pursue mop up chemo? - 1294060

Hi gigizabuk,

Congratulations on your sucessful surgery! For surgically removed stage I tumors less than 4 cm in size, adjuvant (post-surgery) chemotherapy has not been shown to improve survival, as stated by Dr. Wakelee here: http://cancergrace.org/lung/2016/04/05/gcvl_lu_why_adjuvant_chemotherap…

That would tend to indicate that surgery for such tumors successfully removes all cancer from the body, so we would expect that another systemic treatment such as immunotherapy would not provide a benefit either.

JimC
Forum moderator

After discovering a tiny AIS nodule in addition to the main lepidic/acinar 1.9 cm tumor in the completion lobectomy, my cancer was treated as metastatic (IIB) rather than multifocal and it was recommended to me to get 16 weeks of cisplatin/vinorelbine adjuvant chemotherapy, which I completed. That started in March 2016.

No one I interacted with seem to have even heard of multifocal and my oncologist is in charge of clinical trials in the major Canadian city I live in. So I had the chemo even though I had my doubts as to whether it made sense or not, particularly from reading this site.

Now I have long term neuropathic pain and seem to not have recovered my energy and mental clarity since that treatment. Plus I damaged my hearing and kidney function. Subsequently the guidelines were changed in the 8th edition IASLC guidelines to treat lepidic type multifocal cancers according to the stage of the most aggressive tumor and they upgraded my stage in my notes here from IIB to IB, which means that I would not have been offered chemotherapy.

So I am example of over treated "BAC" to use the old nomenclature. I have the peace of mind to know, if aggressive lung cancer returns, that I did everything possible to live but, on the other hand, I have to live with the long term deleterious effects of a chemotherapy that probably was ill advised.

On top of that, the reason it is IB instead of IA is because they said i had PL1 visceral pleural invasion although the pathology report says the cancer got "into the elastic layers" rather than beyond the elastic layers so I may have been misclassified that way as well.

Hi onthemark,

Thank you for sharing your experience. I am sorry that you have had such lingering effects from your chemotherapy, but we appreciate your providing a firsthand perspective on the negatives of overtreating BAC. Most patients quite understandably want to take action against any visible cancer in their bodies, so it can be difficult to make the case for "watchful waiting". All of the traditional treatment modalities (surgery, radiation and chemotherapy) have been improved over the years and are not the scary monsters they once were, but no therapy is free of side effects. Some patients experience more than the usual share of those toxicities, and I'm sorry that you are one such patient.

Thank you again for adding your real-world experience to the concepts we discuss here. Best wishes to you.

JimC
Forum moderator

This is a great site and I really appreciate the efforts the moderators and others make to keeping it going.

The problem with adjuvant chemo is that the benefit is theoretical and statistical whereas the long term side effects are daily impediments, if you get them.

It isn't easy to imagine beforehand what it is like to live with those side effects but it is very important to ask about those beforehand and try to take that into account in decision making. At the time many people are thinking of duration of life and not dying of cancer, rather than quality of life. That was where I was.

Adjuvant or mop up chemo seems to benefit some groups of lung cancer patients much more than others even if they are in the same stage. See for instance: "Gender, Age, and Comorbidity Status Predict Improved Survival with Adjuvant Chemotherapy Following Lobectomy for Non-small Cell Lung Cancers Larger than 4 cm"
https://link.springer.com/article/10.1245/s10434-015-4902-8

Even though my tumour was not more than 4cm, I am in a group (women under a certain age with no comorbidity) who saw great benefit from mop up chemo whereas other groups did not in that retrospective, large scale study.

So I can't say for certain that I didn't get a benefit, only that with the most recent classification I would not have been recommended to get chemo and I would not have these side effects, and that i was likely overtreated.

I simply didn't have the nerve to go against my oncologists strong recommendation at the time. I doubt most people would.