They opened her up and the closed her up - 1264524

Malki13,

I'm sorry to hear the results of your mom's surgery. I assume there will be a discussion with her oncologist regarding the next step; if he feels she is fit enough that may include chemotherapy or a targeted agent (I'm not sure if her cancer has been tested for mutations). We will hope that she is one of the patients who responds well to treatment.

Sending positive thoughts your way,

JimC
Forum moderator

Malki13,

I responded in your other thread, but here is another post from Dr. West which may help: http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

JimC
Forum moderator

Yes, that's probably what happened. With lung cancer there isn't improvement in longevity by taking just part of the cancer out but there is quite a bit of danger to ones health by removing lung tissue. So leaving it be until they find out if she is stage IV is the most helpful thing to do. There is much written on the subject here. such as, http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…
http://cancergrace.org/lung/2014/03/16/invisible-disease/
http://cancergrace.org/lung/2013/03/16/harpole-on-lc-staging-advances/

I hope some of this is helpful in understanding what's happening. The stress from cancer doesn't sneak up on you but jumps right in by being a very complicated thing to need to understand from the beginning. It sounds like the doctors are moving in the right direction with your mom's health foremost in their plans. There is a consensus that things calm down once the diagnosis is sure and a treatment plan is made.

All best,
Janine

I offered a response in the other thread that included the same link Jim also provided. I guess great minds think alike (or we've just underscored how superfluous I can be)

I am very sorry to hear about this development, malki. This unfortunate development isn't uncommon, and it sounds like the surgeon made an appropriate judgment based on the findings at surgery. With only very rare exceptions, there's no value in doing a surgery that doesn't have a realistic probability of being curable.

-Dr. West

Malki,

Perhaps it should also be noted that the surgical procedure of opening up and then closing can stress the body, but nowhere near as much as removing a lobe. So the recovery process should be somewhat faster, with fewer complications.

JimC
Forum moderator

There is some potential overlap, but there are cases in which there can be little doubt that it's cancer. Often the surgeon will biopsy one or more just to be sure, but I think it's overwhelmingly likely that if the surgeon saw what he says was clear spread of cancer as multiple nodules, it's an accurate interpretation of what he saw.

Good luck.

-Dr. West

Thank you Dr. West.

Hi.

The same thing happened to me. 5.5 years ago. And clearly I'm still here. Make sure they test for genetic mutations.

Gail

Yes, a very helpful reminder of the possibilities!

-Dr. West

Malki,

Proton beam radiation is the expensive “new kid on the block” in radiation treatment. As Dr. West described it:

“Proton beam therapy is a technique that allows radiation to be delivered to a particular depth within tissues and then stop, minimizing radiation “in front of” and “behind” the target point (I’ve heard proton beam therapy described as similar to a light saber, going out to a point and then stopping, while radiation would be more like a laser beam, affecting everything in its path — although I think the light saber analogy isn’t quite right in that proton beam radiation shouldn’t deliver much radiation leading up to the target point either). It does allow very detailed administration of radiation to tight areas and is particularly great around the eyes, and it’s also used for some rarer children’s cancers, I believe. It’s being used more and more for prostate cancer, but the problem is that it’s not clear that it provides benefits beyond many other better studied and more widely available tools.” – http://cancergrace.org/forums/index.php?topic=788.msg4102#msg4102

As he also describes in that post, the proton beam facilities are very expensive to build, so it is being marketed to many patients for whom it does not add a significant marginal benefit. Certainly the cost and inconvenience of traveling overseas would be a major factor in your decision.

In a subsequent post in that thread, Dr. Goldberg cites an early study which suggests some benefit, but she concludes:

“It is much too premature to suggest that proton beam treatment is better than IMRT or SBRT (intensity modulated or stereotactic body radiation therapy). It is unlikely to be worse, though, by the same token. But definitely more costly.”

