We need a surgeon willing to do a lobectomy.

Portal Forums Cancer Treatments / Symptom Management General Treatments / Symptom Mgmt. We need a surgeon willing to do a lobectomy.

This topic contains 17 replies, has 5 voices, and was last updated by Dr West Dr West 1 year, 6 months ago.

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May 14, 2016 at 6:47 pm  #1274046    

cessnaflyer

A recent CT scan found 35 ground glass opacity (GGO) nodules in all lobes of my wife’s lungs. Most of the nodules are tiny, around 3mm, but there was one in the right, lower lung that was 1.6 cm. They did a needle biopsy on that one and the result was: “Well differentiated adenocarcinoma, predominantly acinar and focally lepidic.” Next, they did a PET scan and the only nodule that lighted up was the one they did the biopsy on. None of the other nodules lighted up. So, my wife’s oncologist told her she was Stage One, instead of Stage Four which is what was suspected before the PET scan. My wife wants to have a lobectomy and her oncologist had to go before a review board of three surgeons to see if one of them would do it. I never heard of this kind of review committee before, but it appears most of the major cancer centers are now owned by universities and they have certain procedures to go through. Anyway, our oncologist told us the surgeons basically laughed at her. Two of the surgeons told her that with so many GGO’s they would not do a lobectomy. However, the third surgeon at the review said she would do a wedge resection. My wife’s oncologist now wants to try them again, and wants my wife to have another needle biopsy of one of the smaller nodules to prove that there are no other nodules with cancer, but I have two concerns. One is that the other nodules are so small I’m not sure they could even do a needle biopsy. My other concern is that it appears the ontologies only wants the other needle biopsy so she could make a stronger argument for doing the lobectomy, even though she tells us there is no chance the board will change their mind. So, I simple don’t know why we should put my wife through another needle biopsy. I have read in the past that others in this group with multiple GGO’s throughout their lungs have found surgeons to do a lobectomy. We live in the San Diego, California area, but are willing to go anywhere to have this done. If you could share any i

May 14, 2016 at 9:38 pm  #1274047    
JimC Forum Moderator
JimC Forum Moderator

Hi cessnaflyer,

Welcome to GRACE. I share your concern about the difficulty of a biopsy of such a small nodule, and I’m not sure that a negative result from one GGO will tell you much.

I think this is a good time to obtain a second opinion at another institution, since this is not a common set of circumstances.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

May 15, 2016 at 4:43 pm  #1274050    

cards7up

Jim, they’re not so much looking for another biopsy but a surgeon that will do surgery with so many GGO’s. I sent them here thinking maybe Dr. West could comment on the type and extent of the cancer and if it’s futile of doing surgery in this situation or not.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 16, 2016 at 7:25 pm  #1274062    

bob4beth

I agree that a second opinion would be a good idea. My wife had one of the top oncologists on this earth. If after you hear additional advice from Dr. West or Jim and want a referral contact me and I will provide you with additional information. I am also sure there are other excellent oncologists closer to home but a second opinion is certainly in order. Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

May 17, 2016 at 8:07 am  #1274069    

cards7up

Bob, he’s looking for a thoracic surgeon that might do the surgery under the circumstances listed. With that many GGO’s, my thought is that it’s really not feasible. This is why I would like a response from Dr. West.
Explaining the situation that his wife is in and the probability of surgery or not.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 17, 2016 at 6:06 pm  #1274078    

cards7up

Jim, can we get Dr. West to comment on this post. Concerned about the type and GGO’s involved. Could this be BAC? Even if not BAC, would surgery even be feasible? This is what they’re looking for.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 17, 2016 at 6:10 pm  #1274079    
JimC Forum Moderator
JimC Forum Moderator

Judy,

I have already sought his input here.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

May 17, 2016 at 6:45 pm  #1274081    

cards7up

Thanks Jim! Is Janine doing ok, haven’t seen her responding. Take care Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 17, 2016 at 8:27 pm  #1274082    
Dr West
Dr West

I’m sorry to say that this is NOT stage I lung cancer: it is multifocal BAC, a subject that has been a major focus of my interest for over a decade.

The many GGOs are part of the same process as the largest nodule, and it is very likely that the other lesions aren’t showing up on the PET scan only because they are smaller, not because they are a different process.

This is not to say that surgery or radiation would be absolutely ridiculous under any circumstance, but I would say that this would ONLY make sense if there is a period of follow-up in which that single nodule is growing but NONE of the other nodules are changing over at least 6 months, and I think it would make more sense to consider focusing on one nodule only if nothing else is growing over more like 9-12 months.

But in the more likely event that several of the other nodules are just a few steps behind and there are several nodules showing progression over 6-12 months, surgery to remove one lesion will provide absolutely NO benefit and will provide harm in two ways:

1) there is always some risk with a surgery — infection, bleeding, and other risks when someone undergoes general anesthesia

2) this line of thinking all too often leads to the compounded error of removing the lesion and surrounding lung tissue and then removing more as other lesions grow — then other lesions grow, and far too much desperately needed lung tissue has been taken out over multiple poorly advised surgeries over several years.

So while I think it is possible that surgery could make sense, I think it would be a horribly bad idea to do without knowing that only one lesion is growing over a convincingly long time.

