Chemo, immunotherapy, or neither?

[Cheryl J]

Hello. everyone.  8 weeks ago I had a lower right lobe lobectomy- turns out it was squamous cell lung cancer.  Margins were negative, PET scans negative, 25 lymph nodes negative, but they are pushing chemo on me strictly due to tumor size (4.7cm).  Stats are not convincing me to endure this.(25% chance of recurrence, chemo may improve this by 10%).  Immunotherapy also suggested as "better than no further treatment at all" should I decline chemo.  Please share your experience, strength and hope.

Thank you, Cheryl J

[Tom Galli]

Cheryl,

Welcome here. Eighteen years ago, I was in exactly where you are now. Diagnosed with Stage IIIB NSC Squamous Cell LC, a single very large tumor completely blocking the main stem bronchus of my right lung, clear margins after surgery, and all resected lymph nodes negative. But I had surgical complications that precluded my scheduled post surgical chemotherapy. Then after a nightmare of thoracic surgery repairs, I emerged with a recurrence. Then the "fun" began!

I really encourage you do do everything possible to avoid recurrence in this disease, and a 10% chance of reduction is very significant. You cited a 25% chance of recurrence. This suggests even stage I and IB have a 33% chance (read the NCI paper cited in the blog), stage II to IIIA have a 66% chance! Procedurally, your post surgical chemo is call adjuvant therapy. This type of therapy excels in sweeping the blood and lymphatic systems of stray cancer cells looking to make a home and new tumor. Having a large tumor increases the probability that it was casting off cells that are likely in your blood stream, and unfortunately, there are no suitable tests to accurately detect the presence of these cells. But, chemotherapy is very effective in killing cells while they are small and before they form into solid tumors. 

If it were my decision. I'd take the adjuvant chemo after surgery. I might even agree to a plan of combination conventional chemo and immunotherapy as my adjuvant treatment to increase my resistance to recurrence.  Beat this disease early! Chemo side effects are a tiny price to pay to avoid recurrence.

As for hope, if I can live so can you!

Stay the course.

Tom 

[LilyMir]

Hi Cheryl, originally my lung nodule looked like stage 1 or 2 on CT and PET, but after lobectomy the tumour turned out to be elongated with 5.8cm in one dimension and one mediastinal lymph node was positive hence I was stage 3. I was quoted 70% risk of recurrence despite clean margins. Despite me having an EGFR mutation that has targeted therapy with (very recent) results of 80% recurrence reduction, they also recommended chemo first since this is standard of care and can be 15% reduction of risk.

I just had the one chemo session so cannot comment much how hard it is, but so far it has not been fun for sure. I however think the recurrence risk is too high, and can be deadly, so I am taking the risk of chemo for now. Will see how things go session by session. Tough decisions, I know.

[RJN]

Hi Cheryl,

Tough decisions ahead. I basically concur with Tom and Lily above. I’d also encourage you to look more into immunotherapy as an option. IF your doctors think you are a candidate, it may be the best road ahead. Many have fairly minor side effects, and in some cases it keeps recurrence away for years and decades. My disease is non-squamous, so I won’t venture into further advice, but I can personally vouch for immunotherapy as a fairly gently but highly effective option.

 

[Minh]

I remember reading somewhere while back about lung cancer recurrence probabilities in relation to nodule sizes after complete lobectomy with clear margin and no node involvements.

0cm < Size < 1cm  has 6% recurrence

1cm < Size < 2cm has 16% recurrence

2cm < Size < 3cm has 32% recurrence

With your nodule size of 4.7cm, I would guess the recurrence chance is much higher than 32%. If I have to make this decision, I would do both adjuvant chemo and targeted therapy to improve my chances. These two treatments could kill off all of microscopic cancer cells floating in your body that can not be detected by any tests or current testing technologies. If chemo side effects become too dangerous, doctor might spacing out your sessions or switch medication. Reducing recurrence chance of 25% to 10% is very significant in my view.

Did you have biomarker done to find out about your mutation??? I don’t think they will give you immunotherapy until they know your mutation. Typically they only offer immunotherapy when there is no targeted therapy that will work for your mutation. 

I have read so many stories that patients wished they should have taken adjuvant chemo when doctor recommended and offered them.

Take care!

 

[Karen_L]

Hi Cheryl, 

There have been so many great comments offered! My extremely unscientific observations and conclusions about lung cancer are as follows. 

1. Lung cancer is sneaky.
2. Lung cancer is relentless. 
3. It takes but one teeny escaped cancer "seed" (cell) to establish recurrence, and there's no way to see or tell if that has happened, even with clean margins, no active spots on a PET, etc. 
4. Many treatments are hard, but people respond very differently to them; there's no way to predict what a response might be. For example, for my 4.5 cm. non-resectable tumor, I had concurrent chemo & radiation, followed by immunotherapy. Despite all the preparation I received for managing side effects, the chemo was only mildly annoying. The radiation made me tired. The particular immunotherapy I had was bad for me and I had to stop it. (Note that I said, bad for me.) 
5. I know people who have lived, worked, and loved for a long, long time with Stage 4 lung cancer. They've done this by aggressively treating whatever comes along the cancer highway, asserting themselves about their care, and being fearless in their determination to live. I plan to follow their lead.

Whatever you decide, I wish you all the best.  

Karen

 

 

[Justin1970]

Hi Cheryl 

Goodluck with whatever you decide it is difficult but try anything, the chemotherapy wasn't as bad as I thought it was going to be nor was the radiotherapy, goodluck with everything Take care Justin x 

[LouT]

Cheryl,

I can understand the hesitancy to take on adjuvant treatment.  I would have felt the same way had I been approached with the prospect.  In my case with Stage 1a it was not offered.  I'm now 3 years since my lobectomy and so far I've been NED and my first annual scan is set for August of this year.  I have to admit that had I been offered the opportunity to do adjuvant therapy I would likely have taken it.  Lung cancer is so darned recurrent that I would have wanted every card to be stacked in my favor.

If you have concerns about the treatment (side-effects, hair loss, etc.) then speak with your doctor about them.  I cannot state from experience but perhaps this form of therapy is not as potent as a full-blown round of chemo.  Anyway...the choice is yours and as long as you are comfortable with your decision that is all that matters.

Lou

[Judy M2]

As @Minh asks, did you have biomarker testing done? Immunotherapy may not even be a choice for certain mutations.

I was diagnosed with inoperable Stage IIIB adenocarcinoma in October 2019. My oncologist threw the book at my 7 cm tumor and involved lymph nodes: chemo and radiation first, then a targeted therapy for my EGFR mutation. Chemo wasn't as bad as I'd feared, but radiation was rough. The good news is that all of the treatments worked, and I've been NED since April 2021. 

Ask about your biomarker results before making any decisions. A second opinion wouldn't hurt either. 

You're in Long Island. I don't know if you're a 9/11 survivor, but if you are, your lung cancer may have been caused by the toxic exposure. I am a survivor and can provide lots of info on this.