Confused about staging

cgrnc2
cgrnc2 Member Posts: 2
edited March 2014 in Lung Cancer #1
My mom was diagnosed with lung cancer in the Fall. Adenocarcinoma NSCLC. She was told then that she had a 4.5 cm tumor but no lymph involvement or mets. In late Nov 2008 they told her she had stage 2b and that she was a candidate for surgery. She had surgery Jan 4. The surgery lasted a few hours longer than they said it would.
The surgeon took samples from 5 different areas including vein tissue, fatty tissue and lymphs. All pathology came back negative. He said he felt he "got everything" and that her stage was more like 1b.
She met with her oncologist last week . . . who told her that she has stage 3b!! She based it on the size of the tumor which had increased to 6cm by the time she had surgery!!
Has anyone had this experience? What I'm worried about is the surgery. I worry that she wasn't really a surgical candidate. Could having surgery before rad/chemo worsen her prognosis?
I'm not sure what to advise her and she seems really lost and scared. The oncologist says she needs chemo. Is it even worth it at this point? My mom is against the chemo because of quality of life issues . . .
Wow, this is hard!
Thank you for any response!!
CGC

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    one view
    I had head/neck cancer, stage 3, in '05, and then lung cancer diagnosed in june of '07 (too small to stage or even to determine if it was metastasis from the head/neck).

    In both cases, my doctors advised surgery followed by chemotherapy (and, in the first case, radiation therapy as well). The reason, I was told, was basically to pick up any 'strays' out there missed by the surgery.

    In the case of the lung cancer, most pertinent to you, perhaps, they removed the lowest lobe of my right lung and then provided chemotherapy. Had they found that the cancer was metastasis for sure, incidentally, they would have blown off the lobectomy and we would have gone directly to chemotherapy and that idea of 'quality of life'.

    I have never doubted the decisions of my doctors, and as of November of '08, when I last received a scan, I was pronounced cancer-free (more properly, it probably should have been called No Evidence of Disease).

    If your mom has doubts about any of her doctors, she should seek second opinions from doctors with the same specialties. Alternatively, if her doctors are in conflict, she or someone who attends her visits with her should ask what exactly is the cause for this conflict.

    As for fearing chemotherapy, you do not mention the age or overall health of your mom, so maybe her concerns are legitimate, but typically if doctors prescribe chemotherapy, they take every precaution to assure that suffering is minimal, and if they see that it is effecting quality of life, they are not averse, normally, to stopping it.

    Others have had different experiences, for sure. I am hopeful that they will also respond to you with ideas and comments.

    Best wishes to your mom and her family.

    Take care,

    Joe
  • cabbott
    cabbott Member Posts: 1,039 Member
    Surgery vs. chemo
    Dear CGC,

    I am a survivor of both breast and lung cancer, both stage 1. I read research from both areas since they both pertain to me. I have noticed research in the last few years in the area of breast cancer that surgery for the primary tumor extends life even when the patient is in stage 4 cancer where it has spread from the original area to distant spots. Surgery on the lung is tricky of course, because it affects our breathing. When doctors know that the cancer has spread outside the lung and that surgery won't do much good,currently they don't bother. If the tumor is confined to the lung, there is a chance that surgery will be curative. Sometimes you need both surgery and chemo to get the best results.

    I found the following information on staging athttp://www.health-alliance.com/Cancer/Lung/staging.html so you can stage your mom's cancer yourself. Look through her path reports and test reports for the needed information.

    Staging of Non-Small Cell Lung Cancer (NSCLC)

    The system most often used to describe the growth and spread of non-small cell lung cancer (NSCLC) is the TNM staging system, also known as the American Joint Committee on Cancer (AJCC) system. T stands for tumor (its size and how far it has spread within the lung and to nearby organs), N stands for spread to lymph nodes and M is for metastasis (spread to distant organs). In TNM staging, information about the tumor, lymph nodes, and metastasis is combined and a stage is assigned to specific TNM groupings. The grouped stages are described using Roman numerals from 0 to IV.

    Non-small cell lung cancer T stages

    Tis: Cancer is found only in the layer of cells lining the air passages. It has not invaded other lung tissues. This stage is also known as carcinoma in situ.

