marisa Posted November 6, 2003 Share Posted November 6, 2003 Hi there... I was diagnosed with non small cell lung cancer in November 2000 and subsequently had surgery to remove the upper right lobe of my lung. It was at Stage 1A. I have recently had a chest xray and now that it is three years since surgey I only have to have one once a year. The chest xray came out clear. I had not been back to the doctor for two years because I was terrified. Sort of like an ostrich with its head in the sand. The only reason I did go for the chest xray was because I was forced to go because I am immigrating to another country and in order to proceed with my permanent residency they required a doctors report. How does everyone here deal with the anxiety and worry? Every little pain I have a think it is mets. Even tho my xray came back clear I have this pain (where my liver is)... and pain on the right side in the rib area. Of course I am thinking that the xray missed something. I'm just a basket case. Now I'm thinking that they missed something.. that perhaps I should have had a pet scan or cat scan. But I'm terrified to do that cause I don't want to know if it is there.. Crazy or what? I have found that the diagnosis and subsequent surgery for lung cancer has totally changed my life. I am constantly living in fear now. I guess I should count my blessings that it was found early and that the prognosis was good.. so many people are in alot worse situation than me. Thank you for letting me vent. Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 6, 2003 Share Posted November 6, 2003 Hello, I am sorry to say that if the only thing you have had since surgery is a couple of xrays, You need to get a CT. You still would want to get any tumor early and I am sorry to tell you that most tumors do not show on xray very early or perhaps at all . You did not say you had any chemo. Of those staged 1A 40 percent have disease show up within a year if they have not had chemo. Believe me we all know how hard it is to wait for test results but you will live better if you know for sure this disease has not reared its ugly face again. Good Luck and BEST wishes Donna G Quote Link to comment Share on other sites More sharing options...
ninabajor Posted November 6, 2003 Share Posted November 6, 2003 "I have recently had a chest xray and now that it is three years since surgey I only have to have one once a year. The chest xray came out clear." My husband was diagnosed with stage IV NSCLC in August his chest Xray came back unremarkable! I would have a CAT scan done! Best Wishes, Eileen Quote Link to comment Share on other sites More sharing options...
candee Posted November 6, 2003 Share Posted November 6, 2003 Marissa, As you said you are not really dealing with the stress - you are hiding from it and not very well, according to your description. Get regular CT Scans. Deal with the reality. Much easier than dealing with the unknown. Just think how much better you will feel to know there is nothing there or if per chance there is, just exactly what it is you are dealing with and what can be done about it. Cancer is not an absolute death sentence, unless you let it be. It can be fought very successfully nowadays and new treatments happen conatantly. I know a woman that was diagnosed with Stage IIIB NSCLC 8 years ago - and still going strong. This is not done by hiding in the sand!!!!! Good Luck to You! Get that smile back on your face! Knowledge is Power! Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted November 6, 2003 Share Posted November 6, 2003 Dear Marisa, The biggest fear we face is fear of the unknown. Please, follow up on your cancer post-op scans, and deal with fact, not fearful imaginings. Our imagination sometimes I think is our worst enemy. Welcome to the board. Sure, I am terrified at times, but I cannot live hiding under the bed. Cannot see the small everyday blessings from there either. Won't you come out and join us ? We often find inner resources to deal with adversity that we didn't know we had. I would bet that if you make up your mind to face your scans and deal with the results, you will find a peace you haven't had since surgery. I never know when the other shoe is going to drop, and they're going to find something. I accept that. In the meantime, life is that much more meaningful and precious. Good luck and God bless. I wish you well. MaryAnn Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 6, 2003 Share Posted November 6, 2003 My mother had chest x-rays done each year and they were all clear. In Sept. of this year she was diagnosed with Stage IV Non-small cell LC! You must have a CT scan done immediately. All the best to you. Kim Quote Link to comment Share on other sites More sharing options...
