Hello from Portland, Or

[Kaffie]

Hello to all, I've been reading your posts for awhile now, I come here when I need to feel there really IS hope. I want to compliment all of you for your strength, possitive attitudes and willingness to help others feel like they are not alone in this battle.

I'm a 52 year old mother of 3 sons and 2 grandchildren. I lost my father 4 years ago to small cell lung cancer. He was diagnosed and gone within 5 weeks time.

I had surgery in July for lung cancer, it turned out to be a T1 N0 M0

adenocarcinoma. They took out the lower left lobe. I am reading so many conflicting treatment options and prognosis that I'm more confused than ever.

My doctor says there is an 85% cure rate, my surgeon says an 80% cure rate for my particular type of cancer but that's definately not what I'm finding on the internet.

My surgeon says his panel of oncologists says I don't need chemotherapy but I've been reading that it is being used as a preventative measure to try to avoid a recurrance. Needless to say I'm very confused and not embarrassed to say very scared. I've also heard about a chemo pill and I am very interested in that.

Hope to hear back from you

Thanks

Kathy

[kate1621]

Hi Kathy

Welcome. Sorry you have to be here, and my condolences re: the loss of your dad.

I'm very new here, so unfortunately, I have no words of wisdom re: your treatment. The folks here are a wealth of info/support/kindness, and I'm sure others will chime in soon.

Wishing you well,

Kate

[Justakid]

Kathy -

There are so many different treatments that you find depending on the Doctor's. I am stage 3A, had surgery to remove the lower left lung, three lymph involved (2 in the lung and one in the center chest). I had 33 rounds of radiation and 6 weekly chemos, now I am starting 4 "full strength" chemos. Don;t see this treatment that often on the board where the additional 4 treatments are being done.

When I was initially diagnosed Stage 1, I was still going to have chemo as a preventative measure. My Dr's have said through this entire thing that I was young and healthy and that they would throw everything they had at me so that there would be no regrets.

It is your decision totally and I don't want to push my opnion on you. If it was me, I would want the chemo, just to make sure and have no regrets. The surgery was a bear (I know) why not give it an extra boost.

Good luck!

[Donna G]

Hi Kathy, welcome. I am so sorry you lost your Dad and now have to cope with lung cancer yourself. I think I have read that about 40 % of Stage 1 lung cancer patients can have disease show up again within a year. There is a doctor here in Minnesota working on developing a test for micrometastasis to find these people who need chemo. Because on the risk some doctors are recommending chemo, some others feel it is a lot to put someone through when the majority don't need it. Good luck and keep us posted. Donna G

[MurielK]

Hi Kathy,

Sorry you need to be here, but since you do, I think you'll find this website very, very helpful. My tumor was a stage IB - barely. It was only 3.1 cm (2 mm less and it would have been IA). My surgeon said I was cured, go home and forget about it. The pulmonary specialist said I could see an Onc. if I wished, or just have a CT scan every year. I went to an Onc. who recommended CT scans every 3 months, to begin with, and chemo (carbo & taxol). I decided better safe than sorry and did the chemo. Several people on this board who had surgery about the time I did (June 2003) have had the cancer return - so it does happen, regardless of what the surgeon says. As I understand it, following the ASCO (Amer. Soc. of Clinical Oncologists) meetings this June, chemo for stage 1 tumors is considered the "gold standard" of care.

It's unpleasant, but surviveable (it that a word?).

Good luck!

Muriel K

[marisa]

Hi Kathy, I too was diagnosed at the same stage as you and had my upper right lobe removed. My Dad also died of lung cancer, five weeks after diagnosis. I was given the same percentage as you regarding reoccurance. In November it will be four years from me and so far (knock on wood), there has not been a reoccurance. I came out of surgery feeling very positive that I was totally cured. At the time there was no mention of reoccurance until I resumed trying to get my permanent residency here in Australia. I had to see specialists to determine the likelihood of it returning. That is when I was put at the same percentage that you were told. I have noticed before on the board that Donna G has quoted the 40% reoccurance. I have to say that every time I see her post that to someone who is new to the board and scared that it makes me very angry. I would like her to actually post that statement that she says she has read. At least now she is saying she "thinks" she read it someone. She used to quote it as a "fact". Don't let the fear of a reoccurance run your life, which can very well happen if you let it. Consider yourself very very lucky (as I do), that it was caught so early and try to get on with your life. I wish you the best.

[Don Wood]

Hi, Kathy, and welcome. Don

[Kaffie]

Thank you all so much for your replies. I see I still have alot of thinking to do. I will definately see an oncologist and I think my best bet would be to get a 2nd opinion on whatever the he/she has to say. Then go with my gut feeling.

