Lung met

[saltygirl]

Hello,
My cancer friend had 1 liver met 4 years ago. did chemo 12 cycles. I believe folfox and folfiri. She had her met surgically removed. Her oncologist put her on maintenance chemo for 4 years. Last week she had a 0.6 cm lung met removed surgically. She lives in Greece. The local medical team tells her it's the end of the road. I believe I have seen many patients in the US who had a lung met / mets surgically removed. And are NED. Anybody has had similar situation? What is the treatment protocol in the US? More chemo now? Thank you❤️

[Bianca10]

Hello,
My cancer friend had 1 liver met 4 years ago. did chemo 12 cycles. I believe folfox and folfiri. She had her met surgically removed. Her oncologist put her on maintenance chemo for 4 years. Last week she had a 0.6 cm lung met removed surgically. She lives in Greece. The local medical team tells her it's the end of the road. I believe I have seen many patients in the US who had a lung met / mets surgically removed. And are NED. Anybody has had similar situation? What is the treatment protocol in the US? More chemo now? Thank you❤️

Hey saltygirl

I think we’ll need more information if possible because this doesn’t sound quite right, to me at least.
You mention she just had a small met removed, but the team are saying it’s the end of the road? If she’s had another recurrence since the surgery they would go through the chemo lines and sounds like she probably still has two of those available to her (lonsurf/avastin + fruq)
Personally before moving to these lines I’d like at trials if it’s appropriate but also revisit previous folfox/folfiri.

[roadrunner]

What does “end of the road” mean?

[utahgal7]

saltygirl,

You or your friend may want to search this forum for one of the members (Rob in PA) for inspiration and hope. Based on his signature and posts, he has undergone chemo, SBRT along with VATS procedure(s) for lung nodules. If I remember correctly, I think he has been NED for almost 10 years. Maybe he can chime in here and correct me if I am wrong.

Also, I am NOT trying to bash the Greek healthcare system, but is there anyway your friend can travel to another country for consultation and/or treatment?


Paige

[saltygirl]

Thank you all. Will pass it to her. She was told that she is going to die now. She has a young daughter. Totally devastated. I appreciate all your input.

[roadrunner]

Alright, I understand now. This is very unfortunate. It certainly sounds as though her doctors are operating with very outdated ideas and models. There are many, many people on this forum who are long-term survivors of pulmonary metastases. The fact that your friend also had a liver met complicates things, certainly, but is not considered a death sentence in most advanced countries now.

The simplest thing to do is to look up the concept of “oligometastasis.” You friend seems to fit into this category, and reading on the concept would quite possibly be helpful.

One word of warning. I know little about Greece’s health system, but if it’s nationalized (I suspect it is), you should be careful not to sow false hope. Nationalized health care has benefits, but also major limitations. If your friend doesn’t have the financial resources to pursue modern treatment strategies, it can be discouraging to hear about them. Please be careful in that regard.

[zephyr]

I've had lung mets surgically removed three times. The first two were in Germany because met locations/number made it impossible in the U.S., but the third surgery was here. I've also had multiple rounds of Folfox, Folfiri, plain 5FU, and Xeloda before, after, and between those surgeries, plus a 5-session round of SBRT. All of this over an almost 8-year period. I also had one liver met last year that was treated with ablation, and then a recurrence in my lungs a few months later, followed by chemo. Maybe what the medical team meant but didn't express properly was that if it has now spread to her lungs, that one liver met was not an isolated rogue group of cells and the cancer is more systemic than they thought. Or maybe they were uncertain how well she would respond to more chemo and voiced it with a heavy dose of speculative gloom and doom. Without knowing all the details all I can say is that in my experience, chemo still seems like a possibility. It was for me and I've been on a lot of chemo. Depending on the location of the met, SBRT might be a possibility. Surgery too but sometimes you have to really fight for surgery after a recurrence. Then, as someone else mentioned, perhaps she could find a trial. Maybe she won't get to NED anytime soon, maybe not ever, but that doesn't mean all is lost. Here's a piece of potentially good news: my team told me that the lungs put up a stronger immunological response than the liver. My interpretation of that is that if you have a met that can't or won't be surgically removed, having it in the lung might be preferable because the lungs fight harder.