[continued in the next post]

[continued from the previous post]

Dr. West added:

"Proton beam radiation is unquestionably more expensive, but it’s not clearly better than conventional and still quite advanced radiation techniques like IMRT (intensity modulated radiation therapy) for lung cancer and most other common cancers. The challenge is that it is marketed very aggressively because the centers cost so much that the people need to recoup their $200M investments, which you can’t do if you limit yourself to the few clinical situations in which proton beam RT is actually a clearly superior choice. So you market the hell out of it, provide vague innuendos that newer and more expensive is better, and take advantage of the fact that people are inclined to believe that more expensive must be superior. You can certainly use some dizzying physics theories to provide a plausible smokescreen in the absence of actual evidence it’s better.

It’s possible that additional studies will ultimately demonstrate that proton beam radiation is superior for lung cancer and other common cancers, but not necessarily. A study in prostate cancer showed it was clearly NOT more effective and was associated with worse side effects than more readily available IMRT, perhaps because the more sophisticated software for more mature radiation platforms allows better tailoring of the radiation field than most current proton centers, which have more rudimentary software to guide the process.

This isn’t sour grapes, by the way. Our own center was approached as the first choice place for a proton beam facility by a private group wanting to build in Seattle, but our radiation oncologists saw that the cost couldn’t be justified by the limited group of patients best served by protons. They concluded you would need to market it to people beyond its demonstrated place, and that’s exactly what’s happening." - http://cancergrace.org/topic/radiation-vs-proton-radiation#post-1262315

JimC
Forum moderator

It sounds as if the doctors are talking about possible non resectable but curable nsclc. On the subject of stage III unresectable nsclc Dr. West starts a podcast this way,
"..you can get a sense of the variability in how different lung cancer experts share the same set of data but have their own interpretation and style for cases where there are significant gaps in what the data tell us." http://cancergrace.org/lung/2011/08/30/unresectable-stage-iiib-nsclc-ca…

On unresectable nsclc from the drop down menus, http://cancergrace.org/lung/category/lung-cancer/non-small-cell-lung-ca…
On proton radiation I found this in a Grace search, http://cancergrace.org/forums/index.php?topic=788.0
On chest radiation in general from the drop down menu up top, http://cancergrace.org/radiation/category/chest-radiation/

I use the search feature most. Just put a term or two of what you're looking for into the search box. Depending on the type of internet browser on your computer, you may need to log off Grace to get the results. This isn't ideal but the search is terrific.

Hope these links help,
Janine

Hello, Malki 13. I just want to mention before going on that I / my family had a very similar experience that you and your Mom just experienced. To clarify...it is also my Mom who went through the surgery..she in fact was opened twice within about one month. I also want to emphasize that not all people's cases are the same, outcomes vary greatly and my Mom is by no means 'out of the woods' yet.
I do not know what type of cancer, the exact staging, where exactly the primary tumor is located and how many nodes are involved with your Mom. With that stated I will tell you that my Mom's 'journey started in early May 2012 with a X-ray for a pre-surgery screening for a knee replacement.
She was scheduled for a VATS and they encountered spread in some nodes and sewed her up. We were told that given the location of her primary tumor in the outer edge of the ULL that VATS would only be needed but they do 'test' biopies of nodes to determine possible spread. She had three or four nodes involved on the same side of the primary tumor. She was at least Stage 3A adenocarcinoma.
The doctors stated only chemo and radiation. We seeked a second opinion immediately just to get a confirmation only if that was what we would only end up getting.
We did not. University of Penn told us that they would remove the ULL and the involved nodes. They would start the chemo(carbo platin and taxol), IMRT radiation and proton.
She was told that this would be pretty agressive and some would say extremely agressive. She was fully opened twice and then started her treatment regimen within a span of about ten weeks.
Well... it was very rough by the end of her treatment plan and it has been a long recovery but so far every scan has been very good. I do not know exactly how and or why but so far she has been improving slowly but steadily and apparently cancer free...at least so far per her scans and some of the obvious symptoms of cancer. I hope with all my hear that your Mom & others can be free from