10 years ago my husband was diagnosed with a grade 2-3 astrocytoma (brain cancer). It was inoperable so he had radiation and then started chemotherapy. He was one of the unlucky people who had a severe toxic reaction to it and ended up in the hospital with his lungs literally dissentegrating. He was given a 50/50 chance of surviving the toxitity to the chemotherapy. He did survive but is low on breath most of the time.

I have such mixed feelings about the stuff, it can be a lifesaver for so many and a killer for others.

I feel so happy for those of you who have survived this awful stuff and pray for all of you in the process of hitting that survivor stage. I know I need to slow down my internet researches, how can so many hospitals have such different prognosis for the same disease?

My surgeon did tell me that the recurrance rate for the first 2 years was 20%, and after that it would drop each year until 5 years when I could consider myself cured. Such a long wait!...

Thank you all for your comments and just taking the time to read my post, it helps so much.

Kathy

[teresag]

Re: Marisa's remarks.

There is variation in the literature. A recent study from Italy did not give numbers, but stated a "high local recurrence rate." There were only 121 pts. in the sample, so take with a lump, not a grain, of salt.

Authors

Campione A. Ligabue T. Luzzi L. Ghiribelli C. Voltolini L. Paladini P. Di Bisceglie M. D'Agata A. Gotti G.

Institution

Department of Thoracic and Cardiovascular Surgery, University Hospital Le Scotte, Siena, Italy.

Title

Comparison between segmentectomy and larger resection of stage IA non-small cell lung carcinoma.

Source

Journal of Cardiovascular Surgery. 45(1):67-70, 2004 Feb.

Abstract

AIM: Stage IA non small cell lung carcinoma (NSCLC) represents early cancer and is best treated by surgery. The frequency of recurrence and new primary cancer varies from one report to another while the role of sublobar resection is still debated. METHODS: We retrospectively reviewed 121 consecutive patients with pathological stage IA after radical surgery. RESULTS: In stage IA NSCLC 1-, 3-, 5-year survival rates were 89%, 76% and 66%. Nearly half of the deaths were unrelated to the original cancer. From statistical analysis we did not find any factor indicative of a better prognosis. We did not find any difference in survival between histologic types. Segmentectomy did not show a worse survival rate compared with larger resection. CONCLUSION: Survival is neither influenced by the type of resection nor by the histologic types in stage IA. However, we noticed a high incidence of local recurrence. Segmentectomy could be a viable choice in patients with cardiopulmonary impairment.

A larger study from Korea produced fairly low recurrence rates, in a sample that included later-stage cancers.

Authors

Jang KM. Lee KS. Shim YM. Han D. Kim H. Kwon OJ. Kim J. Kim TS.

Institution

Department of Radiology, Sungyunkwan University, School of Medicine, Seoul, Korea.

Title

The rates and CT patterns of locoregional recurrence after resection surgery of lung cancer: correlation with histopathology and tumor staging.

Source

Journal of Thoracic Imaging. 18(4):225-30, 2003 Oct.

Abstract

The purpose of our study was to assess the rates and CT patterns of locoregional recurrence after resection surgery of lung cancers according to histopathology and tumor staging. Three hundred and seventy nine patients who underwent lung resection surgery due to lung cancer in a recent 6 year period were followed up with CT (at 3, 6, 12, 18, 24 months, and then annually after surgery) for evaluation of locoregional tumor recurrence (analysis of hilar or mediastinal lymph nodes and surgical margin including bronchial stump, pleura, and chest wall). The recurrence rates and CT patterns were compared in terms of underlying histopathology and tumor staging. Of 379 patients, 75 (20%) patients had locoregional recurrences. The recurrence rates were higher in squamous cell carcinoma (39/190, 21%) than adenocarcinoma (24/140, 17%) (P = 0.012). The patterns of recurrence in 75 patients were hilar-mediastinal lymph node enlargement (n = 39, 52%), ipsilateral pleural lesion (n = 24, 32%), chest wall lesion (n = 13, 17%), bronchial stump lesion (n = 8, 11%), and bronchial extension including the trachea (n = 3, 4%). Bronchial stump recurrence was seen only in squamous cell carcinoma. Bronchioloalveolar carcinoma did not show any evidence of locoregional recurrence. Pleural (P = 0.0016) and mediastinal nodal (P = 0.001) recurrence, respectively, were more common in N2 than N0 cancers. Chest wall recurrence rates were higher with higher T staging (P < 0.001). The locoregional recurrence of lung cancer occurs in about one fifth of patients who undergo curative resection and is more common in squamous cell carcinoma than in adenocarcinoma. Recurrent patterns are diverse and different according to histopathologic type and pathologic staging of lung cancer.

