1. < Lung Cancer

Newly diagnosed with lung cancer

Posted by grandmaR @grandmar, Sep 12, 2020

Hi All!
My name is Ronnie. I am 65 years old and was diagnosed with lung cancer almost 2 weeks ago. Last Monday, I had surgery.

About 7 years ago during a hospital stay (unrelated), nodules were spotted on a chest x-ray. There was one on my left bottom lung that was larger than the others. I was told it was currently nothing but to keep an eye on it. For the next 7 years I had a CAT scan every 6-12 months. Due to circumstances, including (but not limited to) COVID, I was late with my check-up. About 2 months ago, I started with a new pulmonologist. He ordered the CAT scan. The report concluded that additional testing was suggested because of the larger nodule. With my history of early Melanoma 3 years ago, and the death of my mother from lung cancer, my doctor agreed.

After fighting with the insurance company for over 2 weeks, they finally approved the PET Scan. The PET scan agreed with the CAT Scan report about the cancer. I had 2 consults and decided to go with the doctor from a cancer center. I was given 2 treatment choices, radiation for 5 days or surgery. I opted for surgery. The surgery was done robotically. The nodule was removed and so were lymph nodes (I think 5). This coming Wednesday I see the surgeon for the results of the pathology report and for an action plan. If the surgeon was correct in his diagnoses, no other treatment will be needed. I should just have to be checked regularly (to be determined), exercise to keep my lungs healthy, eat right and be cautious.

Now, other than the incision for the chest tube, there are 2 incisions between my ribs. one is to the left of my left breast. I assume that is where he went in for the lymph node. Since surgery, my breast (on the left side) has been very painful and the pain goes around to my back. The intensity chances. Some days I feel pretty good, but days like today, I actually needed a pain pill (which I haven't taken since day 2 after surgery). Have any of you experienced the same sort of thing after surgery?

I pray for each and every one of us to have a positive outcome from our surgeries and treatments.
Bless us all!

GRANDMAr (Ronnie)

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

grandmaR | @grandmar | Oct 17, 2020
In reply to @ta52 "The similarities are striking although my lung nodule is the least of my problems. Mine metastasized..." + (show)
@ta52

The similarities are striking although my lung nodule is the least of my problems. Mine metastasized in my lymph nodes where it really created a problem. I start immuno/chemotherapy Thursday. And like you, I had no idea any of this way going on.
It amazes me that you had to fight for a PET scan. Did they give a reason?

Jump to this post

Hello
First let me say how sorry I am that the cancer spread to your nodules! I believe the surgeon removed so many lymph nodes as a precaution for the future.
I was told that without a biopsy the PET scan would not be approved. It is more expensive than the biopsy. My pulmonologist fought it as well as the advocate from Medicare.
My CT scan suggested the possibility of cancer. It took 2 weeks but it was finally approved. It is standars procedure to do a PET from the brain to just below the lungs. Since I had Melanoma 3 years ago on my toe, the scan went from the top of my head to the tip of my toes.
The best advice I can give you is to find the best cancer hospital you can get to. These have the best resources, updated techniques, research, etc.
I interviewed a doctor from an excellent hospital. He wanted to remove my entire lobe. The surgeon from the cancer hospital said that doing that was not necessary as far as recovery or the cancer coming back.
I wish you all the best!!!
Ronnie

REPLY
Merry, Alumni Mentor | @merpreb | Oct 18, 2020
In reply to @ta52 "The similarities are striking although my lung nodule is the least of my problems. Mine metastasized..." + (show)
@ta52

The similarities are striking although my lung nodule is the least of my problems. Mine metastasized in my lymph nodes where it really created a problem. I start immuno/chemotherapy Thursday. And like you, I had no idea any of this way going on.
It amazes me that you had to fight for a PET scan. Did they give a reason?

Jump to this post

@ta52- Welcome to Mayo Clinic Connect. It is so scary to find out that something has been going on inside of you that you have been totally unaware of. What brought you to the doctor in the first place? Do you have the results of the biopsies and know what type of lung cancer that you have?

