Symptoms and don't know what to do

Davew63

Hi

im a patient with the VA and a year ago I was seen for chest pain and an X-ray was done of my chest. The results were read by an outside radiologist and a spot was seen on my left lung. My Dr. didnt see this and I noticed the notes on my own 2 months later. I brought this to his attention and they rushed me in for a PET scan and was unremarkable. 2 months ago I developed these symptoms suddenly: nausea, no appetite, weight loss, chest and back pain, extreme fatigue, cough, diarrhea, and numbness in my leg along with swollen lymph nodes in my groun. I don't know what to do because I don't trust the VA. I don't have insurance to go anywhere else. Thank you for helping. 

MyJourneywithCancer

Hello

Sorry to hear what you are goimg through lately.

Let's count what we have. Select the best VA facility, and follow up with further diagnostics as soon as possible. You are the best advocate of your health.

Best wishes.

kfs52

-I am not sure that the VA

-I am not sure that the VA has done you a disservice. I say this because I was having some issues with breathing when I exercised hard last year, so having Blue Cross PPO, I had a full check up. They sent me to a cardiologist - everything good. They had me get a chest x-ray - all clear. They sent me to a pulmonologist who said I probably had exercise induced asthma. Then gave me 2 scripts for very expensive inhalers. Fast forward. In May my ears hurt, just an ear ache. I went to my regular doctor who said just take these steriods. Then the pain went from my ears, down my throat, into my chest. So new chest x-ray, they say pnuemonia. I get antibotics and new chest x-ray 2 weeks later. Next thing I know they say maybe cancer - you need CT. My doctor says 'no' you cannot have cancer, we just had a chest x-ray 7 months ago and you were fine. So she sends me for 2 new x-rays someplace else. Some thousands of dollars of co pays later - I get sent back to pulmonologist who says I think you have pnuemonia and we need to hit it again with antibotics. We do that and another CT, then I am coughing up blood. Now I am off for PET scan because I have cancer and they need to determine exactly where and the stage of cancer. 

Dave - just like you, it feels like we should blame someone for not figuring out something. But the way I am looking at it, is even if they would have acted 2 months ago - what difference would it have made? I know everyone says early detection, yada yada. But even if we had moved faster, I think it really would have made no difference. The focus should be on you determining what you want to do about it.  Because one thing I have noticed is that everyone seems to want to steer you cancer ship for you - and I am just not okay with that. 

 

 

griffithds

Pre-Op

Just diagnoses with large mass in left upper lobe via CT scan. Doc assumes carcinoma. I'm scared and anxious. I live in a very small town in the mountains, but have decided that, after the PET scan today, I will switch to Mayo in Jax, FL if possible. This little hospital here almost killed me when my appendix perforated last year. I hate the thought of lobe removal, but that's the best guess of the local pulmonologst. I've always had a fear of smothering. Are there any non-invasive radiology and chemo alternatives to removing left upper lobe (largest lobe!)? I will keep posting as I learn more in hopes of helping someone else deal with the fear, anxiety, and sadness I am now experiencing

kfs52

Hey

Griffithds- mine is in the right and yeah they have been saying all that scary stuff to me too. First this is the way I look at it after I bite down on the panic, I dont have to do anything. Okay, after I get past that, yes the PET scan could come back and say since this is really early they could just easily remove it with surgery. But surgery is really scary too and not a for sure deal. It sounds like we are both at the same stage of discovery. Yeah maybe I have more options since I am in Houston the home of cancer help - but I think we just need to not panic or let these doctors take over and make all the decisions for us. I will keep you updated too - Kimberly

ClaCla

Newly Found Lung Mass

I just learned this week that a CT scan shows there is a 3.5 x 4.5 cm mass deep inside my lower left lung.  The pulmonologist said there is only a minuscule chance of it not being lung cancer.  I'm waiting to have a PET scan.  So I too am at the same point of getting a diagnosis as kfs52 and griffithds.  I feel better already just finding other people to compare notes with.  Also want to express my sympathies with original poster and others who got the run-around before a correct diagnosis was made.

kfs52

PET Scan

Griffithds and ClaCla, my name is Kimberly and I live in the Houston area. Maybe we can pal this out together. My PET scan is scheduled for Aug 1st and I will get the results on Aug 3rd. My doctor is making me go in for my results and will not give them to me over the phone, seems stupid right. It wasn't like I flipped out when we dicussed this the first couple of times. But I think I made the simple mistake of letting him know that I did not intend to throw everything they had in the medical book at fighting this illness - if diagnosed. So FYI, don't make that mistake. 

