Surgery done, adjuvant chemo planned

[LilyMir]

Hi all,

So my VATS is done. I can't say it was easy (the chest tube was absolutely horrible) but things went well and the surgeon told me he was aggressive removing lymph nodes along with my lobe (one node showed some uptake on PET and looked big during surgery). The final pathology report is not ready yet (gosh, it has been 10 days!) but I was advised to start mentally preparing for adjuvant chemo. Surgeon says it reduces chances of recurrence. No word yet what chemo and how long, this will be discussed next week I was told (they are testing for mutations).

Couple of Qs:

- What mutations should I insist they test for? We are in Canada so testing seems not to be comprehensive due to cost (socialized healthcare).

- IS mutation testing and biomarker testing one and the same?

- Anyone had similar experience with adjuvant chemo? Is it effective?

As usual, now that surgery is done, my brain has moved to the worry of recurrence!

Thanks very much! 

[LouT]

LilyMir,

I'm glad to hear that your surgery went well.  Yes, the chest tubes are a real pain (pun intended) and it's a good day when they come out.  I'm going to share two areas that will help answer your questions.

1. The first is" Navigating Your Diagnosis" and it contains information on many things from "Diagnosis to Biomarkers and Treatment Options" and it can be found here.

2. The second one is "Survivor Resource Center" in this case you have items covered such as "Managing Side-Effects, Complimentary Therapies and Survivor Stories" among other items.  You find that one on this page.

I'm sure you'll also soon hear from others and some that had the experience you may be going through.

Lou

[Tom Galli]

Lily,

Glad to learn your surgery is over.

I was supposed to have adjuvant chemo after my surgery but complications that required 2 subsequent surgeries stopped that plan. I recovered just in time to learn about a 3 tumor metastasis to my remaining lung!

Lung cancer is so dangerous because it recurs. Here is my insight on recurrence. Post surgical chemo (adjuvant chemo) is a pain but recurrence can kill you. The objective of adjuvant treatment is to sweep the blood and lymphatic systems of stray lung cancer cells before they settle down and form new tumors. These days, advances in conventional chemo drugs have really tamped down the side effects. 

You mention the delay on the pathology report. There are (or should be) 2: a histology report that reveals the type of lung cancer (small cell, non small cell, large cell), and a report on biomarkers. Your histology biopsy results ought to be available now. The second biopsy involves laboratory testing for biomarkers and this indicates suitability for targeted therapy, and immunotherapy. In the US, comprehensive biomarker test results often take about 2 weeks after surgery to process. And yes, mutation testing and biomarker testing refer to the same process. I would think Canada does the same kind of biomarker testing performed in the US. It is pretty much a standard practice world-wide.

Stay the course.

Tom

[Karen_L]

Lily,

Do you have an oncology specialist in lung cancer? Who is prescribing the chemo? Where would it take place?  These are important questions to have answered. I don't know how a national healthcare system works, so can't say much more than understanding the system that will treat you is very important. I always ask who my contact is or will be for a particular course of action, how to best contact that person, and under what circumstances I should reach out.  It is very important to be assertive -- not aggressive-- about getting your questions answered to your satisfaction. 

I'm not sure what kind of "mental preparation" chemo requires. It seems like that kind of comment would make me worry about it to the point of obsession. I just showed up when they told me and had chemo. A lung cancer specialist is so important because they can explain things in a way that is helpful. 

There's a lot of lingo in CancerLand that sounds scarier than what it is. I had "adjuvant therapy" after my chemo and radiation. It just means they give you something after your initial treatment to help bolster the effectiveness of that treatment. Here's how the Mayo Clinic, on of the US's big cancer centers,  defines it.

Quote

 

What is adjuvant therapy?

Adjuvant therapy is often used after primary treatments, such as surgery, to lessen the chance of your cancer coming back. Even if your surgery was successful at removing all visible cancer, microscopic bits of cancer sometimes remain and are undetectable with current methods.

Adjuvant therapy given before the main treatment is called neoadjuvant therapy. This type of adjuvant therapy can also decrease the chance of the cancer coming back, and it's often used to make the primary treatment — such as an operation or radiation treatment — easier or more effective.

 

 

My biomarker testing took about 3 weeks until we had results. My cancer center started treatment before we had the test results, based on protocols established by the National Comprehensive Cancer Network, or NCCN. 

Try not to let your mind take you to the dark places-- yes, this is scary, but by learning about it you can diminish your fears. 

Karen

 

 

[LilyMir]

22 hours ago, Karen_L said:

Lily,

Do you have an oncology specialist in lung cancer? Who is prescribing the chemo? Where would it take place?  These are important questions to have answered. I don't know how a national healthcare system works, so can't say much more than understanding the system that will treat you is very important. I always ask who my contact is or will be for a particular course of action, how to best contact that person, and under what circumstances I should reach out.  It is very important to be assertive -- not aggressive-- about getting your questions answered to your satisfaction. 

I'm not sure what kind of "mental preparation" chemo requires. It seems like that kind of comment would make me worry about it to the point of obsession. I just showed up when they told me and had chemo. A lung cancer specialist is so important because they can explain things in a way that is helpful. 

There's a lot of lingo in CancerLand that sounds scarier than what it is. I had "adjuvant therapy" after my chemo and radiation. It just means they give you something after your initial treatment to help bolster the effectiveness of that treatment. Here's how the Mayo Clinic, on of the US's big cancer centers,  defines it.

 

My biomarker testing took about 3 weeks until we had results. My cancer center started treatment before we had the test results, based on protocols established by the National Comprehensive Cancer Network, or NCCN. 

Try not to let your mind take you to the dark places-- yes, this is scary, but by learning about it you can diminish your fears. 

Karen

 

 

Hi Karen, I have yet to be assigned an oncologist, I just spoke with my surgeon to date. He said he referred me now to oncology and I understood they have 2 oncologists who are lung cancer focussed at the BC Cancer Agency here in Vancouver. I am not sure how good they are there but seems treatments are standard. I believe one of those lung oncologists will talk to me soonish and explain their plan for chemo. Today I received a scary stage T3 N2 but no mutations results yet. Having been told I have 2.7cm on CT  earlier, today I was stunned they say the pathology report measured 5 cm tumour. Despite one node being positive, they assigned N2, which seems some do given the node was in aorta pulmonary level 5 AP window. This seems to place me in stage 3D 😭

[Karen_L]

I'm so glad you've been referred to lung oncologists! There are definitely protocols in place for treatments, especially now that so much is known about biomarkers. I have found the NCCN guidelines for treatment to be fascinating. 

I understand the scared feelings. I was initially staged at 3A, T2b-4.5cm N2 M0. Quite the shocker for never having smoked and having no real symptoms but a pesky little cough. Sounds like you already know a lot, but here's info I found helpful about understanding my staging.

Keep us posted!

Karen