marisa Posted November 6, 2003 Author Share Posted November 6, 2003 Hi everyone... thank you very your replies. Donna, I would like to know where you got your statistics re 40% chance of cancer returning within a year for stage 1A without chemo. I was told by my my oncologist and my surgeon that chest xrays were only required... every three months for the first year... every six months for the second year and yearly thereafter. My nodule was found via a routine chest xray and it was very small.... 1.4. I was told that in my case as I assume with everyone with stage 1A that there was an 85% survival rate for five years. Please tell me if my oncologist and surgeon are wrong. Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 7, 2003 Share Posted November 7, 2003 There have been many articles discussing the need for chemo for stage 1 this past year. I have been fortunate to attend the Twin Cities Thoracic Onocologies Consortium Events held here . It is a day long lecture on different topics held every 6 months. In October 3, 2002 Michael A Maddaus MD, Professor and Researcher at the University of Minnesota spoke on " Molecular Staging of Non-Small Cell Lung Cancer" I have saved the book they gave us from that day. Survival after surgical resection of non-small cell lung cancer is determined by postoperative pathologic stage: only 60 to 70 % of stage I patients ( lymph nodes negative) survive 5 years. The standard therapy of patients with stage I NSCLC is surgical resection of the primary tumor without adjuvant therapy. Even after complete resection the poor 5 year survival is mosly attributable to recurrences from distant metastases. This likely underscores the high rate of micrometastases in " early stage " lung cancer that were no appreciated at the time of original resection. Now this lecture was to tell us his research that he is doing to develop more reliable staging. The use of RT-PCR to detect tumor - related mRNA . He also discussed CEA and how it has gained popularity as a marker of micrometastatic disease and lots more Here is a site discussing the new guidelines The following is an article, from Cancer Source, on Adjuvant Chemo for early stage LC, after surgery. http://www.cancersource.com/NewsFeature ... ntID=27197 _________________ Quote Link to comment Share on other sites More sharing options...
marisa Posted November 7, 2003 Author Share Posted November 7, 2003 Thank you Donna... for your "doom and gloom" prognosis. Anyone reading this board who chooses NOT to have chemo at stage 1A I'm sure would be pretty upset right about now. I will print off this thread and take it to my oncologist and see what he has to say. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted November 7, 2003 Share Posted November 7, 2003 Marisa, No need to "shoot the messenger", especially when what Donna has told you is 1. Correct, and 2. May help to catch any recurrence you might have at an early and treatable stage. After my first thoracotomy I was told by the surgeon (Holder of the Surgical Chair at UCLA Medical School, and Chief of Thoracic Surgery at UCLA Medical Center) that all I needed for followup was a yearly chest xray. Had I been foolish enough to believe that I would have had that follow up chest xray three months after what turned out to be my SECOND thoracotomy- done in April of 2000. And just for grins and to live a while longer I underwent a THIRD surgery-total pneumonectomy-in May of this year. I hope you really do have clear lungs, and I hope they stay that way. I hope that you are part of that very tiny percentage of Stage I lung cancer survivors who goes on to live many, many years. But don't assume that you won't have a recurrence. Be proactive....every thing I've ever read says that by the time it shows up on conventional xray it's too late. CT scans are much more sensitive. I am undergoing chemo now, because I now have angiolymphatic spread...something I didn't have during the first and second thoracotomies. Had I been given chemo (as I asked for) after either of the first two lung surgeries I honestly believe I would not be dealing with this now. I wish you the best... Fay A. Who knows the difference between "doom and gloom" and being vigilant. (It's why I'm still alive) Quote Link to comment Share on other sites More sharing options...
Eileen Posted November 7, 2003 Share Posted November 7, 2003 It appears that stage1A and 1B are being lumped together in the stats quoted---when you read down further ---for stage 1A it is 85% vs 87% survival----I too was told that I have an 85% to 95% per cent chance of it not recurring-by my surgeon and an oncologist----and the article confirms that for stage 1A it is 85% vs 87% ---based on this, this does not seem that it is possible to have a 40% recurrence rate when you are stage 1A--- I do not think that stage 1A survivors are a "very small " percentage-- Marisa, it was your decision whether to get chemo or not,and it may not have been offered , I have chosen not to and there are others on here also that have chosen that route--since you had your operation in November of 2000, there is no need to second guess yourself at this point--- some people it does reoccur in, there is not question of that---and in some, it does not---so do your research on your own and come to a decision about what is right for you---- I would though, recommend a cat scan just for your own peace of mind--- I know the feeling that every little ache and pain that we thought nothing of before diagnosis, seems like a met to us. good luck to you regards - Quote Link to comment Share on other sites More sharing options...
lynne Posted November 7, 2003 Share Posted November 7, 2003 Marisa, No one can make any decisions for you...that is something that only the patient can do...of course, you can listen to advise, do research..and talk to professionals to help you decide what to do or not to do, but the ultimate decision is yours and yours alone. You have to be able to be satisfied with whatever decison that you make, and not second guess yourself. there is no "what if's" .. I hope that you are doing research...talking to professionals..and praying about the decisions that are forthcoming...not those that are past. Sorry that you are having to go through all this...but do know that we are here for you...(I am very new here...but have already learned that this is a great source of support..and great people that will just listen when you need to get it out). Prayers for peace, comfort and strength go with you. Lynne Quote Link to comment Share on other sites More sharing options...
