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New Diagnosis

Iamscared
Iamscared Member Posts: 4
edited March 2014 in Lung Cancer #1
My mother has just been diagnosed with lung cancer - we are not sure how bad just yet, the doctors are still performing additional tests. Is there any test she should definitely have or not.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788
    More info!
    It would be easier to respond, iamscared, with more information. We do not know, for example, what tests were used to determine that mom has cancer; we do not know the type of cancer (there are multiple types of lung cancer); we do not know the stage; we do not know if mom has been biopsied.

    In general, lung cancer is typically detected via a CAT scan and/or a PET scan. Confirmation is typically achieved via a biopsy, wherein the doctors excise a piece of the lung thought to be cancerous to confirm malignancy. (I am not a doctor, by the way, but speak rather from personal experience and exchanging information with others on this board and others.)

    It is VERY common for the doctors to indicate a brain MRI, believe it or not. While this has an alarming effect when you first hear about it or have to consider it, the docs want to know that the lung cancer has not metastisized, traveled, to the brain.

    It is not painful.

    It is not uncommon, either, for the docs to wait for a month or more before taking what you would think is a proactive treatment stance, when the cancer is first discovered: they want to confirm that it really IS cancer, and therefore want to see if the stuff they THINK is cancer is continuing to grow and act as cancer does. Again, I do not know what step your mom is in, in the confirmation process.

    If they decide to do surgery, they will submit mom, probably, to a number of tests that are really not related to cancer but to the ability to withhandle the surgery. You can expect blood tests, of course, and expect them for what seems like eternity :) but eventually does end! You can anticipate, perhaps, stress tests, EKGs, things of that sort to assure her ability to survive the surgery, if they choose that route.

    The answers to your questions really depend upon a lot of unknowns (to me).

    The one who can answer them best, of course, is your mom's doctor. Hopefully she, and you, but particularly her, trust the doctor and are comfortable with him/her. I would advise, if you have the opportunity, that you attend her visits with her and that you take notes. I would, in fact, advise that you take a list of questions you have with you to these sessions, that you get them answered, write down the answers, and use these answers as starting points for the questions you want to ask next time.

    If you are not in a position to do that, at least suggest that your mom's principle caregiver (or her, if she is on her own) do this simple thing to keep track of information and to gather more.

    I wish that I could be of more help. However, beyond even the fact that limited information is provided, it turns out that while we can all share stories of similar treatments and tests and so forth, even among various cancers, it is also true that two people with the exact same cancer in the same exact location will have different experiences, because their doctors are different, their reactions and pain tolerances are different, their attitudes are different ... just a myriad number of things that make us, and our situations unique.

    Your mom, and her family, have my best wishes!

    Take care,

    Joe
  • hanmarmax
    hanmarmax Member Posts: 4
    New Diagnosis
    You should definitely get more than 1 opinion maybe even 2. If you're close enough to a major medical center or preferably a cancer center. Get her there. There are a lot of breakthroughs happening and clinical trials. A lot of things on the internet are old and the statistics are. So don't let them get you down. Remember too that you have to have hope there's a lot of survivors out there who didn't necessarily have the best odds. A pet scan would be good to make sure it hasn't spread anywhere. An MRI of the brain to make sure it didn't spread there too. I also had my tumor sent to more than 1 pathologist. Also, it could be important to see whether she has the EFGR mutation to see whether Iressa or Tarceva would be a good fit for her. I know it's a scary time for all of you. Good luck, Lisa
  • sheilake
    sheilake Member Posts: 4
    Tests
    Sorry to hear about your mother and lung cancer. She definately needs to find out what stage of cancer she has so a CAT Scan/Pet Scan/Bone Scan and MRI are pretty standard. Have her insist with her doctor if he/she wants to leave any out.
  • Iamscared
    Iamscared Member Posts: 4

    More info!
    It would be easier to respond, iamscared, with more information. We do not know, for example, what tests were used to determine that mom has cancer; we do not know the type of cancer (there are multiple types of lung cancer); we do not know the stage; we do not know if mom has been biopsied.

    In general, lung cancer is typically detected via a CAT scan and/or a PET scan. Confirmation is typically achieved via a biopsy, wherein the doctors excise a piece of the lung thought to be cancerous to confirm malignancy. (I am not a doctor, by the way, but speak rather from personal experience and exchanging information with others on this board and others.)

