Appropriate waiting time and the referral process

Posted by sonofmamaj @sonofmamaj, Aug 12 10:36pm

My 88 year old mother was diagnosed with Non small cell lung cancer–stage 2b as far as they can tell. A bout with pneumonia in early June discovered a mass in her right lung. The biopsy in early July gave the diagnosis of non small cell lung cancer. Now in early August, we get a treatment plan, but they want more tests to decide where the cancer is. She lives in northern Minnesota.
This mass in her lung was seen on a CXR by her physician in November of 2020 and was not followed up on.
My curiosity is if this is the typical time line for dealing with cancer. To me, things should be of some urgency to prevent the cancer cells from growing. Already, the mass has grown a centimeter since June.
Also, how long does it take to be seen in Mayo once you get a referral? If you get a referral?

Interested in more discussions like this? Go to the Lung Cancer group.

Your question about 'wait time' is something I have talked about and others here have mentioned it. When a tumor is discovered, a patient can only imagine it is growing every day. Frankly that is probably true though not as fast as we imagine.

My timeline quickly…. NSCLC noted in a Mayo PET scan July 2021. Surgery November 2021. Chemo and Radiation January 2022. Early August 2022, bladder tumor discovered. End of September 2022, they will do a removal and biopsy.

I can't comment on how long it will take to get into Mayo. Oddly enough, what got me to Mayo was abdominal issues and it took well over a year before they accepted me as a patient. I hope your wait time is much less than mine.

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How long it takes to be seen at Mayo depends on many factors. Your mothers situation, available appointments, etc…

Is your local dr doing a referral ?

You can also contact Mayo directly to request an appointment, start here: https://www.mayoclinic.org/appointment-requests

Laurie

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Per Laurie's comment, time for an appointment with Mayo depends on many factors. Does your mother have original Medicare? She may be able to refer herself to Mayo. Her doctor should send actual scans (not reports) to Mayo Clinic….and check to see when and if they did it and if they were received at Mayo! I have original Medicare and self-referred.

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I’m sorry to hear of your mother’s diagnosis. The early stages of diagnosis and treatment planning can be frustrating when you want to see action. Her current doctors are being careful, and want all of the possible information before doing surgery or taking other action. As a patient, that’s frustrating, but it may be necessary to find the right care plan.
Is your mother is good health otherwise; strong heart, decent mobility? Consider your mother’s age and the impact that travel to Rochester and treatments may have on her too. Surgery and treatment on a lung is difficult for even the healthiest patients.
I’m sorry if this seems harsh, I’m a stage IV lung cancer patient at the age of 52, I have a very different outlook on age and what I want the end of my life to look like. It never hurts to step back and take a pause and assess if a treatment is the right thing based on the overall situation. Take care, I wish you and your mother the best. Peace.

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@sierracharlie

Your question about 'wait time' is something I have talked about and others here have mentioned it. When a tumor is discovered, a patient can only imagine it is growing every day. Frankly that is probably true though not as fast as we imagine.

My timeline quickly…. NSCLC noted in a Mayo PET scan July 2021. Surgery November 2021. Chemo and Radiation January 2022. Early August 2022, bladder tumor discovered. End of September 2022, they will do a removal and biopsy.

I can't comment on how long it will take to get into Mayo. Oddly enough, what got me to Mayo was abdominal issues and it took well over a year before they accepted me as a patient. I hope your wait time is much less than mine.

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Thank you, SierraCharlie, for this helpful timeline and for reaching out while in the middle of your battle. All the best to you in September!

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@lls8000

I’m sorry to hear of your mother’s diagnosis. The early stages of diagnosis and treatment planning can be frustrating when you want to see action. Her current doctors are being careful, and want all of the possible information before doing surgery or taking other action. As a patient, that’s frustrating, but it may be necessary to find the right care plan.
Is your mother is good health otherwise; strong heart, decent mobility? Consider your mother’s age and the impact that travel to Rochester and treatments may have on her too. Surgery and treatment on a lung is difficult for even the healthiest patients.
I’m sorry if this seems harsh, I’m a stage IV lung cancer patient at the age of 52, I have a very different outlook on age and what I want the end of my life to look like. It never hurts to step back and take a pause and assess if a treatment is the right thing based on the overall situation. Take care, I wish you and your mother the best. Peace.

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Thank you, lls8000, for taking time to write this note, which was not "harsh" in the least. I liked the phrase "her doctors are being careful" in deciding on the correct plan of action.

My Mom is content with the doctors and the treatment plan that has been laid out so far, but it's my siblings who question that process and, then, make me second guess myself. I worked as a heart nurse for over 35 years and things moved quickly in that world, so this cancer world seems to be on a different level. I just wanted to make sure this was a somewhat normal time frame.

I'm sorry for your diagnosis and wish you all the best.

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@sonofmamj
This is such a difficult time for your family. Of course you all want what is best for your mother.
I hope she is comfortable and home. If getting another opinion at Mayo Clinic is something your mother wants then here is the link:
http://mayocl.in/1mtmR63
Although your mother may be able to self-refer it's often best to have a physician make the referral. Will your mother's oncologist do that and send her records? This will speed up the process.

I don't know how long it will take to get an appointment at Mayo Clinic in Rochester. I do know that once a request is made from the online link or the referral is made that you will hear back from Mayo Clinic with a few days. You can then ask how long the process will take.

I'm wishing blessings to you, your mother, and your family. She is surely loved and cared for by you all.

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@naturegirl5

@sonofmamj
This is such a difficult time for your family. Of course you all want what is best for your mother.
I hope she is comfortable and home. If getting another opinion at Mayo Clinic is something your mother wants then here is the link:
http://mayocl.in/1mtmR63
Although your mother may be able to self-refer it's often best to have a physician make the referral. Will your mother's oncologist do that and send her records? This will speed up the process.

I don't know how long it will take to get an appointment at Mayo Clinic in Rochester. I do know that once a request is made from the online link or the referral is made that you will hear back from Mayo Clinic with a few days. You can then ask how long the process will take.

I'm wishing blessings to you, your mother, and your family. She is surely loved and cared for by you all.

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Regarding your comment on physician referrals, after reading my reports online (by law they have to post those reports) I realized I could have lung cancer. I therefore asked my local Pulmonologist to send my scans to Mayo. In response, my local Pulmonologist suggested I be diagnosed with them, and then go to Mayo Clinic for treatment. That did not seem logical to me, and I again requested they send my scans to Mayo since my insurance allows me to self-refer. That turned out to be a very wise decision on my part.

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@sonofmamaj

Thank you, lls8000, for taking time to write this note, which was not "harsh" in the least. I liked the phrase "her doctors are being careful" in deciding on the correct plan of action.

My Mom is content with the doctors and the treatment plan that has been laid out so far, but it's my siblings who question that process and, then, make me second guess myself. I worked as a heart nurse for over 35 years and things moved quickly in that world, so this cancer world seems to be on a different level. I just wanted to make sure this was a somewhat normal time frame.

I'm sorry for your diagnosis and wish you all the best.

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Your mother is fortunate to have your nursing experience on her side. Trust your instincts, they will serve you well. Sometimes a push is needed to move the process along. Or a push to your siblings to back off, ;). Ask questions, even about the delays. Take care!, Lisa

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