Sinking the Battleship

[spicysashimi]

So I was talking with one of my cancer doctors the other day, okay, my cancer psychologist, but he's pretty clinical. Anyway, he asked me if I ever gave any thought to removing the primary tumor from my lung. He mentioned how I was an atypical case and may require atypical methods, but he also said that he is seeing primary tumors removed despite metastatic disease more often in breast cancer patients.

On the plus side, maybe I would cease to have chest pain - and pain is the name of the game at this point in my treatment. I am fairly certain I could handle the surgery. And wouldn't it just be better to have a lower tumor burden? I am always reading about how the smaller the tumor burden the more effective the treatment, etc.

I know my primary onc won't go for it - so I'd have to find someone else, probably some kind of cowboy. I'd like the piece of mind too --- cut that sucker out. Let's just deal with the bones.

What do you all think?

aaron

[barbara5452]

Aaron, I would say talk to your onc. it can't hurt. Yeap I agree 1 less beast to worry about. Let us know how it goes.

[Nova]

I would want that too, if a doctor told me it was a possible option .

My hubby has small cell, and when they told us it wouldn't do any good to operate, I just didn't "get it"...I kept thinking to myself that surely it would have to help to be rid of a tumor the size of his, and THEN go after the little bits left over....???

I would look into it further if it's something you could/would consider doing. Sometimes a person has to stray off the beaten path!

Best of luck to you, in whatever you decide on.

Take care,

Nova

[wondermom]

I would absolutely check into it. If they could find a primary in my mom I would push for that too, but her lungs were just so full of spots. I don't believe anything stood out as a primary. It seems that most oncs. have the same answer. Surgery is not an option because it is a systemic disease. I will never understand why it wouldn't be beneficial to remove a "problem area", especially if it is causing pain. I asked about doing cyber knife on my mom's liver met and was told no due to systemic disease. Fortunately, it is gone now with other treatment but at the time my thinking was, why not get rid of that one and have it be one less area affected and causing problems? It is sad that when cancer is later stage the options seem to be less. All options should be available and doctors should be open to whatever the patient is up for. Pull ALL the tricks out of the hat! Just my opinion, of course, I am not a doctor. Best of luck to you!

[kamataca]

Like all things, I think it would certainly be worth asking about. If your dr. is against it, I would push questioning until you fully understand 'why' (not accept "It's just too risky..." weigh the risks of not doing surgery with the dr., etc) so you are as educated as possible. If you are still interested, no harm in checking around to see what other oncs think.

I'm really curious to hear what you find out!

Kelly

[Sheri]

Aaron, absolutely, I would want the primary gone. When my Dad was first diagnosed with SCLC, they always assume the disease is systemic so they don't normally do surgery. I fantasized about taking my Dad to the emergency room and shooting him where his tumor was so they had to take it out! We'll he wasn't going to go for that, but I envisioned the primary to be the flagship tumor, so why not remove it?

Maybe Dr. West will join this thread but a couple of months ago in chat (the log is in "ask the experts", I think) I asked him if met's met. He said something to the effect that the medical community wasn't sure. Sooo, if met's don't met and the primary is gone, is there a chance you won't have any further spread? I dunno.

You're so young, I'm sure you could handle the surgery, you're challenge will be convincing someone to do it. Good luck to you Aaron, I hope you are able to have surgery done.

[Muriel]

I noticed that you're in NYC. Had you considered going down to NIH (In Bethesda, MD, I think, or Wash.DC) to get an opinion from someone there? Kasey probably wouldn't be with us now if she hadn't done that. Good luck.

Muriel

[mary colleen]

I think you should research it. NIH is probably optimal for an opinion. Let us know what you decide.

[wiesia]

I looked into it for my father and also for my mother (who has metastatic breast cancer). I think the logic for lung cancer is like that: lung surgery is very hard, lung cancer is an aggressive cancer and the first priority is to treat the spread. Surgery would need some recovery time and you would not be able to get chemo for a month or more. In that time the mets can run away from you.

Keeping that in mind, I thought (when my father was still alive) that if we could control the mets (he never had problems with the two spots on his bones), and could shrink one of the tumors in lungs (he had two) then we could cyberknife the other one. Bad luck for us: his lung tumors (one of them) run away from us. But, in principle, this is something to look into, I think.

[Don M]

I would kill it off with cyberknife. Most cyberknife centers will treat the primary tumor after conventional treatment. It would conserve your lung capacity and get rid of the primary. There would be no risk from surgery. If you have a recurrence in your lung, you would still have lots of lung power left to deal with another cancer. You could just zap it again with ck.

http://www.cyberknifesupport.org/forum/

Don m

[Andrea]

I say seek out different docs and see waht they say. Aggressive is the way to go

[Kasey]

I have no idea what would be best, Aaron. BUT if you are seeking an opinion............I do recommend NIH. I have SCADS of info I am willing to share with you. I just saw my very awesome doc there this week. I have sent more than a couple of people there and he says keep them coming. He says there are many options out there and he is on top of them all. Please PM if interested in info and #'s and names.

Kasey

PS: Thanks, Muriel, I should have weighed in on this sooner!

[tiredmom959]

No one wanted whatever cancer that could be removed OUT of their body more than my mother. The day the oncologist told her surgery might be an option, you'd have thought she won the lottery. And I agreed with her. It just seemed logical to at LEAST take out everything you could see in there, and fight what's left or comes back. It seemed like the best, most aggressive thing to do.

But after watching my mom (at least given her age), I don't believe she is any better off after her surgery, and quite possibly worse. She had a lobe removed (plus I believe they took part of the other lobe, left side, as well), and recovery from the surgery wasn't a piece of cake. It almost seems, from observations of other friends and family members with different cancers, they either get it all, or it spreads faster than ever after surgery. Nothing scientific there, just personal experience.