Finally, an American study in 203 patients suggests fairly low recurrence rates, but followup was only 1 1/2 to 2 years:

Authors

Santos R. Colonias A. Parda D. Trombetta M. Maley RH. Macherey R. Bartley S. Santucci T. Keenan RJ. Landreneau RJ.

Institution

Division of General Thoracic Surgery, Department of Radiation Oncology, Allegheny General Hospital, 320 E. North Avenue, Pittsburgh, PA 15212, USA.

Title

Comparison between sublobar resection and 125 Iodine brachytherapy after sublobar resection in high-risk patients with Stage I non-small-cell lung cancer.

Source

Surgery. 134(4):691-7; discussion 697, 2003 Oct.

Abstract

BACKGROUND: Sublobar resection (SR) can be performed in high-risk non-small-cell lung carcinoma (NSCLC) patients but is associated with an increased local recurrence. This abstract reviews our intraoperative (125)Iodine brachytherapy experience after SR in high-risk Stage I NSCLC patients and compares these results with our previous series of SR alone in similar patients. METHODS: One hundred two Stage I NSCLC patients who underwent SR alone were compared with 101 Stage I patients who underwent SR and intraoperative (125)Iodine brachytherapy placed over the SR staple line. CONCLUSION: Local recurrence after SR and (125)Iodine brachytherapy (2%) in high-risk Stage I NSCLC patients was significantly less than after SR alone (18.6%). This safe, pulmonary function-preserving and practical intraoperative brachytherapy method should be considered when SR is used as a "compromise" therapy in these patients.

So, I think the jury remains out on the rate of recurrence after resection for Stage 1A lung ca. Remember that when studies cite survival statistics, they typically include deaths from all causes, not just recurrence. If you asked me, I'd say put the most weight on the most hopeful numbers, because therapies are improving all the time, and the study patients were treated before you, most likely. The time it takes to plan, conduct and analyze data, and get it published presents a lag during which therapies are refined.

[Kaffie]

teresag,

Thanks for taking the time to post those studies. I have done some searching and I agree the jury is still out. I guess I'm one of those patients who is basically a roll of the dice, there is no cut and dried method of treatment.

I notice you are from Portland, if I remember correctly you responded to a man from Portland not too long ago who had his treatments at portland Providence on 47th and Glisan. You knew or knew of his oncologist, she is one I may try to get a chance to talk to.

My surgery was done by Dr. John Handy Jr. I know he is one of the best surgeons a person could hope for but I did get the impression that he's not sold on the chemo and is currently doing a study. You're right, it does take awhile to get a study published, Dr. Handy said he is finishing up a study but hasn't had the time to get it written for publishing yet. That IS another thing to think about.

He works closely with a Dr. Deville who came to see me while I was in the hospital and I had asked him about chemo and he responded that it would add an extra 5% chance for survival but when I mentioned it to Dr. Handy he said there is no positive evidence to support that. I certainly didn't tell him it came from his assistant.

I do see my physician on the 16th, I want to get his thoughts on the subject.

Thank again for the studies

Kathy

[Kaffie]

teresag,

I submitted before I got the chance to tell you how sorry I am about your father. I do know the feeling of that pain, I miss my father so much.

Also what a sweet looking cat, I lost mine this last summer. She was 17 and had a good, healthy long life, she died of old age.

Kathy

[mhutch1366]

Kathy,

I lost a good friend last spring, who had an early stage lung cancer removed but couldn't get chemo or radiation due to financial/insurance concerns. She would have liked to. It would have been her 3 year anniversary.

I have a gut feeling about taking out all the insurance one can to prevent recurrence. Once it returns, if it does, it apparently is caught as a stage 3 or 4 and is harder to treat.

One incident stands out in my mind. A nice man in his 30s came to our support group (for all cancers), and he was very very sad. His wife had had ovarian cancer, early stage, removed by surgery 3 years previously. She was a nurse, and she chose homeopathic treatments over conventional chemotherapy/radiation or whatever the doctors would have offered her. She was diagnosed 3 years later as stage 4, and only now was willing to consider the chemo etc etc in addition to homeopathic remedies. I remember this because this grown man was so grief stricken and shellshocked, and because I was floored absolutely that his wife had chosen homeopathy alone to combat this disease.

Of course you should do what you think best, but I fully believe in hitting the beast very aggressively, the earlier the better. Otherwise is like Russian Roulette, and the cost is too too high for too many.

Just my opinion.

