Recurrence of limited progression - 1264568

njliu
Posts:142

Here is an update from this week scan. The primary tumor, initially 5 cm at 14 SUVmax 2 1/2 years ago, showed 1cm growth at 8.9 SUVmax 9 months ago, successfully radiated with Tomotherapy, is now showing 2.5cm at 10 SUVmax.
Thanks to Iressa, we have been able to keep the cancer at bay for 2 1/2 years with two exceptions: several brain mets successfully dealt with WBR 1 1/2 years ago, and the isolated growth at the primary as described above.
We are seeing our oncologist tomorrow. From what I gathered online, I think here are the few options:
1. Add Avastin to Iressa
2. Add Alimta to Iressa.
3. Switch to carboplatin + Alimta
4. Try to get access to new generation TKI or PD-1/PDL-1
Appreciate any advice.
NJ

Forums

catdander
Posts:

njliu, I hope your wife is feeling alright. I've pasted links below that have been written to answer your questions. Of course not all questions can be given without knowing all the info so if you have a more specific question please don't hesitate to ask.

All best,
Janine

http://cancergrace.org/lung/2013/01/23/acquired-resistance-algorithm/
http://cancergrace.org/radiation/2011/07/14/repeating-chest-rt/
http://cancergrace.org/radiation/2010/12/09/what-is-tomotherapy/

njliu
Posts: 142

Hi Janine, thanks. My wife has been feeling better in general and this revelation of recurrence is a shocker. I am just seeking confirmation that these 4 options that I thought out myself before seeing the doctor are all reasonable choices. Being not in a country where any of the clinical trials concerned are available, I think the most "natural" course to take is to switch to a platinum doublet. But with the latest findings presented in ASCO meeting, I am wondering if there is a "practice changing" shift to favor a combination of drugs like TKI + Avastin or TKI + Alimta.
NJ

catdander
Posts:

Good question, Will make sure to get this to our experts.
Lung cancer remains a shocker even in my house where we've experienced the best of possible behavior of D's dx'ed stage IV nsclc.

Feeling well or at least better than not. So good for that.

Janine

Dr West
Posts: 4735

NJ,

The first point I would make, and I think it's a VERY IMPORTANT ONE, is that it has become clear to many of us doing focal radiation on a spot in the lung is that this region becomes pretty close to uninterpretable in the months to years that follow. We've seen enlargement of the treated lesion, even increasing PET uptake in the 1-2 years after an area was treated with focal radiation. This can sometimes look for all the world like progression, and sometimes when our surgeons have removed it, it turns out to be just inflammation. So I would underscore that you cannot trust the findings within an area treated with focal radiation, and it may not be true progression after all.

If progression were confirmed and felt to be clinically significant, there isn't any remote hint of consensus here. All of the options you mentioned are feasible considerations that might get similar levels of interest among members of an expert panel, with the exception of repeat tomotherapy after the same area was radiated before. I think this last option would receive the least interest.

Good luck.

-Dr. West

njliu
Posts: 142

Dear Dr. West, I just want to express our unreserved gratitude to your VERY IMPORTANT POINT. It is a point, regardless if it is the case or not for my wife, that I think is of highest standard in terms of expert professionalism. I believe most doctors, even the one responsible directly, would shy away from making such point so clear to patients to avoid any potential controversy or repercussion. May I ask if biopsy or "do nothing/keep close watch" are perhaps two reasonable strategies in this immediate next step? I venture into this "close watch" idea as in general, my wife is feeling good, with improvement in signs and symptoms. We also elected to "close watch" a revelation of a new brain met, right after WBR 1 1/2 year ago, which turned out to be a non-issue. We may want to test our luck again.
NJ

JimC
Posts: 2753

NJ,

Consistent with Dr. West's comments above, if there is doubt that the scan results showing apparent growth in the primary tumor actually represent progression, then close watch seems like a reasonable option. On the other hand, if your wife's doctors feel confident that progression has occurred, then the treatment options seem more compelling.

JimC
Forum moderator

njliu
Posts: 142

Thanks! Jim.
FYI. We have decided to not make any change to the treatment while tightening surveillance watch with another scan scheduled in 8 weeks.
Again thanks a lot to Janine, Dr. West and Jim for availing yourselves to make this very helpful discussion possible.
NJ

Dr West
Posts: 4735

Actually, I think it's a point that may not be made often because we're learning as we go. When I say that we've seen patients undergo surgery for what seemed on imaging overwhelmingly consistent with local progression of a treated lesion, I mean we've reviewed these results in the last 6-12 months. I was fooled by what seemed to clearly be progression, and I think that others may simply have not encountered this yet. I don't think it's well described or published, just something learned with our still nascent experience with surveillance after focal radiation of chest lesions.

My approach in such a patient would likely be further radiographic and clinical follow-up, and I think I would now favor a biopsy to prove viable cancer before undertaking any other treatment. My main conclusion is that I would be extremely reluctant to presume that a growing, even PET-avid lung lesion that underwent focal radiation has viable cancer without biopsy proof, almost no matter how ambiguous or suspicious the imaging findings are after the intervention.

-Dr. West

njliu
Posts: 142

Has there been any study to compare the risk of cancerous growth in a metastasized setting, from an area pretreated with focal radiation vs from other areas that have not been subjected to radiation before? The theory is pretreated area has been carpet-bombed, therefore all micro-metastases have been destroyed while areas not radiated consist of micro-metastases that are still growing unhampered (by radiation).
NJ

JimC
Posts: 2753

Once the micro-metastases have reached the bloodstream, metastases may develop in other organs. They don't come "from" anywhere in particular; it's wherever those circulating tumor cells end up. That is why local treatment (surgery or radiation) is not recommended in the setting of metastatic cancer - you are wiping out cancer in one location, but it can show up elsewhere whether you treat locally or not.

