Lung thing questions...need info from you all

[mymom]

So although we were told by oncologist at Sloane Kettering she doesn't think its cancer and they didn't light up, I am the type that likes to plan for the what if. I want to know what the options are. I want to be armed with questions and knowledge of when next scan we are told ...guess what it's mets. So I would rather be prepared.

We have only dealt with a few liver spots here and there and never anywhere else so lung is new territory for us/me. It would also mean we are no longer going for a cure but it is what it is. So please don't think I am being negative...just prepared

Questions

1. What removal options are there? I hear vats, sbrt, ablation, some laser thing in Germany, etc. what types of things are out there?
2. In what scenarios would these removal options be used?
3. I see several people being treated by Mskcc have gone elsewhere for lung mets, why? What couldn't mskcc do?
4. Any other info

Thank you!
Lisa

[KWT]

I'm afraid to mess with them anymore. I took em out they came right back.

[mymom]

Kenny that sucks. It's a mix bag. Some people have them removed never to see them again and some they keep coming back. I couldn't imagine. I have the highest respect for you all.

[Mastan]

Questions

1. What removal options are there? I hear vats, sbrt, ablation, some laser thing in Germany, etc. what types of things are out there?
2. In what scenarios would these removal options be used?
3. I see several people being treated by Mskcc have gone elsewhere for lung mets, why? What couldn't mskcc do?
4. Any other info

1. Yeah those are the typical options
2. This is a loaded question. It cuts across several sub specialties, surgical, radiation oncology, and interventional radiology. The answer may well depend upon whom you ask. I would ask all specialists before making any decision. Having gone to Germany I can speak to that. Laser resection is done typically because large numbers of tumors can be removed at one time. Regarding SBRT, I view this as a last resort when none of the other options are possible. This is because of collateral damage to surrounding tissue they may preclude the use of any of the other aforementioned options.
3. You'll have to wait to hear from one of the folks you refer to.

[ams5796]

Hi Lisa,

There's lots of lung met information on here. As you know, there's stuff that shows up on scans that turn out to be things other than cancer especially in folks' lungs.

I've had three lung mets removed three different times. The starting showing themselves three years after my rectal cancer diagnosis.The first time my local oncologist wanted to take the "wait and see" approach. Since I wasn't happy with that idea I ended up with a second opinion at MSK with Dr. Kemeny who put me on Xeloda for seven months while we waited to see what these mets would do. Finally, she decided to take one out using VATS to see if it was cancer. Turns out that particular nodule was a lung met from rectal cancer, but the pathology showed that I had an infection in my lungs which explained that many of the spots in my lungs were not cancer. It was great news. And, the VATS was an extremely easy situation. No follow up chemo was prescribed for me. For the second one I ended up back at my local oncologist and had another easy VATS done there. The only reason I went back there is because I love my local oncologist and had confidence that they would do right by me with VATS surgery. Again, after the second one I had no follow up chemo. Another year passed and then another nodule was discovered on a scan. This one not in an easy location for VATS so my surgeon suggested SBRT. I agree with Mastan that SBRT should be considered a last resort when surgery cannot be done. For one thinh, there will be no chance to have a pathology to see exactly what that lung nodule is. I had SBRT one year ago and my oncologist still cannot see "that area" on a scan due to the large amount of scarring in my lung. I have shortness of breath now and a wheeze from the radiation. I wish I had pushed a bit for VATS there.

Anyway, I hope that answered some of your questions.

Ann

[juliej]

Lisa, you know what they say about real estate: "It's all about location, location, location"? Well, the same thing is true when it comes to lung mets. Whether they are removed via VATS, full thoracotomy, lobectomy, sbrt, rfa, etc. depends on where they are located. If they are close to the surface and in a good location they can be removed with a simple VATS procedure. But if they are deeper in the lungs or in a tricky location, other options are considered.

I had double-lung surgery at MSK for two lung mets, both with VATS. Less than a year later I had a second lung surgery for a suspected new met. It turned out to be a benign granuloma. My surgeon was so happy to tell me the news! Since your mom's nodules don't light up on a PET scan, don't give up hope that they are benign. Lungs get all kinds of crap in them and bumps and nodules can be meaningless. Keep an eye on her CEA if that's a good marker for her. If it starts going up and the nodules start growing, then it's probably best to get a lung surgeon involved.

