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Hi I’m Qing, my mother is diagnosed with multi-focal lung cancer, non-smoker.


Qing

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Hi, I’m Qing, my mother is diagnosed with multi-focal adenocarcinoma. She’s a non smoker, 63 years old, and live with my step father who has Parkinson’s. Her mother died of lung cancer at age 70. I’m trying to help my mom to get the care she needs in this pandemic. 

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Hi, Quing, and welcome.

How/where was your mom diagnosed? Has she had a biopsy? Biomarker testing? PET-CT scan? Most/all of those are necessary before treatment decisions are made. You're fortunate to be in a large city, which means I imagine she has several good places to receive treatment.

Most medical centers are, I believe, up and running with cancer treatment and protocols to keep everyone safe. I'm treated at the University of Pennsylvania and they check by questioning and temperature for minimally invasive procedures (e.g., chemo infusion; scans), COVID testing for more invasive procedures (outpatient/inpatient surgery), and permitting only one designated support person to accompany the patient to visits (must be approved by doctor). I feel very safe going for treatments and doctor visits. We have others here from the Pacific NW who can probably give you a better idea about what's available there and how to stay safe.

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I saw from your post on the other thread that your mom is to have surgery. That's usually good news--they don't do surgery unless the cancer appears to be early stage. Is she having a lobectomy? If so, is it going to be VATS (video-assisted, laparoscopic)? That's actually a pretty simple surgery, as scary as it sounds. I was out with friends a couple weeks after surgery and back at work in another week. "Open surgery," or thoracotomy, is a bit more involved and takes a bit longer to recover from. But VATS, or its cousin, robotic surgery, are both pretty simple. My C-section hurt more and for longer than my VATS lobectomy!

One of our members, LouT, created a list of "tips and tricks" for surgery that's pretty useful: 

 

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Qing,

Welcome to the forum.  You'll find a lot of support and answers to questions here from members (like Lexie) who have experiences all parts of this disease and its treatment.  Please feel free to ask any questions you may have and also take a look at our Caregivers Resource Center that can be found here.

It's also helpful if you can tell us more about your Mother's diagnosis and tests that she may have gone through.  Lexie has asked a good set of questions that can help folks better understand how to be of support to you.

Lou  

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  • 3 months later...

Hi LexieCat, thank you so much for your reply. I’m sorry I just saw. I was trying to be strong and talked with a lot of hospitals in US. A lot happened in the last few months. The difficulty is the doctors differ in their opinion. A pulmonologist in Mount Sinai NYC said mom need to have fine needle biopsy. But a thoracic surgeon (who said comparing CT scans it’s multi focal lung cancer) in MGH Boston told us biopsy will be too risky due to possibility of lung clapse and incorrect sample. The surgeon advised for VATS She has total 8 nodules in both right and left lungs. The VATs will do a upper right lung lobectomy to remove 3-4 nodules. but we were lost because what about the rest of the nodules? I heard the lobectomy affects lung function and my mom is concerned if surgery is the best option? What about immunotherapy? I’ve never heard of multi-focal lung cancer before, does anyone know what it would be like in the future? My grandma died of lung cancer in China at age 70, it was very late stage when it was discovered, transfered to the bone and brain. We didn’t even know what type of lung cancer she had... she was just relying on pain killers in the end.

 

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It seems strange that they would recommend surgery if she has cancer in both lungs. Not all nodules, though, are cancerous. I have other nodules that have been just sitting there for a few years with no change. 

Has she had a PET-CT scan? That should provide a clue as to which nodules are cancerous. I'm just wondering whether it's only the nodules in the upper right lobe that are suspicious.

The lobectomy itself might have little effect on her lung function--I noticed very little change after mine and my oxygen levels are consistently 98-100 percent. I'm just thinking there must be an explanation for why they would do surgery if it appears she has cancer in both lungs.

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I agree with Lexi...surgery after spread is not usually the first line treatment.

I would try to get another opinion and, in this case, push for a biopsy. Tho VATS is relatively easy and safe, but there is no question it has a dramatic effect on your breathing capacity.  In your circumstance I think I would value that more than removing some nodules.

However, if the surgery can get all of the known cancer present I would change my mind and advocate for surgery. The chance of sustained NED with surgery would be worth the loss of breathing capacity.