God bless and keep you,

XOXOXOXOOX

MaryAnn

[close to the edge]

hello

although i am a bit younger than you i also have/had the same cancer in the same location but my tumor was slightly larger

my surgeon also stated the same facts and felt that i did not need chemo

he stated it would ONLY improve my chances of LONG TERM survival by 5%. ( it may not be much but hey dont you want the best odds) He felt i was cured. that is a surgeon speaking. He did his job and other thatn post op check ups thats all i see of him. the surgeon however does not work with cancer every day. after consulting with my onc and doing reserch of my own i felt that being sick for a little longer now after the surgery and improving my odds of survival was worth all the side effects that chemo would give me since it would kill any microscopic cancer that may have escaped the surgeons scapel. My onc felt since i was so young i should do anything that would improve my chances of long term survival. I have to agree with her.

As others have said it is a personal decision

I chose to do the chemo and althoug it was rough doing it now that i am done i feel great and pray that the chemo got the b stered

good luck in making your decision

Ann

[Kaffie]

Mary Ann and Ann,

You both have very convincing examples of the possible benefits of chemo treatment. I just talked to my mother and she is 100% for chemo.

Sorry about your friend Mary Ann, money should never have to be a factor when it comes to health care but unfortunately it seems to be the main factor. She deserved care as much as any of us.

Ann, what our surgeons call ONLY 5% is a huge percentage to US when it's our lives we are talking about. I would imagine if it were them they'd give themselves every advantage they could possibly get.

When I got home after my surgery I started to feel worse every day and my breathing was geting more difficult. I went back in the hospital and had developed pneumonia and a Plurel effusion which had empyema in it. I stayed in the hospital another 8 days. I had a chest tube which was one of the most painful things I've ever had. I don't know what causes that but I hope I never have to deal with that again.

Kathy

[paddy]

So sorry to hear that you are having such a difficult time Kathy. I hope you sort things out and get the very best treatment that is out there, even if it means finding a new Onc. who is willing to work with you. It sounds as though you have been lucky enough to catch this thing at an early stage.

Many of the Internet articles are out-dated so don't let them panic you as far as statistics are concerned. Prayers and positive thougnts coming your way. Paddy

[Kaffie]

Thanks Paddy,

Yes, I'm learning to take most of the articles I read on the net with a grain of salt, I see they are out dated. With lung cancer even a year seems to be outdated, it changes so fast. Statistics don't seem to mean as much as a positive attitude and a determination to win the war.

With all you and your husband have been through I think you are a perfect example of that.

Thanks for the prayer and of course I'll be adding you both to my list when I say my prayers.

Kathy

[David P]

Hey there Kaffie Kathy.

However many percentage type statistics are floated around out there by the professionals on your chances of survival, try not to get too caught up in them. Since I have been on this message board I have witnessed many, many cases of willful disregard, as people continue pay no attention to their onc's stats, and put themselves at risk of living a further 9, 12, 14, and even 27 years (me) longer than "Mr. Statistics" said. I believe that the power of the human spirit can in itself affect survival rates. And that's all I have to say about that. Take care.

David p.

[Kaffie]

Love your post! You made my day, thanks for the big smile that crossed my face when I read what you had to write.

I'm so happy for you, 27 years and thank you for staying with this board to let us all know that we CAN do it.

Kathy

[betplace]

Kathy,

I have nothing to add to help you with your decision, as I have a totally different kind of LC (small cell). However, i would like to welcome you to our board and send you a big ((((Kathy)))) hug and some prayers to help you recover from the surgery.

Blessings

Betty

[Remembering Dave]

Kathy, welcome aboard, David P is vey wise and has vey good advice. I have SCLC so I eally don't have any idea what to tell you about your particular situation. It sounds as if the Chemo may have some benefit. My attitude is if a treatment will help me stay one more day on this earth with my wife and daughter then I want it. I had preventative Brain Radiation which is pretty controversial but if it improves my chances by 5% or even 1% Then I would do it again in an instant. Please let us know what you decide. You will be in my thoughts and prayers.

David C

[Lisa O]

Welcome!

Good for you in being proactive and checking out all of your options early on! We have a very nice group of "early stagers" here who post in the early stage section with the issues you raise (and of course they post everywhere else too )! I'll keep an eye out for you.

[Kaffie]

Thanks Betplace, David and Lisa.

I imagine sclc puts you through more of faith and courage than you ever knew you had. Prayers and thoughts right back at ya! I feel like a whiner when I see how much you've gone thru and yet you take the time to come back here to encourage us. This forum is like a gift from above, one thing I have learned real quick is the only people who understand are the one's who have been through it.

Bless you all!

Kathy