baydreamer Posted September 9, 2004 Share Posted September 9, 2004 I have been reading posts here for about 3 weeks since my father has been diagnosed with nsclc. All of your words have been a comfort to me. I now know that there is hope from this monster. Dad was a smoker for 40 years but quit 7 years ago. About a month ago he started to cough up some blood. It started to worry him enough to visit his doctor. Xray showed a spot on his right lung, CT scan and bronchoscopy confirmed nsclc. Some lymph node involvement, staged at IIIA. He had a PET scan Tuesday and gets the results today along with his first chemo treatment. He is in good spirits and is determined to win the battle of his life. I have a nagging question on my mind and have no place to get the answer, I thought that maybe someone here could help. Dad does not want anyone to be with him at the doctors office other than mom. His doctors seem to be very good and have treated he and mom very well. I just don't understand why they have told my parents that Dad's tumor is inoperable. What they were told is that after the first round of chemo another CT scan will be done to see if the tumor has shrunk. If it has, then they will continue on more chemo and no radiation until it can be operated on. If there is no shrinkage, radiation will be given and then there is no possibility of surgery. They were told that too much scar tissue would be created for a surgeon to operate from the radiation treatments. After reading some of the bio's here, others have had surgery to remove tumors after chemo and radiation treatment. I just don't know if the doc's are for real or if they are blowing smoke?????? Any ideas would be greatly appreciated. Again, thank all of you for your support and strength. Without this site, I would probably still be realing from the news my parents delivered to me 3 weeks ago. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 9, 2004 Share Posted September 9, 2004 Welcome baydreamer,It sounds like there is a solid plan in place to fight and beat your dad's cancer.On this bord you will find lots of knowing and caring people.I wish you and dad good luck,& I hope your dad's chemo is not too harsh on him.Keep us posted. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 9, 2004 Share Posted September 9, 2004 Dreamer, Differing hospitals and doctors have differing protocols. There are many IIIa's on the board, and all have gone through different procedures. I had surgery first, followed by radiation and then Iressa as suppressive therapy (since recalled). My oncologist (and the second opinion at MD Anderson) felt that chemo was not justified for lung cancer when the slim margin of "plus" was weighed against quality of life and side effects. Hebbie had surgery first, followed by chemo and radiation at the same time. BeckyG was undergoing surgery when they decided to close her back up and do chemo before removing the tumor - you can read her story, but you cannot question her, she passed away in March. These are the treatments I remember as we were all diagnosed around the same time, are/were around the same age and all non-smokers, but there are many other stories on the board... One reason a tumor may be "inoperable" is its location. Some find their tumor too close to very touchy spots (vena cava being one of the spots) and surgery is not an option. If a surgeon doesn't feel he can get a "clean margin", surgery may not be an option. From what I have seen on the board, radiation does not normally precede surgery due to scar tissue and other issues that can crop up. Andrea's mother received chemo prior to surgery, then surgery, more chemo and radiation and then Iressa for suppressive therapy (I think, correct me if I'm wrong on the second chemo, Andrea). Nothing is "cookie cutter" with lung cancer, still a lot of "practice" going on... Welcome to the family, Becky Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 9, 2004 Share Posted September 9, 2004 Welcome! The key is your dad is Stage III. That is because of lymph node involvement, which means the cancer has escaped the lung. With Stage I and II, the cancer is believed to be contained and surgery can be performed to remove it. When one is Stage III or IV, where the cancer has escaped, puting someone through surgery would not remove all the cancer. In those cases, chemo and radiation are prescribed. Hope that helps. Don Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted September 9, 2004 Share Posted September 9, 2004 Baydreamer, love your name!! Welcome aboard. I can't answe your question as I have Small Cell and SCLC is almost never operable. I hope you can get some good answers from the folks here with similar diagnosis. Remember that we are all here for you. David C Quote Link to comment Share on other sites More sharing options...