    T1: The cancer is no larger than 3 centimeters (slightly less than 1¼ inches), has not spread to the visceral pleura (membranes that surround the lungs) and does not affect the main branches of the bronchi.

    T2: The cancer has one or more of the following features:

    it is larger than 3 cm
    it involves a main bronchus, but is not closer than 2 cm (about ¾ inch) to the point where the trachea (windpipe) branches into the left and right main bronchi
    it has spread to the visceral pleura
    the cancer may partially clog the airways, but this has not caused the entire lung to collapse or develop pneumonia
    T3: The cancer has one or more of the following features:

    it has spread to the chest wall, the diaphragm (breathing muscle that separates the chest from the abdomen), the mediastinal pleura (membranes surrounding the space between the two lungs), or parietal pericardium (membranes of the sac surrounding the heart).
    it involves a main bronchus and is closer than 2 cm (about ¾ inch) to the point where the trachea (windpipe) branches into the left and right main bronchi, but does not involve this area
    it has grown into the airways enough to cause one lung to entirely collapse or to cause pneumonia of the entire lung
    T4: The cancer has one or more of the following features:

    it has spread to the mediastinum (space behind the chest bone and in front of the heart), the heart, the trachea (windpipe), the esophagus (tube connecting the throat to the stomach), the backbone or the point where the windpipe branches into the left and right main bronchi
    two or more separate tumor nodules are present in the same lobe
    there is a malignant pleural effusion (fluid containing cancer cells in the space surrounding the lung)
    Non-small cell lung cancer N stages

    N0: No spread to lymph nodes

    N1: Spread to lymph nodes within the lung, hilar lymph nodes (located around the area where the bronchus enters the lung). Metastases affect lymph nodes only on the same sides as the cancerous lung.

    N2: Spread to lymph nodes around the point where the windpipe branches into the left and right bronchi or to lymph nodes in the medistinum (space behind the chest bone and in front of the heart). Affected lymph nodes are on the same side of the cancerous lung.

    N3: Spread to lymph nodes near the collarbone on either side, to hilar or mediastinal lymph nodes on the side opposite the cancerous lung.

    Non-small cell lung cancer M stages

    M0: No distant spread

    M1: Distant spread is present. Sites considered distant include other lobes of the lungs, lymph nodes further than those mentioned in N stages, and other organs or tissues such as the liver, bones, or brain.

    Stage grouping for non-small cell lung cancer

    Once the T, N and M categories have been assigned, this information is combined (stage grouping) to assign an overall stage of 0, I, II, III or IV.

    Overall Stage T Stage N Stage M Stage Treatment
    Stage 0 Tis (In situ) N0 M0 treatment
    Stage IA T1 N0 M0 treatment
    Stage IB T2 N0 M0 treatment
    Stage IIA T1 N1 M0 treatment
    Stage IIB T2 N1 M0 treatment
    T3 N0 M0
    Stage IIIA T1 N2 M0 treatment
    T2 N2 M0
    T3 N1 M0
    T3 N2 M0
    Stage IIIB Any T N3 M0 treatment
    T4 Any N M0
    Stage IV Any T Any N M1 treatment


    The website gives treatment plans under the buttons above marked "treatment", but of course those plans didn't copy above. You might try the American Cancer Society website information on stage too to see how it compares with the above site. If what the oncologist is telling you doesn't make sense, you need to get your mom's tests and reports to another oncologist for a second opinion. It will help you know what is going on and what you should do next.

    As for chemo, some kinds of chemo are bummers on your quality of life and some aren't. If my cancer comes back for example, I've been told I'm a candidate for a pill that will probably give me a bad case of acne-like rash. That's not exactly something to look forward too, but if it gives me several more years on this planet it is not so bad either. Knowing what treatment the doctors think will work best with your mom's cancer and how many months that treatment might buy helps make those tough decisions a lot easier. A second opinion with a clinic that specializes in lung cancer treatment can help you get the information you need.
    Good luck!