Hello again, Malki13. I do not want to possibly be out of line in any way and I am not a professional but depending on the exact location of the primary tumor, exactly where & how large the affected node(s) might be she might still have surgery on the table in my book. One BIG warning...this is HOTLY debated.. that is ...if and excactly when is surgery a good viable option... also it depends on the performance status of your Mom... age, other health related problems and if any of these are serious in nature / complexity but if I remember your posts...she has one primary(depending where in the lung) and the one node affected on the one side...I think the surgeon in Penn that we have would at least consider her for surgery BUT like I said I am by no means an expert and do not have all the facts. All the people we spoke to told us that surgery is the gold standard IF it can be done depending on all the factors involved. I would at least call a major cancer center and inquire to seek a second opinion but do not do so soley by what I just wrote. Look into it for yourself and others here might help in some other way. I can only go by what our experience has been so far and the people we know about. Please take care and God bless!!

Don't misunderstand lymph node with nodule. A nodule is a mass and a lymph node is part of the lymphatic system.
Here's a good blog post on lymph node involvement. http://cancergrace.org/lung/2010/11/14/distinctions-among-n1-node-invol…

I would definitely want to defer to the doctors who are seeing all of the details of her case, but if there are pleural nodules, this is considered advanced/stage IV NSCLC, regardless of lymph node involvement. This may get to the issue of why chemotherapy is being recommended -- systemic therapy is the cornerstone of treatment for advanced NSCLC -- but I think the role of radiation here needs to be carefully clarified, as it would not be associated with a survival benefit for stage IV disease (if cancer in the pleural space is present).

Another question is still how quickly things are progressing. It sounds as if there is enough ongoing progression now that treatment is indicated, but if it's actually a slow-growing process, there is a real risk that the treatment could be worse than the disease and poses more of a risk to her, especially at 85 and somewhat frail, than a slowly progressing cancer.

Good luck.

-Dr. West

Malki,

Progression is noted by comparing the visible cancer on scans over a period of time, not by pathology. If successive scans taken over a period of months show that nodules have increased in size, or new nodules have appeared, then progression has occurred. The amount of difference noted over that time period indicates whether progression is slow or fast.

The staging cannot be finalized until it is determined whether there are malignant pleural nodules or a malignant pleural effusion. If either is present, it is stage IV, if not it appears to be stage III. You may want to find out whether any of the pleural nodules or the pleural fluid has been tested for the presence of cancer cells.

Prognosis depends on whether the cancer is slow-growing and/or whether it responds to treatment. The growth rate is determined by watching it on scans over time. Some patients respond very well to treatment, others do not; the only way to find out is to begin therapy and then rescan to judge the results. Although generally the prognosis for stage IV disease is not good, more and more patients are living well beyond the medians.

JimC
Forum moderator

Scans can image very small nodules, so that if they do progress to a clinically relevant size, they should be visible on the scan. If they stay small enough that they don't appear, they are probably not clinically relevant. Of course the scan will also show whether there is any progression, and at what rate, of the primary tumor.

JimC
Forum moderator

Hello again, Malki13. To answer your questions about my Mom: She was (70) when dx'ed ..almost 71 technically... and had other health issues at the time but the doctors stated her performance status was good enough to proceed. MSK is definitely a great place to be with a very good reputation I hope everything works very well. I wish you and your Mom all the best.

Yes, to underscore Jim's point -- if you aren't seeing clear progression on scans over a significant time, I wouldn't consider it to be clinically significant progression. There is no formal definition, but I'd say that if you can't see progression or need to squint to see a millimeter of change over 4-6 months or longer, this represents a very indolent process, for which there is a very real risk that the treatment could well be worse than the disease, no matter what the stage technically is.

