Why does it echo in here?

[Guest Janet W]

I check here frequently, hoping to see lots more early stagers - and it's been empty in here for days and weeks, basically!!

We really need to fill THIS forum up with people and make it so that nobody ever has a need to go to the late stage forum -

Think ct scans becoming a standard thing for smokers of 20 years or more might help that? So many people at risk who never even get an xray until they're sick and have to have an xray - - could be prevented with awareness and ct screening..maybe..?...think?

[Guest DaveG]

I found your comments very interesting. As a Stage IA, I have sometimes felt unworthy of even being associated with lung cancer. The feelings derive from what others have gone through and what I have gone through. I cannot fully relate to chemo or radiation, as I have never experienced either one. My lung cancer was caught, virtually, in its earliest stage, before it had either spread within the lung itself, or spread to other ares of the body.

I, like so many others here, however, fear recurrence. As I stated, on an earlier post, I have a CT Chest Scan coming up on this coming Wednesday, April 2. I am apprehensive about this CT Scan, as my CT Chest Scan history, favors cancer, verses a clear scan. I have had 3 CT Chest Scans, in the past 18 months, and each has revealed either a malignant tumor, or in the case of the last scan, a benign tumor. The second CT Scan was done to confirm the first scan, as Lung Cancer, when the first scan was performed, was not on the horizon.

There are, of course, other Stage I's who post to this Forum. I, as a moderator, do check this forum on a daily basis. Admittedly, this forum does not see as much activity as other forums do, especially Late Stage NSCLC/Mesothelioma.

I believe the reason there are fewer Early Stagers here is strictly because our numbers do not come close to equaling the later Stagers. The exact reason why we see fewer Early Stagers is unknown, but is speculative. I speculate that many of the Early Stagers, believe they have had a close call, have had successful surgery and decide to go on with their lives, especially if the surgery resulted in only a resection.

I am agreeing with you, there are fewer people with Early Stage Lung Cancer, who participate in this message board. How we go about getting more people with early Stage Lung Cancer to participate, is open for discussion.

[JudyB]

I agree with you, DaveG. Early-stagers are not so desperate for information. Maybe they have surgery before they have time to really realize what has happened to them.

As for screening, one of our cancer doctors was asked why drs don't do routine xrays on their smoking patients. He said a study was done that showed it didn't change mortality rates. I did not believe that. I asked my doctor about and she said the study was flawed and was being done again. If that's true, all smokers should be asking for xrays.

I think repeated CT scans would probably be expensive and potentially harmful if many, many were done. It also seems most early stage LC are picked up by having a chest xray for some other reason. That's why I believe annual chest xrays should be done routinely. Of course, one could have what happened to a friend of mine happen to them. His xray was miss-read. His next annual xray showed extensive SCLC. Isn't it ironic that this person had annual xrays and his cancer was still missed.

That is why LC needs much more publicity. MUCH more!! To somehow get thru to smokers like I was, that LC is not a disease that happens to someone else and never to me!!!

Just my position for whatever it's worth. JudyB

[gail]

I am one of those stage 1A people. Had quit smoking 17 years prior to dx, and had only smoked for ten years. As a breast cancer survivor, I was being followed closely, and when breathing problems came up I had the xrays done. It was not until 2 weeks before surgery that anyone really mentioned lung cancer possibilities. And I was told that lung cancer would be better then mets from the breast.

Sometimes I feel guilty talking about my situation. I am not going through treatment. My life is continuing. But that little 1 cm tumor in my lung scared me more then both breast tumors. The breast is attached to my body--the lung is in my body.

Often I am glad to show people that you can continue life after lung cancer.

The therapy has helped tremendously. I encourage anyone dealing with cancer to try it. Find someone who specializes in it. I feel strongly that my body reacts to stress by growing tumors. Now I am trying to remove stress from within. (Hence the difficulties dealing with my boss. )

I have just had two massages in two weeks, and could actually feel the toxins leaving my body. Highly recommend that, too!

