain MR Spect. Like an MRI, but maybe has some PET scan properties as well. Results consistent with the last MRI.
11/27 - headaches, new MRI, shows new lesions developed in less than 1 month. headache is caused by previously treated lesions where edema has resulted.
12/1 - started Tarceva
1/9 - Onc has me off Tarceva for a week to clear up a nail infection. Then back on it.
1/14 - I will be starting tremador which is a brain tumor chemo. Seeing if there might be a benefit as an alternative to WBR.
1/18 - Brain MRI looks good. All new mets except one seem smaller. Treated mets look good, edema almost gone. Doctors to confer and determine if Radio Surgery on 2 mets (6 total) or just wait and see.