    C. Abbott
  • cgrnc2
    cgrnc2 Member Posts: 2
    cabbott said:

    Surgery vs. chemo
    Dear CGC,

    I am a survivor of both breast and lung cancer, both stage 1. I read research from both areas since they both pertain to me. I have noticed research in the last few years in the area of breast cancer that surgery for the primary tumor extends life even when the patient is in stage 4 cancer where it has spread from the original area to distant spots. Surgery on the lung is tricky of course, because it affects our breathing. When doctors know that the cancer has spread outside the lung and that surgery won't do much good,currently they don't bother. If the tumor is confined to the lung, there is a chance that surgery will be curative. Sometimes you need both surgery and chemo to get the best results.

    I found the following information on staging athttp://www.health-alliance.com/Cancer/Lung/staging.html so you can stage your mom's cancer yourself. Look through her path reports and test reports for the needed information.

    Staging of Non-Small Cell Lung Cancer (NSCLC)

    The system most often used to describe the growth and spread of non-small cell lung cancer (NSCLC) is the TNM staging system, also known as the American Joint Committee on Cancer (AJCC) system. T stands for tumor (its size and how far it has spread within the lung and to nearby organs), N stands for spread to lymph nodes and M is for metastasis (spread to distant organs). In TNM staging, information about the tumor, lymph nodes, and metastasis is combined and a stage is assigned to specific TNM groupings. The grouped stages are described using Roman numerals from 0 to IV.

    Non-small cell lung cancer T stages

    Tis: Cancer is found only in the layer of cells lining the air passages. It has not invaded other lung tissues. This stage is also known as carcinoma in situ.

    T1: The cancer is no larger than 3 centimeters (slightly less than 1¼ inches), has not spread to the visceral pleura (membranes that surround the lungs) and does not affect the main branches of the bronchi.

    T2: The cancer has one or more of the following features:

    it is larger than 3 cm
    it involves a main bronchus, but is not closer than 2 cm (about ¾ inch) to the point where the trachea (windpipe) branches into the left and right main bronchi
    it has spread to the visceral pleura
    the cancer may partially clog the airways, but this has not caused the entire lung to collapse or develop pneumonia
    T3: The cancer has one or more of the following features:

    it has spread to the chest wall, the diaphragm (breathing muscle that separates the chest from the abdomen), the mediastinal pleura (membranes surrounding the space between the two lungs), or parietal pericardium (membranes of the sac surrounding the heart).
    it involves a main bronchus and is closer than 2 cm (about ¾ inch) to the point where the trachea (windpipe) branches into the left and right main bronchi, but does not involve this area
    it has grown into the airways enough to cause one lung to entirely collapse or to cause pneumonia of the entire lung
    T4: The cancer has one or more of the following features:

    it has spread to the mediastinum (space behind the chest bone and in front of the heart), the heart, the trachea (windpipe), the esophagus (tube connecting the throat to the stomach), the backbone or the point where the windpipe branches into the left and right main bronchi
    two or more separate tumor nodules are present in the same lobe
    there is a malignant pleural effusion (fluid containing cancer cells in the space surrounding the lung)
    Non-small cell lung cancer N stages

    N0: No spread to lymph nodes

    N1: Spread to lymph nodes within the lung, hilar lymph nodes (located around the area where the bronchus enters the lung). Metastases affect lymph nodes only on the same sides as the cancerous lung.

    N2: Spread to lymph nodes around the point where the windpipe branches into the left and right bronchi or to lymph nodes in the medistinum (space behind the chest bone and in front of the heart). Affected lymph nodes are on the same side of the cancerous lung.

    N3: Spread to lymph nodes near the collarbone on either side, to hilar or mediastinal lymph nodes on the side opposite the cancerous lung.

    Non-small cell lung cancer M stages

    M0: No distant spread

    M1: Distant spread is present. Sites considered distant include other lobes of the lungs, lymph nodes further than those mentioned in N stages, and other organs or tissues such as the liver, bones, or brain.

    Stage grouping for non-small cell lung cancer

    Once the T, N and M categories have been assigned, this information is combined (stage grouping) to assign an overall stage of 0, I, II, III or IV.

