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Is this normal ?

Deborah VF

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Hi Everyone,

I am having a really rough day. I am still in the process of getting referred for the Biopsy, and have not even spoken to Oncologist.

I am very scared and confused. I know very little about what is going on in my body. It was the pain that finally sent me to the ER almost 2 weeks ago. Intense pain in my back and chest. Pain that had progressed over a couple months to the point I couldnt bare it anymore. (I thought it was my Scoliosis). I am trying to stay positive and on some level, even be grateful for the pain for getting me to doc fairly early.

I was shown the area on my body where the mass is suppose to be. There has been very minimal pain directly from that area.

Over the last 2 weeks the pain has continued to increase. There are times where it brings me to tears, and I am on pretty strong pain meds (which hardly touch it). I have always considered myself to have a fairly high pain tolerance.

This last week the pain is now in my abdomen as well. With sever stomach pains and the outter walls of my rib cage burning. The last couple days, my left side (where the mass is) from shoulder to rib cage has been numb. This morning, I am having sharp shooting pains from the vacinity of the mass, and the front of my chest gets so tight it feels like a foriegn plate or something inside me..

The pain is never completely gone, although I have had some really good days.

The pain is very irratic. Sometimes I may have all areas hurting as same time, or just one area hurting intensely. Ranging from moderate and tolerable one minute, to hiking to extreme levels, where I am in tears the next.

I am so scared because I dont know if this intensity or type of pain is normal for the stage they are thinking I am, or if maybe I am at a higher stage. I dont know if the changes in the pain locations are indicating it is growing or spreading. I am trying to stay calm and positive, because I know that getting upset aggravates the pain. Ive tried to stop reading so much about it to help with the stress, till I am able to see Oncologist.

From what little information I have been given this far, it is presumed that I'm a late stage1 or early stage2. That was from my PCP. This was my dx.

06/08/10***Final Report***

CT Chest with contrast. FINGINGS:

3.1 x 4.0 cm mass in the left medial lung or hilar region is present. There is minimal spiculated surrounding airspace disease.

Malignancy is the diagnosis of the exclusion and is suspected.

There are a few scattered nonenlarged mediastinal lymph nodes.

There is a dextro-convex thoracic scoliosis.

There is minimal patchy density in the lingula probably representing postobstructive atelectasis. Correlate for fever.

There is no pleural effusion or pneumothorax.

I know this is different for everyone, and I read that some early stages have no associated pain at all, I know that the experience is as unique as the individual. But I am wanting to know if anyone else in their early stages had the intense pain prior to any treatments? Is this normal or comman ?

Thanks for any info.... Hugs

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Deborah, my personal opinion is that this extreme pain is unusual and not typical of most lung cancers. I'm a survivor, but also have several members of my family that had lung cancer (5). The other 5 had no symptoms until the cancer metastasized to other areas in their body.

We found my Mom's lung cancer when she had a Grand Mal Seizure, and found it had spread to her brain. She had no pain at that time.

We found my husband's Mom's lung cancer when she kept falling down, and we finally took her to the ER to find a met to the brain. She had no pain.

His brother's lung cancer was also found after it had spread to the bones, and he did have bone pain.

My aunt's lung cancer was found when she had a terribly upset stomach and could not eat for several days, and it was a met to the liver causing the discomfort, but was primary lung.

I could go on and on...the point being that every one is different. It is interesting about me. I had this strange tingle/pain in my left shoulder for a few years. I can remember distractedly massaging it as it was just this little nagging pain. Turns out that is exactly where my tumor was in my left upper lobe. Since they removed my lobe, the pain/tingle is gone.

All I can say to you is if I were in the kind of pain you've been in, I'd go to the Emergency room. This sounds serious and could be something other than the cancer diagnosis.

I'm not a physician, so I have nothing to share but my own experiences. I hope you get relief soon!

Judy in MI

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Hi Judy,

Thanks so much for responding, and confirming that this is not normal.

I am having a pretty good morning. Pain level is low. And I can think more clearly and positive when the pain is down.

I think your right and I am going to have to get agressive this week about getting someone to see me, and possibly just go to the ER, even though the ones here local to me (I live in a Rural area), are likely to just treat me with more pain meds and send me to follow up with my PCP.. back to square one.

I may have to go into Houston to get someone to actually do something.

I was able to find a place that will do a self-pay for my biopsy (I have no insurance and am not medicaid eligible, but I can self-pay for this testing). Seems no one wants to take cash anymore.. go figure.

Now I just need a doc who can make the referral and my PCP is not able to do that for some reason. I found one who would, but he cant get me in till mid-august.. GRRR.. :D.

Please cross fingers and say prayer, I can find a doc who will take a self pay, so I can get some real answers.

My biggest fear is that this "thing", whatever it is, is growing, and... seeing how much longer I may have to deal with the pain before we get through this process.

The waiting.. The not knowing is driving me mad.

Thanks again, for the response... hugsss

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Deborah, I agree with Judy that most of us do not get diagnosed from pain as a symptom. Some event or other, in my case pneumonia, led to my dx. I also agree that the pain could be from some other source. I feel for you in your frustration. I was also self-pay when I was dx'd The hospital that would take me let us pay for the dx but my onc had to go to bat for me before I could get treatment. It really is a frustrating situation. But I understand going to the ER can sometimes help.

Judy in KW

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