Some questions about when a diagnosis gets changed

[Addie]

I've noticed here that some people have had their dx changed after treatment. For example, someone getting chemo for sclc ends up being rediagnosed with nsclc or some combination of large and small cell.

I'm just sort of curious as to how often this happens? In reading the pathology report from during and after my biopsy....the initial frozen slide was inconclusive.....the notation being that it could be sclc or lymphoma.

I asked my oncologist about it and whether or not it seemed like a good idea to get a second opinion on the biopsy. He seemed to feel the report left little doubt once further tests were done, that this is sclc. But when I read the report it says the pathogist "favors sclc" over lymphoma.

That doesn't sound all that positive to me!! So then the worrier in me thinks...."I'm being treated for sclc but what if this IS actually lymphoma? What if a mistake was made?"

I'm probably just borrowing trouble with these thoughts, I know. But when I keep reading about those of you whose dx has been changed....it does cause a person to wonder!!

Should I think about a second opinion on the biopsy anyway...or should I go with what my oncologist said? I should say here, that I REALLY like my onc. He's straightforward and open and takes as much time as we need to get our questions answered...so already, I do have a great deal of trust in him.

It just troubles me that others have apparently been misdiagnosed....and it makes one wonder about one's own dx, you know?

[Guest bean_si (Not Active)]

Okay, I don't want to add to your worries but since you asked, I will tell you the following.

I've seen on this board, a number of cases where SCLC was mis-diagnosed. Just for your peace of mind, you might want to try a second opinion.

I like my onc too & I think he was a tad annoyed that I took it into my own hands to have my slides sent to M.D. Anderson. I mean I downloaded MD Anderson form for 2nd opinion, went to pathology dept. at hospital, signed papers and after a couple days began to call M.D. Anderson path expeditor to see where biopsy was. I had her fax results to ME.

I decided to do this after realizing my tumor was STILL over 5 cms at the end of my combo chemo/radiation. I felt something was wrong. Also you might want to visit the following link (needs to be cut and paste I think). I'm copying a bit of article here. It's pretty heavy stuff - not for the lay person. The study was done in Japan. My onc. had told me at the beginning, they don't do tumor markers for SCLC. Too bad he didn't do it.

http://216.239.57.104/search?q=cache:XG ... ed.uoc.gr/

OR/2002/volume9/number3/581-583.pdf+SCLC+%22bronchogenic+carcinoma%22&hl=en

Abstract

Neuron-specific enolase (NSE) is a specific tumor marker in small cell lung cancer (SCLC) patients, however, it has been reported that serum NSE levels are elevated in some patients with non-small cell lung cancer (NSCLC). To determine the most suitable cut-off level to distinguish between these two types of cancers, NSE levels were measured on

serum samples of 417 patients with lung cancer without clinical information. Receiver operating characteristic (ROC) curve showed 14.5 ng/ml as a cut-off level and the 95 percentile serum NSE level in NSCLC was 20.5 ng/ml. None of the NSCLC patients had serum NSE levels more than 70 ng/ml.

The measurement of serum NSE provides a discrimination between NSCLC and SCLC. If an NSCLC patient presents with a NSE level >20.5 ng/ml, pathological features must be examined with regard to the neuroendocrine differentiation.

Introduction

Lung cancers are classified into four major cell types by histology: small cell lung cancer (SCLC), lung adeno-carcinoma, squamous cell carcinoma, and large cell lung cancer (1); the last three types being grouped together as non-small cell lung cancer (NSCLC). The correct diagnosis of SCLC and NSCLC is essential both for therapeutic and prognostic reasons. In addition to histology, an alternative diagnostic methodology may be useful, especially if the system is based on simple laboratory tests, performed on

serum. Among serum tests, neuron-specific enolase (NSE) has been approved as a tumor marker for SCLC in Japan as well as in European countries (2-9). However, NSE level seems to be elevated in some patients with NSCLC. In such cases, if chest X-ray findings are not consistent with SCLC, further invasive tests are often indicated to rule out co-existence of SCLC.

[dadstimeon]

Hi Addie,

Very understandable for you to feel this way. I would bring up your concerns to your doctor first and tell him why. Ask him what does "favors sclc" over lymphoma really mean? If not satisfied and you do not feel comfortable tell him you would like a second opinion. Any doctor should not have a problem with a patient doing that. It's our right as a patient. If anything it will give you peace of mind. Go to the bloch site below they encourage a second opinion and point you to the NCI (National Cancer Institute) site that talks about getting a PDQ (Physician Data Query) that might help you with your treatment(s) and decision. It's in the Info For Patients section. Best to be pro-active. Hope this helps. Peace take care and God Bless

Rich

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[Snowflake]

Addie,

My oncologist INSISTED on a second opinion. In fact, he lined me up with MD Anderson and made sure I had all testing completed before heading down, lined up having the pathology slide sent, etc.

I trust the man, he's earned it.

Go with your gut, you're in tune with your women's intuition, you have a lot of life experience (life and experience)...trust yourself, too. Sometimes, that little voice is right...

xxoo,

Becky