There are a minority of people with an advanced cancer, as proven by biopsy, who still do remarkably well for a very, very long time, often on no treatment. If they are doing well on treatment or after some intervention (surgery, radiation, etc.), I think it's very often that they are doing well despite and not because of the intervention they've received -- they'd be doing as well or better if they had never had that intervention because the cancer wasn't nearly as much of a threat as it was reflexively presumed to be.

-Dr. West

Because taking out good lung when there is zero chance that it will get rid of all of the cancer is a very bad idea -- you get all of the negative effects of a surgery and no anticipated benefit. There is no point in taking out a lobe or a lung if the cancer can still grow elsewhere. And if the cancer is slow growing, there is no reason to take out the lobe.

-Dr. West

malki,

Chemotherapy always has some side effects, but there's no way to know in advance how bad those side effects will be in one particular patient, and no way to ever know if it is the chemo successfully controlling the cancer or it is just a slow-growing cancer.

As far as the pathology, for the most part it won't tell you, except that the grade of the tumor may give an indication of how aggressive the cancer is likely to be. As Dr. West has written:

"[T}here is also evidence that, stage for stage, patients with poorly differentiated cancers don’t tend to do as well as patients with better differentiated cancers. This is probably because they’re also more aggressive. The cancers that are so chaotic that experts can’t determine the histologic subtype are also likely to grow and divide very quickly, and be far less likely to have a specific mutation like EGFR or an ALK mutation driving them — instead, they’re driven by a combination of many, many mutations." - http://cancergrace.org/lung/2010/03/12/nsclc-nos-poorly-differentiated-…

He has also discussed tumor grade here: http://cancergrace.org/lung/2007/03/20/tumor-grade-and-prognosis-in-nsc…

JimC
Forum moderator

Exactly. There is no way to know with certainty how any person will tolerate chemotherapy or how well or poorly a cancer will respond. However, there are a few general ideas to follow:

1) People with no symptoms can only feel worse from treatment. That may be justified if there is a potential for cure, but it is of much more dubious value if you're talking about a non-curative treatment that can't make you feel better (if you have no symptoms) but can definitely make you feel worse.

2) Chemotherapy tends to be most effective against faster-growing cancers and less effective against indolent (slowly growing) ones. A person also has "less to lose" by pursuing aggressive treatment when it is anticipated that the cancer will be increasingly threatening quickly, but has a greater risk of the treatment being worse than the disease when the cancer is indolent.

3) Though there is a lot of variability across individuals, chemotherapy tends to be better tolerated in fit people with fewer medical problems, and younger patients tend to have fewer side effects than older patients.

4) Patients with more medical problems have a greater chance that their other issues will be a bigger problem than the cancer over time, especially if the cancer is slowly growing.

This means that it's very wise to be judicious about the risks of over-treating an older person with many medical problems and a slowly growing cancer. But weighing the anticipated risks vs. benefits is a complex issue that should be done by the people directly involved with a person's case.

Good luck!

-Dr. West

I think the key is to get the final staging and hear the recommendations from her doctors. It is absolutely critical to get the input from the full pathology review, and yes, it's not uncommon to learn new information from that compared with what was previously seen on scans or at surgery.

We can't begin to suggest what would be an appropriate treatment here. First, you and we don't have all of the information to know what the situation is, and then, as I mentioned above, her general health, other medical issues, and pace of the current cancer are very important variables that go into the recommendations, but we don't have those insights available to us.

-Dr. West

Oftentimes, surgeons will repeat a CT or PET/CT before a planned cancer operation, because by the time of the procedure, the original imaging is >45 days old. Nonetheless, it is still quite common for mediastinal lymph node(s) to be positive after a careful surgical inspection, even if the preoperative PET/CT or high resolution plain CT scan did not suggest any. I would guess at least 30-40% of lobectomies for lung tumors do turn up positive lymph nodes not well-seen on prior imaging, if a comphrensive mediastinal lymph node dissection is done.
I think that speculation about the pace of cancer based on prior imaging in this situation is not that helpful. I would be curious what all the reported pleural nodules were, if not cancer. In general, it is common for cancers with positive lymph nodes to be less indolent or more aggressive. Hope this helps.