[wiesia]

tierdmom,

your observation could be correct. It is one of the theories bounced around (at least in breast cancer). The idea is that the primary controls the mets to a degree while it is there. Once removed the "control" signals are gone and the mets grow wildly. In breast cancer this is a big issue since most women do have a surgery and who knows whether the tests picked up correctly that there is no mets.

[Ry]

Aaron-

I think Kasey's doc is your cowboy. I see you haven't had radiation so you don't have that to worry about ruling out surgery due to receiving too many rads. As long as they can get a clean field around the tumor- might be worth a shot. Let us know what happens.

[tiredmom959]

Wiesia ... that makes alot of sense. Maybe what Ry said is the key ... if the margins are all clean, surgery is likely a benefit. If not ... maybe no benefit or even more likelihood of growth.

In a post to Dr. West about my mom, he said he rarely recommends surgery when someone has had a pleural effusion (as she did when first diagnosed) ... not that there aren't exceptions.

[onlychild*]

I agree, talk it out with a few doctors and way out the options, pros/cons. My mom only has one tumor - I wish she would go have it removed as I have read about good success rates removing a single tumor. If I was in that 'boat' myself I would seriously consider it too, especially being so young.

Best wishes to you! Keep us posted! Maybe I can get my mom to read your message and it will inspire her to fight for her life.

Warmest regards,

Kate

[Nushka]

Aaron,

If you could possibly go to the NIH and see Kasey's doctor I think it would be well worth your time and effort. He seems to know what all the options are and he has done a great job with Kasey. Have you mentioned this to Dr. West? Might give that a go as well. Let us all know what you find out and decide.

Nina

[spicysashimi]

Here's what I asked Dr. West on his site:

Dear Dr. West,

One of my cancer docs (not my primary onc), asked if I ever thought about having my primary tumor removed - a 3 inch matzoh ball in my left lung. There are a few subcentimeter nodules in both lungs that have been dead since I started chemotherapy a year ago. Other than that, I have bone mets which are my major managing problem (pain). There are no known metastases outside of my bones. Occasionally, I'll also experience chest pain from the primary tumor.

I know its unorthodox, except for maybe someone with solely brain mets, but I would like to have the primary tumor surgically removed. What do you think? On the plus side, I can minimize (hopefully) the chest pain I have from this swelling matzoh ball of a tumor. Also, won't removing it reduce my "overall tumor burden" - a goal of any oncologic therapy? Couldn't a lower tumor burden increase the effectiveness of my chemotherapy? Lastly, there's more "out there" theories about rate and control of metastases - maybe this Battleship is the primary met producer. I know cancer doesn't really work like that but I also know we know little about the science of metastases - and why sometimes mets reproduce fast or slow or tend to go here or go there.

Of course, there's a piece of mind element that you can't deny - It would be nice to walk around everyday knowing I do not have a large cancerous golf ball just chilling in my left lung.

I'm aware of the protocol and how you want to treat stage IV's systemically, but what about individualized treatment - isn't that the future? Don't we all have different cancers and different bodies? A generalized treatment plan wouldn't optimize survival for most of us - we need plans more tailored to the individual.

As you may remember, I am 28 years old. I am a non-smoker. I feel well and consider myself relatively healthy. My biggest symptom or side effect from my disease/treatmnet is bone pain. I have no pulmonary symptoms. I am currently on a trial with Gemzar and Alimta which is "working".

I bring this up because a doctor casually mentioned to me that they are removing primary tumors in metastatic breast cancer cases more and more often now. I know different cancers act differently, but within nsclc, different cancers act differently. If I got this sucker out, my treatment can focus solely on the spots in my bones which respond well to chemotherapy and hopefully may respond even better with the Matzoh Ball removed.

I look forward to your response.

a

[Judy-OK]

Aaron you have the plus of youth and otherwise good health on your side and think you should fight it and do anything you can get a good doctor to agree to that might get rid of the beast. Best of luck and prayers for you.

[Carleen]

Aaron,

I can't begin to offer advice on this. On the one hand you are young and should be able to tolerate aggressive treatment moreso than what the norms are for doctors and protocols.

I know that generally they say unless they can expect a cure with surgery they will not risk the complications of surgery. But, on the otherhand the way I always thought of it was... well... we were told we were stage IV incurable from the beginning, so without surgery there is no cure, with surgery there is no cure but there is relief in the tumor burden. Maybe if you were 80 and weak I'd say forget about surgery. But you are only 28. I'd ask around and see if there are other doctors that will support that decision.

One of my regrets is that with my husband we did not do some things that were outside of the box in thinking. He was also very young strong and healthy (other than the cancer). We were continually told not to worry about the mets in his liver as they were so small that they weren't of primary concern. Even when we looked at treatment options that might have at least taken all involvement out of his liver, they said not to concentrate on that but think systemic treatment. But in the end, there became so many "small" lesions in the liver that it was what caused the greatest problem. It was the cancer in his liver that eventually shut down his liver functioning that ended his life. Ironic.

I believe is there is any option out there to even take a few small cancer tumors and cells out of the equation then it is worth looking into because no one knows what and when and where this beast will do it's worst damage.

I'll keep you in my prayers Aaron and I hope for complete healing and restoration for you.

[ursol]

Aaron,

it is so hard to know what is right here. I have wanted my adrenal gland tumor out yet because I'm now stage IV and it's metastatic disease it is outside of protocol. No one will do this because I have had disease to more than one other place outside the lung. In my opinion had they taken it out months ago, I would not have another cancerous lymph node showing up on PET scan which just occurred. I personally think the Dr.'s just have no friggin clue what is the best way to go.

By the way...St Francis Hospital in CT has Cyberknife, not too far from you if you need to get their opinion.

Lilly