[JudyB]

Another thought: Maybe the ones who get it caught early are under "Inspiration" (?) JudyB

[Guest Rita B.]

First time post. I didn't know this site was here and I've been in touch with Alcase for about 2 years. I was afraid they might get tired of me calling and emailing so much. I needed to look more closely at the web site.

My problem in the beginning was I just wanted to talk to someone like myself. I just needed to talk to somebody who had had nsclc stage 1,and had had surgery only. Alcase gave me a phone buddy. It was so good to talk to someone like me.

My early cancer was found by accident. Really. I broke my ankle, and had to have it put back together under anaesthesia. The doctors ordered a chest X-ray along with the other tests.

Nobody told me about the abnormal x-ray. I found it myself after I had gone back to work 6 weeks later. I work in a Radiology dept. so I asked someone to get my films so I could see what my ankle looked like before a plate and 5 screws. I am a nurse, not a tecnologist.

When I was getting ready to send the films back, I flipped through the written reports one last time when I caught the "abnormal" report. I couldn't beleive it. I was never a smoker. I had no symptoms.

The Radiologist had recommened a CT scan. I was able to get one the same day. The Rad showed me the scan with the "mass" and told me to get with a pulmonolgist right away. That was the last thing I had my family doctor do for me. (Got a new family doc.)

The lung man told me he didn't think it was cancer because: I wasn't a smoker, it was very small and it looked more like a chronic inflammatory process. The mass was in an area that was not reachable for biopsy. It was too far on the periphery to reach with a scope and it was right under the scapula and too deep to get from a front needle approach.

He recommended to do CT scans every 3 months for 2 years. If nothing changed on the scans, than we could safely cut back on the frequency and watch a little longer. Then if no changes, we would know it was OK.

Now, he did point out that I could have a biopsy right away, but at that point it would still require to open the chest. So, I got a 2nd opinion and when when he agreed, I went with the "wait and watch."

At the first 3 month, there was questionable growth. That coud be explained by a different slice width on the scan. Doctor recommended continue watch program. I was scared of course, but didn't want to think it could be cancer. I felt fine. I didn't want to have any major cutting on this body. I hate pain!

Next time, the little bugger had grown! And, in the direction where it could now be accessed with a long needle for a biopsy.

This was Nov., 2000. After getting everything set up with radiology and insurance, I had my biopsy Dec. 21, 2000. I wouldn't let myself think it could really be cancer, not after all the good reassurances.

My report came on Dec. 22nd that year. Not an easy Christmas. With my husband and family, We got through. After all, we had 8 grandchildren to see for a Merry Christmas.

My surgery to remove the left upper lobe with the cancer was done Jan. 9, 2001. Yes, it was alot more painful than the ankle surgery.

My whole point here is that early screening is necessary! When I ask my pulmonogist about this, I got the same "It can't be demonstrated that routine CT scans reduce the mortality of lung cancer. And people end up having unneccesary procedures that can do damage or cause mortality. Blah, blah, blah." I argue with him all the time.

I think my case demonstrates just the opposite. Nobody rushed into any unnecessary medical procedures. My tumor was still stage one when removed. The doctor was able to tell me that it was a very small mass in the beginning, and was able to monitor it properly.

I think I have just given you my story. I started out just to say somethinng about needing to get the info out there. The early stagers have a responlibility to do this. Think how lucky we are to have our cancers gone. We know all the emotions a lung cancer diagnosis carries with it.

And the stigma has got to go! (I have another story there.) Am too tired to write any more.

Look forward to getting to knpw you.

Rita B

[Donna G]

I really don't think the majority of lung cancer patients are diagnosed in Stage I . If that were true then the "stats" of 90 % die within the yr that they are diagnosed would not be true. The majority of the time there are no early symptoms causing you to go to the doctor or would prompt the doctor to order tests as CT of the chest. We are back to what we all should know by now more people die of lung cancer than breast, colon or prostrate ( all of which have screening tools done to everyone) and lung cancer has no accepted screening test. Also 50 % of the people diagnosed with lung cancer do not smoke. Many never smoked. Many of us are begining the fight to educate the public about this . If you have been touched be this terrible disease or have a love one who is please join us.

