Help needed STAT: Lung nodules and next steps - 1293164

HI cbwriter,

Welcome (officially at least, since you haven't previously posted) to GRACE. I am sorry to hear of your spouse's scan findings. It's always very upsetting, especially when there is so much uncertainty involved.

The first issue is the change noted from previous scans to the current CT. A 1.5 mm increase in size is very small, well within the variance found between any two scans, which can arise from the use of different scanners, varying body position or the way the CT slices "cut". A nodule of over one centimeter can often be biopsied, but it may be the location of the nodule that makes it difficult in your spouse's case.

From your description, whatever this is has not grown much over the course of the various scans. In looking at our site, you may have read about adenocarcinoma in situ, formerly (and often still) referred to as BAC. It can be very slow-growing, to the point that it is not at all life-threatening, with a risk of actually over-treating the disease. Dr. West has written this post in which he describes his algorithm for treating BAC and other slow-growing lung cancers.

Patients and caregivers often express a very understandable desire to remove any vestige of cancer that appears, but as Dr. West describes, those interventions do not come without cost, and if a cancer is not going to cause a problem for a long time, if ever, why put a patient through treatment that won't really provide benefit?

It would probably be helpful to consult a local expert in BAC (most likely found at a teaching hospital affiliated with a medical school), to get a second opinion as to a course of action.

We'll be sending positive energy for good results from the PET scan.

JimC
Forum moderator

Hi cbwriter,

I'm glad that you are finding the content here helpful. For the most part, each thread receives some replies shortly after the initial post, then new posts come along after that.

Although new systemic treatments have surfaced since Dr. West stated his algorithm, the course of action he recommends remain valid. Slow-growing cancers remain at risk of over-treatment.

With the help of your current medical team and perhaps a second opinion, I hope that you can develop a treatment plan (which may include further watchful waiting) with which you and your spouse will feel comfortable and confident.

JimC
Forum moderator

Hi cbwriter,

Welcome to Grace (officially, as Jim said :) ). I'm so sorry you and she have been going through this. Waiting is often the hardest part, as Tom Petty suggests.

Activity on Grace fluctuates quite a bit. Since our focus is first informative many members post only when they have questions others like Jim and me stick around to share our experiences and resources. Everyone is encouraged to return often to share and offer hope.

As you have read sometimes lung cancer is slow growing, most often this is BAC which is a subtype of adenocarcinoma nsclc. It is treated like adeno nsclc so any new information on the subject would be found under the subject of adeno nsclc. Dr. West is one of the leading specialists in the care and treatment of BAC and sees more cases than most if not any one else. Since lung cancer is most often aggressive many medical oncologists who treat many types of cancer aren't familiar with treating any type of lung cancer as a very indolent cancer. There's no new or different thought about treating indolent BAC as lightly as possible.

Keeping you and yours in my thoughts,
Janine

cbwriter,

Dr. West does comment directly on the threads when there's a question that's unique to the forums and not too individual. For several years he and other oncologists responded daily on most threads. In doing so they really covered most of the general topics, creating a mass of information that Jim and i are able to point to when there are questions. The time they allotted to Grace has now been taken over by new endeavors in cancer management so it's not that they are no longer interested in cancer education. Among other extra curriculars Dr. West co-moderates an every other Thursday twitter chat on #LCSM (lung cancer social media) that's always informative. Our faculty specialists keep us up to date on what's new in cancer care by writing pieces and making video in our focused cancer section. If you have a specific question or something your not connecting to your spouses situation please try to vocalize it so Jim or I can try to help you make the connection between the resources and her case.

I don't think your questions have been too individual but they have been covered quite a bit. Multi focal malignant nodules in both lungs represent stage IV nsclc. Think of anticancer treatment as a marathon as opposed to a sprint. This sentiment is held by every oncologist who's contributed to Grace. Make all treatment options last as long as possible. For someone with an indolent BAC that might mean chemotherapy for a 4 cycle course then waiting until progression becomes clinically relevant to treat again. Radiation is reserved for symptom management such as when a nodule is pressing or blocking a structure such as esophagus or painful bone mets (which is unusual to BAC, BAC usually stays in the lungs).

I hope this helps,
Janine

cbwriter,

I'm sorry that the information has been a bit confusing. I will try to make it clearer.

In lung cancer, when there are nodules in both lungs that is staged as Stage IV. In your spouse's case, there has not been an actual diagnosis of lung cancer, so as you say there has been no staging. The point Janine was making is that if there is cancer activity in both lungs, local treatment such as radiation or surgery is not usually favored, because it puts the patient through a risky procedure but doesn't address the rest of the cancer. So radiating the largest nodule without adding systemic therapy (e.g., chemotherapy) does not address the entire picture. In the stage IV setting, local therapy is usually only pursued for the symptom palliation purposes to which Janine referred.