Obviously this is just one man's opinion. Regardless of which way you go, I'm rooting for you.

Peace 

Tom

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I'm not disagreeing with Tom about his experience, but many people, including myself, don't have a dramatic change in breathing capacity. There should be testing of pulmonary function before any surgery to be sure it can be tolerated.

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Hey Qing...just another cancer survivor throwing my opinion in. If you seek many opinions you will get many answers and it makes it hard to decide which is the best route to take. But whatever decision you make has to be based on the best diagnosis you can obtain. So far that makes sense...the greatest good with the least amount of harm so to speak. So, as LexieCat states it is so important to know where you stand. And if it comes down to a VATS lobectomy that is something I know well; I'm still recovering from the removal of my RLL ON 2/25. I am in agreement with everyone here in that it's really not that bad, anywhere from a 2 or so to 3 hours surgery, 2 to 4 days in the hospital, and 6 to 8 weeks to near fully recovered (of course full recovery may take a bit longer). As to breathing capacity I do notice that I have less, but the trade off is a cancerous mass completely removed from my body. I think most folks would take that trade off anyday...

So stay in touch and let us known how it's going...we'll be here with support and the benefit of our experiences...

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I have pretty good pulmonary function that I expect to get better over time.....tho I definitely feel the difference between now and pre surgery. I'm no where near requiring O2 or not being able to function as before. But....God didn't give us 5 lungs for no reason.

Trust me tho....I am SOOOO happy I had surgery.

Peace

Tom

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On 4/9/2021 at 1:38 PM, LexieCat said:

It seems strange that they would recommend surgery if she has cancer in both lungs. Not all nodules, though, are cancerous. I have other nodules that have been just sitting there for a few years with no change. 

Has she had a PET-CT scan? That should provide a clue as to which nodules are cancerous. I'm just wondering whether it's only the nodules in the upper right lobe that are suspicious.

The lobectomy itself might have little effect on her lung function--I noticed very little change after mine and my oxygen levels are consistently 98-100 percent. I'm just thinking there must be an explanation for why they would do surgery if it appears she has cancer in both lungs.

Yes,  I'm trying to understand if surgery is best option for mom. The radiologist says 5 nodules in her right upper lung, 3 of them are subsolid and increased in size from 2018 to 2020 (representing invasive adenocarcinoma), with the largest one measures around 2 cm (likely cystic adenocarcinoma, size doubled in two years).

Additional 1 subsolid nodule in her lower right lung, 1 ground glass nodule in upper left lung, 1 ground glass nodule in lower left lung. These sizes didn't change much from 2018 to 2020. 

She hasn't done a PET-CT yet, I asked the pulmonoligst in Mt Sinai but he says PET-CT only accurate for nodules larger than 8mm and strongly recommends biopsy,  which is confusing for us. We asked the pulmonoligst in Mayo why VATS is recommended, he said with surgery they can do genetic testing on the nodules from her right upper lung removal. Then match with possible targeted medicine.

sorry it's so many situations here, I'm just confused which way to go, it's tough.. like you said, my mom worry if the remaining nodules grow after VATS, then does she need to have part of her left lung removed.

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On 4/9/2021 at 6:53 PM, Jesse L. said:

Hey Qing...just another cancer survivor throwing my opinion in. If you seek many opinions you will get many answers and it makes it hard to decide which is the best route to take. But whatever decision you make has to be based on the best diagnosis you can obtain. So far that makes sense...the greatest good with the least amount of harm so to speak. So, as LexieCat states it is so important to know where you stand. And if it comes down to a VATS lobectomy that is something I know well; I'm still recovering from the removal of my RLL ON 2/25. I am in agreement with everyone here in that it's really not that bad, anywhere from a 2 or so to 3 hours surgery, 2 to 4 days in the hospital, and 6 to 8 weeks to near fully recovered (of course full recovery may take a bit longer). As to breathing capacity I do notice that I have less, but the trade off is a cancerous mass completely removed from my body. I think most folks would take that trade off anyday...

So stay in touch and let us known how it's going...we'll be here with support and the benefit of our experiences...