    It is VERY common for the doctors to indicate a brain MRI, believe it or not. While this has an alarming effect when you first hear about it or have to consider it, the docs want to know that the lung cancer has not metastisized, traveled, to the brain.

    It is not painful.

    It is not uncommon, either, for the docs to wait for a month or more before taking what you would think is a proactive treatment stance, when the cancer is first discovered: they want to confirm that it really IS cancer, and therefore want to see if the stuff they THINK is cancer is continuing to grow and act as cancer does. Again, I do not know what step your mom is in, in the confirmation process.

    If they decide to do surgery, they will submit mom, probably, to a number of tests that are really not related to cancer but to the ability to withhandle the surgery. You can expect blood tests, of course, and expect them for what seems like eternity :) but eventually does end! You can anticipate, perhaps, stress tests, EKGs, things of that sort to assure her ability to survive the surgery, if they choose that route.

    The answers to your questions really depend upon a lot of unknowns (to me).

    The one who can answer them best, of course, is your mom's doctor. Hopefully she, and you, but particularly her, trust the doctor and are comfortable with him/her. I would advise, if you have the opportunity, that you attend her visits with her and that you take notes. I would, in fact, advise that you take a list of questions you have with you to these sessions, that you get them answered, write down the answers, and use these answers as starting points for the questions you want to ask next time.

    If you are not in a position to do that, at least suggest that your mom's principle caregiver (or her, if she is on her own) do this simple thing to keep track of information and to gather more.

    I wish that I could be of more help. However, beyond even the fact that limited information is provided, it turns out that while we can all share stories of similar treatments and tests and so forth, even among various cancers, it is also true that two people with the exact same cancer in the same exact location will have different experiences, because their doctors are different, their reactions and pain tolerances are different, their attitudes are different ... just a myriad number of things that make us, and our situations unique.

    Your mom, and her family, have my best wishes!

    Take care,

    Joe

    Scared and doing a lot of research
    Thank you all for taking the time to write:
    My mom has had several different tests and one biopsy so far. At first they thought it may be benign her first biopsy came back negative. Her blood test came back positive for a cancer tracer.....?????
    Her next appointment is with the surgeon who will biopsy around the mass in her right upper lung. The mass has grown about 15% in size in the last month. I am not sure what specific cancer she has.

    She and I are about 1000 miles away from each other so I am not able to be there at this time. I think the hardest thing for us has been telling my grandmother, who will be 90 this year. My grandmother has already lost her other daughter to cancer.
  • sheilake
    sheilake Member Posts: 4
    Mom's cancer
    This stage is tough. Biopysies can be erroneous. A mass that has grown 15% in one month is probably not a good sign. Are they giving her a CAT scan, PET scan and MRI as well as Biopsy?

    I had a 4mm (size of a pencil tip) spot on my right lung a year ago that grew to the size of an orange in eight months. The radiologist that looked at the 4mm spot a year ago said I should check it in a year. By the time I developed shortness of breath three months ago, not much could be done because the cancer had traveled to the left lung and lymph nodes around the lung.

    They gave me six months and said that chemo would add another two weeks to that six months. I said thanks but no thanks to the chemo because my quality of life was good without it. After some exploration, I found a Dr. who recommended a "chemosensitivity test". That test took my cancer cells and tested them against different treatment options. The cancer cells died with Tarceva and didn't die with chemo. Thus, I started Tarceva (targeted pill for female nonsmokers with adenocarcinoma with mild side effects). The pill has reduced the tumor size by 4/5 in just a month. It has been a miracle and I am hoping it will keep destroying my cancer. Note: my oncorlogist who is rated highly was quite angry that I refused chemo. I had to bring the idea of Tarceva to him. Now he is extremely pleased.

    I say this for several reasons:
    1) The best tip I received in the beginning was that "you are in charge of your own fate." It is easy to think that one doctor is going to know the answers. You have to talk to LOTS of people to find out what is what.

    2) It is important to identify exactly what kind of cancer your Mom has (if it is indeed cancer and/or malignant). If so, labs can tell by the cells where it originated. Sometimes tumors in the lung start somewhere else and they treat different cancers differently. For the moment I will move on as if it is cancer.