[bobmc]

Hi all;

Boy, all these posts really got me to thinking and I usually try not to question the why's, ya know, just stay grateful for the todays; If that makes sense; I guess, as a result of the cancer, I've really grown spiritually. I'm kind of learning to put one front in front of the other, to watch my expectations and leave the results up to God. Just seems to work OK for me, although its not always easy to do.

Anyway, Rita thanks for the story, I absolutely agree with you. I'm also an "early stager", and my cancer was also found by an x-ray. The dr. first dx.ed me with the flu, but ordered the x-ray because he new I smoked (quit the next day), and wanted to be sure there was nothing else going on. Very, very, grateful he did, as they dx.ed the cancer 4 weeks later after a broncoscopy. So, when I hear that x-rays or CT scans arn't proven to improve overall life expectancy, I say bulls---t.

Unlike you, though there was no wait and see. The nodes in the center of my chest were enlarged and they didn't know if it was the spread of the cancer or the infection (was dx.ed with pneumonia not flu). Anyway, I saw a surgeon who proposed doing a mediastinoscopy to find out. If the nodes were cancer free he was going to roll me over and operate on the lung if not I'd be a late stage and a candidate for chemo or radiation. Boy, I can still feel the fear, I blacked out in his office as he was explaining this to me, talk about being overcome by the anxiety. They took the left lung and 18 nodes the same day. I was staged at a IIB because they found the cancer had just started to spread to one node that was inside the lung.

That was almost two years ago, and like I said I've become real spiritual as a result,

Wow, didn't mean to go on like this;

I like what someone said about being there for other people, I feel the same way. It's very important for me these days to be able to share what it was like for me. Like I said, I remember the fear and there was a survivor who helped me when I was first dx.'ed. She was a saint and SHE GAVE ME HOPE!!; Ya know, led me to believe that cancer was not a death sentence. Anyway, I'm rambling, it's good to be here!

God Bless & be well

Bobmc - NSCLC - stage IIB - left pneumonectomy 5/2/01

" absolutely insist on enjoying life today!!"

[NancyJ]

Screening is an absolute must, especially for those at risk for LC. My own story supports this. (But I know of people at risk for LC who did not sign up for the free screening via low dose spiral CT scans in NYC. And I don't know why.)

I am another Stage 1a LC survivor. My nodule (~1 cm) was picked up on a chest x-ray that my then MD ordered as part of my physical. My surgery to remove the lower right lobe was on March 21, 2001 (DX=adeno). Follow-up CT scans have caused great anxiety. The first, six months after my surgery, showed enlarged lymph nodes in the mediastinum and a new 3-4 mm nodule in the right, upper lobe. A PET scan indicated that the lymph nodes were not cancerous, but could not determine the status of the nodule because it was so small. The results of the next three CT scans were good: the lymph nodes had become alot smaller (normal) and the nodule remained stable. The most recent CT scan in the beginning of this month, however, indicated a new 4 mm nodule had formed, a finding that my oncologist termed "worrisome." After consulting with my local surgeon and with one at Memorial Sloan Kettering (I want to stay ahead in any decision making! Read: very nervous), I have decided to wait and get another CT scan in May. If the nodule grows, I'll have surgery again (ugh); if it doesn't (lets hope for this outcome), I'll wait another 3 months...and get yet another CT scan. (So Dave, I can appreciate the anxiety you're having now. Unfortunately, the fear of recurrence will be with us all for awhile.)

This is a long-winded way of saying that screening does work!! I was lucky that the first nodule was found early, that my MD had all smokers have a chest x-ray as part of the annual physical and that the CT scans have picked up potential problems early! (Too many LC survivors only have chest x-rays as part of their follow-up!)