As far as what I and the second opinion nurse stated regarding the apparent growth on the scan, a CT is a series of many images taken at very small intervals. The "cut" between one image and the next can fall in a different place with each scan, which can affect the apparent size of a nodule and make it look larger on one scan than another. This is only a significant issue when the difference is small, as with this possibly slightly enlarged nodule, since the change noted is only a millimeter and a half.

Situations such as this are always subject to interpretation and the "art" of oncology, which provides a good reason to obtain a second opinion. I would ask the new doctor questions based on what we have discussed here, in order to get a better understanding of the options available, and possible confirmation of the suggested therapy.

JimC
Forum moderator

Hi Carol,

I'm very encouraged to hear that your wife's second opinion consultation has provided you with comfort and confidence. It's important to feel that you are on the same page with the medical team, and that you can communicate well with them.

Good luck to both of you moving forward, and please let us know if you have any further questions.

JimC
Forum moderator

Hi Carol,

Thanks for letting us know about the 2nd opinion. I'm sorry for the confusing info and glad Jim's here to sort out my thoughts. Having an onc that fits your needs is so vary important and so happy your wife had the courage to switch. I know she and you will both feel better for it. I hope answers come clearly and tumors move slowly or not at all.

Keep us posted and all the best to you both,
Janine

Hi Carol,

I'm sorry to hear of the diagnosis. I think an appointment with a thoracic oncologist would be helpful, so that you can have a more thorough discussion of the particulars of the diagnosis and treatment options. If you've read much of the material here on BAC, you've probably seen there it can take different forms, whether it's pure BAC, which tends to show up as primarily GGOs, to more invasive forms that can spread. BAC itself tends to stay in the lungs, but when a more invasive type of adenocarcinoma is present, then it may spread beyond the lungs. The oncologist should be able to provide a better idea of what is involved here.

As far as repeating radiation or VATS, there's no finite limit, it's a question of the cumulative damage to healthy tissue. In the case of radiation, it's not just the area you are targeting, but all of the healthy tissue through which the radiation passes on its way to that target. So each instance presents a unique question to be determined by the radiation oncologist or surgeon. That's why we tend to limit the use of such local therapies when cancer is present (or is expected to be present) elsewhere - you can't simply continue to irradiate or resect cancer everywhere it appears.

Checking for molecular markers is pretty standard, so that if systemic therapy is warranted you will know whether there are mutations which can be treated with specific targeted therapies.

The only options for the GGOs are watching and waiting or systemic therapy, and as you've seen from Dr. West's algorithm, you don't want to over-treat something that isn't growing or causing symptoms. I understand how difficult waiting can be, but it's often the best choice for the patient.

Hoping for great results from the radiation.

JimC
Forum moderator

Hi Carol,

If at some point systemic therapy is recommended, until the past few years the choice would be one or a combination of the available chemotherapy agents. Now, it's also possible to check for mutations such as EGFR, ALK or ROS1. When the appropriate mutation is present, the preferred therapy is a drug which targets that mutation. It's also possible to test for PD-L1 expression, to see if one if the immunotherapy agents might be a good choice.

If the FNA collected sufficient tissue, testing for mutations now could provide information which could aid in making a systemic therapy decision without delay down the line. Mutational status can change over time though, so if systemic therapy isn't necessary for quite a while (not a bad thing!) you might need a new biopsy at that time.

JimC
Forum moderator

Adenocarcinoma in situ is a form of NSCLC. And yes, it's possible to monitor a slow-growing cancer for quite some time.

Best wishes for a Happy Thanksgiving for you and your family.

JimC
Forum moderator

Usually GGOs that are found to be nsclc are BAC (AIS) and are often quite indolent (GGO or ground glass opacity is a description of how it looks hazy on a scan. BTW it's also how pneumonia looks on a scan. Typical nsclc is completely opaque or solid.). It makes a difference because pure BAC is can be indolent and require little to no treatment where as typical adeno that isn't BAC is almost always aggressive and often spreads outside the lungs. A person can have a mixture of BAC and nonBAC.. To be really confusing, pure BAC can transform over time into a more aggressive form of nsclc. There is much variability even throughout one person's full experience with it. A medical oncologist who specializes in BAC will have seen and treated many cases and will have the best feel for how to treat each individual case.

Keeping you in my thoughts and sending positive vibes your way.
Janine

Congrats on the clean PET! We encourage celebrations of all good news :)