Wifey Posted May 21, 2019 Share Posted May 21, 2019 Fiance diagnosed. Surgery removed the upper right lobe. Nearby lymph nodes and all tests came back negative. Doctor says he has Stage 1 cancer because they never say you are cured. They said no radiation or chemo is needed at this point. What do we do now? I feel like we are waiting for it to come back. Anxiety!!! Link to comment Share on other sites More sharing options...
BridgetO Posted May 21, 2019 Share Posted May 21, 2019 Hi Banna, My situation is similar to your fiance's, I had my lower right lobe removed in November 2016. I didn't need any further treatment either. I'm NED (no evidence of disease) now, and have been since my surgery. What now for your fiance is ongoing CT scans, probably every 6 months for a few years, Did the doctors tell you tht Link to comment Share on other sites More sharing options...
BridgetO Posted May 21, 2019 Share Posted May 21, 2019 Sorry, post sent by accident before it was finished. Did the doctors talk about CT scan schedule? If not, he should ask. Hanging around on this forum is also a good "what's next". We've all been through anxiety around this diesase and we understand. Let us know what questions you have and how we can support you. Bridget O Link to comment Share on other sites More sharing options...
Wifey Posted May 21, 2019 Author Share Posted May 21, 2019 34 minutes ago, BridgetO said: Hi Banna, My situation is similar to your fiance's, I had my lower right lobe removed in November 2016. I didn't need any further treatment either. I'm NED (no evidence of disease) now, and have been since my surgery. What now for your fiance is ongoing CT scans, probably every 6 months for a few years, Did the doctors tell you tht Yes BridgetO, they did tell us that. I guess I was expecting some special diet or some preventative meds. It seems the scans are just waiting for it to return. Maybe I'm just too anxious. Link to comment Share on other sites More sharing options...
Wifey Posted May 21, 2019 Author Share Posted May 21, 2019 Yes BridgetO, they did tell us that. I guess I was expecting some special diet or some preventative meds. It seems the scans are just waiting for it to return. Maybe I'm just too anxious. Link to comment Share on other sites More sharing options...
Wifey Posted May 21, 2019 Author Share Posted May 21, 2019 Thank you so much. I guess I never expected to have cancer removal surgery, and then nothing now but scanning and waiting. Link to comment Share on other sites More sharing options...
Tom Galli Posted May 21, 2019 Share Posted May 21, 2019 Banna, Scanning and waiting is indeed a pain. But, as long as the scans are clean, you have opportunity for celebration. Some even do a dance—the no evidence of disease (NED) dance. So, turn into a party and... Stay the course. Tom Link to comment Share on other sites More sharing options...
Curt Posted May 21, 2019 Share Posted May 21, 2019 Banna. I had an upper right lobe lobectomy a few months ago. I am also currently NED. My first two scans are every three months, then six months for a few then a year. At five years they will decide what to do after that. I completely understand the feeling of just waiting for it to come back. I looked into doing follow treatments to reduce the likelihood of recurrence. I was told it wasn’t necessary. I was also told that if you don’t have any recurrence in the first five years the likelihood of recurrence decreases. Link to comment Share on other sites More sharing options...
Wifey Posted May 22, 2019 Author Share Posted May 22, 2019 Curt, thank you soooo much for this! I am a basket case. Link to comment Share on other sites More sharing options...
Wifey Posted May 22, 2019 Author Share Posted May 22, 2019 Thank you Tom. I was just such a shock and panic set in. I really need to focus on the positive Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 22, 2019 Share Posted May 22, 2019 Hi there Banna- Just wanted to drop in and say hello. It’s perfectly okay to feel like a basket case right now. None of us ever expected to join this club. In time you’re confidence will increase. I know that’s hard to imagine at this point however there are better days ahead. I’m the meanwhile, do what you can, laugh, sing, live. Michelle Link to comment Share on other sites More sharing options...
Curt Posted May 22, 2019 Share Posted May 22, 2019 The post diagnostic worry and haze is tough. Try to enjoy life now. Save the worry for scan time. I haven’t figured out how not to worry when those come around. Link to comment Share on other sites More sharing options...
Wifey Posted May 23, 2019 Author Share Posted May 23, 2019 Thank you all so much! Link to comment Share on other sites More sharing options...
Deb W Posted May 24, 2019 Share Posted May 24, 2019 Banna, I feel like we're in the same place. I had an upper left 1/3 lobectomy March 22 - no radiation or chemo. My first scan will be in September. During the day I'm able to adjust my thinking when I begin to experience anticipatory anxiety about the scan. But, I wake up at night a couple of times a week in disbelief that I had lung cancer and then wonder if it will come back. I lost two brothers and one sister to cancer. So, out of 6 kids, 4 had cancer the other 2 did not and are alive. I sort of feel that's in my genes. I am working toward resuming my pre surgery fitness routine. I eat healthy, but then again, I did that before cancer! I think we just do our best to take care of ourselves. Katie B. I loved what you wrote, and I couldn't agree with you more. Link to comment Share on other sites More sharing options...
