question about stage

[Tami]

I THINK I read somewhere that staging never changes.. once you are given a stage that is what you remain. Is that correct?

I was listed as a stage 4 originally and was "inoperable" by my surgeon/oncologist. then I had surgery and have been okay since and in my mind I thought I was considered a stage 4 NED. However, in some recent paperwork I notice that they restaged me to a Stage 1 or 2 with NED.

Do they always do that? I thought that staging always remainded the same. Can someone share some wisdom with me!!!

Thanks.

[Andrea]

I am confused about that too. My mom was IIIA at diagnosis per report from mediastonoscopy. Then she had chemo and surgery following and after surgery it said Stage IIB. I called the surgeon's office and they said they always go by initial stage, but after surgery she appeared more IIB, however officially it would always be IIIA.

[Kasey]

Hi Tami,

I asked my surgeon that exact question.........thought I would be something like a stage 0 since I had a successful surgery and was declared NED. He said I am considered a 'recovering' or 'recovered' (can't remember which he said) stage 3b. Told me the stage does not change. BUT if you have a new stage............I say YIPPEE and I will ask for one too. So, seems there is a difference of opinion in the medical comminity.

How've you been doing, BTW? Glad to s'see' ya!

Kasey

[Tami]

Thanks Andrea and Kasey.. wow, you gals on quick on that keyboard.

Things with me are difficult at the moment at home. I'm still NED but the effects of all the treaments, surgery and depression are getting to me I think. I'm having some physical issues related to all that and I'm working ALOT trying to cover expenses. Which isn't helping things. the lympedema and neuropathy are worse this summer. Along with the rib pain.. Plus working 2 and 3 jobs doesn't help.

The reason I'm asking about staging is because I wanted to check on disability. As I said I was orginally diagnosed as a Stage 4 and I thought that meant automatic acceptance. However, I think they restaged me to a 1 or 2 because they did the surgery and changed their opinion of my tumor type etc. I can't even get an attorney to talk to me about it because I'm still working and I'm not undergoing treatment at this time. But I can't afford to just stop working. I guess I was hoping that this could be my "foot in the door" to get them to do something. There is a big difference between a stage 4 NED and a Stage 1 or 2. it's weird though you don't want to wish yourself sick...

Thanks for all your help!!!

[Don Wood]

My impression with staging was that it could change for the worse but not the better. If you were originally 1 or 2, and it subsequently was discovered metastatic, you could be restaged to 3 or 4. But once you were 3 or 4, you would be considered in remission (NED) if it disappeared, but same stage. Don

[Andrea]

Tami,

I never used them, but I have heard of them as being a large disabiltiy firm that is national. http://www.binderandbinder.com/ Maybe try calling them.

[RandyW]

Staging

Introduction

Staging is the process of finding out how much cancer there is in the body and where it is located. Doctors use this information to plan treatment and to help determine a person's outlook (prognosis). Cancers with the same stage usually have similar outlooks and are often treated the same way. Staging is also a way doctors can communicate with each other about a person's case.

Why Is Staging Needed?

Doctors need to know the amount and location of cancer in the body to make sure a person gets the proper treatment for his or her specific cancer. For example, the treatment for early stage breast cancer may be surgery and radiation, while a more advanced stage of breast cancer may require treatment with chemotherapy. Doctors also use the stage to predict the course a cancer is likely to take.

What Is the Doctor Looking for When Staging Cancer?

For most cancers, the stage is based on 3 main factors:

the original (primary) tumor's size and whether or not the tumor has grown into other nearby areas

whether or not the cancer has spread to the nearby lymph nodes

whether or not the cancer has spread to distant areas of the body

Some cancers of the blood, such as leukemias, are not formally staged because they are assumed to be in all parts of the body.

What Does Staging Involve?

Doctors gather different types of information about a cancer to determine its stage. Depending on where the cancer is located, the physical exam may give some clue as to the extent of the cancer. Imaging tests such as x-rays, CT scans, and MRI scans may also provide information about where a cancer may be located in the body. Removing tumors or pieces of tumors and looking at them under the microscope often confirms the diagnosis of cancer, but can also help stage the cancer. Samples can be removed either during surgery or during less invasive biopsy procedures. (The different techniques used to remove and examine samples are described in our "Surgery" document.)

Types of Staging

There are different types of staging.

Clinical staging estimates how much cancer there is based on the results of the physical exam, imaging tests (x-rays, CT scans, etc.) and sometimes biopsies of affected areas. For certain cancers the results of other tests, such as blood tests, are also used in staging.

Pathologic staging can only be done on patients who have had surgery to remove or explore the extent of the cancer. It combines the results of clinical staging (physical exam, imaging tests, etc.) with the results from the surgery. In some cases, the pathologic stage may be different from the clinical stage (for example, if the surgery shows the cancer is more extensive than it was previously thought to be).

Restaging is sometimes used to determine the extent of the disease if a cancer recurs (comes back) after treatment. This is done to help determine what the best treatment option would be at this time. This type of staging is not common, and is discussed in the section "A Cancer"s Stage Does Not Change."

The TNM Staging System

At one time there were many different systems used to stage cancers, and sometimes different systems were used to stage the same type of cancer. Although some of the better ones are still used, many of these systems did not give doctors very useful information.

The American Joint Committee on Cancer (AJCC) developed the TNM classification system as a tool for doctors to stage different types of cancer based on certain standard criteria. It has replaced many of the older staging systems. In the TNM system, each cancer is assigned a T, N, and M category.