You can always find a surgeon willing to do surgery, no matter how bad an idea it is, but it should be a red flag when surgeons are going against their financial incentives and saying it’s a bad idea. That shows restraint and fair judgment, not necessarily closed-mindedness.

Good luck.

-Dr. West

May 17, 2016 at 8:33 pm  #1274083    
Dr West
Dr West

Here, by the way, is a summary of the exact situation you are looking at:

http://cancergrace.org/lung/2013/01/20/mf-bac-algorithm/

This was not written for one case, but it is what I consider to be the best approach, and it is from a textbook on lung cancer in which I was asked to write the chapter on how to manage multifocal BAC. It is a general approach that other experts refer to as the clearest articulation of how this challenging situation should be managed.

-Dr. West

May 18, 2016 at 8:55 am  #1274087    

cessnaflyer

Thanks you, Dr. West. This is very helpful information. We learned yesterday that all of the other 34 GGO/nodules are too small to do a needle biopsy on. We have an appointment with a Dr. Jay Lee at UCLA to see about a Thoracoscopic segmentectomy. I discussed with my wife the possibility that a wait and see approach might be best, in which we monitor the nodules and do nothing at this point, but she is adamant that she wants the one that tested for cancer to be removed. So, I guess we will take it a step at a time and see if the next surgeon agrees.

May 18, 2016 at 9:08 am  #1274088    
Dr West
Dr West

OK. I suppose if she understands that she may well be shortening her survival in the process and a surgeon is inclined to do this despite it being widely considered medically inappropriate, there isn’t much point in discussing the reasons why so many people are arguing that it isn’t the best strategy.

-Dr. West

May 18, 2016 at 9:21 am  #1274089    

cessnaflyer

Hi Dr.l West. I discussed your recent post with my wife and she I believe she is starting to re-think her approach to surgery. The comment that really got her attention was “if she understands that she may well be shortening her survival in the process and a surgeon is inclined to do this despite it being widely considered medically inappropriate” Until now she was thinking that surgery would increase her chance of survival and so had many question about why surgery would shorten survival. I tried to answer her concerns, but really don’t exactly understand why surgery would shorten survival so if you could perhaps provide more details about that it would be greatly appreciates. Thanks again for all the information and help.

May 18, 2016 at 9:36 am  #1274090    
Dr West
Dr West

As I mentioned in my first, longer response, the concern is that at some point in the future, her lungs will be compromised by the growth of the nodules in the background, and she will need all of the good lung tissue she can possibly have. If a fair bit of that lung tissue has been removed from a prior surgery or two or three over time, she could have more shortness of breath and diminished lung capacity than she would have had if that good lung tissue had been left in by not pursuing a surgery that wasn’t going to cure the underlying process anyway.

The value of longer follow up is that you can confirm that one spot is growing much faster than anything in the background. This way, you can have more confidence of two things:

1) That one largest spot is emerging as a clinically significant problem and isn’t just going to grow at a glacial pace over many years, and

2) The other nodules won’t start growing significantly before you’ve recovered from the surgery, making the surgery clearly futile.

May 18, 2016 at 12:03 pm  #1274091    

cessnaflyer

Dr. West, in a way this all seems to make sense, but trying to keep current on what some of the terms mean is a challenge. For instance, the biospy report said the tumor was: “Well differentiated adenocarcinoma, predominantly acinar and focally lepidic.” It seems this means BAC, but then I see other terms and it is difficult to know which is which. So, the learning curve, as least for me, is slowwwwwwwww, but I have never been the brightest light in the room.

May 18, 2016 at 12:20 pm  #1274092    
Dr West
Dr West

I can reassure you that there is plenty to be confused about. “Bronchioloalveolar carcinoma” is a term that many clinicians use and still favor, even though pathologists who review the biopsies under the microscope have been told to use different terms. However, it’s still overwhelmingly likely based on your description that what is called “well differentiated adenocarcinoma, predominantly acinar and focally lepidic” is what I’d call BAC. However, sometimes the vast majority of the cancer is non-invasive and very slow-growing, but one area is behaving differently, invasive, and more aggressive. That’s a situation in which I’d ignore what’s in the background and treat it as if you are only dealing with lesion growing faster than everything else.

I refer to that concept as “getting out the lead runner”, to use a baseball analogy, but again, you really only know that from taking time to see what the cancer is doing before charging in.

-Dr. West

May 19, 2016 at 5:28 am  #1274093    

cards7up

Dr. West, what type of treatment would be recommended, if any? Thanks for your response as I had a feeling this was BAC and didn’t want them to make uninformed decisions and referred them to you since you’re the BAC specialist we all know. Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

May 19, 2016 at 6:08 am  #1274094    
Dr West
Dr West

Judy,

I would follow the algorithm I wrote in the link above. That describes the entire thought process in this kind of situation. So if there is multifocal progression at a clinically significant rate, check for mutations, and if not present, I’d favor chemotherapy +/- Avastin. My personal approach in someone with advanced lung adenocarcinoma (of which BAC is a subtype) is carbo/Alimta (pemetrexed) +/- Avastin. And of course, if there’s a driver mutation, use the targeted therapy of choice for that marker.

I hope that helps.

-Dr. West

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