    Overall Stage T Stage N Stage M Stage Treatment
    Stage 0 Tis (In situ) N0 M0 treatment
    Stage IA T1 N0 M0 treatment
    Stage IB T2 N0 M0 treatment
    Stage IIA T1 N1 M0 treatment
    Stage IIB T2 N1 M0 treatment
    T3 N0 M0
    Stage IIIA T1 N2 M0 treatment
    T2 N2 M0
    T3 N1 M0
    T3 N2 M0
    Stage IIIB Any T N3 M0 treatment
    T4 Any N M0
    Stage IV Any T Any N M1 treatment


    The website gives treatment plans under the buttons above marked "treatment", but of course those plans didn't copy above. You might try the American Cancer Society website information on stage too to see how it compares with the above site. If what the oncologist is telling you doesn't make sense, you need to get your mom's tests and reports to another oncologist for a second opinion. It will help you know what is going on and what you should do next.

    As for chemo, some kinds of chemo are bummers on your quality of life and some aren't. If my cancer comes back for example, I've been told I'm a candidate for a pill that will probably give me a bad case of acne-like rash. That's not exactly something to look forward too, but if it gives me several more years on this planet it is not so bad either. Knowing what treatment the doctors think will work best with your mom's cancer and how many months that treatment might buy helps make those tough decisions a lot easier. A second opinion with a clinic that specializes in lung cancer treatment can help you get the information you need.
    Good luck!

    C. Abbott

    Thank you for all of the information. C. Abbott, I'll look at the site you copied from as well.
    I'm living several states away from my mom and she is basically alone right now. My sisters and I are trying to set up a plan so that one of us can be with her to dig through the paperwork and try to understand everything better.
    I really appreciate all replys.
    God bless you and good luck with your own journeys.
    CGC
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    cabbott said:

    Surgery vs. chemo
    Dear CGC,

    I am a survivor of both breast and lung cancer, both stage 1. I read research from both areas since they both pertain to me. I have noticed research in the last few years in the area of breast cancer that surgery for the primary tumor extends life even when the patient is in stage 4 cancer where it has spread from the original area to distant spots. Surgery on the lung is tricky of course, because it affects our breathing. When doctors know that the cancer has spread outside the lung and that surgery won't do much good,currently they don't bother. If the tumor is confined to the lung, there is a chance that surgery will be curative. Sometimes you need both surgery and chemo to get the best results.

    I found the following information on staging athttp://www.health-alliance.com/Cancer/Lung/staging.html so you can stage your mom's cancer yourself. Look through her path reports and test reports for the needed information.

    Staging of Non-Small Cell Lung Cancer (NSCLC)

    The system most often used to describe the growth and spread of non-small cell lung cancer (NSCLC) is the TNM staging system, also known as the American Joint Committee on Cancer (AJCC) system. T stands for tumor (its size and how far it has spread within the lung and to nearby organs), N stands for spread to lymph nodes and M is for metastasis (spread to distant organs). In TNM staging, information about the tumor, lymph nodes, and metastasis is combined and a stage is assigned to specific TNM groupings. The grouped stages are described using Roman numerals from 0 to IV.

    Non-small cell lung cancer T stages

    Tis: Cancer is found only in the layer of cells lining the air passages. It has not invaded other lung tissues. This stage is also known as carcinoma in situ.

    T1: The cancer is no larger than 3 centimeters (slightly less than 1¼ inches), has not spread to the visceral pleura (membranes that surround the lungs) and does not affect the main branches of the bronchi.

    T2: The cancer has one or more of the following features:

    it is larger than 3 cm
    it involves a main bronchus, but is not closer than 2 cm (about ¾ inch) to the point where the trachea (windpipe) branches into the left and right main bronchi
    it has spread to the visceral pleura
    the cancer may partially clog the airways, but this has not caused the entire lung to collapse or develop pneumonia
    T3: The cancer has one or more of the following features:

    it has spread to the chest wall, the diaphragm (breathing muscle that separates the chest from the abdomen), the mediastinal pleura (membranes surrounding the space between the two lungs), or parietal pericardium (membranes of the sac surrounding the heart).
    it involves a main bronchus and is closer than 2 cm (about ¾ inch) to the point where the trachea (windpipe) branches into the left and right main bronchi, but does not involve this area
    it has grown into the airways enough to cause one lung to entirely collapse or to cause pneumonia of the entire lung
    T4: The cancer has one or more of the following features:

    it has spread to the mediastinum (space behind the chest bone and in front of the heart), the heart, the trachea (windpipe), the esophagus (tube connecting the throat to the stomach), the backbone or the point where the windpipe branches into the left and right main bronchi
    two or more separate tumor nodules are present in the same lobe
    there is a malignant pleural effusion (fluid containing cancer cells in the space surrounding the lung)
    Non-small cell lung cancer N stages

