speed of cancer growth

[spicysashimi]

I was diagnosed in August 2006. Staged IV. Back in February, I went to the ER complaining of chest pain. They took a chest x-ray, sent me home. Come to find out, the x-ray shows a nodule. More insult to injury: the radiologist saw the nodule, noted it in his report and no one contacted me.

When diagnosed I had/have mets in about 5 places in my back and in my right hip.

Given these facts, do y'all think I was probably stage IV in February? Or could I have been staged earlier?

Thanks,

aaron

[enyaw061032]

Hi, Aaron:

One thing I learned is that it is best to go to the hospital where you had the scans done, go to medical records, and ask for your own report; that way you can see what's going on and what the radiologist said; if your doctor doesn't call you about it, call the doctor right away and ask why you have not been contacted; but I think I'd also get a different doctor because to me this is gross negligence; depending on what type cancer you had and where and how fast it grows, could tell you how much it grew from the scan until you found out.

Barb

[Muriel]

Considered an attorney? I would. Sorry about this.

Muriel

[Andrea]

That just makes my blood boil. My dad had a chest xray in June, was told it was normal. Low and behold, looking back, his tumor was there, my dad was diagnosed in August (it was an incidential finding on an abdominal ct scan that showed lung base). We were told a couple of months in his case would not have made a difference. But if you have an aggressive tumor, maybe it could have.

I am so sorry

[spicysashimi]

I can't say that I am mad because there's nothing I can do but accept it as part of my reality.

I am just curious if anyone knows the average rate of tumor growth and metastasis for NSCLC. For example, do you go from Stage IIIA to IIIB in 6 weeks or 6 months?

The lawyer might not take the case because he's afraid their defense, that i was probably stage iv in february, will be too strong.

[Andrea]

I see what you mean, you can't be mad, but maybe disappointed. It just makes me angry how we sometimes have to be our own doctor.

I posted a question similar to yours in August about my dad and the responses I got were that it depends on the agressiveness and grade of the tumor. I would assume you have those pathology reports somewhere? My dad's was very low grade, so it is slow growing, a few months would not have made any difference. I also know from the med mal defense work my firm does that a few months often would not matter unless it is an ultra fast grade.

Maybe ask your oncologist what he thinks? I asked everyone on my dad's team just out of "curiousity" and they all also said it just depends, but his was too low grade to have made a difference in two months.

[spicysashimi]

I am pretty sure I am "poorly differentiated." I am not sure if that speaks to the grade or what.

[ernrol]

Arron,

The cancer could have already been in other parts of your body in February. If it was then it would have been stage IV. I would not show up on a chest X-Ray. But the attending physician should have seen that then and investigated it further. There is no question that some growth took place since February. I would consult with the doctor that you are going to now. What you don’t want to do is to get stressed out about it. You need to concentrate on being healed.

Stay positive,

Ernie

[mary colleen]

Aaron, my husband had a similar situation. He was told that "something" was showing in a chest x-ray (done for another reason) two years before his diagnosis with lung cancer. The radiologist judged it to be pneumonia. My husband was then treated for several bouts of pneumonia and/or bronchitis during the ensuing 2 year period. My husband is an unusually private person, and I chose to stand back and not interfere with any of this, though my fear and dread grew each time he was given more antibiotics for pneumonia. I knew better than to accept that a strong 49 year old man would have inexplicable bouts of recurrent lung infection without an underlying reason. I of course truly regret the fact that I didn't intervene.

The difference here is that my husband is ostensibly only Stage 2B, perhaps because his cell type (squamous) generally grows and spreads more slowly that adenocarcinoma.

I guess I'm rambling here. Your situation obviously struck a nerve for me. Couple of points to wrap up:

1. I agree 110% with Ernie. You need all of your energy to get well. Choosing not to look back is hard, and I understand that.

2. I doubt that anyone could say with certainty whether or not your cancer would have been at Stage 4 if diagnosed on the first pass. An oncologist could probably give you some information on known growth/spread norms.

3. You asked about degree of cell differentiation. My understanding from reading is that a less differentiated tumor is a higher grade tumor, and thus more agressive. There is a good explanation of tumor grade and its relationship to degree of differentiation on the NCI website: http://www.cancer.gov/cancertopics/fact ... umor-grade

Ok, I'll stop now!

[Nick C]

Generally, chest x-rays suck. They don't work (15% of the time they do) but they stink at finding early stage lung cancer.

[ursol]

Aaron,

I think alot of mistakes are made by radiologists reading x-rays, ct scans and even Pet scans. the mistake I have made is not asked for my own reports and copies. I need to do that better.