First things first: are they even certain it's a met and not a benign growth? Has she had a biopsy or a PET scan to check for metabolic activity? Needle biopsies are iffy, better for ruling things in than ruling them out, and with some risk. A PET would tell you if the growth was active. If I had a choice, I'd fight for the PET but that's just me.

I'm not a doctor or healthcare anything, just another patient. I'm not bashing her healthcare providers, just offering views based on my experience but without enough information to know if any of it will apply to your friend. All that being said, I agree with Roadrunner's advice to be careful not to give her false hope by telling her about treatments she can't access.

[rp1954]

Sounds like something might be missing in communication - what did they see that they think that is so pessimistic - just the 0.6 cm met and its pathology alone or as a (biopsy) representative of multiple/multitudinous thingies on a CT?

A big reason that I started digging out blood panel stats and interpretations was to overcome doctor limitations in diagnosis, biology, prognoses, thoroughness, and communications. So by combining panels we got a more complete idea what was / wasn't going on. Even in backwards locales, the basic blood tests would be like CBC, CEA, ESR, ALP, LDH, hsCRP, CA199 ... (increasing cost/lab equipment)

Even if she had multitudinous lung mets, over 100, Germany is a short flight away if she can pay them relatively modest amounts. Also maintenance chemo can be very cheap and convenient - I know that at least some Greek doctors had UFT available ~40 years ago, which is (can be) even cheaper than generic Xeloda and several multiples less to literally swallow. (Oral 5FU is even cheaper but rougher stomach wise without vitamins and glutamine/cabbage juice) My wife's UFT-LV chemo was $5 a day with asian prices back then (2010-2018), some state in India might be less. The most important item is to avoid spread and too much growth if she needs time for money or arrangements for more surgery.

[saltygirl]

Thank you so much for sharing all your experience and recommendations. We actually met in person last summer in Athens. Both stage 4 survivors. I agree with a socialized health care. We have it in my country. My mom at 75 years old wasn't diagnosed with stage 4 lung cancer until I took her to an urgent care. Her primary physician didn't even send her for an X-ray. He knew she had breast cancer 25 years ago. Again she was lucky to be with me in the US. Got biopsy and diagnosed. Back home was told there is nothing there. The radiologist didn't see the 2 cm tumor. But I think my friend can explore health care in other countries if it's reasonable. Thank you again!

[saltygirl]

As my understanding with her lung surgery. The 0.6 cm met was completely removed. She is NED again. Not sure why her medical team is so pessimistic. Thank you all again!0

[saltygirl]

Update: My friend has had I have ground glass opacities on her CT scan. Few of these areas. Her oncologist kept saying it's "nothing". It has been there since her diagnoses 4 years ago when she had the solitary liver met. During her lung surgery when the solitary 0.6 cm was removed the ground glass opacity tested positive for cancer. What does it mean? Is that another met?

[roadrunner]

You haven’t provided enough information. A “ground glass opacity” or “GGO” is a radiological finding—basically just a semi-transparent area in the lung through which structures can be visualized. It is commonly malignant in lung cancer. I’m not familiar with CRC metastases presenting as GGOs, but I think it would be uncommon. However, cancer can manifest in many different ways, and two different cancers can be present at the same time. If your friend has the pathology here, these questions are for her team. It would likely be relevant how many nodules/areas evincing GGO there are, how big they are, how many were biopsied, where they are, etc. Was the area of GGO resected? What was the specific pathological finding? You say it “tested positive for cancer” but that’s too vague to be of much use.) If you can gather this information, we may have more helpful comments.

[Edited to add: You did not specify if she had CRC, so I shouldn’t have assumed that. If she had a different cancer, particularly lung cancer, that would be highly relevant.]

[roadrunner]

[deleted duplicate]

[saltygirl]

Thank you so much. Will ask her. She had colon cancer. Her 0.6 cm lung met is confirmed as a met from her original colon cancer. Will find out more info.

[saltygirl]

I tried to get more info. But don't understand. My friend is not in a mental stage to answer. It seems the cancer cells were found in the lung fluid. So she feels it's not treatable.