Adenocarcinoma - newly diagnosed

Posted by Sandy @pixiedust, Feb 26, 2023

Hello. I am new to this group. Thank you in advance for any guidance and or support you have to offer. I have been diagnosed with adenocarcinoma of the upper right lung. Have had a bronchocoscopy, x-rays, CT and lung biopsy - which determined the diagnosis. I have an appointment this Tuesday for a PET scan to determine staging, and a breathing test will follow. The only symptom I have had is hoarseness in my voice. Otherwise I feel fine. I am simply terrified and still in shock.
Pixiedust

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@mayocid1

It is 1.5 x 1.1 cm.
They wanted me to make a decision last week.
I’m still doing other tests they want and trying to set up a second opinion. My regular doctors told me I should do this. Not an easy assignment. The other hospital set me up with an appointment with a doc that doesn’t do lung cancer. I’m trying to go through an other area of the hospital and find a correct doctor.

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Have you completed a lung function test and an echocardiogram stress test yet? If they are pushing you to choose, they should have ordered these for you, so that you can be sure that surgery is even an option. One of the reasons my Aunt had SBRT was because her heart could not have handled the surgery on her lungs. I see you “name” is Mayocid1 but I’m assuming you are not being seen by Mayo Clinic?

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@franciekid

Nancy, I’m 78. Robotic surgery went very well. I have a few small - 1 inch or so - incisions in my side and one slightly bigger where the chest tube was. I had a segment of my right lung removed - not an entire lobe - and my breathing is fine. I am coughing, which I think is not unusual, and my
ribs in front are tender, but I’m doing well. I walked 5 miles one day last week - 3 weeks after surgery. I had a small nodule, so oncologist and thoracic surgeon agreed surgery was the best course. I start chemo next week. My Stage is 1b, so I was lucky. My best wishes to you.

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Mine is also 1b. They recommend surgery or SBRT my choice. No chemo.
Why do they suggest surgery and chemo for you?
I think I’m going to put them off while I ask more questions.

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@lls8000

Hi @mayocid1, Welcome to Mayo Connect! Getting this type of diagnosis is always such a shock, it's completely normal to need some help in processing the weight of the situation, and then they hit you with big decisions to be made! It is overwhelming.
Surgery and SBRT are both common options, and both can be effective. (SBRT Info: https://www.mayoclinic.org/tests-procedures/sbrt/pyc-20446794)
Personally, I haven't been presented with a decision like this yet. I'll likely face something similar in the future when my cancer returns, and I think I would certainly lean toward SBRT. I don't like the idea of sedation and recovering from a major surgery. I'm currently treated with a targeted therapy, and I'm now considered NED (no evidence of disease). I've seen the power of treatments other than surgery, so I'll be open to SBRT.
It sounds like you've had your share of surgeries, so you likely know what it's like to recover.
We all need to make our own decisions, and both sound like good options for you. How large is your primary tumor? When do you need to make a decision?

Jump to this post

It is 1.5 x 1.1 cm.
They wanted me to make a decision last week.
I’m still doing other tests they want and trying to set up a second opinion. My regular doctors told me I should do this. Not an easy assignment. The other hospital set me up with an appointment with a doc that doesn’t do lung cancer. I’m trying to go through an other area of the hospital and find a correct doctor.

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@cmcguire10

Hi Nancy- I just wanted to let you know that I am 3 1/2 weeks post op after my LUL segmentectomy and a lingular wedge for adenocarcinoma. My surgeon used the Robotic assisted method. It is easier and faster to recover from. I also read a lot about these surgeries and scared the heck out of me. I thought I was going to be in horrible pain, in bed, etc. I was also afraid of the same thing, not being able to breathe. Neither case was true! They had me up walking the second day, still with chest tube in and catheter! Moving afterward is the key. If your not very mobile now, get moving if possible. Use an inspirometer, lung exerciser. My pulmonologist told me to double what I was walking to exercise my lungs and heart.
But, for a different choice, my Aunt who was 77 at the time, had the SBRT for hers, which was in the lower lung. She said it was so easy! 5 days at 30 minutes a day, and done. She is now 82, and all of her CT and PET scans have been clear since. What my surgeon told me was that if you can have surgery to get it out, you should do it. The reason being, if another one comes up later, you may not be able to have surgery at that time because of lung function or heart condition. Hopefully this will help you.
Best wishes, Cindy

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Thanks Cindy. That is helpful to know.
I was told that the surgeons only removed whole lobe(s).
I’m glad that you are doing well.
It’s also good to hear that the SBRT works well too.
I’m going to have to choose soon.

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@mayocid1

I can understand wanting the Cancer out.
It does seem the best plan.
I’m just so afraid of the results/complications.
Even during the biopsy, even though I warned the doctors and nurses, still they managed to scratch my cornea and cut/bruise/blister my lip. Of course these things heal -just painful.
I have also had serious infections (the hospital kind) from surgeries. So many things to go wrong . My right hip has been replaced 5 times, infected, dislocated and hurts a lot daily.
I can’t imaging a lung “oopsie” that results with me not being able to walk and breath.