    3) If at all possible, have them take her cancer cells and do a "chemosensitivity test". No sense wasting your time and energy on a solution that isn't going to work when there can be limited time to experiment. My phone number is 949 498 0122 and my name is Sheila if you want more information on how to do this.

    4) Nutrition is a key player in the immune system. A book that is critical for cancer patients or relatives of cancer patients is "Anti-Cancer" by Schreiber. I have talked to a lot of cancer survivors. The ones who lived the longest integrated nutrition and complementary treatments into their medical plans.

    All that said, I am praying that they find that it is something else. Best wishes.
  • catcon49
    catcon49 Member Posts: 398
    Cancer is scary but there is
    Cancer is scary but there is alot of hope now for every type of cancer. Get more information and everyone will be waiting to hear from you.
  • Iamscared
    Iamscared Member Posts: 4
    hopefull
    Mom will have several biopsies tomorrow - thanks to all your comments I was able to ask more questions and I am looking for more answers. She did speak to her surgeon and she likes and trusts him, and I guess thats half the battle. I gave her a list to take with her and I asked if I had questions would he mind speaking to me directly. We'll see.
  • Iamscared
    Iamscared Member Posts: 4
    sheilake said:

    Mom's cancer
    This stage is tough. Biopysies can be erroneous. A mass that has grown 15% in one month is probably not a good sign. Are they giving her a CAT scan, PET scan and MRI as well as Biopsy?

    I had a 4mm (size of a pencil tip) spot on my right lung a year ago that grew to the size of an orange in eight months. The radiologist that looked at the 4mm spot a year ago said I should check it in a year. By the time I developed shortness of breath three months ago, not much could be done because the cancer had traveled to the left lung and lymph nodes around the lung.

    They gave me six months and said that chemo would add another two weeks to that six months. I said thanks but no thanks to the chemo because my quality of life was good without it. After some exploration, I found a Dr. who recommended a "chemosensitivity test". That test took my cancer cells and tested them against different treatment options. The cancer cells died with Tarceva and didn't die with chemo. Thus, I started Tarceva (targeted pill for female nonsmokers with adenocarcinoma with mild side effects). The pill has reduced the tumor size by 4/5 in just a month. It has been a miracle and I am hoping it will keep destroying my cancer. Note: my oncorlogist who is rated highly was quite angry that I refused chemo. I had to bring the idea of Tarceva to him. Now he is extremely pleased.

    I say this for several reasons:
    1) The best tip I received in the beginning was that "you are in charge of your own fate." It is easy to think that one doctor is going to know the answers. You have to talk to LOTS of people to find out what is what.

    2) It is important to identify exactly what kind of cancer your Mom has (if it is indeed cancer and/or malignant). If so, labs can tell by the cells where it originated. Sometimes tumors in the lung start somewhere else and they treat different cancers differently. For the moment I will move on as if it is cancer.

    3) If at all possible, have them take her cancer cells and do a "chemosensitivity test". No sense wasting your time and energy on a solution that isn't going to work when there can be limited time to experiment. My phone number is 949 498 0122 and my name is Sheila if you want more information on how to do this.

    4) Nutrition is a key player in the immune system. A book that is critical for cancer patients or relatives of cancer patients is "Anti-Cancer" by Schreiber. I have talked to a lot of cancer survivors. The ones who lived the longest integrated nutrition and complementary treatments into their medical plans.

    All that said, I am praying that they find that it is something else. Best wishes.

    Thanks - my mom had her
    Thanks - my mom had her biobsys of her lung - and while they were in there they found "hot spots" in her lymph nodes under her right arm???. Well - we finally have the results - no cancer in her lymph nodes and the cancer in her lung is in a tumor, found during a PET scan. They will operate on monday to take it out. I asm told that if it is growing in one direction she will only lose 1/3 of half a lung; if its growing on the opposite direction she will lose all of half of a lung.

    The doctor will tell her after the surgery if she is going to need chemo or radiation........or both....... This is the part that is most distressing to her (hair loss and stuff),
    Something like Tarceva would probably not be for her as she is a past smoker. Quit over 10 years ago.

    I just have to wait and see..........