Wait times

Posted by kamoto @kamoto, Jun 7 1:36pm

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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@kamoto, wait times across the nation are longer than normal. I can understand you're angry, disappointed and worried. Did you request to be contacted should an earlier appointment become available?

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Waiting is so difficult. Healthcare in general is very busy right now, there’s too much cancer and not enough staff and space to handle it all. Are your symptoms worsening?, if yes, then be sure to communicate that prior to your appointment.
While I was waiting for biomarker tests to come back, I felt that I was watching myself slip deeper and deeper by the week. Pay attention to your body, get the care you need.

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Kamoto- Good morning. I love Colleen's suggestion about getting on a waiting list. I've had lung cancer for 24+ years and one time, recently, my hospital couldn't get me in for a CT scan. I had to go to another approved hospital. CT scans are like gold right now.

Covid really put a damper on available doctors, trained technicians, and others who run medical facilities. I know that you are angry and feeling scared. I sure was. If I were you, to help burn off some of your angst, I would take this time to do as much to build up your endurance as possible. Are you able to get out and walk?

Would you mind telling me some of your history and why your lung cancer and Mets are so advanced prior to seeing a doctor?

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@merpreb

Kamoto- Good morning. I love Colleen's suggestion about getting on a waiting list. I've had lung cancer for 24+ years and one time, recently, my hospital couldn't get me in for a CT scan. I had to go to another approved hospital. CT scans are like gold right now.

Covid really put a damper on available doctors, trained technicians, and others who run medical facilities. I know that you are angry and feeling scared. I sure was. If I were you, to help burn off some of your angst, I would take this time to do as much to build up your endurance as possible. Are you able to get out and walk?

Would you mind telling me some of your history and why your lung cancer and Mets are so advanced prior to seeing a doctor?

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And I have read that the contrast media needed for CT scans with contrast is in short supply due to supply line issues, and therefore they are being rationed. Fortunately, our lung nodules don't require contrast

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@vic83

And I have read that the contrast media needed for CT scans with contrast is in short supply due to supply line issues, and therefore they are being rationed. Fortunately, our lung nodules don't require contrast

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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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I wouldn't say angry. I'm actually quite the opposite, and have a no worries attitude. I don't ever beg or demand anything from anyone. I give people and organizations a chance, and if they don't meet my requirements I simply move on. If you have ever seen "The Secret" which is a documentary film where positive thinking results in positive things happening for you, you will know the outlook I'm mentioning.

Hi Merry. I had Covid in Jan of 2020. Lung xray showed no issues. Moved to Bozeman MT in Sept of 2020. After a few months of being here, noticed I was always out of breath and my back hurt. Nurse Practioner ordered a back xray which showed advanced osteo arthritis and she did an ultrasound of my heart which was sound. Had some physical therapy and then in April of 2021, went to Las Vegas. Had a Thai massage which was very forceful. This sent my left rib tumor into a tizzy, and I ended up in the emergency room to find out what the pain was. Chest xray showed the lung tumor. So I had ZERO normal signals I had cancer growing inside of me and growing fast. Out of breath and back pain are associated with so many things. Would be nice if we had Star Trek level scanners which state you have X issue. LOL.

Mayo wants me to see local oncologist and establish relationship before my appointment. So maybe he can tell me how bad or good I'm looking.

Thanks All

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@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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Merry,

I didn't know you have another lesion. Is there a chance its just a lesion and not cancerous? I just get so disappointed to hear I have another one but I'm so thankful the y90 treatments keep working.

What treatment path will you follow if it has grown?

Praying blessings on you. Keep us posted.

Diane

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@digibson

Merry,

I didn't know you have another lesion. Is there a chance its just a lesion and not cancerous? I just get so disappointed to hear I have another one but I'm so thankful the y90 treatments keep working.

What treatment path will you follow if it has grown?

Praying blessings on you. Keep us posted.

Diane

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Diane- I have what is called multifocal adenocarcinoma lung cancer. All the lesions are considered primary so there isn't, as we know it, metastasis. But I don't get off that easily because it means that this cancer causes lots of lesions to grow. Some grow and keep growing into cancer and some stay the same and some disappear. It's indolent cancer and when it grows it usually begins as ground glass and then changes.

My next CT will tell if my GG has changed and grown. This will be my 6th lung cancer. My treatment of choice, based on many conversations and research is SBRT. It's targeted radiation that minimizes damage to surrounding tissue and other organs. This would be my 3rd. Fatigue would be the major side effect and possible skin burns (not serious). I had a slight sunburn on my back the last time. But it wasn't painful. That was 5 years ago.

Thank you for your kind concern.

I am glad that your y90 treatments work for you. There have been so many advances in cancer treatments that spin the brain! But in a good way.

Merry

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@kamoto

I wouldn't say angry. I'm actually quite the opposite, and have a no worries attitude. I don't ever beg or demand anything from anyone. I give people and organizations a chance, and if they don't meet my requirements I simply move on. If you have ever seen "The Secret" which is a documentary film where positive thinking results in positive things happening for you, you will know the outlook I'm mentioning.

Hi Merry. I had Covid in Jan of 2020. Lung xray showed no issues. Moved to Bozeman MT in Sept of 2020. After a few months of being here, noticed I was always out of breath and my back hurt. Nurse Practioner ordered a back xray which showed advanced osteo arthritis and she did an ultrasound of my heart which was sound. Had some physical therapy and then in April of 2021, went to Las Vegas. Had a Thai massage which was very forceful. This sent my left rib tumor into a tizzy, and I ended up in the emergency room to find out what the pain was. Chest xray showed the lung tumor. So I had ZERO normal signals I had cancer growing inside of me and growing fast. Out of breath and back pain are associated with so many things. Would be nice if we had Star Trek level scanners which state you have X issue. LOL.

Mayo wants me to see local oncologist and establish relationship before my appointment. So maybe he can tell me how bad or good I'm looking.

Thanks All

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@kamoto– I'm not sure what the stats are regarding finding lung cancer as a secondary issue. Mine was caught because I had injured a rib and wanted to know if it was broken. But I did know that something was wrong and although the reality was shocking I wasn't truly surprised.

There are a lot of people in this discussion and other cancer discussions whose cancer was found because of another concern.

It certainly would be interesting to find out how many people and what their stories are, right?

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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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@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?

Jump to this post

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

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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