Jump to this post

Hi @mayocid1, Welcome to Mayo Connect! Getting this type of diagnosis is always such a shock, it's completely normal to need some help in processing the weight of the situation, and then they hit you with big decisions to be made! It is overwhelming.
Surgery and SBRT are both common options, and both can be effective. (SBRT Info: https://www.mayoclinic.org/tests-procedures/sbrt/pyc-20446794)
Personally, I haven't been presented with a decision like this yet. I'll likely face something similar in the future when my cancer returns, and I think I would certainly lean toward SBRT. I don't like the idea of sedation and recovering from a major surgery. I'm currently treated with a targeted therapy, and I'm now considered NED (no evidence of disease). I've seen the power of treatments other than surgery, so I'll be open to SBRT.
It sounds like you've had your share of surgeries, so you likely know what it's like to recover.
We all need to make our own decisions, and both sound like good options for you. How large is your primary tumor? When do you need to make a decision?

REPLY
@mayocid1

As I understand, I am at 1b.
Yes, my surgeon uses the robotic method also.
You are a still cut open, your ribs are pried apart, lobe removed. Lung may deflate, etc.
I am afraid of trying to recover and being able to breath after the surgery. I have heard of some that didn’t go well.
Did your doctors recommend the SBRT radiation instead of surgery?
I’m 70.
Nancy

Jump to this post

Hi Nancy- I just wanted to let you know that I am 3 1/2 weeks post op after my LUL segmentectomy and a lingular wedge for adenocarcinoma. My surgeon used the Robotic assisted method. It is easier and faster to recover from. I also read a lot about these surgeries and scared the heck out of me. I thought I was going to be in horrible pain, in bed, etc. I was also afraid of the same thing, not being able to breathe. Neither case was true! They had me up walking the second day, still with chest tube in and catheter! Moving afterward is the key. If your not very mobile now, get moving if possible. Use an inspirometer, lung exerciser. My pulmonologist told me to double what I was walking to exercise my lungs and heart.
But, for a different choice, my Aunt who was 77 at the time, had the SBRT for hers, which was in the lower lung. She said it was so easy! 5 days at 30 minutes a day, and done. She is now 82, and all of her CT and PET scans have been clear since. What my surgeon told me was that if you can have surgery to get it out, you should do it. The reason being, if another one comes up later, you may not be able to have surgery at that time because of lung function or heart condition. Hopefully this will help you.
Best wishes, Cindy

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My experience in having lower left lobe removed through VATS surgery at UCLA required three incisions, one in my back, under lower left breast and on the side, the largest being 2" where they pulled the lung out. All the best to you and as we all say, try to stay positive. Sounds like they found it early!

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@pixiedust

Hi Nancy...Good you're at 1b...wonderful, caught early! No my doctors did not recommend SBRT radiation instead of surgery..probably because I want the surgery. So they are trying to shrink it and if all goes well, I would prefer the surgery...I want it OUT of my body! But I will ask about it..

Sandy

Jump to this post

I can understand wanting the Cancer out.
It does seem the best plan.
I’m just so afraid of the results/complications.
Even during the biopsy, even though I warned the doctors and nurses, still they managed to scratch my cornea and cut/bruise/blister my lip. Of course these things heal -just painful.
I have also had serious infections (the hospital kind) from surgeries. So many things to go wrong . My right hip has been replaced 5 times, infected, dislocated and hurts a lot daily.
I can’t imaging a lung “oopsie” that results with me not being able to walk and breath.

REPLY
@mayocid1

As I understand, I am at 1b.
Yes, my surgeon uses the robotic method also.
You are a still cut open, your ribs are pried apart, lobe removed. Lung may deflate, etc.
I am afraid of trying to recover and being able to breath after the surgery. I have heard of some that didn’t go well.
Did your doctors recommend the SBRT radiation instead of surgery?
I’m 70.
Nancy

Jump to this post

Nancy, I’m 78. Robotic surgery went very well. I have a few small - 1 inch or so - incisions in my side and one slightly bigger where the chest tube was. I had a segment of my right lung removed - not an entire lobe - and my breathing is fine. I am coughing, which I think is not unusual, and my
ribs in front are tender, but I’m doing well. I walked 5 miles one day last week - 3 weeks after surgery. I had a small nodule, so oncologist and thoracic surgeon agreed surgery was the best course. I start chemo next week. My Stage is 1b, so I was lucky. My best wishes to you.

REPLY

Hi Nancy...Good you're at 1b...wonderful, caught early! No my doctors did not recommend SBRT radiation instead of surgery..probably because I want the surgery. So they are trying to shrink it and if all goes well, I would prefer the surgery...I want it OUT of my body! But I will ask about it..

Sandy

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