How Long to wait?

JohnBinDC
JohnBinDC Member Posts: 91 Member
edited March 2014 in Lung Cancer #1
I was just diagnosed with stage 3a NSCLC. My doc want to perform another bronchoscopy on Monday, get those results and then refer me to an oncologist. The reason is the first samples, while they were good enough for a basic diagnosis, are not suffcient for further specific diagnosis and use to develop a treatment plan.

My first question was what risk do I have of cancer spreading while I wait for further tests and then referral to an oncologist? Also, I wanted to get a second opinion, and what risk would that pose for the disease spreading while I wait for the second opinion. I realize that no one could provide a timetable for cancer spread, but I also believe that each day is important as we seek to get treatment started. I also understand that NSCLC usually is not as aggressive as SCLC.

These may be rookie questions, but they are on my mind....

Thanks

John

Comments

  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #2
    You're right, it's not as agressive
    I know it's hard to wait, you feel like every minute is wasted, but it's not! The oncologists want to treat you with the best combination for your cancer - and to my knowledge, a week or two won't make a bit of difference. We've all felt the same way, it's a very common question here :-)

    stayingcalm
  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #3
    Oops
    Posted twice, can't delete but can erase ;-)
  • hope0310
    hope0310 Member Posts: 320
    #4
    stayingcalm said:

    Oops
    Posted twice, can't delete but can erase ;-)

    The waiting.....
    Def the hardest part!!! From what I have read, yes, NSC is not as aggressive as the small cell.

    Mom's was small cell and they jumped right on it, it had spread to her brain when she was diagnosed. However, there were times during the process where there was waiting and it was brutal. But Deb is right, they are wanting to get all results so they can choose the right treatment plan.

    My best to you
    Elysia
  • cabbott
    cabbott Member Posts: 1,039 Member
    #5
    Doubling time
    Different cancers grow at different rates. There are ways pathologists can calculate the doubling rate of your particular cancer by comparing the size of a nodule from one scan to the next. Pathologists can also examine the cells under a microscope and see how many are actively dividing to determine how aggressive the cancer is. More aggressive cancer double faster. I found the following information on a google search looking for doubling times of lung cancer:

    "Expand+Tumor Doubling Time and Prognosis in Lung Cancer Patients: Evaluation from Chest Films and Clinical Follow-up Study
    Takashi Arai1, Tetsuo Kuroishi2, Yasuki Saito3, Yuzo Kurita4, Tsuguo Naruke5 and Masahiro Kaneko6

    A study was made of the relation between tumor doubling time and prognosis in lung cancer patients. Tumor doubling time was calculated in 237 patients from two serial chest x-ray films. The mean doubling time was 166.3 days, with 221.6 days for adenocarcinoma, 115.2 days for squamous cell carcinoma, 67.5 days for large cell carcinoma, 86.3 days for small cell carcinoma and 225.2 days for others"

    You can see from the folks they studied that a week or two or even a month, even for the folks with small cell carcinoma, didn't make a whole lot of difference in their tumors. The cancers just didn't grow all that fast. I wouldn't wait three months to start treatment. But take heart that cancer cells are just crazy cells that like regular cells take time to grow. I remember having to remind myself after I was just diagnosed that I was not any sicker the day after diagnosis than I was the day before I found out. I just knew more. That's where you are too. It is important to get a treatment plan and get started with treatment. It is also important to be happy with your treatmnet plan and doctor.

    One of my friends with aggressive breast cancer played the game both ways. She started treatment with the local oncologist who could get her in the soonest. But she went to the University Hospital 100 miles from home about a month and a half later when they could get her in for a second opinion on her treatment plan. Her husband, a doctor, knew that she would get the best advice from the University trained experts, but he didn't want to risk a minute of her life waiting for their opinion. It turned out that the treatment plan they recommended locally was the same as what the experts chose. Later down the treatment road the experts advised her local doctor. So she got fastest and best. Her doctors didn't have any problems with working together. Most welcome second opinions. Some insurance companies demand it. After all, a satisfied patient is more likely to comply with treatment than an unsatisfied one.

