1. < Lung Cancer

Wait times

Posted by kamoto @kamoto, Jun 7, 2022

Got my call back from Oncology screening. July 16th is my initial appointment. Holy smokes. Since Mayo prioritizes appointments, that means my case isn't so bad (Stage 4 Lung with Mestatasis) or I'm a goner soon so why bother. I know Mayo is internationally respected and draws patients from all over the world, and I understand their need for business, but if we are delaying US citizens care for people in other countries, not sure I'm a fan of that.

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vic83 | @vic83 | Jun 11, 2022
In reply to @merpreb "You are correct about the shortage of contrast die being in short supply. I have all..." + (show)
@merpreb

You are correct about the shortage of contrast die being in short supply.

I have all of my CTs with contrast. A lot of people in this group do. But there are situations when it's not required.

There are a lot of shortages worldwide. I'm sure that you are familiar with them. But you must remember that there are alternatives in medicine. Covid has shown how resourceful and determined researchers are.

Lung cancer research has produced huge improvements in the last 10 years. Many people who might not have survived lung cancer are alive and living fruitful lives due to those improvements.

I have a CT coming up next month. I have another lesion that has grown. It will be my 6th lung cancer in my 25th year of lung cancer. I prefer to think of all those new treatments for my cancers and continued research while I wait to see if my lesion has grown.

Don't you think that these new treatments keeping people alive are just incredible?

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Sorry to make an assumption, I know better. My first CT scan was with contrast, but the next two (at Mayo) were not. Nor is the next one coming up in two weeks. Wonder why.

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1 reply
Merry, Alumni Mentor | @merpreb | Jun 11, 2022
In reply to @vic83 "Sorry to make an assumption, I know better. My first CT scan was with contrast, but..." + (show)
@vic83

Sorry to make an assumption, I know better. My first CT scan was with contrast, but the next two (at Mayo) were not. Nor is the next one coming up in two weeks. Wonder why.

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@vic83- There is no reason to apologize.

The most prevalent indications for CT, such as COPD, interstitial lung disease, pulmonary nodule, small or large airway disease, and lung cancer screening, do not require the use of any contrast media. But if your doctors are concerned about a potential problem or are following a lesion's growth contrast is used. There doesn't seem to be a standard between hospitals about this, nor about how the CT machines are adjusted. Major teaching hospitals set standards but often local hospitals don't have enough money or trained people to make these decisions.

A group of doctors can seem like a group of doctors. Right?

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1 reply
Merry, Alumni Mentor | @merpreb | Jun 11, 2022
In reply to @kamoto "Can't edit my post. It should say April of 2022 I went to Las Vegas. I..." + (show)
@kamoto

Can't edit my post. It should say April of 2022 I went to Las Vegas.

I agree Merry, there has to be a better way to initiate screenings. As I think back to my "Ethical Issues in Health" class at Boston College for my Theology requirement, the Jesuits are quite adamant that any health care procedure must be administered equally across all income ranges. I could certainly afford $1200 cost out of pocket for a CT scan every time I had a problem, but the Jesuits argue this isn't fair at all. Would mean advanced stage cancer is limited to the poor. Quite possibly why the health care system doesn't just order CT scans for any problem, that and the radiation dose you are experiencing. I'm with you, I'm a story guy. I like the details of every little issue that eventually combined into a late stage cancer diagnosis. We should write a book 🙂

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ha, ha, why not?

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vic83 | @vic83 | Jun 12, 2022
In reply to @merpreb "@vic83- There is no reason to apologize. The most prevalent indications for CT, such as COPD,..." + (show)
@merpreb

@vic83- There is no reason to apologize.

The most prevalent indications for CT, such as COPD, interstitial lung disease, pulmonary nodule, small or large airway disease, and lung cancer screening, do not require the use of any contrast media. But if your doctors are concerned about a potential problem or are following a lesion's growth contrast is used. There doesn't seem to be a standard between hospitals about this, nor about how the CT machines are adjusted. Major teaching hospitals set standards but often local hospitals don't have enough money or trained people to make these decisions.

A group of doctors can seem like a group of doctors. Right?

Jump to this post

In fact, I noticed that on my Mayo CT scans there is wording about adjusting to find lung nodules. My first CT scan with contrast was done before Mayo. And it recommended a PET which I did immediately. I try to go to same places for things now because there can be differences as you state... and also in the machines. What do you know about quality of radiation treatments from place to place? If I need in the near future, I have the option of doing at Mayo or locally there is a place.

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1 reply
Merry, Alumni Mentor | @merpreb | Jun 12, 2022
In reply to @vic83 "In fact, I noticed that on my Mayo CT scans there is wording about adjusting to..." + (show)
@vic83

In fact, I noticed that on my Mayo CT scans there is wording about adjusting to find lung nodules. My first CT scan with contrast was done before Mayo. And it recommended a PET which I did immediately. I try to go to same places for things now because there can be differences as you state... and also in the machines. What do you know about quality of radiation treatments from place to place? If I need in the near future, I have the option of doing at Mayo or locally there is a place.