It's common to do frozen sections on at least some, but not necessarily all, of the different areas of material sent to pathology at the time of surgery. It's understood that this is just the "quick and dirty", provisional assessment of the pathology, not the final word that comes from more detailed assessment later.

-Dr. West

Malki,

I understand; waiting for results is often one of the most difficult aspects of the cancer journey.

Hoping for good results from the final pathology.

JimC
Forum moderator

Hello again, Malki. Again...I am no expert but if I am interpreting correctly what you have written regarding your mom's situation with this most recent post it appears she has what is normally referred to locally advanced lung cancer. It also appears she has to deal with multiple nodules that are on the same side of the chest. A cancer dx is never good but it usually better than receiving a Stage 4 dx. The treatment options still depend on many factors yet...tumor load,,, that is the total number and or size of each one, type of cancer, if any muttations that can be targeted, exact location of tumor(s), and performance status of your mom. Treatment also likely will depend on what your mom may or may not want to do regardless of all the other factors. Cancer is normally so troubling...I sometimes you the following analogy... sometimes it is like trying to squeeze a handful of jello and expecting to be able to control all of it and none of it making a mess on the floor. I'm sure it is maddening sometimes for most everyone..especially with medical providers who try to cure or at the least keep stable those who are afflicted with this. Please take care and God bless.

There is no standard approach for her particular form of cancer. Having multiple nodules on the same side is often seen with bronchioloalveolar carcinoma (BAC), now commonly termed lepidic predominant adenocarcinoma (LPA) if it is multifocal (as it is here). This is often a slower growing process that is relatively unlikely to spread outside of the lungs.

The issue here that is worth considering is that the stage groupings are based on a collection of patterns that share a similar prognosis. However, the biology of these scenarios is not always the same. Having multiple lung nodules in the same lung is really quite likely to be a biology that isn't curable, I'm afraid. Sometimes, if slow growing, it's possible to remove the entire lung with curative intent, but that's obviously not the plan here, nor would I think it should be in her particular case.

The default option for most patients with stage III NSCLC is a combination of chemo and radiation, but hers is stage III with a different biology than most. Based on what you've conveyed about her particular case, I think that systemic therapy such as chemotherapy or, if indicated by her molecular testing results, a targeted oral therapy, would be the cornerstone of any treatment.

Good luck.

-Dr. West

I suspect that whatever they're calling it, as it sounds like it's behaving like what we would consider characteristic of BAC... too often people get caught up in the terminology. What someone happens to call it is less important to me than how a cancer behaves.

My point about the biology of a cancer is that staging really has to do with just grouping together sets of patients who have a similar prognosis. For instance, imagine the following groups (this is imaginary numbers, for purposes of illustration):

A) half of patients have died after 6 months
B) half of patients have died after 1 year
C) half of patients have died after 3 years
D) half of patients have died after 5 years

Now suppose that among the pateints in group C, 90% of them have a pattern where they are likely to die after about 18 months if they aren't cured, but they are likely to live more than 5 years if they're cured, and the chance of being cured is 30%. The other 10% have the same median survival of 3 years (half have died by that time), but they really don't have a curable disease and tend to have a higher chance of slowly progressing, ultimately dying after about 3 years. They can all be categorized into as the same stage, because they have a similar prognosis, but it's a mistake to presume that the right treatment for the slow-growing, incurable patients is the same strategy that is optimal for the faster-growing but potentially curable cancer.

BAC is often slowly growing. It's not likely to be cured when it appears as multiple lung nodules throughout one lung. There is some variability, but most often, even when patients have a lung removed, the same cancer appears a few years later in the other lung. Sometimes, the entire lung is removed for a few slow-growing nodules, and patients can do well, but they might have done better with their slow-growing cancer and their lung left in.

There's no clear best answer here, but the right choice isn't just based on stage.

-Dr. West