    Good luck!
  • JohnBinDC
    JohnBinDC Member Posts: 91 Member
    #6
    cabbott said:

    Doubling time
    Different cancers grow at different rates. There are ways pathologists can calculate the doubling rate of your particular cancer by comparing the size of a nodule from one scan to the next. Pathologists can also examine the cells under a microscope and see how many are actively dividing to determine how aggressive the cancer is. More aggressive cancer double faster. I found the following information on a google search looking for doubling times of lung cancer:

    "Expand+Tumor Doubling Time and Prognosis in Lung Cancer Patients: Evaluation from Chest Films and Clinical Follow-up Study
    Takashi Arai1, Tetsuo Kuroishi2, Yasuki Saito3, Yuzo Kurita4, Tsuguo Naruke5 and Masahiro Kaneko6

    A study was made of the relation between tumor doubling time and prognosis in lung cancer patients. Tumor doubling time was calculated in 237 patients from two serial chest x-ray films. The mean doubling time was 166.3 days, with 221.6 days for adenocarcinoma, 115.2 days for squamous cell carcinoma, 67.5 days for large cell carcinoma, 86.3 days for small cell carcinoma and 225.2 days for others"

    You can see from the folks they studied that a week or two or even a month, even for the folks with small cell carcinoma, didn't make a whole lot of difference in their tumors. The cancers just didn't grow all that fast. I wouldn't wait three months to start treatment. But take heart that cancer cells are just crazy cells that like regular cells take time to grow. I remember having to remind myself after I was just diagnosed that I was not any sicker the day after diagnosis than I was the day before I found out. I just knew more. That's where you are too. It is important to get a treatment plan and get started with treatment. It is also important to be happy with your treatmnet plan and doctor.

    One of my friends with aggressive breast cancer played the game both ways. She started treatment with the local oncologist who could get her in the soonest. But she went to the University Hospital 100 miles from home about a month and a half later when they could get her in for a second opinion on her treatment plan. Her husband, a doctor, knew that she would get the best advice from the University trained experts, but he didn't want to risk a minute of her life waiting for their opinion. It turned out that the treatment plan they recommended locally was the same as what the experts chose. Later down the treatment road the experts advised her local doctor. So she got fastest and best. Her doctors didn't have any problems with working together. Most welcome second opinions. Some insurance companies demand it. After all, a satisfied patient is more likely to comply with treatment than an unsatisfied one.

    Good luck!

    Thank you
    Thank you for your reply. I have a second biopsy tomorrow bacause the frist did not contain enough good samples for staining and treatment plan development. I do appreciate your insight and will seek the opinion through Johns Hopkins after my Oncology appointment at Walter Reed.

    Thanks again

    John
  • trft
    trft Member Posts: 48
    #7
    how long to wait?
    I had a better staging with nsc adenocarcinoma than you have, but I had to wait a month before they would proceed with the surgery. (I had a rash they didn't like.) And my docs were saying that with this cancer weeks were not an issue. Certainly I understand some of what you feel. It was not my intent to wait even a day to begin treatment.
  • phelangelica
    phelangelica Member Posts: 17
    #8
    Im with you
    For some people a week doesnt make a difference but for my partner every minute DID count. even though he has supposedly slow nsclc, i felt it growing with my own hands. new lumps in his lumbar region and abdomen popped up every day after his diagnosis. it was terrifying. I was the only person with such a sense of urgency, nobody else was in a big rush about the chemo. they wanted to do the biopsy, test for mutations etc.

    I was fearful of pestering the onc but i piped up about the lumps i felt and told him i was concerned it was moving very fast. He had already been told he'd only have 3 months to live without chemo so to me, waiting 3 weeks wasnt cool.

    Im glad i spoke up because the onc felt the lumps, said he wasnt sure then expedited the body scans and gave me his cell number to call after the scan was done sohe could check it fast.

    I called him when it was done and he told me that those lumps i had felt were indeed active and that there was a lot of distant activity all over. Because of this, he immediately scheduled the chemo to start the very next day, a friday and saturday combo that was unusual for the clinic but he made it happen.

    i think this saved G's life. All cases are different, but as his cancer moved so fast, He responded very well and quickly to the chemo, and was restored in many ways. He seemed more himself the week after and I felt the lumps melt away.

    Go with your gut and dont be afraid to pester your onc.
  • JohnBinDC
    JohnBinDC Member Posts: 91 Member
    #9
    phelangelica said:

    Im with you
    For some people a week doesnt make a difference but for my partner every minute DID count. even though he has supposedly slow nsclc, i felt it growing with my own hands. new lumps in his lumbar region and abdomen popped up every day after his diagnosis. it was terrifying. I was the only person with such a sense of urgency, nobody else was in a big rush about the chemo. they wanted to do the biopsy, test for mutations etc.