    N0: No spread to lymph nodes

    N1: Spread to lymph nodes within the lung, hilar lymph nodes (located around the area where the bronchus enters the lung). Metastases affect lymph nodes only on the same sides as the cancerous lung.

    N2: Spread to lymph nodes around the point where the windpipe branches into the left and right bronchi or to lymph nodes in the medistinum (space behind the chest bone and in front of the heart). Affected lymph nodes are on the same side of the cancerous lung.

    N3: Spread to lymph nodes near the collarbone on either side, to hilar or mediastinal lymph nodes on the side opposite the cancerous lung.

    Non-small cell lung cancer M stages

    M0: No distant spread

    M1: Distant spread is present. Sites considered distant include other lobes of the lungs, lymph nodes further than those mentioned in N stages, and other organs or tissues such as the liver, bones, or brain.

    Stage grouping for non-small cell lung cancer

    Once the T, N and M categories have been assigned, this information is combined (stage grouping) to assign an overall stage of 0, I, II, III or IV.

    Overall Stage T Stage N Stage M Stage Treatment
    Stage 0 Tis (In situ) N0 M0 treatment
    Stage IA T1 N0 M0 treatment
    Stage IB T2 N0 M0 treatment
    Stage IIA T1 N1 M0 treatment
    Stage IIB T2 N1 M0 treatment
    T3 N0 M0
    Stage IIIA T1 N2 M0 treatment
    T2 N2 M0
    T3 N1 M0
    T3 N2 M0
    Stage IIIB Any T N3 M0 treatment
    T4 Any N M0
    Stage IV Any T Any N M1 treatment


    The website gives treatment plans under the buttons above marked "treatment", but of course those plans didn't copy above. You might try the American Cancer Society website information on stage too to see how it compares with the above site. If what the oncologist is telling you doesn't make sense, you need to get your mom's tests and reports to another oncologist for a second opinion. It will help you know what is going on and what you should do next.

    As for chemo, some kinds of chemo are bummers on your quality of life and some aren't. If my cancer comes back for example, I've been told I'm a candidate for a pill that will probably give me a bad case of acne-like rash. That's not exactly something to look forward too, but if it gives me several more years on this planet it is not so bad either. Knowing what treatment the doctors think will work best with your mom's cancer and how many months that treatment might buy helps make those tough decisions a lot easier. A second opinion with a clinic that specializes in lung cancer treatment can help you get the information you need.
    Good luck!

    C. Abbott

    great info
    Cabbott...glad to see you reporting in :). Was starting to worry about you.

    That is excellent information you've provided. Someone in chat said they were confused about lung cancer staging too, and I directed them to this post. I have also elected to save it, for future reference.

    Hope all is well, my friend.

    Take care,

    Joe
  • Greggriggs
    Greggriggs Member Posts: 132
    Hi !!!
    I don't blame your Mom . Did they remove all or part of your Moms Lung ???
    I had surgery in 2006 they removed my left lung complete Also some lymps on the left side They said my broncs were 75% block and ya know I did not feel the difference.

    You probably will not get better advice than what you got from Soccer and Cabott.
    We all have our little horror stories.
    Mine is Chemo I have not had a good time with it and it does affect your quality of life.
    So it is a hard decision to make.
    Ya know Your Mom could do a couple of treatments and if it gets her down to much tell her to tell her Oncologist She don't want no MORE.
    Any way if she does the chemo she should wait as long as she can like I think you can go ten weeks after the surgery.
    That will give her more time to recover from the surgery .
    That is just my opinion
    Long time Soccer and cabbott.
    Greg
  • This comment has been removed by the Moderator