REPLY
diana5 | @diana5 | Aug 21, 2023

Hello, my name is Diana, and I am 74 hrs old, and have never smoke. I was diagnosed with lung cancer two weeks ago. My pulmonologist have been doing CT scans on a yearly basis following up on various nodules (3) on my left lung discovered by accident 5 years ago. In the last CT scan it showed that the nodule he has been following measured 9.71 mm, and had changed shape (like a pear). He suggested to do a robotic bronchoscopy and biopsy of it and of some lymph nodes. The result came back as “carcinoid tumor”. He is recommending removal of it, as well as the lower left lobe of the lung via robotic surgery. I have met with a surgeon, and he also recommends the same. He said because of where the tumor is located, a partial removal will not work, or a wedge, since the tumor is in the center. He informed me that Carcinoid tumors do not respond to chemo, and when given radiation, they might stop growing for a while, only to start again down the road. They believe that because I am healthy (so I thought), surgery will be the best way for me. Looking for some feedback, what to expect. I’ve never had any major surgeries, and still trying to wrap my head around what’s ahead. Thanks! Blessings to all fighting cancer.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 22, 2023
In reply to @diana5 "Hello, my name is Diana, and I am 74 hrs old, and have never smoke. I..." + (show)
@diana5

Hello, my name is Diana, and I am 74 hrs old, and have never smoke. I was diagnosed with lung cancer two weeks ago. My pulmonologist have been doing CT scans on a yearly basis following up on various nodules (3) on my left lung discovered by accident 5 years ago. In the last CT scan it showed that the nodule he has been following measured 9.71 mm, and had changed shape (like a pear). He suggested to do a robotic bronchoscopy and biopsy of it and of some lymph nodes. The result came back as “carcinoid tumor”. He is recommending removal of it, as well as the lower left lobe of the lung via robotic surgery. I have met with a surgeon, and he also recommends the same. He said because of where the tumor is located, a partial removal will not work, or a wedge, since the tumor is in the center. He informed me that Carcinoid tumors do not respond to chemo, and when given radiation, they might stop growing for a while, only to start again down the road. They believe that because I am healthy (so I thought), surgery will be the best way for me. Looking for some feedback, what to expect. I’ve never had any major surgeries, and still trying to wrap my head around what’s ahead. Thanks! Blessings to all fighting cancer.

Jump to this post

Welcome, @diana5. There are different types of lung cancer. A carcinoid tumor is a type of neuroendocrine tumor that grows from neuroendocrine cells. Neuroendocrine cells are found in organs throughout the body. Carcinoid tumors often grow very slowly.

I recommend that in addition to taking part in the discussion in the lung cancer support group, that you may also wish to follow the:
- Neuroendocrine Tumors (NETs) support group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I encourage you to introduce yourself in this discussion to meet other members with carcinoid tumor of the lung:
- Anyone had surgery to remove typical carcinoids of the lung? https://connect.mayoclinic.org/discussion/typical-carcinoids/

REPLY
1 reply
diana5 | @diana5 | Aug 23, 2023
In reply to @colleenyoung "Welcome, @diana5. There are different types of lung cancer. A carcinoid tumor is a type of..." + (show)
@colleenyoung

Welcome, @diana5. There are different types of lung cancer. A carcinoid tumor is a type of neuroendocrine tumor that grows from neuroendocrine cells. Neuroendocrine cells are found in organs throughout the body. Carcinoid tumors often grow very slowly.

I recommend that in addition to taking part in the discussion in the lung cancer support group, that you may also wish to follow the:
- Neuroendocrine Tumors (NETs) support group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I encourage you to introduce yourself in this discussion to meet other members with carcinoid tumor of the lung:
- Anyone had surgery to remove typical carcinoids of the lung? https://connect.mayoclinic.org/discussion/typical-carcinoids/

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Hi Colleen,
Thank you for your response, and for letting me know about the other two groups I should follow. I’m definitely scared about this upcoming surgery scheduled for mid September. I live in CT and my doctors are all directors at St. Francis Hospital, so I know I’m in good hands. I do worry about the other nodules, since they are not being removed at this time, and I have some on the right lung as well.

