lung thingies:should they stay or should they go?

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keepcalmcarryon
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lung thingies:should they stay or should they go?

Postby keepcalmcarryon » Sat May 07, 2011 9:53 am

I've created a debate between the intereventional radiologist and thoracic surgeon on one side and my onc on the other.
The interventional guy thinks that a combination of RFA and video thoracotomy (VATS) could remove my thingies.
They say the number of nodes (6) has not changed in 6 months on scans, indicated that they don't think there are other micronodes.
My onc says removing the nodes is pointless as he thinks there are other nodes too small to detect. He wants me to go into a clinical trial. I'm considering that, or maybe standard treatment with erbitux.
I know with liver mets they use chemo to reduce the number of nodes to permit surgery.
So if the nodes in my lungs can be removed now, shouldn't they? And the RFA can be repeated if we miss any.
I'm confused and would appreciate any advice
Many thanks
9/07 t3 n2
exc. biop, Xelox, Rad
06/08 NED
03/09 PET-pelvic LN
06/09 rad tx
10/09 exp.lap; can't find LN
05/10 Stage IV, lung nodes
04/10 Xeliri, Avastin
06/10 PET-lung ok
11/ 10 failed surg ln
02/11 Proton tx
7/11 failed clin. Trial
10/11- xelox

missjv
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Re: lung thingies:should they stay or should they go?

Postby missjv » Sat May 07, 2011 10:16 am

well speaking from my own experience get them out then do some sort of mop up chemo especially if no more have popped up. i have been through thoracotomy and rfa. the rfa is by far less painful and much easier to recover from. my lung mets were found on scan april 7 and my doc sent me for rfa right away and had that done april 11 now im doing 6 rounds of xeloda in case there is any micro stuff. if you are able and surgeon is willing i say get them out.

missjv

NWgirl
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Re: lung thingies:should they stay or should they go?

Postby NWgirl » Sat May 07, 2011 10:30 am

I'm also confused as to why oncologist's want to leave them in and surgeons say take them out. When mine were first detected in December 2010, two oncologists said I wasn't a candidate for surgery. Then in February, I had two spots surgically removed - by a lung surgeon my oncologist sent me to! I still have a lymph node in between the lungs that has cancer that they did not remove surgically as they felt it was too risky. I'm on chemo and haven't had any scans yet or further discussions of what our next steps will be and when.

Lung things seem to be a gray area, even as gray areas go. I can only guess that my oncologist decided to proceed with surgery after reviewing CT scans from the previous year that showed the spots, but little change. Maybe that was it.

My spots were removed via VATS and though no surgery is fun, this one was relatively easy to recover from and was a fairly short hospital stay.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
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VATS Jan 2011
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KarMel
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Re: lung thingies:should they stay or should they go?

Postby KarMel » Sat May 07, 2011 11:40 am

Surgeons are always happy to cut...it's what they do.
"To cut is to cure" is their mantra.

If cutting or RFA will lead to a cure, by all means, get them out.

Last July, I had only one spot light up in my liver on PET. I had some small lung thingies and small liver thingies that did not light up, so I figured stereotactic radiotherapy to that last little spot on my liver would lead to a "cure." The oncologist said it was up to me if I wanted to try, but nonetheless, he believed the little small lung and liver thingies would eventually grow. He was right. By November, I was back on chemo.

I don't want to rain on your parade, and you must do what is right for you. I am just sharing my experience.

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weisssoccermom
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Re: lung thingies:should they stay or should they go?

Postby weisssoccermom » Sat May 07, 2011 12:21 pm

I haven't been in your position so truthfully shouldn't even post. However, I really do think that you should talk with Eve (vancouvereve) as she was in the same position. Eve and I shared many phone calls about this exact same thing - onc feel that there are always micromets somewhere (and maybe there are - who knows???) so what's the point of seeing a surgeon/radiation oncologist. I can't say for certain, but I believe Eve was on chemo for 18+ months in this state of 'limbo' where no chemo totally got rid of these 'thingies'. I do remember asking Eve, rather incredulously, why they don't just remove them or zap them - particularly if chemo is just keeping them stable. She did have VATS on one side but not the other - then it appeared to be this never ending chemo. Eventually, I believe Eve was the one who said 'enough' and persuaded the docs to consider zapping the little buggers - then do more mop up chemo or even chemo lite (Xeloda + Avastin) for a longer period of time. Terry also was faced with this same situation - send her a PM.

OK, I'm not in this position, but I distinctly remember asking both Terry & Eve WHY not get them zapped?? Seemed quite logical to me then do more chemo! Again, I believe I'm remembering their stories correctly, but it was the patient, and not the doctor who had to push the oncs to consider zapping/surgery as a viable option - followed up by chemo.

Side note - only based on what I have read here and from talking with people who had personal experiences, I'm not sure the lung thingies are the only ones that fall into this 'limbo' category. Seems as though small liver lesions also can have a tendency to have the same scenario - just based on what has been posted here and on other boards. Doesn't seem to matter where you are - USA, Canada, etc. - oncs routinely seem to have the opinion (and I'm not saying it doesn't have merit) that if the cancer shows up in one place - there must be more micromets out there in your body. While I understand their line of thinking - where do you draw the line?? Again, I'm an outsider looking in and am not 'vested' in this like you guys are. I guess, after speaking with both Terry and Eve and oftentimes hearing their frustration, I would take the surgery/zapping route and then continue with the chemo with a definite plan in mind and with alternative plans should other scenarios arise.