As for the run around, my primary care doctor has been my doctor for almost 17 years. In her defense, I understand why she was hesitant to go directly to the cancer box. I had just had a clear x-ray and my family did not have a history of cancer. I had one uncle you got lung cancer and he smoked almost everyday of his life, 3 pack, Marboro Reds. He was diagnosed when he was 70 years old and threw everything at it because in his second marriage he had a autistic son and his wife had no living family. He lived appx 1.5 years after diagnosis and it was not good. 

Anyway, perhaps we can keep up with each others PET scans and be there for each other as we pass through this. Talk soon. Kimberly

 

 

ClaCla

kfs52 said:

PET Scan

Griffithds and ClaCla, my name is Kimberly and I live in the Houston area. Maybe we can pal this out together. My PET scan is scheduled for Aug 1st and I will get the results on Aug 3rd. My doctor is making me go in for my results and will not give them to me over the phone, seems stupid right. It wasn't like I flipped out when we dicussed this the first couple of times. But I think I made the simple mistake of letting him know that I did not intend to throw everything they had in the medical book at fighting this illness - if diagnosed. So FYI, don't make that mistake. 

As for the run around, my primary care doctor has been my doctor for almost 17 years. In her defense, I understand why she was hesitant to go directly to the cancer box. I had just had a clear x-ray and my family did not have a history of cancer. I had one uncle you got lung cancer and he smoked almost everyday of his life, 3 pack, Marboro Reds. He was diagnosed when he was 70 years old and threw everything at it because in his second marriage he had a autistic son and his wife had no living family. He lived appx 1.5 years after diagnosis and it was not good. 

Anyway, perhaps we can keep up with each others PET scans and be there for each other as we pass through this. Talk soon. Kimberly

 

 

PET Scan

Hi Kimberly (kfs52) and Griffithds, I appreciated hearing from Kimberly today, but am bushed tonight.  So I'll start a new discussion thread tomorrow about being at this phase of diagnosis.  Glad you know your PET scan date, Kimberly.

 

ClaCla

DaveW63

Dave, hopefully you're working with a specialist now that you've had your PET Scan.  You should definitely ask for a different Primary Care doctor in the future; I would assume that's an option.  You are in my thoughts and prayers for direction to those who can best help you!

pabark

VA Care

Get to a private doctor for a second opinion. Been there with the VA - not doing that anymore.

sondrahays

My husband was diaognoised in

My husband was diaognoised in June of this year, after three months of being told by several doctors, ER that he had Pneunomia. he was on antibitocs for months. His cough just presisted and got worse. we had a xray 5/16 said he just pneumonia. two weeks later a repeat and he had one mass that was 8.5 x 3.5 or close to that. our heads were spinning. we have gotten treatment for two rounds of chemo. thankfully his PET and other test have been clear that he has it not where else. but we were told by the doctor treating him, that he was still considered extensive and they would not be going for a cure because of th size of the tumor. again, we were baffeled by all this. we did the first two rounds and his cancer responded better than average shrank over 50% and his doctor still told us he would not do radiation. and he was just given him quality of life 12-18 months. I was so upset that this doctor would treat us as if we just had to deal with this and take treamtent has he wanted us to. I told my husband, we were going again for another opinion. thank goodness we did, he is now going to be treated at the Cleveland Clinic and will get raditation and chemo together, while they said they could not guarantee a cure, he had a chance.!! And that was music to our years. my advice is get as many opinions as you can, and do not let one dcotor decide your fate. you are in control of your body and your treatment plan. I read all these blogs above, prayers and best wishes to you all.