The T category describes the original (primary) tumor.

TX means the tumor can't be measured or found.

T0 means there is no evidence of primary tumor.

Tis means the cancer is in situ (the tumor has not started growing into the surrounding structures).

The numbers T1–T4 describe the size and/or level of invasion into nearby structures. The higher the T number, the larger the size of the tumor and/or the further it may have grown into nearby structures.

The N category describes whether or not the cancer has reached nearby lymph nodes.

NX means the nearby lymph nodes can't be measured or found.

N0 means nearby lymph nodes do not contain cancer.

The numbers N1–N3 describe the size, location, and/or the number of lymph nodes involved. The higher the N number, the more involved the lymph nodes are.

The M category tells whether there are distant metastases (spread of cancer to other parts of body).

MX means metastasis can't be measured or found.

M0 means there are no known distant metastases.

M1 means that distant metastases are present.

Each cancer type has its own classification system, so letters and numbers don't always mean the same thing for every kind of cancer. For example, for some cancers, classifications may have subcategories, such as T3a and T3b, while others may not have an N3 category.

Stage Grouping

Once the T, N, and M are determined, they are combined, and an overall "stage" of I, II, III, or IV is assigned. (Sometimes these stages are subdivided as well, using letters such as IIIA and IIIB.)

For example, a T1, N0, M0 breast cancer would mean that the primary breast tumor is less than 2 cm across (T1), does not have lymph node involvement (N0), and has not spread to distant parts of the body (M0). This cancer would be grouped as a stage I cancer.

A T2, N1, M0 breast cancer would mean that the cancer is more than 2 cm but less than 5 cm across (T2), has reached only the lymph nodes in the underarm area (N1), and has not spread to distant parts of the body. This cancer would be grouped as stage IIB.

Stage I cancers are the least advanced and often have a better prognosis (outlook for survival). Higher stage cancers are often more advanced but in many cases can still be treated successfully.

Other Staging Systems

Staging systems other than the TNM system are often used for lymphomas, some childhood cancers, and cancers in some female reproductive organs.

Other, older staging systems (such as the Dukes system for colorectal cancer) may still be used by some doctors. If your doctor uses another staging system, you may want to find out if the stage can be converted into the TNM system.

A Cancer's Stage Does Not Change

An important point some people have trouble understanding is that the formal "stage" of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first diagnosed.

For example, if a woman was first diagnosed with "stage II breast cance," but the cancer now has spread to the bones, the cancer is called "stage II breast cancer with recurrent disease in the bones" (if the cancer went away with treatment) or "stage II breast cancer with metastasis in the bones" (if the cancer never went away completely). This is not "stage IV breast cancer". A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it is first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current disease status. (The treatment of a stage II cancer with metastasis and a stage IV cancer may be the same, however.)

This is important to understand because survival statistics and treatment by stage information on specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.

Sometimes, after a period of remission (cancer being undetectable) for certain cancers, if more treatment is planned, a doctor might restage the cancer. This will mean going through the same process that was done when the cancer was first diagnosed: exams, imaging tests, biopsies, and possibly surgery to restage the cancer. If the cancer is restaged, the new stage will be recorded with a lower case "r" before the restaged designation. This is not often done.

[luvmydog2]

Hi Tami. You don't have a profile posted but if I remember correctly you had a whole lung removed. You would probably have qualified for SSDI at that time. If you would have qualified then, I see no reason you would not qualify now. You are working now. The question should not be are you working but are you able to work. You are still under the doctors care I presume. Lung function does improve over time but I am not sure if it improves enough to change matters that much. Perhaps it depends on the type of work you do. I know the type of work I was doing there was no question that I could ever return to that work. I guess where I am going here is that all people may be different in that area.

What does you doctor say? I would assume that SS would send you for their own test before denying you. The first test would probably be a PFT test. I can't imagine an attorney turning you down if your doctor says you can't work.

Did you apply and get turned down or are you only thinking of applying? You can continue to work and apply at the same time. There is a limit on what you can earn tho. Check with SS. See what they say. Keep us posted. Good luck.

[marym]

Tami,

As I understand it, in order to qualify for "automatic" disability it is required that your doctor state he expect you to be dead within a year. I think I had read something about lung cancer used to be an automatic but is no longer considered that.

This was all done 17 months ago when I had been told that I was expected to live 6 months.

Mary

[Tami]

Thanks for all the information..

In a way this is all too funny.. I guess I should have filed when I received my Stage 4 diagnosis and especially after my second surgery to remove my tumor when I was a Stage 4, considered inoperable and given 4-6 months.

I guess I'm out of luck that I didn't die. I guess I lived too long to qualify as ever being sick...

[Welthy]

Tami,

It was my understanding that a Stage IV is an automatic disability per government standards. Also, once a stage IV always a stage IV. You don't get "upgraded".

Best regards,

Welthy

[Connie B]

Tami, your not to late, so go apply! Your staging does not change because you live or because you had surgery. If you were first staged a IV and it's all in writing, then that's your stage.

Non small Cell LC and Small Cell LC also is treated differently at SS.

Go get what you have coming. They may or may not go back to when you were dx.d. I have an attorney working for mine now. I tried to get SSDI 11 years ago, but they told me I didn't qualify. I have learned that I DID qualify and I DO Have it coming. But, because it's been 11 years yadda yadda yadda, I had to hire an attorney. Don't wait, go apply.

Good luck kiddo.