Jane CM Posted October 6, 2019 Share Posted October 6, 2019 I am a stage 3B patient who had chemo/radiation followed by a lobectomy in right upper lobe and wedge resection in middle lobe. I have multiple nodules in my left lung that have been there all along and stable. I now have new nodules in my right lung including a nodule in lower right that tripled in size on my recent scan, though it is still only 6mm. But apparently it was attributed to inflammation from the surgery and I don't see that as correct reasoning if it is now growing. There is little evidence to support chemo or immunotherapy before AND after surgery and apparently it is not done enough to research it. Have any of you done that full protocol? I am in good physical condition in spite of all the treatment I've had. To do nothing means that I watch and wait but why if they are cancerous and growing? My oncologist says I am in a "gray area". Has anyone been here or know someone who has and how that worked out? I would appreciate any information at all as it seems, according to two oncologists, that I am in uncharted territory. Link to comment Share on other sites More sharing options...
Donna G Posted October 6, 2019 Share Posted October 6, 2019 hi Jane. I was Stage 3B when I was diagnosed in Dec. 1997. My Doctor 's plan was chemo and radiation , If the tumor shrunk, which it did, I would have surgery followed by more chemo. I have been cancer free since then , 21 years . Best wishes to you. I hope a new plan will work for you. Donna G Link to comment Share on other sites More sharing options...
Jane CM Posted October 6, 2019 Author Share Posted October 6, 2019 That is so great to hear, Donna! It must have been rough to go through but a wonderful outcome! Do you have any permanent side effects? Link to comment Share on other sites More sharing options...
Donna G Posted October 7, 2019 Share Posted October 7, 2019 Jane I had Cisplatin and it did caused nerve damage especially in my feet--Neuropathy-. My feet especially are weird. They are not really numb but more like they are more sensitive and can't interpret what they feel correctly. If they touch something on the floor they panic. They don't like shoes they are not use to . I don't walk with bare feet ! I were the same style of shoes so they are use to the feel. I also have broken ribs from the surgery that never healed so I don't wear anything that sqeezes my chest. I have adapted to this new normal and life does go on ! Donna G Link to comment Share on other sites More sharing options...
Jane CM Posted October 7, 2019 Author Share Posted October 7, 2019 Donna, Thank you for sharing your journey and answering my questions. Your positive attitude is inspiring! All best to you, Jane Link to comment Share on other sites More sharing options...
PaulaC Posted October 7, 2019 Share Posted October 7, 2019 Jane, my situation was like Donna’s. I was 3b and did chemo/radiation to shrink the tumor, lymph nodes and than surgery. Oct 5th marked a year anniversary from surgery and so far I’m NED. I’m feeling great and everyday I feel better. Link to comment Share on other sites More sharing options...
Jane CM Posted October 7, 2019 Author Share Posted October 7, 2019 That’s wonderful, Paula! Congrats! Did your treatment end with surgery (lobectomy?) or did you have treatment after surgery? Also, with NED does that mean your lungs are clear of any nodules, even tiny ones? Link to comment Share on other sites More sharing options...
PaulaC Posted October 7, 2019 Share Posted October 7, 2019 Yes to both questions! I had a couple things show up on the bone scan but both were ruled has Arthritis. Hip and Left lower clavicle. I was told I was clear but my doctor is pretty cautious about saying cancer free. He tells me he’ll be seeing me for a long time. I personally am fine with that so if anything pops up we can take care of it. Oh and when this whole journey started I was told that because the cancer had spread to my lymph nodes I probably wouldn’t be able to have the surgery. When I got results from chemo/radiation the surgeon agreed to do the surgery. 😁 Link to comment Share on other sites More sharing options...
Jane CM Posted October 7, 2019 Author Share Posted October 7, 2019 What was the treatment you had after surgery and do you have any permanent side effects from radiation or chemo? Sorry for so many questions but I’m in the thick of it! Link to comment Share on other sites More sharing options...
Steff Posted October 7, 2019 Share Posted October 7, 2019 Jane, My mom received chemo and radiation after her lobectomy, her original diagnosis was 3a. She did not have any treatment prior to the surgery. Her surgeon was unable to remove all of the lymphnodes involved, which was why follow up treatment was needed. One year after treatment, her lung cancer was back and she began to take chemo + immunotherapy. It seems that has done the trick for over a year now. She has ongoing side effects from treatment, but deals with it. Link to comment Share on other sites More sharing options...
Jane CM Posted October 7, 2019 Author Share Posted October 7, 2019 Thanks for sharing your mom’s experience, Steff. I’m glad to hear she is doing well! Sending positive energy that this continues. Link to comment Share on other sites More sharing options...
PaulaC Posted October 7, 2019 Share Posted October 7, 2019 52 minutes ago, Jane CM said: What was the treatment you had after surgery and do you have any permanent side effects from radiation or chemo? Sorry for so many questions but I’m in the thick of it! No treatment after the surgery. I had cancerous lymph nodes close to my Esophagus and the radiation caused a lot of scar tissue. I was referred to a digestive health doctor that did a procedure to stretch my esophagus. I had that done twice and still get choked if I’m not careful. I also have a little side effect with my toes after chemo but not really bad. The after effects of my surgery are really not bad. I had an open lobectoctomy so I have numbness under my breast that I’m told will probably stay that way. I feel like I hear myself breathing more than I did before but heck that could be our Texas allergies. I have to say that my after effects are so minimal that most the time I can forget about being a cancer patient and live my new normal life. Scan time and doctors appointments are the most nerve racking. Link to comment Share on other sites More sharing options...
Jane CM Posted October 7, 2019 Author Share Posted October 7, 2019 Good for you, Paula. I have esophagitis because my tumor was so close that the esophagus was in the treatment field. Like you, there are limitations in what I can eat but I’m getting used to that. I wish you the best and appreciate you taking the time to answer all my questions. I’m in this “gray area” and may have to make my own decision about doing adjuvant chemotherapy or wait and watch these multiple nodules that are growing but still small. It’s a real dilemma! There is always the chance that something better will come along but also a chance that cancer cells still there will travel to other places. Cancer is not for the faint of heart! Stay well! Link to comment Share on other sites More sharing options...
Punky Posted November 7, 2019 Share Posted November 7, 2019 I decided to do the adjuvant therapy. I had surgery also and had clear margins. But cells can break away from the original tumor and float around in your body. I was given the option of wait and see also. I will be 1/2 way through my adjuvant theapy tomorrow. I am getting 4 cycles. The 1st cycle didn't bother me much but the the beginning of the 2nd cycle has not been fun. I am tired but can't sleep. I will probably see it through. If my cancer did come back I would always wonder if finishing the adjuvant would make a difference. Link to comment Share on other sites More sharing options...
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