chloesmom Posted November 7, 2003 Share Posted November 7, 2003 Marisa, I agree with Fay--please don't shoot the messenger. I am a stage I who had surgery in June and just finished adjuvant chemo yesterday. It has been a long haul, not at all pleasant, but doable, and I am glad that I decided to take advantage of the chemo. I had cisplatin/gemzar 3 times and gemzar only 6 times. I am thankful that this was an option for me because, from what I understand, it was not even an option for Stage I people before this summer. I think that this is a personal decision--I wanted to know I was doing everything possible. After about a month passes and I am totally over the chemo and its effects, I will be taking selenium, a cox 2 inhibitor, and an antioxident. I hope that you remain disease free--- chloesmom Quote Link to comment Share on other sites More sharing options...
Eileen Posted November 7, 2003 Share Posted November 7, 2003 Dear Chloes Mom, sorry again, you were treated for stage 1B---Marisa was stage 1A---I do not think she was trying to shoot the messenger, merely questioning the stat that was quoted and we all agree that she should have a cat rather than an X-ray--I do not think that that was her point though -I think (and cannot speak for her) she was questioning the stat that "40% of stage 1 cancers recur in the first year) I do not believe that is true and question it also-, I am not shooting the messenger, merely- questioning the stat - when you look at the stats they are very different for stage 1A vs. 1B---even in the article cited. So it may be true for 1B but from everything I read, not for stage 1A--which is what Marisa was staged at regards and glad to see you made it through chemo and wishing you clean scans forever Quote Link to comment Share on other sites More sharing options...
Snowflake Posted November 7, 2003 Share Posted November 7, 2003 Just my two cents on using an annual x-ray: I had a chest x-ray in March, 2003, due to chest pain resembling a possible heart attack (yes, at 33...job stress can do that to you). Nothing was seen on the x-ray, nothing wrong with my heart and nothing else that was out of place... November, 2003, had a dry cough for three weeks, went to see my doctor because it wouldn't go away - started coughing up blood. Sputum tests, TB tests w/controls and a chest x-ray were ordered (chest x-ray to rule out TB, nothing else). X-ray showed pneumonia...a month later, pneumonia had cleared up, but the right lung showed a foggy area and my doctor wanted to "see what it was"... So I had a CT scan and she sent me to a thoracic surgeon for consultation on a mass - he said it could just be a lung infection, but wanted a piece of it... Turns out, the SMALL foggy area on the x-ray was something that had been growing for quite some time. Small tumor (2.7 cm, I believe) that was staged as IIIa upon removal of tumor, lobes and nodes.... I'm almost nine months out from surgery. A clear CT in December means I'm on to seeing the oncologist every three months instead of every other. I get CTs every four to six months with x-rays in between... X-rays do not show soft tissue or they wouldn't be easily read for broken bones.... I did NOT receive traditional chemo either before or after surgery. My oncologist said the side effects did not balance out what it added to my odds of "survival" (they're considerable lower than 85-87%). Second opinion wouldn't even agree to radiation (I did go through radiation after surgery and a trial for Iressa). Please don't put your head back in the sand another two years, where cancer is concerned, what you don't know can kill you. Best of everything to you, Becky Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 7, 2003 Share Posted November 7, 2003 Please remember the words given to us by our fellow member...t_beanes The Ten Commandments for Cancer Survival Paul H. Klein Excerpt from Cancer Shmancer Last Reviewed: February 5, 2002 1. Thou shalt regard the word, "Cancer", as exactly that: a word. Nothing more, nothing less. For its original meaning hast changed mightily over the years, as have such words as Smallpox, Tuberculosis. and Polio, all once dreaded ailments, now no longer fearsome for, to them, hast come The Answer. And thus, too, shall go thy cancer. The Answer shall come to those who shall be present to hear it. Be present to hear it when it comes. 2. Thou shalt love thy chemotherapy, thy radiation, thy monoclonal antibodies, thy vaccines, and thy other treatments even as thyself, for they are thy friends and champions. Although they may exact a toll for their endeavors, they are oft most generous in the favors they bestow. 3. Thou shalt participate fully in thy recovery. Thou shalt learn all the details of thy ailment, its diagnosis, its prognosis, its treatments, conventional and alternative. Thou shalt discuss them openly and candidly with thy oncologist and shalt question all thou do not comprehend. Then, thou shalt cooperate intelligently, and knowledgeably with thy doctor. 