JimC
Forum moderator

Dr West
Posts: 4735

That has never been studied. I would say it's a question that can't be answered because it will be entirely dependent on the unique features of the patient's biology in the radiated region, the way the radiation was done, and the biology of the cancer in terms of risk of spreading elsewhere. There is no established role for radiation in this setting in the first place, so there is not, nor do I think there is likely to ever be, some well-defined population of patients in this situation to put into a trial and study.

-Dr. West

cards7up
Posts: 636

I'd just like to add that I had a similar situation. After targeted radiation and chemo in 2010, everything was looking ok. I was being followed by CT scans. Then at one point a PET was ordered. There was SUV uptake but thought to be from the radiation. It was 2.5 years later and a biopsy was ordered and it was an actual recurrence. I had surgery to remove the tumor which ended up being 5.3cm and going into the pleura. I had all clean margins and no lymph node involvement. I did follow-up chemo just for mop up. This was last August and so far so good. Sometimes with the radiation scarring, it's hard to tell if it's actually growing or not. If she's able to, I'd ask for a biopsy. I had a FNA and it was not easy due to the scar tissue, but they did get enough.
Take care, Judy

njliu
Posts: 142

Hi Judy, thanks for jumping in and share your experience. Hearing an actual similar experience is precious. Now I wonder if CT scan ( which has been ordered for next scan) would have no way to detect this, as the changes and scarring in that area may cloud the visibility of any growth mass.
NJ

catdander
Posts:

Keep in mind the CT on a PET scan isn't as high resolution as a stand alone CT. and The PET only shows cellular activity with the uptake values/numbers. Both can become confusing when trying to know what's happening. In a post just above this one Dr. West said, "We’ve seen enlargement of the treated lesion, even increasing PET uptake in the 1-2 years after an area was treated with focal radiation. This can sometimes look for all the world like progression, and sometimes when our surgeons have removed it, it turns out to be just inflammation. So I would underscore that you cannot trust the findings within an area treated with focal radiation, and it may not be true progression after all."

My husband went through a very similar situation. He had surgery then chemo/radiation to his tumor. The following scans showed a tremendous amount of activity on PET and a much enlarged area on CT in that area. I'm glad I understood going in that it was most very likely radiation scar and inflammation but it lasted a couple of years. If we hadn't followed it with a PET maybe he would have been stable or NED long before that. I'm not complaining and didn't at the time. though the onc and I did have a conversation more than twice about a CT instead of a PET. I've never felt that I was in a battle over D's tx, his oncologist has and will always talked to us until we know what we need to. He's now followed with stand alone CTs and I'm glad no one is spending that large sum of money for a PET that isn't giving us info that will help him live longer or happier.

carrigallen
Posts: 194

Exactly as the posts here illustrate, PET/CT is inferior to a plain CT with IV contrast for surveillance of patients after radiation. Too often, a routine surveillance PET/CT may disclose meaningless inflammatory activity, which incite anxiety, or at worst, provoke unnecessary additional procedures. Moreover, as Janine says, integrated PET/CT has poor resolution for monitoring tumor size, because of variation in breathing during the scan. Finally, if something is avid on PET, but can't be seen on CT, then there is usually little to do about it - we aren't going to start treatment or biopsy based on a finding that can't be seen at all on CT.

Integrated PET/CT is an excellent tool but it should be used selectively, not routinely.

njliu
Posts: 142

Greetings to all,
Good news and bad news to report.
Good news first: It has been almost a year since I started this link on this appearance of possible recurrence after targeted radiation with generally great performance status without any intervention other than taking Iressa that has lasted 3 and 1/2 years so far.
Bad news: While my wife continue to feel good, several "supporting" indicators are showing possible progression. Serum markers CA125 and CA19-9 trending up. SUVmax staying in the range between 8 to 11.5. Growth, albeit slow, in size. Last Scan this week detected some pleural effusion.
The question is: Do all these "supporting" indicators add up to confirm progression and acquired resistance on Iressa? Is Biopsy the only reliable way to ascertain progression?

Appreciate some advice. Thank you.
NJ

JimC
Posts: 2753

Hi NJ,

It's definitely good news to hear that your wife is feeling good. That in itself tends to be an indication of little or no progression. As far as the other "indicators", serum tumor markers do not tend to be very reliable measures of progression, and the faculty here have often stated that they do not feel that treatment changes should be made based on increases in these numbers. Pleural effusion, especially if small and asymptomatic, is also not a good indication of progression. When SUV seems stable and growth is slow, it is common to stay with a targeted therapy such as Iressa. Dr. West's analogy in this situation is "bad brakes vs. no brakes". Although new therapies are popping up all the time, there are a finite number and it's good to get the maximum benefit from each.

JimC
Forum moderator

njliu
Posts: 142

Hi Jim, Thanks for your input. In my opinion, my wife has benefited with this stand of not changing course while these various indicators of "lesser certainty" flagging red. However, it is the continuous worsening and incremental signals over the last one year that test our nerve and resolve. We want to avoid the folly of bullheadedness. Her oncologist thinks that the trend is positive albeit slow and the delay in changing course is just to postpone dealing with new set of side effects.
NJ