And Dave, I also agree with you when you say you "feel unworthy of even being associated with lung cancer." I haven't had any chemo or radiation so I can't fully appreciate what others are going through. I guess I feel a little guilty....and I am also a little reluctant to respond to many of the posts although I am rooting...and praying for... everyone of us here.

[NancyJ]

Screening is an absolute must, especially for those at risk for LC. My own story supports this. (But I know of people at risk for LC who did not sign up for the free screening via low dose spiral CT scans in NYC. And I don't know why.)

I am another Stage 1a LC survivor. My nodule (~1 cm) was picked up on a chest x-ray that my then MD ordered as part of my physical. My surgery to remove the lower right lobe was on March 21, 2001 (DX=adeno). Follow-up CT scans have caused great anxiety. The first, six months after my surgery, showed enlarged lymph nodes in the mediastinum and a new 3-4 mm nodule in the right, upper lobe. A PET scan indicated that the lymph nodes were not cancerous, but could not determine the status of the nodule because it was so small. The results of the next three CT scans were good: the lymph nodes had become alot smaller (normal) and the nodule remained stable. The most recent CT scan in the beginning of this month, however, indicated a new 4 mm nodule had formed, a finding that my oncologist termed "worrisome." After consulting with my local surgeon and with one at Memorial Sloan Kettering (I want to stay ahead in any decision making! Read: very nervous), I have decided to wait and get another CT scan in May. If the nodule grows, I'll have surgery again (ugh); if it doesn't (lets hope for this outcome), I'll wait another 3 months...and get yet another CT scan. (So Dave, I can appreciate the anxiety you're having now. Unfortunately, the fear of recurrence will be with us all for awhile.)

This is a long-winded way of saying that screening does work!! I was lucky that the first nodule was found early, that my MD had all smokers have a chest x-ray as part of the annual physical and that the CT scans have picked up potential problems early! (Too many LC survivors only have chest x-rays as part of their follow-up!)

And Dave, I also agree with you when you say you "feel unworthy of even being associated with lung cancer." I haven't had any chemo or radiation so I can't fully appreciate what others are going through. I guess I feel a little guilty....and I am also a little reluctant to respond to many of the posts although I am rooting...and praying for... everyone of us here.

[Guest Estrea]

Well, guys, we may be few in numbers, but let's face it we have power! We have been through hell and will continue to live with the psychological problems of recurrence always hanging over our heads, but we are ALIVE! That gives us power to make things happen. I keep hoping other early stagers like me will want to take up the charge and do something. I started this organization and site to make a difference, but haven't been able to do much since the birth of the twins and now with the impending move. But, you guys, especially retired ones, can lead the charge and get the rest of the people on this board motivated.

Instead of feeling guilty, let's take the lead...something people still in treatment with lousy diagnoses can't!!!!

What do you all think?

[Guest Janet W]

1 cm? Less than 1 cm? Mine was almost double that size at 1.8 cm - I was told THAT was tiny, but 1 cm is about half -

I wish mine were only 1 now -

Think the bigger the tumor is, the more chance of it recurring?

[john]

Janet,

I have read there is a lot more than tumor size for predicting the recurrence. The grade of the tumor is important. Also was there a lot of vascular invasion (blood vessels) in the tumor. If there are a lot of blood vessels around the more likely the tumor could have slothed off cancerous cells to other areas. There are other factors like is there a p53 mutation or HER2 is important in brest cancer and I think possibly LC. Since you have a specimen of the tumor try to make sure they do enough tests to figure out if adjunctive therapy is necessary.

The life extension foundation recommends getting a P53 staining and a RAS oncogene test. If these are positive it is not good, but it is probably better knowing because there are some vaccines and other clincial trials that exploit those targets.

just my 2 cents

John

[Guest tcandy214]

i think my tumor was 2cm and agressive but had symptoms scince 2000 misdiagnosed with toracic outlet syndrom it was probably only mm at that time diagnosed 3/2002 with the lung cancer

[Gina D.]

Well, I will chime in a new early stager!