Lilly

[Welthy]

Aaron,

I don't have the answer to your question, but agree that the whole nodule thing was pretty hinky. We've thought that "if only we had gone to the Doctor with that little cough back in October-November" (instead of waiting until February-March). But that was in our hands, not some jerk reading an x-ray, so I can't even imagine your frustration. I agree that you need to focus on healing, but I also think there should be some medical accountability.

Tony was also poorly differentiated and I can give you an example of how fast his grew. After 20 cycles of 2 different types of chemo, he took a three month break. He still had the main tumor, but much less active at that time. After three months he had significant progression. His primary tumor was larger and seven new tumors were found in both lungs. Higher SUV levels then when he was originally diagnosed. The caveat here is that, following treatment, the cancer tends to mutate, becomes more aggressive, and is harder to treat. So your progression during the six month period may have been less, but definitely you still would have had progression. Your cancer was growing unchecked. That being said, everyone's cancer grows and spreads differently. Tony's cancer didn't leave his lungs until recently and he is 21 mos out from diagnosis and never been cancer free. Everyone's body is a unique chemical factory, so there is no ability to compare one person's growth patterns with another. But as Mary pointed out, there are some constants.

It is totally your call as to whether to pursue this shocking lack of judgement on the part of the Doctors involved. I think it is a double-edged sword though, because you also cannot consume yourself with this when you need to fight the beast itself.

I'm just so sorry this happened. You know we are here for you to vent away and offer ALL kinds of opinions! I'm just sickened by what you experienced.

Welthy

[Don M]

Aaron:

Somebody definitely dropped the ball when you weren’t notified of the nodule call in the xray. The next step would have been a pet/ct scan. I can understand a wrong call, but you should still be aware of a nodule call and then decide if you want to pursue it.

My adeno is moderately differentiated. At least the first 2 cancers were. I don't know for sure about my 3rd cancer. Moderately differentiated means it is moderately aggressive. Poorly differentiated means it is more aggressive. I think it is possible that it may have been at an earlier stage for you.

I doubt that I would litigate. I would want to focus on my cancer treatment, not litigation. At least now you know to get copies of everything.

I had a similar situation early on in my cancer career. I had an oncologist tell me that my report was just fine. I took his word and went my merry way. It turned out that the radiologist had reported a sub centimeter nodule that was worrisome. I wish I had been told about it at the time so that I could join in on the worry if I wanted to. It turned out that the nodule was caught at an xray 3 months later too and this time I had a follow-up ct scan and it was 1.2 cm. I still caught it early. If I had read the report myself, I would have known of it earlier. I get copies of everything now. I guess my oncologist thought a sub centimeter nodule was no big thing, or maybe he did not read the report very thoroughly.

Don M

[needhope]

Hi,

A similar situation happened to my dad. A spot was noticed on his lung almost six months prior to his diagnosis. After he was given a bronchoscopy he was told that it was not cancer. Six months later he woke up with extreme swelling on the side of his neck and told, after a biopsy, that it was indeed lung cancer which had spread throughout the mediastinum. His is moderately differentiated adenocarcinoma.

I often have the "what ifs" and wonder what stage the cancer was when first noticed and whether we could have caught it before it reached Stage IV. Why did the doctors just rely on a bronchoscopy and not do a biopsy from the beginning to make sure? But I realize there is nothing we can do about it now. I am just more conscious of gettting copies of reports and making sure the appropriate scans are done.

But it makes you knowing that on top of battling a disease as scary as cancer, you have to check behind people that you are paying to get the job done.

Sincerely,

Needhope

[Lassie]

Hi Aaron,

Sorry, I can not comment on your actual question as I have small cell lung cancer. With small cell lung cancer, chest x-rays done even 1 to 2 months before may not show the tumors and yet a month later you can be diagnosed as extensive as it has spread so much.It is an evil beast. This also may be so with with your type.

One thing I can comment on, is your right to receive copies of all tests performed on you. From the very beginning I asked, was put off and then demanded. There is not a blood test or any procedure done on me that I do not have a copy for. Now they know that on each return visit they have a release form waiting with a package containing all copies of scans, etc

This is very valurable info for me as I pick everything apart, compare, research and am armed if there is anything I wish to question.

As a nurse, I worry about things too much, I think...for instance, the radiologist that reads my scans is always the same person as I am in a study that requires this to be so, if possible. On my last bone scan, a different radiologiost read my report and used the "could" in it for a two new hots spots picked up in the shoulders which she thinks is arthritis. "Could" is scary for someone like us!

My oncologist stated your bone scans are fine...which they are. However, upon closer look, I now know to watch carefully for any pain, etc in these areas. Thus the imporatance of having your own paperwork.

Sorry, I wrote a book!

Val