john Posted September 9, 2004 Share Posted September 9, 2004 Baydreamer, It is exactly what Don said. Stage III is kind of a "weird" stage as far as treatment. Sometimes as in my mom's case, they are staged clinically as stage I (Nothing showed on the PET scan), then staged at stage III during the surgery. In my mom's case they proceeded with the surgery, in others they just close the patient up and start chemo. It is like Snowflake said, everyone is different and Dr's have their own views. There seems to be some evidence that neoadjuvant chemo/radiation leads to increased survival. Neoadjuvant (means before surgery/resection) as opposed to adjuvant chemo (after surgery). It *sounds* like your Dad is in good hands, but 2nd opinions are always useful. You can do a search on the net for neoadjuvant "stage III" and will get more information. Jamie's dad on this board I believe got this type of treatment and now is a candidate for surgery. Ultimitely surgery is usually the best option. http://www.docguide.com/news/content.ns ... 89006D49EC Quote Link to comment Share on other sites More sharing options...
Ry Posted September 9, 2004 Share Posted September 9, 2004 First, welcome! To answer your other question regarding radiation: Once it is determinded (after chemo and radiation) that surgery is still not possible (as in my husband's case) they give additional radiation which is the maximum you can have. Once you have the maximum amount (not sure how many rads that is sorry) you cannot have surgery to that area. The reason being it will not heal. Hope that helps. All the best to your dad~ Rochelle Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted September 9, 2004 Share Posted September 9, 2004 No advice to offer about the surgery question, but I wanted to add my welcome to the board. Glad to know you're already finding this to be such a great place. I personally don't know what I would've done without these folks in the last several months. Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 9, 2004 Share Posted September 9, 2004 I had chemo and radiation together to shrink the tumor , then surgery. Mine was upstaged because of touching pleura, nerves and blood vessels. Surgery went fine. I think it depends on where and why it was Stage 3 Donna G Golly nearly forgot to tell you- WELCOME Quote Link to comment Share on other sites More sharing options...
TAnn Posted September 9, 2004 Share Posted September 9, 2004 Baydreamer, Just wanted to give you a big warm welcome to the boards. It is great that you found us and have already had some very helpful information sent your way by our wonderful members. I can't advise you on the surgery or radiation as I am not a candidate for either, but wanted you to know I'm here to support you while you go on this new journey with your dad. He is lucky to have you to support him. TAnn Quote Link to comment Share on other sites More sharing options...
Justakid Posted September 9, 2004 Share Posted September 9, 2004 Welcome Baydreamer! Everyone is different yet similar. I smoked, was diagnosised Stage 1, opened up lobe removed and 17 lymphs were removed, one in the center of my chest was positive for cancer cells, now Stage 3A. Started 33 rounds of radiation with 6 weeks of chemo. 4 week break and then started 4 full strength rounds of chemo. They tell me because of my age they are giving me everything that they have, they want no regrets. My Dr. did say that there was no protocol for me (someone who was Stage 3 and had had the surgery) it seems they did me backwards and did surgery 1st. Who knows which way is right. I can say that after surgery everyone agreed that all the cancer was removed (except for what might be floating around and lurking). Good luck! Stop by often there are alot of great people here! Quote Link to comment Share on other sites More sharing options...
David P Posted September 10, 2004 Share Posted September 10, 2004 Hey there Bay. You are doing the right thing -- ask, ask, and ask some more. Hope all goes well with your father. Take care. David P Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted September 10, 2004 Share Posted September 10, 2004 Hi Baydreamer Welcome, Love the name. I have III NSCLC. I had the top R Lobe removed on 9-15-03, and then radiation and cemo at the same time. I had a 2cc tumor w/ two lymph nodes involved they classed it as stage II. After they operated they legally had to classify it class III because they found one microscoptic cell starting to pass under the sterum to go to my left lung. They said it was an extremely early stage III. All hospitals have similar but different terminology. My Dr. never told me A or B. I've been told A is operative and B is non-operative, I don't know that to be true??? Alot has to do w/ general health, if he smokes his lungs could be too damaged. The position and location of the tumor and size. And yes, bug him to go. Your parents will never remember the things the Dr. will explain. I didn't and I am so glad mykids were there even though I would of rather faced it myself (to avoid them hurting)If they don't want assistance from there kids try to get them to take a tape recorder. Most onocolgist are used to it. If the Dr. balks, time to get a new Dr. Most incourage it. They are in shock and it is so natural for the mind to protect itself by not comprehending or absorbing everything. Here's a website to go to, to look things up . http://www.oncologychannel.com/lungcanc ... ages.shtml As of 8-13-04 Iam clear. Good luck to you all. Quote Link to comment Share on other sites More sharing options...