[mymom]

Its an odd thing about her CEA. Kemeny never ever mentions it. We do know that here CEA was totally normal because that is one of the first tests they did on her and it was within normal range and she was stage 4 right off the bat. Maybe because there was only one small spot that is why. Who knows. I thought though if the spots are small that is why they would not light up. All I know is they are on the upper lobe. As I said, she has had many. We know those are benign because those were there before she was diagnosed with cancer. Her regular general practitioner always loved his CT scans and had given her several because of past boughts of pneumonia and bronchitis. I still think to this day those multiple ct scans I used to holler about contributed to her stage 1 breast cancer. who knows. I remember your story juliej about the benign nodule. Did it light up on a pet scan? what made her think it was cancer?

[mymom]

One other thing I noticed which was interesting. In the 9/3/2014 ct scan it said nodules unchanged most likely benign. Then it said subpleural fibrotic changes in the left upper lobe again noted (which I never saw any previous notes on previous scans). Then in the 11/25/2014 it said nodules still unchanged probably inflammatory. nothing suspicious. Then in the 1/26/2015 ct scan that's where it notes the two new nodule, surrounding groundglass appearance on one, yadda yadda but both in upper left lobe. I find it funny that in September they made that note of the subpleural fibrotic changes in the upper left lobe. Maybe a coincidence. Who knows.

[mymom]

Her highest CEA EVER was 3.3 this past December, it is now 2.1. It was 1.2 at diagnosis. Her CEA is definitely not a good indicator.

[Mastan]

Her highest CEA EVER was 3.3 this past December, it is now 2.1. It was 1.2 at diagnosis. Her CEA is definitely not a good indicator.

I would not necessarily come to that conclusion on the basis of three data points. Your Mom should have had many measurments since diagnosis. I would suggest plotting all of the available data over time. The present CEA is now lower than it was before she started FOLFIRI. This is likely a consequence of the the chemo effectivity. Also, I would imagine the Onc has told you that it is the trend in the CEA that matters more than the magnitude. You should be looking in particular for the trend in the absence of chemo. If it is truly a statistical flat line during that time period then I would conclude the CEA is not telling.

[mymom]

Hi Mastan. Great info. I looked and she had about two 1 year NED stretches and during that time it would go between 1.7 and 2.5. She was off chemo. Back and forth. During the time it was creeping up in finding the liver spots it still remained in that range. Maybe I have to get technical and really plot it on a graph (and now I can actually use what we all said to our teachers in math....when am I going to use this? LOL. Math was not my strong point). I think excel does this. but CEA really seems constant. THIS ALL SAID her highest ever was 3.3 12/3/2014 and I am wondering if they are small lung things. Too small to register on Pet as uptake but everytime she had one or two spot on liver the CEA never hit over 2.3...not even close to 3. So wonder if there is something on lungs since CEA was 3.3 12/4/2014 and scans were somewhat catching it along with the liver spot that disappeared recently. She is now 2.1 but is on chemo. just thinking through out loud. All I can do is wait until next scan.

[Mastan]

Yes plotting the data in Excel is fairly easy and will help visual the trends. Based on the data you have mentioned , it does not seem that the CEA is very responsive. That could be a result of low cancer cell volume or low production of CEA by the cancer cells. But It wont hurt to track the values because it provides more info to consider along with the imaging studies.

Best of healing to your Mom,

Mark

[juliej]

I remember your story juliej about the benign nodule. Did it light up on a pet scan? what made her think it was cancer?

I didn't have a pet, but the CT showed it was growing and that's what concerned them. My CEA was still in the normal range, but she said it might be lagging behind. She and the surgeon agreed it was best to just remove it. One thing about having a benign granuloma, when you wake up from surgery you are in a glassed-in isolation unit! Because they don't know what caused the granuloma, they have to assume you're infectious until they run tests on it. I guess it can be from TB, although it's much more common to be from some minor infection. Oh, and it's the fastest (and cheapest) way to get a private room at MSK! But it's weird that everyone has to suit up to come in and see you - even to bring you meals. That part is kind of creepy.

Mark is right about plotting CEA results. For patients who were in the low range from the beginning, it's the percentage of change that is important. Put hers on a chart when you have time (MSK's lab results are online - Excel works great for plotting). Then note the dates of her liver recurrences and see if it rose slightly before each one of those. Also, you might track her LDH levels too. Are they going up?

Those "subpleural fibrotic changes" could have been caused by an infection too, but it is odd they are in the same area as the new nodules. Still could be inflammation though. I agree with your suspicions about her GP and his love of CT scans! Jeesh, it's radiation for god's sake!

[mymom]

Never heard of LDH. Looks as if always high (in the 200s) from diagnosis to current but within range except once when it was 273. In fact at times it was higher during NED bouts than active cancer bouts. I need to find time and sit and just plug in everything. I have all the numbers. I just need to refresh my brain with excel.