Last couple of questions - which to me, seem very simple. What good is there in keeping the mets?? Does the onc know that throwing more chemo at them will obliterate them?? What's the downside of zapping them?? You'll still be on a low dose chemo at the same time - certainly not full strength but Xeloda or 5FU. Even after zapping them or having surgery, you'd still continue on for some period of time with chemo. One last thing that I've heard from a few people. It seems like the longer a person stays on chemo - the better the chances that the cancer will become acclimated to the drugs and become resistant to them. The longer you wait, the better your chances are that your cancer cells will become resistant to the drugs and then where will you be?? Probably then too late to have the other options. Sometimes 'standard' protocols have to be tweaked and you, as the patient, are the one who has to help make that decision. I know, I was in a similar situation where I had to use standard protocol, tweak it for ME but still working within the system to achieve the results that I wanted. It's doable but you have to be an informed advocate of your own care.
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BrownBagger
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Re: lung thingies:should they stay or should they go?

Postby BrownBagger » Sat May 07, 2011 12:53 pm

Depends on your specific details, of course, but when my one lung met turned up on a scan, my onc recommended surgery. My thoracic surgeon recommended surgery. And my colorectal surgeon recommended surgery. So I had the surgery, which turned into a thoracotomy. True, it was painful and my recovery is still ongoing some 8 months later (numb ribs, still some pain), but I'd do it again in a heartbeat. Because of the specifics of my case, no post-operative chemo was recommended. Hopefully my upcoming CTS will be clear.

Good luck in making your decision.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
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SkiFletch
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Re: lung thingies:should they stay or should they go?

Postby SkiFletch » Sat May 07, 2011 1:33 pm

How sure are they that they can do it with VATS? Thingy size and especially location will be "big" as far as that is concerned. If they can do VATS and RFA, the recovery time is very short and you could get back on chemo quickly, therefore I'd say do it for sure. The tough decision is if they're wishy-washy on the VATS cause the thoracotomy might be longer of a recovery which is probably what your onc is worried about.
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betsydoglover
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Re: lung thingies:should they stay or should they go?

Postby betsydoglover » Sat May 07, 2011 3:52 pm

My vote (see my signature) would be to get rid of them. I had mine removed via VATS and it was EASY surgery. Could have gone home the next day, but the morphine made me so sick that I elected to stay one more day.

In my case my nodule was deep in the lower right lobe of the lung. Interventional radiologist tagged it under CT guidance with a nuclear material (tenesium I think) and then my surgeon during VATS used a scanner and "went for the hot spot" to do a wedge resection and remove the sucker.

My oncologist did say that the data on "metastatectomies" (removal of mets) is inconclusive except for liver. So, what. And she agreed. I just wanted it out.

I recently passed the 2 year post surgery NED mark. Still on Avastin, but VERY happy I had the surgery.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
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11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
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CRguy
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Re: lung thingies:should they stay or should they go?

Postby CRguy » Sat May 07, 2011 10:58 pm

keepcalmcarryon wrote:I've created a debate between the intereventional radiologist and thoracic surgeon on one side and my onc on the other.
...YES...got your support team talkin' bout...YOU...never a bad thing.

keepcalmcarryon wrote:So if the nodes in my lungs can be removed now, shouldn't they? And the RFA can be repeated if we miss any.
I'm confused and would appreciate any advice
Many thanks


Sometimes nodes are more "reactive" (-> inflammation/infection/immunological/idiopathic/incidental), than "active"
(->..mets)...SO,docs don't always key in on the nodes...more concerned with WHAT is causing the nodes to be of interest. Also, nodes are considered "normal" structures and by removing them we disrupt the lymphatic system...-> more edema / scarring etc....whereas tumors / mets are NOT normal...so "go for the mets not the nodes" can be one plan of attack.

...Also, some masses (nodes or not) can be in difficult areas where it is best not to do major surgeries, especially if there is a good prospect of improving things with chemo or radiation.

Finally, I have been "inside" on surgeries where we see the tumor and obvious affected tissues ... BUT don't always get a good visual on the "other" structures we are concerned with, despite having all the scans etc....what do you do...keep cutting because you are "concerned"..?

BTDT...based on a surgeon's experience..sometimes you do ...sometimes you don't. The main goal is to have your patient walk out of a successful surgery in the best condition possible when the job is done. Remember this is still only one step on the Journey. I want my patients to have more steps...as a patient I wanna have more steps..... BTDT...on both sides of the surgery table :|

Having said all the above ...my preference (patient and surgeon) is to cut out all that I can....BUT depends on what I find at the actual time of surgery...may have to change the plans on the fly. JMO.

Cheers and Harmony on the Journey
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
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Surroundedbylove
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Re: lung thingies:should they stay or should they go?

Postby Surroundedbylove » Sun May 08, 2011 3:55 am

I hesitated to post because I haven't exactly been in your situation but reading some of the posts made me realize I did have relevant info to share. When my lung thingee was discovered and too small to send me for PET, I had to watch and wait. During that time I of course was worried. My way of compartmentalizing worry is to actively research and make a plan for each scenario that it could be. My onc understands this about me so we actually went deeper into the discussion of "what if" - he said if it was cancer, he recommended surgery. His comment was that his goal, where at all possible, is to make the patient a surgical candidate because his feeling was that the best possible outcomes are in those cases where the cancer is surgically removed. I actually was talking with him about radiation and "less invasive" treatment options - he said "well yes you could do that" etc., etc. but came out and said he would hope that if it was cancer that I would strongly consider surgery.

In my case the spot stayed stable over the course of three scans so they don't think it is cancer. My detailed conversations with the onc (and the rad onc by the way) were informative though.
Surroundedbylove

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