Thank you for sharing your experience. Hope you recover soon from the surgery on 2/25. May I ask if genetic mutation test is done after VATS, and does doctor go through their findings from the test with the patient? Does doctor go through their plans with patient on testings and potential medicines to treat the remaining nodules...In my mom's case she has total 8 nodules in both lungs. 

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On 4/9/2021 at 5:08 PM, BridgetO said:

I had a lower right lobectomy over 4 years ago and my lung capacity seems fine!

Thank you for sharing the good recovery!

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On 4/9/2021 at 2:44 PM, TJM said:

I agree with Lexi...surgery after spread is not usually the first line treatment.

I would try to get another opinion and, in this case, push for a biopsy. Tho VATS is relatively easy and safe, but there is no question it has a dramatic effect on your breathing capacity.  In your circumstance I think I would value that more than removing some nodules.

However, if the surgery can get all of the known cancer present I would change my mind and advocate for surgery. The chance of sustained NED with surgery would be worth the loss of breathing capacity.

Obviously this is just one man's opinion. Regardless of which way you go, I'm rooting for you.

Peace 

Tom

Thank you Tom, sorry what is NED referring to? 

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NED stands for "no evidence of disease"--what we all hope to achieve. Because lung cancer is so prone to recurrence, they don't like to use the term "cured." NED is as close as most of us ever get, and it's a good thing. It CAN come back after a period of time NED, but the longer you're there, the less likely a recurrence.

It sounds like the one doctor thinks the best way to get a good sample for biopsy is to do the lobectomy. And the lobectomy they want to do is on the one lobe where it's pretty certain she has cancer. 

And yes, they should go over with her the results of any tests and the effects of any treatment plan before they begin. Ideally, someone would be with her to help ask the right questions.

No course of action, when dealing with lung cancer, is entirely without risk. Testing (e.g., biopsy) can be risky, as noted. Even traditional chemo treatments can be risky or not result in a good outcome. It sounds like the doctor recommending VATS is thinking maybe the other nodules aren't cancer at all. I've got a number of nodules other than the ones that turned out to be cancer, that haven't changed since I was first diagnosed almost four years ago. Post-surgery adjuvant treatment--of any kind--should knock out any other cancer cells in those other nodules.

 

 

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Quing,

I am sorry I am late to respond to your post. Lots of folks have already weighed-in with their comments. Here is my view.

Surgery as a curative measure is normally not performed with multi-focal (tumors in more than one locale) disease. People with multi-focal tumors are staged at IV. With two lungs displaying possible metastatic tumors, your mom would like stage at IV. Here is more information about lung cancer staging.

The only way lung cancer can be definitively diagnosed is through a biopsy. And from what I've read, your mom's physicians have concerns about performing a needle biopsy. If your surgeon believes the easiest and least invasive way to obtain tissue for a biopsy is to perform a lobectomy, then understand the surgery may not be curative. But before curative methods (chemotherapy, targeted therapy and or immunotherapy) can be used as treatment, a biopsy is essential. 

Lung cancer is normally typed by a pathologist using histologic methods. Today, however, with the emergence of targeted therapy and immunotherapy, follow-on laboratory testing to identify biomarkers is normally performed. After a tissue sample is received, the pathology results should follow pretty quickly. The laboratory analysis however could take a couple of weeks to generate results. So a biopsy must be secured before a treatment plan can be designed.

On lung function, while losing a lobe is a limitation on lung function, it is not a limiting factor for resuming many, if not all, pre-surgical activities. Seventeen years ago, I had an entire lung removed and have about 33% of total lung function. I can't run but I am very active and have enjoyed many long vacations when my treatments were over.

I can't think of a reason the biopsy-ordering physician wouldn't personally explain the biopsy results to the patient. Ensure your mom engages a medical oncologist and a radiation oncologist. These disciplines will likely be the doctors who prescribe and treat your mother.

I understand how complicated this is. One needs to quickly master a new vocabulary and time is of the essence. But that is why we are here, to help you learn and understand. Here is something to help with the vocabulary.

Stay the course.

Tom

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I can't much improve on what Tom Galli gave you in his post...he pretty much got it all. Know that with exceptions of course, there is a plan of action for any diagnosis of cancer. The big steps and progression cannot be ignored, changed, or rearranged...discovery, verification (size, scope, severity, possible mutations), decision phase of treatment plan (tumor board decision between varied disciplines; radiation, chemotherapy, targeted therapy, immunotherapy), exercising the approved treatment plan, and finally testing to determine if the treatment plan worked as it should.  And if the results are not what was intended, further planning will ultimately lead to the initiation of plan B.