Wifey Posted May 30, 2019 Author Share Posted May 30, 2019 On 5/21/2019 at 7:42 PM, Curt said: Banna. I had an upper right lobe lobectomy a few months ago. I am also currently NED. My first two scans are every three months, then six months for a few then a year. At five years they will decide what to do after that. I completely understand the feeling of just waiting for it to come back. I looked into doing follow treatments to reduce the likelihood of recurrence. I was told it wasn’t necessary. I was also told that if you don’t have any recurrence in the first five years the likelihood of recurrence decreases. Curt, if you don’t mind sharing, what was the size of your tumor? My fiance’s was 4cm Link to comment Share on other sites More sharing options...
Curt Posted May 30, 2019 Share Posted May 30, 2019 Mine was scanned at 8 mm up to 1 cm. The scans were all different. The surgery pathology report says an 8 mm tumor. Mine was found by accident VERY early. 4 cm is still small. Link to comment Share on other sites More sharing options...
Wifey Posted May 30, 2019 Author Share Posted May 30, 2019 Thank you Link to comment Share on other sites More sharing options...
Wifey Posted May 30, 2019 Author Share Posted May 30, 2019 On 5/23/2019 at 8:40 PM, Deb W said: Banna, I feel like we're in the same place. I had an upper left 1/3 lobectomy March 22 - no radiation or chemo. My first scan will be in September. During the day I'm able to adjust my thinking when I begin to experience anticipatory anxiety about the scan. But, I wake up at night a couple of times a week in disbelief that I had lung cancer and then wonder if it will come back. I lost two brothers and one sister to cancer. So, out of 6 kids, 4 had cancer the other 2 did not and are alive. I sort of feel that's in my genes. I am working toward resuming my pre surgery fitness routine. I eat healthy, but then again, I did that before cancer! I think we just do our best to take care of ourselves. Katie B. I loved what you wrote, and I couldn't agree with you more. Deb, what was the size of your tumor? Link to comment Share on other sites More sharing options...
Deb W Posted May 31, 2019 Share Posted May 31, 2019 Banna, It was 3.1cm so classified as stage 1B Link to comment Share on other sites More sharing options...
Wifey Posted May 31, 2019 Author Share Posted May 31, 2019 Thank you. I feel better knowing you were staged at 1B without further treatment. My fiance's was 4cm (1B) with further treatment. They removed 10 lymph nodes and all were negative. I need to relax because this is beginning to consume me. Link to comment Share on other sites More sharing options...
Wifey Posted June 3, 2019 Author Share Posted June 3, 2019 Here's a questions everyone. If you were diagnosed with Stage 1B 4cm adenocarcinoma (upper right lung) that did not spread to any of the 10 lymph notes that were tested and you had the tumor removed via lobectomy and you doctor said you don't need further treatment but another doctor offered chemo because of the size, do you go for the chemo? And if you do and there is a recurrence, will the previous chemo make it more difficult to treat the recurring tumor? Please offer some advise on this. Thanks Link to comment Share on other sites More sharing options...
Tom Galli Posted June 3, 2019 Share Posted June 3, 2019 Banna, Okay, stage 1b with a 4cm resected tumor with no mets to lymph nodes. One doctor says no further treatment and another suggests chemo, what do we think? First, review the data here on lung cancer recurrence. National Cancer Institute data suggests at stage 1B, one has about a 1 in 3 chance of recurrence. Chemo should reduce that chance of recurrence but by what percentage is not known. Does a previously administered course of chemo make further treatment more difficult if there is a recurrence? Sometimes--people and tumors respond differently to the same type of chemotherapy. In my case, I had the same recipe (6 cycles of Taxol and Carboplatin) 3 times because scans showed the chemo was having a good result on my tumors. I have Squamous cell and it is normally quick to resist or mutate against chemo but mine did not. Adenocarcinoma does not normally mutate as quickly. The purpose of the post surgical chemo is to clear the blood and lymphatic system of any stray cancer cells that may be present. This type of chemo given in this circumstance can be very effective against single cancer cells. So the choice is yours. I had 4 recurrences and my first likely resulted because I did not have my post surgical chemotherapy because of surgical complications. I would have taken my post surgical doses and often wonder if I would have had a recurrence had I had the chemo. Stay the course. Tom Link to comment Share on other sites More sharing options...
Wifey Posted June 3, 2019 Author Share Posted June 3, 2019 Thanks Tom. Helpful information. Link to comment Share on other sites More sharing options...
Wifey Posted June 5, 2019 Author Share Posted June 5, 2019 On 5/21/2019 at 12:50 PM, BridgetO said: Hi Banna, My situation is similar to your fiance's, I had my lower right lobe removed in November 2016. I didn't need any further treatment either. I'm NED (no evidence of disease) now, and have been since my surgery. What now for your fiance is ongoing CT scans, probably every 6 months for a few years, Did the doctors tell you tht Bridget O. What was the size of your tumor? Thanks Link to comment Share on other sites More sharing options...
Olive Posted December 3, 2019 Share Posted December 3, 2019 I got my full results today - staged at 1b but “high risk.” NCCN guidelines suggest maybe chemo, but no guarantee or CT scan every 6 months. I had right upper lobectomy and right lower wedge resection because tumor was connected. I am doing wait and see because why go through chemo unless there’s a real good reason? However, I am over 60 and that does influence my thinking. Also, I have breast. Cancer and need to get a lumpectomy so that’s my next step. Link to comment Share on other sites More sharing options...
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