Any one out there

don09

who has nsclc who's status is in remission and currently only being scanned every 6 months??????? Would appreciate hearing from you.

z

1anomo
I had vats to remove a lobe, no chemo, no rad, and I am scanned every 6 months. I don't know if this counts for what your looking for.

lekkerone

scans
I am the same as Z. Had VATS Dec. 1 and was scanned every three months for first six and now every six months. If by scan you mean x-ray and consultation. Diane

AlanRinHBG

lekkerone said:

scans
I am the same as Z. Had VATS Dec. 1 and was scanned every three months for first six and now every six months. If by scan you mean x-ray and consultation. Diane

Hi Don
I've been in remission for almost 3 years. I have CT scan every 4 months.
Next time, brain mri too. why?

don09

AlanRinHBG said:

Hi Don
I've been in remission for almost 3 years. I have CT scan every 4 months.
Next time, brain mri too. why?

CT scans
Hi Alan, We have corresponded before in the past, and I think if my memory is correct, was it you who had extensive scarring to the chest area from radiation? What's interesting and why I posted this question was the scan routine started out every 3 months, then he changed it to 4, which I only had one, at that sequence. when I returned to his office for the results, which was just this Friday, he then informed me he was extending it to 6 month. My concern with this is it seems like such a long period of time to go unmonitored, also if remission status should change or a new tumor were to be present it would go undetected, where being scanned every 4 mos. leaves more fighting options if needed. I have a sense the reason my Onc. did this was to limit the amount of radiation to the chest area, but can't say I like the idea.

catcon49

don09 said:

CT scans
Hi Alan, We have corresponded before in the past, and I think if my memory is correct, was it you who had extensive scarring to the chest area from radiation? What's interesting and why I posted this question was the scan routine started out every 3 months, then he changed it to 4, which I only had one, at that sequence. when I returned to his office for the results, which was just this Friday, he then informed me he was extending it to 6 month. My concern with this is it seems like such a long period of time to go unmonitored, also if remission status should change or a new tumor were to be present it would go undetected, where being scanned every 4 mos. leaves more fighting options if needed. I have a sense the reason my Onc. did this was to limit the amount of radiation to the chest area, but can't say I like the idea.

don
I had Stage 1a lung cancer lower right lobe. It was removed by VATS surgery. I recieved a CAT Scan yearly with a chest xray at in between until last year. After I was NED for 3 years, my dr pushed by CAT Scan to 1 1/2 years. It was kind of scary in the beginnning, but now I have to view it that I'm doing well so why do the extra scans. I also have the BRAC I mutation that causes breast cancer. So yeah they don't want to do more scans than I need. But you should address your questions to your dr. I'm sure he will answer them.
Good luck.

cathy

Christmas mouse

It is scary
I totally understand your worry, when my tumors were reduced to 50%, my dr went ahead and put me on maintenance chemo right away and then my tumors spread again so quickly. This time he put my chemo on hold for 5wks so I can go thru radiation for my brain, I know my tumors are not doing well again. The sign to tell me is how bad I cough, do u have something to go by ? How long has this been going on for u ? I would seek 2nd opion from another dr.

don09

catcon49 said:

don
I had Stage 1a lung cancer lower right lobe. It was removed by VATS surgery. I recieved a CAT Scan yearly with a chest xray at in between until last year. After I was NED for 3 years, my dr pushed by CAT Scan to 1 1/2 years. It was kind of scary in the beginnning, but now I have to view it that I'm doing well so why do the extra scans. I also have the BRAC I mutation that causes breast cancer. So yeah they don't want to do more scans than I need. But you should address your questions to your dr. I'm sure he will answer them.
Good luck.

cathy

Hi Cathy
Thank you for replying to my post, and yes, it is a pretty scary thought waiting 6 mos. but I think your perspective is a great lesson, in changing ones mindset. You almost have to how else do you get through the waiting and the anxiety. I have fared well, thus far, so thanks again for the post.

don09

Christmas mouse said:

It is scary
I totally understand your worry, when my tumors were reduced to 50%, my dr went ahead and put me on maintenance chemo right away and then my tumors spread again so quickly. This time he put my chemo on hold for 5wks so I can go thru radiation for my brain, I know my tumors are not doing well again. The sign to tell me is how bad I cough, do u have something to go by ? How long has this been going on for u ? I would seek 2nd opion from another dr.