No matter how much any one of us want things to be different that's the way it is. For us as patients, we have but to learn as much as we can so we can be informed advocates for our best care. Believe me, most medical professionals want you to be as informed and learned as possible. It is then just that much easier for them to explain a chosen treatment plan prior to implementation. 

In my amateur but very involved opinion, the above is just the way it is...other than that we just have to keep the faith and shoot for NED. Stay in the game...our lives depend on it!

 

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22 hours ago, LexieCat said:

NED stands for "no evidence of disease"--what we all hope to achieve. Because lung cancer is so prone to recurrence, they don't like to use the term "cured." NED is as close as most of us ever get, and it's a good thing. It CAN come back after a period of time NED, but the longer you're there, the less likely a recurrence.

It sounds like the one doctor thinks the best way to get a good sample for biopsy is to do the lobectomy. And the lobectomy they want to do is on the one lobe where it's pretty certain she has cancer. 

And yes, they should go over with her the results of any tests and the effects of any treatment plan before they begin. Ideally, someone would be with her to help ask the right questions.

No course of action, when dealing with lung cancer, is entirely without risk. Testing (e.g., biopsy) can be risky, as noted. Even traditional chemo treatments can be risky or not result in a good outcome. It sounds like the doctor recommending VATS is thinking maybe the other nodules aren't cancer at all. I've got a number of nodules other than the ones that turned out to be cancer, that haven't changed since I was first diagnosed almost four years ago. Post-surgery adjuvant treatment--of any kind--should knock out any other cancer cells in those other nodules.

 

 

Oh, now I see the meaning of NED, LexieCat. I wish all lung cancer patients will be NED! Yes, the Mt Sinai Dr says biopsy, then go from there to determine medicine or surgery. I'm still wondering why Mayo recommended VATS surgery, by-passing the biopsy step. My mom and I have a video surgery consultation coming up next week with a thoracic surgeon Mayo, maybe worth to ask her reasons why biopsy is not needed before surgery? 

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Sure--tell her what the other doctor is recommending and ask for her comments.

One thing to understand is that even though oncology and medicine in general are scientific, there is also an "art" to them. The best doctors make their recommendations based on the science, as well as their own experience and reasoning. Probably either course of action MIGHT be appropriate for some patients. Ultimately we have to decide what we are more comfortable/confident about. There are never any guarantees that one treatment path will be better than another. 

So yes, ask lots of questions and try to get at her reasoning. My impression, from what you said previously, was not that biopsy was "not needed," but rather that it posed too much risk. 

It isn't a terrible thing to have surgery without a biopsy. My lobectomy was done without a biopsy. And even though they examined a piece of the tumor before removing the whole lobe, they still were unable to confirm it was cancer. But after the lobe was removed, the pathology showed it was cancer. That's an example of my surgeon performing his art--he was suspicious enough about the nodule to remove the lobe even without confirming it was cancer. And he was right.

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20 hours ago, Tom Galli said:

Quing,

I am sorry I am late to respond to your post. Lots of folks have already weighed-in with their comments. Here is my view.

Surgery as a curative measure is normally not performed with multi-focal (tumors in more than one locale) disease. People with multi-focal tumors are staged at IV. With two lungs displaying possible metastatic tumors, your mom would like stage at IV. Here is more information about lung cancer staging.

The only way lung cancer can be definitively diagnosed is through a biopsy. And from what I've read, your mom's physicians have concerns about performing a needle biopsy. If your surgeon believes the easiest and least invasive way to obtain tissue for a biopsy is to perform a lobectomy, then understand the surgery may not be curative. But before curative methods (chemotherapy, targeted therapy and or immunotherapy) can be used as treatment, a biopsy is essential. 

Lung cancer is normally typed by a pathologist using histologic methods. Today, however, with the emergence of targeted therapy and immunotherapy, follow-on laboratory testing to identify biomarkers is normally performed. After a tissue sample is received, the pathology results should follow pretty quickly. The laboratory analysis however could take a couple of weeks to generate results. So a biopsy must be secured before a treatment plan can be designed.