REPLY
Merry, Alumni Mentor | @merpreb | Aug 23, 2023
In reply to @diana5 "Hello, my name is Diana, and I am 74 hrs old, and have never smoke. I..." + (show)
@diana5

Hello, my name is Diana, and I am 74 hrs old, and have never smoke. I was diagnosed with lung cancer two weeks ago. My pulmonologist have been doing CT scans on a yearly basis following up on various nodules (3) on my left lung discovered by accident 5 years ago. In the last CT scan it showed that the nodule he has been following measured 9.71 mm, and had changed shape (like a pear). He suggested to do a robotic bronchoscopy and biopsy of it and of some lymph nodes. The result came back as “carcinoid tumor”. He is recommending removal of it, as well as the lower left lobe of the lung via robotic surgery. I have met with a surgeon, and he also recommends the same. He said because of where the tumor is located, a partial removal will not work, or a wedge, since the tumor is in the center. He informed me that Carcinoid tumors do not respond to chemo, and when given radiation, they might stop growing for a while, only to start again down the road. They believe that because I am healthy (so I thought), surgery will be the best way for me. Looking for some feedback, what to expect. I’ve never had any major surgeries, and still trying to wrap my head around what’s ahead. Thanks! Blessings to all fighting cancer.

Jump to this post

Welcome, diana5. I'm sorry for your recent diagnosis. It's quite a scare. Isn't it, even if it's been way back in your subconscious? It's different from regular, old-fashioned, and sometimes is referred to as a syndrome rather than a true cancer.

One thing that makes it different is that many people are cured of it by having it completely removed.

There is a group dedicated to just this.
https://connect.mayoclinic.org/discussion/carcinoid-tumor-diagnosis/
I'm sure others with carcinoids can help you.

What have you decided to do?

REPLY
1 reply
diana5 | @diana5 | Aug 23, 2023
In reply to @merpreb "Welcome, diana5. I'm sorry for your recent diagnosis. It's quite a scare. Isn't it, even if..." + (show)
@merpreb

Welcome, diana5. I'm sorry for your recent diagnosis. It's quite a scare. Isn't it, even if it's been way back in your subconscious? It's different from regular, old-fashioned, and sometimes is referred to as a syndrome rather than a true cancer.

One thing that makes it different is that many people are cured of it by having it completely removed.

There is a group dedicated to just this.
https://connect.mayoclinic.org/discussion/carcinoid-tumor-diagnosis/
I'm sure others with carcinoids can help you.

What have you decided to do?

Jump to this post

Hi Merry, Thank you for your suggestion to follow the group.
As to what I have decided, I am going through some tests (full pulmonary breathing test, CT with contrast, need approval from my primary doctor, as well as cardiologist, and a complete blood test). If everything looks good, and everyone gives approval, then I’m looking at removal of the lower left nodule mid September. Still have questions as to and how we will monitor the other nodules. Will I need to see an oncologist, etc. Definitely scared, but hoping for the best!

REPLY
1 reply
confident | @confident | Aug 24, 2023

I'm going to put a positive spin on this.....Be glad surgery is an option.

REPLY
1 reply
diana5 | @diana5 | Aug 24, 2023
In reply to @confident "I'm going to put a positive spin on this.....Be glad surgery is an option." + (show)
@confident

I'm going to put a positive spin on this.....Be glad surgery is an option.

Jump to this post

Me too! I’ve heard others don’t have that option, so I’m grateful! 😊

REPLY
Merry, Alumni Mentor | @merpreb | Aug 25, 2023
In reply to @diana5 "Hi Merry, Thank you for your suggestion to follow the group. As to what I have..." + (show)
@diana5

Hi Merry, Thank you for your suggestion to follow the group.
As to what I have decided, I am going through some tests (full pulmonary breathing test, CT with contrast, need approval from my primary doctor, as well as cardiologist, and a complete blood test). If everything looks good, and everyone gives approval, then I’m looking at removal of the lower left nodule mid September. Still have questions as to and how we will monitor the other nodules. Will I need to see an oncologist, etc. Definitely scared, but hoping for the best!

Jump to this post

Hi Diana- I think that your decision is right on. I can tell that you've given this a lot of deep thinking. Cancer is scary and scares everyone. How have you gotten through, in the past when things got scary? Bring up your most vivid fantasies and dreams when you close your eyes. Hum your favorite tunes....walk in the water....

In my own experience, an oncologist only came into the picture when some form of chemical intervention was added to the treatment. You are starting with surgery. If there is a need for chemicals after surgery, then you will need an oncologist.

Mid-September is a lovely time for surgery because you can get out in the clear air and walk back to health.

So, what have you used in the past to help you get through scary times?

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