Multiple lung nodules: Might they be noncancerous? What next?

Posted by felix536 @felix536, Aug 17, 2021

I have 3 lung nodules measuring 4mm, 6mm and 14 mm in three different lobes. Have had ct scans showing no change in 6 months and have another scan scheduled in three months per my pulmonologist. Should I get a second opinion from an Oncologist or wait it out? What are the chances of this being noncancerous?

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@vic83

In November a chest x-ray showed "ground glass" and indeterminate. I went to a Pulmonologist to order CT and PET scan and I had those scans sent to Mayo. They called immediately, and I decided to do bronchoscopy + VATs with wedge resection surgery at same time. It was a 3.1cm cancer stage 1b. That means negative lymph nodes. I had the option to wait, but I am not getting any younger, and there was a very high probability that it was cancer. Better to do the surgery when I will tolerate it well...which I did. Now I too must watch and wait as I still have a 7mm pleural based nodule and ground glass.

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Hi, Vic. You are the FIRST person who I've found has a pleural based nodule. I have somewhere around 8 of them, both lungs, ranging in size from 6mm, 5mm, a couple 3mm, and some smaller. What are you being told can be done about your pleural based nodule and if it is cancerous, how do they treat it? I have two LDCT, one in May and one last month. So far all I can tell that is new is that they found pleural thickening in both lungs, but they don't plan to rescan until NEXT AUGUST!!!!! Based on your experience, what would you do? Request another one sooner, request PET, go to another pulmonologist? LOL

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@aahlrichs

Omgosh. You have a lot going on. I just said a prayer for you. I will know more on Monday and what kind of kickback my dr wants to give me on how to proceed. Sounds like a PET scan is the first step on what I’m reading..less invasive. Wonder how long that wait is. My family physician is with mayo and all my tests and records are at mayo. I do everything there.

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aahlrichs, It's nice to hear you are in the Mayo system, If you can share, I'm curious if your family physician is located in Rochester, Jacksonville, or Scottsdale? Or practicing in one of the many outlying Mayo owned hospitals or clinics. Anyway there are many locations in the Minnesota, Wisconsin area. I'm not sure about Florida and Arizona. Thanks

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@aahlrichs

Wow! That’s amazing you got in so quickly!!

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I had a stent in April, and am on Plavix for six months, I knew that one cannot take Paxlovid antiviral together with Plavix if one catches Covid. My new primary care doctor here in Twin Cities passed my info to their Covid team but told me he did not know when they would call me and if there would be quantities of monoclonal antibody treatment available. He suggested I use my Mayo contacts. I am always on the Internet and saw a new study from Mayo that one monoclonal is almost as good as Paxlovid. I emailed one of the doctors and he responded right away. I also contacted my Mayo Pulmonologist to refer me to Mayo Covid team. I got a call within the hour. ON TOP OF THAT, the next morning (SATURDAY) I am just about to go into a Mayo Clinic for infusion and I get a call from Mayo Covid team. They did not know I already had an appointment and were reaching out to me because they track Minnesota positive Covid cases and contact Mayo patients to offer treatment. Mayo had my medical data, and they score patients on risk and contact those at highest risk of severe disease. Now that is how life is supposed to be. ....Now here in town? I had positive test on Thursday 6:30pm, spoke to Primary Fri morning and heard NOTHING from their Covid team until Mon at 11:05 am. That person explained to me that 1) they don't work on weekends 2) they don't score patients based on risk. It is a lottery system to be "fair". People with risk of 2 are mixed together with people with risk 15. And they had no openings for another two days earliest. Treatment should be started as early as possible, pills within 5 days and monoclonal within 7 days - so they are reaching patients too late. I of course submitted a complaint on that! One uses a lottery system when everyone is EQUAL, and the CDC clearly addresses treatment to be based on risk..and Covid works the weekend

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@vic83

Thanks. I am doing well. I don't care if I have lung cancer if it can be managed. Multifocal is like chronic lung cancer and slow growing. It is considered complex, and Mayo likes complex, so they told me. In fact, in Oct 2023, they are coming out with a ten-year study on it.
So, you are not in Twin Cites then. It is convenient to have all your records at Mayo, then your next specialist can see them without a lot of effort. I discovered I had a heart problem at the same time as my lung problem. I asked my Mayo Pulmonologist to refer me to Cardiology so I could have my medical decisions coordinated (I needed a stent which requires drug therapy that prohibits surgery for at least 6 months). I got an appointment within a week. I caught Covid in August and could not get prompt alternative treatment locally so I called Mayo and I had same day appointment.