Jump to this post

I live in New England so I use MGH, the second-best hospital in the US. Mayo used to have a satellite in NY but left. Since it is a teaching hosptial I go there and suggest that you will get the best care at MAYO, the best machines, research, etc.

To me, there isn't a choice. My local hospital is great for emergencies but their CT scans are horrible.

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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jun 12, 2022

We waited 6 months for OHSU in Portland to do a special type of PET scan for my husband. Then it took less than a week for our amazing doctor have him started on radiation for high grade prostrate cancer. If I had not continued to call for updates, I think we would still be waiting.
The wait times locally are “don’t call us, we’ll call you” for pretty much anything.
Are any of you trying the squeaky wheel technique? How is it working?

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2 replies
vic83 | @vic83 | Jun 12, 2022
In reply to @auntieoakley "We waited 6 months for OHSU in Portland to do a special type of PET scan..." + (show)
@auntieoakley

We waited 6 months for OHSU in Portland to do a special type of PET scan for my husband. Then it took less than a week for our amazing doctor have him started on radiation for high grade prostrate cancer. If I had not continued to call for updates, I think we would still be waiting.
The wait times locally are “don’t call us, we’ll call you” for pretty much anything.
Are any of you trying the squeaky wheel technique? How is it working?

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The squeaky wheel technique is the only technique as far as I am concerned. However, from various comments, it sounds like it depends on where one lives, insurance and provider. I have original Medicare with good Medigap policy. I can self-refer as long as the provider takes Medicare. I went from first chest x-ray at Urgent Care to actual lung surgery in 7 weeks with Thanksgiving and Christmas in-between. The Medicare Advantage policies restrict people to a network which may lack the right kind of expertise and require referral to see even a Specialist within their own network.

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Merry, Alumni Mentor | @merpreb | Jun 13, 2022
In reply to @auntieoakley "We waited 6 months for OHSU in Portland to do a special type of PET scan..." + (show)
@auntieoakley

We waited 6 months for OHSU in Portland to do a special type of PET scan for my husband. Then it took less than a week for our amazing doctor have him started on radiation for high grade prostrate cancer. If I had not continued to call for updates, I think we would still be waiting.
The wait times locally are “don’t call us, we’ll call you” for pretty much anything.
Are any of you trying the squeaky wheel technique? How is it working?

Jump to this post

Chris- I do, when needed! After a while, they are so sick of hearing my voice that they give me what I want!

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Tom Anderson | @ta52 | Jun 20, 2022

After Mayo received my medical records from another provider on Thursday they called me back the next day for a screening appointment Monday or Tuesday of the following week. I was seen on Tuesday, biopsy the next day and plan consultation after the tests were concluded the following week which is usually a two week process. The biggest delay was outside the walls of Mayo with getting the treatment plan OK'd by the insurance provider.
Mayo is the best, period. They don't hire people from the bottom third of the medical school class and my experience has been they prioritize on severity. And, by the way, I went from those initial days when I too was inoperable Stage IV NSCLC to NED in seven months. Did you ever stop to think why there are people from all over the world coming to Mayo for treatment? My family doctor once told me "if it's rare or serious, go to Mayo" and cancer is about as serious as it gets.

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vic83 | @vic83 | Jun 27, 2022
In reply to @kamoto "Can't edit my post. It should say April of 2022 I went to Las Vegas. I..." + (show)
@kamoto

Can't edit my post. It should say April of 2022 I went to Las Vegas.

I agree Merry, there has to be a better way to initiate screenings. As I think back to my "Ethical Issues in Health" class at Boston College for my Theology requirement, the Jesuits are quite adamant that any health care procedure must be administered equally across all income ranges. I could certainly afford $1200 cost out of pocket for a CT scan every time I had a problem, but the Jesuits argue this isn't fair at all. Would mean advanced stage cancer is limited to the poor. Quite possibly why the health care system doesn't just order CT scans for any problem, that and the radiation dose you are experiencing. I'm with you, I'm a story guy. I like the details of every little issue that eventually combined into a late stage cancer diagnosis. We should write a book 🙂

Jump to this post

Aha, one of my favorite subjects - healthcare costs! I had to research the industry when working. And I recall all the work to track my own healthcare account (I went to doctor, doctor sent bill to insurance company, insurance company paid me and then I paid the doctor). I would keep a spreadsheet for everything! Medicare is so much easier and more cost effective than our private insurance. The only complications are with the Medigap plans and the various drug plan. One has to figure them out. When they say "Choice" they mean confusion!!! What we need is universal healthcare for all, with everyone enrolled so that one pays a stable price throughout life and gets the care when one needs it

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