carrie Posted September 10, 2004 Share Posted September 10, 2004 Hi Dreamer, Welcome! I was diagnosed with nsclc stage IIIb in February of this year. I am only 40 years old. After seeing my onco's (chemo and radiation) I was told that surgery is usually not an option with this stage of cancer, especially since thewy suspected mine was also in my mediastinum area according to the pet scan. I also went to see a Thoracic surgeon, he scheduled me for surgery - if the area in the mediastinum was not cancerous he would do a lobectomy and remove my upper right lobe. If the mass was cancerous he would not do the surgery, I would not know which he did until I awoke from the anesthesia. Well, when I awoke I immediately knew he had not done the surgery. That was hard to swallow. He said I would start on chemo/radiation treatment and would look at possibly doing surgery down the road (he was not very convincing). So I went through 5 weeks of chemo and radiation, mentioned to my rad onco that I am going to look at having surgery again and she immediately stopped the radiation - she said that most surgeons would not do surgery after 55000 rads (I think) of radiation. I did not have radiation that day, she called my surgeon and they scheduled me to go have a pet scan to see what the chemo/rad treatment had done. I had the pet scan, went to the surgeon to get the results and he was amazed that I was to the point where I could have surgery, his exact words were "I never thought this would happen". My surgery was done on May 20, 2004 and according to him he feels like he was able to get everything - he restaged me to a IA. I am now having chemo to get any residuals that may be there. I am sorry this is so long - but my point is doctors tend to group a everyone in the same category according to the type of cancer they have and the stage and if I had allowed them to do that with me I would have never had surgery and probably on treatment for the rest of my life. Hope this helps. Carrie Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted September 10, 2004 Share Posted September 10, 2004 Welcome Baydreamer. I have stage111B and have done extremely well with all of my treaments. Surgery was never an option for me. I have been stable for a little over a year and feel really good. As for Dad only wanting your Mom with him this could be the only way that he can cope with the disease right now. I never wanted anyone with me. After I was first diagnosed, I went to every treatment by myself, including the time they told me what stage I was in. Best wishes, Dee Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted September 10, 2004 Share Posted September 10, 2004 Hey Bay dreamer, Like Donna, I had a pancoast tumor, Stage III. I had chemo and radiation, but radiation did not exceed 5000 whatevers. I had the surgery, but I did lose my collar bone on the left side, which had to be cut to address dissecting out the tumor, and also would never have healed after the radiation. Apparently the bone is different from soft tissue in healing? I don't know anything about the differences, sorry. The radiation and chemo did shrink the mass, so mostly the surgeon was able to cut through scar tissue, or around it, leaving a decent margin he was comfortable with. Welcome to the family. XOXOXOXOX MaryAnn Prayers always.... Quote Link to comment Share on other sites More sharing options...
baydreamer Posted September 10, 2004 Author Share Posted September 10, 2004 Thank you all so much for your replies. There is a wealth of knowledge here and I only hope that some day I will be able to help others the same way that you have helped me. Pet scan came back with no unknowns He starts 6 weeks of radiation on Monday. I will definately let him and mom know about the rad limit. Baydreamer (Scott) Quote Link to comment Share on other sites More sharing options...
kate1621 Posted September 10, 2004 Share Posted September 10, 2004 Sorry I'm a little late here, but welcome. I'm far too new here to offer any sound advice, other than keep coming here, these folks are a wealth of info/experience/support. Wishing you and yours well, Kate Quote Link to comment Share on other sites More sharing options...
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