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Wow! That’s amazing you got in so quickly!!

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@aahlrichs

Omgosh. You have a lot going on. I just said a prayer for you. I will know more on Monday and what kind of kickback my dr wants to give me on how to proceed. Sounds like a PET scan is the first step on what I’m reading..less invasive. Wonder how long that wait is. My family physician is with mayo and all my tests and records are at mayo. I do everything there.

Jump to this post

Thanks. I am doing well. I don't care if I have lung cancer if it can be managed. Multifocal is like chronic lung cancer and slow growing. It is considered complex, and Mayo likes complex, so they told me. In fact, in Oct 2023, they are coming out with a ten-year study on it.
So, you are not in Twin Cites then. It is convenient to have all your records at Mayo, then your next specialist can see them without a lot of effort. I discovered I had a heart problem at the same time as my lung problem. I asked my Mayo Pulmonologist to refer me to Cardiology so I could have my medical decisions coordinated (I needed a stent which requires drug therapy that prohibits surgery for at least 6 months). I got an appointment within a week. I caught Covid in August and could not get prompt alternative treatment locally so I called Mayo and I had same day appointment.

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@vic83

It all depends on your insurance. If you cannot self-refer, I would certainly be insistent with your Primary Care doctor about seeing a Pulmonologist.
Regarding Mayo, they can move things along when they think it is the case. I sent my CT and PET scans (they want the actual scans not the report so be sure your doctor puts in the request to do that) and I was called the next morning by the Mayo Pulmonologist.
My x-ray said wait 6 weeks to do another x-ray and then CT scan, but I had local Pulmonologist order CT scan immediately. I read those reports and looked my local Pulmonologist in the eye and said I was going to Mayo. They were not happy, but I have original Medicare and pay mucho money for my Medigap insurance. I learned that it is very important to understand exactly what type of treatments are available and if your clinic/provider is capable of providing all options. My local clinic could not do VAT surgery for example. Also, the local Pulmonologist wanted to do a needle biopsy on the largest area, but their Radiologist refused to do it. He said that it was too risky, and he could not get enough sample tissue.
Mayo offered me surgery immediately and said 80% chance cancer. They did bronchial biopsy and VAT surgery together. Also, the first local CT scan only picked up two areas of concern. Mayo CT scan prep for surgery identified other nodules – they set their machines to do this. So, I was diagnosed with multifocal adenocarcinoma. They took out the largest area which was cancer and now I sit back and wait to see what the other nodules do. The area in the left lung which also lit up on the PET scan has not changed in 10 months and could still be scarring and not cancer. The other nodules in the right lung are part solid and ground glass. They don't want to do needle biopsy.

Jump to this post

Omgosh. You have a lot going on. I just said a prayer for you. I will know more on Monday and what kind of kickback my dr wants to give me on how to proceed. Sounds like a PET scan is the first step on what I’m reading..less invasive. Wonder how long that wait is. My family physician is with mayo and all my tests and records are at mayo. I do everything there.

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@aahlrichs

Thank you! It was my primary Dr. I’m going to ask her to refer me to a pulmonologist. But you know how mayo is..it will probably be months before I can get in. And the report stated wait 3 mos and do another ct scan..but that person doesn’t know my family history! So frustrating.

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PS - Mayo wants to see the actual scans and x-rays. I had to do an x-ray a few weeks after my VAT surgery, and Mayo gave me the order to do it locally. The local provider issued a written report, but Mayo evaluated and issued its' own report on that x-ray!

