I am new here.

[SusanSicard061145]

It has been 2 years and a few months since I lost the upper lobe of my left lung to carcinoma . 6 months after that surgery I ended up in Brigham and Women's Hosp in Boston to have another surgery in the same place to repair the problems made by the first surgery. I slowly recovered from undergoing the second surgery but it feels like I am going backwards now. I have been back with my local pulmonary doc for about 1 1/2 years but don't know what to do now. My recent ct scans have been negative for cancer but I know something is wrong. Has this happened to anyone else? Any suggestions of what to do next. It was stage 1.5 and very small and had not spreed outside the place in my lung I wish now I never would have gone through the surgery to remove my lung.

[Denzie Moderator Volunteer]

You have been through so much already! I want to ask a couple questions and maybe I can narrow down my non-clinician ideas of what might help.

With the second surgery what did they do to repair it. Did you have an open thorachotomy or the less invasive VATS? Did they take more of the lung? Are you experiencing a gripping pain around your rib cage? Almost like wearing a bra many sizes too small?

Congratulations on a great scan.

[Hidden in reply to Denzie]

Welcome to our group Susan! You will find knowledge and motivation and peace just being in our group. I am so sorry you have been through so much! I was diagnosed with stage 4 lung cancer in July 2015. I was on chemo for 18 months and within the last 6 wks on Opdivo. I will be having a PET scan in March or April to see what is happening with my tumor. I have more hope now since being in this group! I have faith in the lord and all the prayers. Good luck and God bless you.. welcome again!

[Enjoyabull in reply to Hidden]

How did your body handle 18 months of chemo? Weight loss or hair loss? What kind were you on and how do you feel? I hope opdivo works for you will keep you in my prayers.

[Hidden in reply to Enjoyabull]

I really think the angels were protecting me! I do not remember the chemo drugs but there were 3 of them. I never lost weight or my hair. Towards the end tho I was experiencing heart issues and a lot of fatigue.

[Steph60]

If you could tell us more about the symptoms you are experiencing? I know for myself that I get winded earlier then I used it. I went to see both my cardiologist and pulmoniologist had all sorts of tests done - and have determined this is my new norm.

[scifiknitter Blogger]

Susan, you have been through a lot. Lung surgery is difficult, and it sounds like nearly everyone is left with permanent changes afterwards - a new normal for them. I had a relatively minor VATS biopsy of my pleura, and I will always have a sensation from my lung pulling against the resulting scar tissue. On the days when it is stronger, I can worry that something bad is happening, but my scans keep coming back as stable in that area.

[Danna]

I saw what happened to my brother and now I have to go through a biopsy, if it is cancerous I don't know what I am going to do. Believe me if you don't feel right in your body go with that. I kept telling my doctor and she started looking into it. Now I have had a pet scan I know have to have a biopsy in the lower left lobe and a bone marrow. I had 3 different skin cancers in 2015. Listen to your body.....Danna

[BeezeByTheBay in reply to Danna]

I had to write b/c I also was found to have stage 1 lung cancer that was discovered a year after my brother's stage 1 lung cancer was discovered - his was in his upper right lobe, and mine was in my lower right lobe. My two lesions (one growing that was determined to be early stage 1, and the other lesion as 'pre-cancerous') were both removed by thorascopic surgery (4 minor incisions under my arm) about 2 years ago. Month of recovery was not easy but not that difficult. Cough was the worst symptom and Tessalon Perles (pills) saved my life. My CT scans every 6 months since have been clean since and now I'm going to a once-a-year format. HOORAY! I also just trusted my gut and although I was asymptomatic, I asked to be tested b/c I was a smoker years ago, and my brother had been diagnosed (his likely from agent orange exposure in Vietnam). He is also clear, 3 years out. We are both so grateful. I am especially glad that I listened to my body so I second the suggestion from Danna above! Hang in there. Knowledge is power! Bronwyn

[Nay2018]

By removing your lung I think that gives you more positive results eventually. I am sure everything you have gone through may not make it seem like it. Hang in there. Wishing you best results.

[Angie2208]

That is what my mother said following her lobectomy in 85. Her quality of life went to hell in a hand bag.

[Hidden]

susan We all feel that way. I don't know what they done to you to cause a second surgery I the same place. So you have double trouble I didn't but I felt the same I wished they had never took my lung. Its been nothing but trouble,how you managed two in the same spot. I hope it gets better i'll be thinking of you if you need to talk i'm here. Jo Taylor

[gibdonnalee Community Superhero in reply to Hidden]

Hi Jo, how have things been for you lately? I know you've been upset about a couple things, hope they're better. I will see oncologist on Thursday , will let you know what's up. Take care!!

Donna