4. Thou shalt regard thy ailment as a temporary detour in thy life and shalt plan thy future as though this detour had not occurred. Thou shalt never, at no time, nohow, regard thy temporary ailment as permanent. Thou shalt set long-term goals for thyself. For thou will verily recover and thy believing so will contribute mightily to thy recovery. 5. Thou shalt express thy feelings candidly and openly to thy loved ones for they, too, are stricken. Thou shalt comfort and reassure them for they, too, needest comforting and reassurance, even as thou doest. 6. Thou shalt be a comfort to thy fellow-cancerites, providing knowledge, encouragement, understanding and love. Thou shalt give them hope where there may be none, for in hope lies their salvation. And by doing so, thou providest comfort for thyself, as well. 7. Thou shalt never relinquish hope, no matter how thou may feelest at that moment, for thou knowest, in the deep recesses of thy heart, that thy discouragement is but fleeting and that a better day awaits thee, perhaps tomorrow, perhaps the day after tomorrow. 8. Thou shalt not regard thy ailment as the sum total of thy life but as merely a part of it. Fill thy life with other diversions, be they mundane, daring, altruistic, or merely amusing. To fill thy life with thy ailment is to surrender to it. 9. Thou shalt maintain, at all times and in all circumstances, thy sense of humor, for laughter lightens thy heart and hastens thy recovery. This is not an easy task, sometimes seemingly impossible, but it is a goal well worth the endeavor. 10. Thou shalt have enduring and unassailable faith, whether thy faith be in a Supreme Being, in Medical Science, in Thy Future, in Thyself, or in Whatever. Steadfastly sustain thy faith for it shall sustain thee. Quote Link to comment Share on other sites More sharing options...
marisa Posted November 8, 2003 Author Share Posted November 8, 2003 Thank you eileen.. you were right.. I WAS questioning the 40% statistic and definately not "shooting the messanger". I was not told that there was a "very small chance" of it not returning. My surgeon was very optimistic and positive. I was told there was a very small chance of it RETURNING! I have decided to go for a CAT scan and I am very optimistic that the results will be good. The original nodule was found on a chestxray, not a cat scan. Thank you everyone for your replies. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted November 8, 2003 Share Posted November 8, 2003 Marisa, My apologies for misunderstanding your " Thank you Donna...for your "doom and gloom" prognosis..." statement. I was (erroneously) diagnosed as 1A back in June of 1999. I understand the fear of recurrence. I've looked it in the face several times now. I just know that being vigilant about follow up screening affords us all the best chance of early diagnosis of recurrence, and finding it early can mean the difference between surviving and not. The best antidote to the fear I feel is knowledge. We all handle things differently. Best Wishes, Fay A. Quote Link to comment Share on other sites More sharing options...
Debi Posted November 8, 2003 Share Posted November 8, 2003 Marisa, I just wanted to wish you well and let you know that you are not alone in your fears...I am the same. You might want to check the forum "Early Stage NSCLC"...you will probably find all the fears that you voice located there!! I think also that you have received some great advice on the board from our fellow woman survivors as far as getting a CT. Just think of the relief you will feel after you get the results and they are negative!! That is worth it alone for your well being...It will take some of the "punch" out of those other aches and pains. My Surgeon and Pulmonary Specialist also told me that I had an 80/85% chance of survival (my nodule was 1.3) and to get on with my life..that I was "cured". I have been in many threads here regarding adjuvent chemo and will spare all by not going on again . However, my choice after surgery was to follow what my surgeon and pulmonary specialist said...to not have it. I agree 100% with Eileen..the study did not really separate Stage 1a and Stage 1b and it is thought that there was no advance in survival rates among Stage 1a people that had the chemo. There WAS a 5% increase among Stage 1b patients. The decision to have adjuvent chemo is definitely a personal one...and neither right nor wrong...I have no regrets about not having it and if my cancer does come back, will still have no regrets. I hope that you will continue posting Marisa....its great to meet other survivors!!! Quote Link to comment Share on other sites More sharing options...
JudyB Posted November 9, 2003 Share Posted November 9, 2003 I had CTs every 3 months after I was "cured" with chemo + radiation, lobectomy and 2 more chemos. In August I began having unbearable pain in my back. An MRI showed squamous LC in my spine. 3 weeks earlier, I had a CT and was still considered NED! I, now, believe in getting MRIs along with CTs: 6 months each. We each do what we do from our histories. I now believe in getting every test I can. JudyB Quote Link to comment Share on other sites More sharing options...
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