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@stanleykent

aahrichs
For me, I had a three month interval after my first CT to monitor a smaller nodule. At three months it was larger and a biopsy confirmed cancer, then a PET, and had surgery.
I'm not sure where you are located, but depending on their schedule/workload, Mayo can see people pretty quickly. For me, this all started a couple years ago, My doctor say some abnormal blood tests and referred me to a local oncology group and had to wait 3+ weeks for an appointment. On my own, I called Mayo on a Monday and received an appointment that Friday. Since then, I've had many appointments, and another surgery. In my opinion, making that first call to Mayo was the best thing I ever did. But there are many great doctors and facilities. Find what works for you and your family.

For me this has been stressful and expect it is for you and the family and am wishing you the best outcome possible, Colleen has provided a number of links to other connect conversations and encourage you to also look further at the connect website for other related podcasts and webinars. Let us know if you have questions and keep us updated. Good luck

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Thank you! It is stressful but my faith keeps me calm. ♥️ All I can do is keep looking for answers and praying.

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@aahlrichs

Thank you! It was my primary Dr. I’m going to ask her to refer me to a pulmonologist. But you know how mayo is..it will probably be months before I can get in. And the report stated wait 3 mos and do another ct scan..but that person doesn’t know my family history! So frustrating.

Jump to this post

It all depends on your insurance. If you cannot self-refer, I would certainly be insistent with your Primary Care doctor about seeing a Pulmonologist.
Regarding Mayo, they can move things along when they think it is the case. I sent my CT and PET scans (they want the actual scans not the report so be sure your doctor puts in the request to do that) and I was called the next morning by the Mayo Pulmonologist.
My x-ray said wait 6 weeks to do another x-ray and then CT scan, but I had local Pulmonologist order CT scan immediately. I read those reports and looked my local Pulmonologist in the eye and said I was going to Mayo. They were not happy, but I have original Medicare and pay mucho money for my Medigap insurance. I learned that it is very important to understand exactly what type of treatments are available and if your clinic/provider is capable of providing all options. My local clinic could not do VAT surgery for example. Also, the local Pulmonologist wanted to do a needle biopsy on the largest area, but their Radiologist refused to do it. He said that it was too risky, and he could not get enough sample tissue.
Mayo offered me surgery immediately and said 80% chance cancer. They did bronchial biopsy and VAT surgery together. Also, the first local CT scan only picked up two areas of concern. Mayo CT scan prep for surgery identified other nodules – they set their machines to do this. So, I was diagnosed with multifocal adenocarcinoma. They took out the largest area which was cancer and now I sit back and wait to see what the other nodules do. The area in the left lung which also lit up on the PET scan has not changed in 10 months and could still be scarring and not cancer. The other nodules in the right lung are part solid and ground glass. They don't want to do needle biopsy.

REPLY
@aahlrichs

Thank you! It was my primary Dr. I’m going to ask her to refer me to a pulmonologist. But you know how mayo is..it will probably be months before I can get in. And the report stated wait 3 mos and do another ct scan..but that person doesn’t know my family history! So frustrating.

Jump to this post

aahrichs
For me, I had a three month interval after my first CT to monitor a smaller nodule. At three months it was larger and a biopsy confirmed cancer, then a PET, and had surgery.
I'm not sure where you are located, but depending on their schedule/workload, Mayo can see people pretty quickly. For me, this all started a couple years ago, My doctor say some abnormal blood tests and referred me to a local oncology group and had to wait 3+ weeks for an appointment. On my own, I called Mayo on a Monday and received an appointment that Friday. Since then, I've had many appointments, and another surgery. In my opinion, making that first call to Mayo was the best thing I ever did. But there are many great doctors and facilities. Find what works for you and your family.

For me this has been stressful and expect it is for you and the family and am wishing you the best outcome possible, Colleen has provided a number of links to other connect conversations and encourage you to also look further at the connect website for other related podcasts and webinars. Let us know if you have questions and keep us updated. Good luck

REPLY
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