    I was fearful of pestering the onc but i piped up about the lumps i felt and told him i was concerned it was moving very fast. He had already been told he'd only have 3 months to live without chemo so to me, waiting 3 weeks wasnt cool.

    Im glad i spoke up because the onc felt the lumps, said he wasnt sure then expedited the body scans and gave me his cell number to call after the scan was done sohe could check it fast.

    I called him when it was done and he told me that those lumps i had felt were indeed active and that there was a lot of distant activity all over. Because of this, he immediately scheduled the chemo to start the very next day, a friday and saturday combo that was unusual for the clinic but he made it happen.

    i think this saved G's life. All cases are different, but as his cancer moved so fast, He responded very well and quickly to the chemo, and was restored in many ways. He seemed more himself the week after and I felt the lumps melt away.

    Go with your gut and dont be afraid to pester your onc.

    Thanks
    Thanks for the advice. I have pestered my Pulmonologist ad have anoncology appointment a Walter Reed next Wednesday and a referral to Johns Hopkins for a second opinion. I wanted my second opinion scheduled as it will be important to me to have Johns Hopkins look a the poposed treatment plan.

    John
  • JohnBinDC
    JohnBinDC Member Posts: 91 Member
    #10
    And it keeps going on....
    I had my first appointment with my Oncologist today and expected to discuss treatment plan recommendations. But wait, there's more! as they say. Turns out the samples taken from two bronchoscopys did not produce sufficient tissue samples to test for a conclusive detailed diagnosis. It is known that I have at least stage 3A NSCLC, but the details such as specific type (likely adenocarcinoma), and potential operability are unknown from the tests that have been completed.

    Thus,I am scheduled for a Mediastinoscopy next Tuesday to gather up sufficient samples for a detailed diagnosis from which to base a treatment plan. While I certainly do not like the idea of added time, it is important to get the diagnosis in the most detail possible to see wha options are available for treatment.

    So the waiting to get treatment started continues. I also need to get a brain MRI on Saturday to check for Mets as I have been having a headache that makes it hard to sleep at night.

    Otherwise, Life is good and I am trying to have a bit of fun. Looking forward to the holidays. I think I will spend them somewhere warm, like Arizona!

    Best wishes to all as we fight this disease!

    John
  • catcon49
    catcon49 Member Posts: 398
    #11
    JohnBinDC said:

    And it keeps going on....
    I had my first appointment with my Oncologist today and expected to discuss treatment plan recommendations. But wait, there's more! as they say. Turns out the samples taken from two bronchoscopys did not produce sufficient tissue samples to test for a conclusive detailed diagnosis. It is known that I have at least stage 3A NSCLC, but the details such as specific type (likely adenocarcinoma), and potential operability are unknown from the tests that have been completed.

    Thus,I am scheduled for a Mediastinoscopy next Tuesday to gather up sufficient samples for a detailed diagnosis from which to base a treatment plan. While I certainly do not like the idea of added time, it is important to get the diagnosis in the most detail possible to see wha options are available for treatment.

    So the waiting to get treatment started continues. I also need to get a brain MRI on Saturday to check for Mets as I have been having a headache that makes it hard to sleep at night.

    Otherwise, Life is good and I am trying to have a bit of fun. Looking forward to the holidays. I think I will spend them somewhere warm, like Arizona!

    Best wishes to all as we fight this disease!

    John

    Waiting
    Why have you not seen a Thoracic surgeon yet? is surgery not an option. They can do further testing after surgery. I did have the brain MRI before surgery. But the broncioscope was done right before the surgery in the operating room, surgery immediately followed.
  • JohnBinDC
    JohnBinDC Member Posts: 91 Member
    #12
    catcon49 said:

    Waiting
    Why have you not seen a Thoracic surgeon yet? is surgery not an option. They can do further testing after surgery. I did have the brain MRI before surgery. But the broncioscope was done right before the surgery in the operating room, surgery immediately followed.

    Surgeon
    Thanks much for your reply. I have seen a thoracic surgeon and that is who will be preforming the mediastinoscopy. I did have a wedge resection of the left upper lobe in March of 2009. At that time, the specimen came back negative for cancer. Right now, I am on the fence as a candidate for surgery. The mediastinoscopy and resulting pathology reports should help make the determination if surgery is indeed an option. Best wishes!

    John

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