On lung function, while losing a lobe is a limitation on lung function, it is not a limiting factor for resuming many, if not all, pre-surgical activities. Seventeen years ago, I had an entire lung removed and have about 33% of total lung function. I can't run but I am very active and have enjoyed many long vacations when my treatments were over.

I can't think of a reason the biopsy-ordering physician wouldn't personally explain the biopsy results to the patient. Ensure your mom engages a medical oncologist and a radiation oncologist. These disciplines will likely be the doctors who prescribe and treat your mother.

I understand how complicated this is. One needs to quickly master a new vocabulary and time is of the essence. But that is why we are here, to help you learn and understand. Here is something to help with the vocabulary.

Stay the course.

Tom

This makes a lot of sense Tom, I begin to see the pros and cons of surgery better for multi-focal lung cancer. I do agree, maybe the Mayo Dr thinks surgery is easiest way to remove a few tissue samples in my mom's right upper lung and test them. I did worry if biopsy will get the correct sample (because she has total 8 nodules in both lungs, most suspicious ones in right upper lung). The Dr from Mt Sinai was from a written second opinion we gotusing BestDoc, we were asked to limit our questions, hence it wasn't clear the pros and cons pf biopsy.  And Thank You for the link to vocabulary too! Let me read and catch up on it for mom.

 

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16 minutes ago, LexieCat said:

Sure--tell her what the other doctor is recommending and ask for her comments.

One thing to understand is that even though oncology and medicine in general are scientific, there is also an "art" to them. The best doctors make their recommendations based on the science, as well as their own experience and reasoning. Probably either course of action MIGHT be appropriate for some patients. Ultimately we have to decide what we are more comfortable/confident about. There are never any guarantees that one treatment path will be better than another. 

So yes, ask lots of questions and try to get at her reasoning. My impression, from what you said previously, was not that biopsy was "not needed," but rather that it posed too much risk. 

It isn't a terrible thing to have surgery without a biopsy. My lobectomy was done without a biopsy. And even though they examined a piece of the tumor before removing the whole lobe, they still were unable to confirm it was cancer. But after the lobe was removed, the pathology showed it was cancer. That's an example of my surgeon performing his art--he was suspicious enough about the nodule to remove the lobe even without confirming it was cancer. And he was right.

Oh wow,  I see, so the Dr also skipped biopsy and onto lobectomy for your case. Indeed I start to see this is also an art from the Dr and medical team. I'll make sure for ask the Mayo surgeon questions including biopsy and share with her the biopsy suggestion from the Mt Sinai Dr. Yes, I have an impression Mayo Dr thinks biopsy is not as needed (for risk and wrong sample concerns), it's just an guess, I'll confirm with them..

Love this wonderful site, so many kind people here, a friend who has kidney cancer encouraged me to join a site like this. I'm so glad I did.

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In my case, the nodule was too small to biopsy (just under 1 cm). My pulmonologist and the surgeon both agreed that the CT scan was suspicious enough that even if a biopsy were negative, they would want to remove the nodule to be on the safe side. And a lobectomy is the safest for very early lung cancer, because you have the best shot at getting it all. 

In your mom's case, as Tom said, if the other nodules in the other lobes really are cancer, then the surgery in itself isn't likely to cure her, so there would be no point in doing it for that reason. But if the other reason makes sense (to obtain a good sample for testing), then it very well might be worth it, so she can get the treatment that's best matched to the specific kind of cancer. 

Good luck and be sure to keep us posted.

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Lexie and anyone else, if you have a single 6 mm nodule that is accessible and you are otherwise stable, does it make sense to ask about removing it? Or would 6 mm be too small? I do intend to ask my oncologist in the next couple of weeks when we go over my next scan. Thanks. 

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I wouldn't, personally. My nodule was suspicious because (a) it had grown in size since the previous scan a year earlier and (b) had acquired a spiculated appearance, typical of cancer. I have several stable nodules throughout my lungs that haven't changed in all this time. Since the majority of nodules are NOT cancers, I wouldn't assume a 6 mm one that has been stable is worth having surgery over. Not even sure a surgeon would do that without some evidence it was cancerous.

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