I find it good to know that there are others in this stage, as I was told by the medical community that it was rare to have this caught so early, and at such a young age. (43 at DX) In reading here, I see I am not alone, and a lot of you share my setiments and yes, even "guilt" for it being so early. My nodule too, was only 1 cm and was staged at 1a. (adeno)

Also, it was caught on a routine chest ex ray and due to my smoking history, and a history of spontanious pneumo thoraxs in that lung, the radiologist pushed for further investigation. The rest of my story matches all of yours, with the exception of some surgery complications.

I am recovering from a lobectomy (Lower Right) and will return to my regular life and work on Tuesday the 3rd of June.

I would appreciate any advise on future expectations! I have been given NONE by my primary care physician, or the surgeon. I was told I was "virtually cured" and no more was needed due to the size of the nodule and stage of the cancer.

I am going to seek a second opinion, as well as change my PCP, as I can see that that isn't the protocol for follow ups etc, and you would think they knew that I have not even seen an oncologist!

Any suggestions? THX!

[gail]

As a Stage 1A, NSCLC, I will tell you I'm still seeing the oncologist after 2 years!!! I am at 4 month intervals instead of 2, but he was insistent on being followed at a regular interval.

[bobmc]

Hello again Gina, sent you a welcome note on the newcomers board

Anyway, just wanted to echo what Gail had said; I've also found it real important to be seen by an oncologist at regular intervals. Cancer, can be a real sneaky beast, microscopic cells can be carried by blood or lymphatic fluids and start the whole nightmare over again. Don't want to be an alarmist, but thats pretty much what my surgeon told me. ; Although, with a stage I the likelyhood is small but still there.

I'm checked at 3 to 4 month intervals, with ct scans of the brain, chest and abdomen done every 6 months ( they were done every 4 months for the first year ) along with bloodwork and x-rays. At the other 3 month interval I just have bloodwork and x-rays taken. Now, I was a stage IIB,( squamous type) and had the left lung removed so a bit more advanced.

I think your right to seek a second opinion and to see an oncologist. Let us know how you make out.

God bless and be well

Bobmc - NSCLC- stage IIB - left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

[NancyJ]

Hi Gina..

After my surgery, I was told that my PCP would follow me but his idea of a follow up was a chest X-ray every six months or so. Since the cancer can recur, I sought out an oncologist who sends me for CT scans. And am I glad I did! Another tiny nodule appeared on my March CT scan...and it will be removed if it grows (so far it's been stable in the May scan). It would not have been seen on an X-ray! So... I highly recommend that you find an oncologist.

Nancy

DX 3/01; Stage 1a; adeno; no chemo or radiation

[Guest Estrea]

I am 4 and 1/2 years out and I still see an oncologist! Plan to til it's been seven years. Even if there is the slightest chance of a recurrence, here are my reasons:

- I want to have that relationship in place so we can go to work right away.

- He can pick up things they can't find on a CT through the blood work

- He and I keep talking about things...I learn about new treatments and what can be done for me if I ever need it

I highly recommend seeing one ASAP. I was also told not to bother, but I didn't listen for all the reasons I just stated!

[Gina D.]

Hello everyone!

It's been awhile since this issue, eh?

I have seen an onc. He agreed with what the surgeon said, no chemo or rad is warranted, tho it is an option. I have decided not to at this time.

I do have regular follow ups scheduled, an xray and blood work every 3 months, with a CT every 6. I am doing my blood work tomorrow as a matter of fact.

I also INTEND to do a pet once a year, out of my own pocket. It's 3k at Loma Linda and insurance won't cover for routine checks. I will ask the onc. if he can swing it, but I doubt it.

This sounds a pretty standard course. Am I right?

[Guest Estrea]

Yes, it is a standard course of treatment. Most oncs don't recommend chemo and I for one was not at all sorry that I didn't have to have it. However, there is new research that says that it does help increase survival chances. Here is a link to an article on it:

http://www.cancersource.com/NewsFeature ... ntID=27197