I am no longer in treatment,
I am no longer in treatment, I have been in remission now for 2 years. When I was going through treatments I had the maximum amount of radiation to the chest area, which caused extensive scarring to the airways so I do have a cough as a result of that. I'm not clear, but it sounds from reading your post that you are still currently going through treatments?
Drs. almost always attempt to surgically remove tumors once they have responded well to treatments. Was this an option for you? I don't really know your personal situation, but am suspecting you have had an MRI? Sorry for all the questions, just trying to help. There are a lot of us here who have or had at one point been where you are, and some currently there. This is a great place, for all kinds of support. All my best to you.

AlanRinHBG

don09 said:

I am no longer in treatment,
I am no longer in treatment, I have been in remission now for 2 years. When I was going through treatments I had the maximum amount of radiation to the chest area, which caused extensive scarring to the airways so I do have a cough as a result of that. I'm not clear, but it sounds from reading your post that you are still currently going through treatments?
Drs. almost always attempt to surgically remove tumors once they have responded well to treatments. Was this an option for you? I don't really know your personal situation, but am suspecting you have had an MRI? Sorry for all the questions, just trying to help. There are a lot of us here who have or had at one point been where you are, and some currently there. This is a great place, for all kinds of support. All my best to you.

Hi Don
Don, my tumor was inoperable. that was determined after a whole summer of chemo and radiation. It was supposed to shrink and be as dead as possible prior to surgery. All that happened but the tumor had taken over the T1 vertibrae. Surgery would have paralyzed me more than likely. So taxotere and Cyberknife sounded like a wiser choice. The tumor was reduced to scar tissue as they put it. The 3 month scans showed no activity at all. No need for PET scans, just CTs. Now 4 months. nsclc is slow growing so I'm not afraid. My oncodoc says recurrence is almost assured. Nice, huh? They'll monitor it and if I notice any symptoms in the meantime, I should call. Hell of a way to live. Every silly little ache and pain gets my attention. I'm learning to deal with it pretty well. I keep reminding myself about the COPD and emphysema they said is terrible all by itself. I'm trying to get in some walking and still take all the supplements that the naturopath prescribes. I believe in them. I'm also very optimistic about the future of cancer care. I was told that if I came back today with the same thing, I'd probably get different treatment. I guess we'll see, or maybe not.

2catsmom

Hi don09,
I was dx'd with stage 2 nsclc and had my lower right lobe removed in August of 09 (not VATS). I had CT scans every 3 months for the first year and every six months for the second year. I have one scheduled for November and I don't know what schedule they'll put me on then. I hope they keep me on the 6 month schedule - I'm nervous about having to wait longer than that to make sure things are still ok! Only had one round of chemo but couldn't handle it and ended up back in the hospital so had to quit, but I did go through the whole course of radiation. I still have muscle spasms at the incision site and intermittent, gnawing pain in my rt side and my doc said I have post thoracotomy syndrome. I'm wondering if anyone else has this? He said it may never go away. I'm ok with it; as long as I know it's not "The Beast" returning I can handle it. I hope you are doing okay with your 6 month schedule.

Ex_Rock_n_Roller

6-month scans
Don,

I am 15 months past end of treatment (radiation and two chemo agents) for inoperable NSCLC IIIB, and at my last visit, the doc decided he would go to every six months, to minimize radiation exposure. That means my next visit will be the first three-monther with no scan. Two scans ago he ordered a chest X-ray only, but did a CT scan this past one.

It does make me a little nervous going six months with only my personal reactions and the standard blood lab work as evidence, but this is one of those times when I have to say I hear statistics behind what the doc is saying, i.e., if you're good, you're good. If you have an asymptomatic recurrence we don't pick up until six months from now, your options stink anyway, so we assume the best and roll the dice.

I suspect the judgment may have something to do with where the cancer was located to begin with, and therefore the likelihood that perceptible symptoms would show up in the event of recurrence.

don09

Ex_Rock_n_Roller said:

6-month scans
Don,

I am 15 months past end of treatment (radiation and two chemo agents) for inoperable NSCLC IIIB, and at my last visit, the doc decided he would go to every six months, to minimize radiation exposure. That means my next visit will be the first three-monther with no scan. Two scans ago he ordered a chest X-ray only, but did a CT scan this past one.

It does make me a little nervous going six months with only my personal reactions and the standard blood lab work as evidence, but this is one of those times when I have to say I hear statistics behind what the doc is saying, i.e., if you're good, you're good. If you have an asymptomatic recurrence we don't pick up until six months from now, your options stink anyway, so we assume the best and roll the dice.

I suspect the judgment may have something to do with where the cancer was located to begin with, and therefore the likelihood that perceptible symptoms would show up in the event of recurrence.

Thank you
Thanks to all of you for your reply's, it's always a comfort in knowing we are here for each other to support and encourage. My best wishes to you all.