Anyone had 2 lobectomies, years apart?
hey everyone! I was diagnosed nine years ago with lung cancer NSCLC Stage 1 T2 N0. I had an upper left lobectomy. For eight years, I had no reoccurring cancer. I did all my CT scans as directed. unfortunately, the last one showed a spot that we had been following.PET scan done and it showed cancer in my hilar lymph node and in my upper right lung .Libectomy and and chemo is the suggested plan.My pulmonary function test indicated that could function if the upper right lung was removed and hilar lymph node. I am so concerned that I will be unable to function! Anyone else had 2 lobectomys and how are you doing???
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I guess I have a unusual situation lol
Hi @loulou2023, I hope you are feeling well. Personally, I haven’t had a lobectomy, but I have had cancer in the hilar lymph nodes, and struggled to breathe and eat due to the pressure. Hopefully they get you some relief before it gets that bad. I know the human lung is amazing, and it has a way of getting the air it needs. Knowing that the pulmonary function tests were positive is a good sign.
Is your breathing being impacted at this point? How soon do they want to do the second lobectomy?
Hi loulou, I had an upper left lobe removed in 2020 due to a nodule that started growing and there was also another one that came up. I didn’t have a long remission and in 2022 I had a new nodule that had cancer in it. They had hoped to do a second lobectomy but the tests they did indicate I can’t have another one because I’m an older person and my lungs have regressed from years of wear but I was given another treatment to remove the nodule with minimal loss of lung tissue. I know you were looking for someone who also had a double lobectomy and I had one and a partial removal but I would have had the same as you if I could, I felt better about having a lobectomy because you know they pretty much got everything and the other method is not as complete. I envy the long remission you had, it gives you more time to rebuild your strength. I hope you recover nicely and fast, here’s praying for better days, months and years ahead amen
thank you guys for responding. I am extremely grateful for the eight years I have had cancer free. I think of others who are not so fortunate and that helps me in my new situation.
I changed my care over to the Emory Winship Cancer Center and have an appointment with a surgeon on April 21.
being now 66 years old and having COPD, I am very concerned about my quality of life after another lobectomy.
Yes, my breathing is affected. I have COPD so my breathing isn’t great. I have noticed that I am short of breath in a different way then I was previously.
Hi LouLou23. I just turned 69yrs. I had an upper left lung lobectomy in 2019 and a upper right lobectomy in 2021. Both were done with VATS. Left was adenocarcinoma no lymph node affected, and right was atypical carcinoma 1 lymph node effected.No treatment was required after both. My lung capacity is, of course, not as good as it was before surgery, but I can still do pretty well all I want without difficulty.My oxygen level generally sits around 96-99% with my finger machine. I was back playing pickleball 4 months after the first surgery. And about the same time after the second surgery . Unfortunately for me , after the second follow up CT , multiple lesions we found on my liver. After 3 biopsies, I was diagnosed with neuroendocrine tumour likely metastasized from the lung. Now, I’ve just finished my 10th cycle of CAPTEM. Luckily , I have had virtually no side effects from the Chemo and my NETS is non functioning. I still exercise and walk but haven’t tried going back to pickleball. Later this month I’m scheduled for an Octeriotide scan to see if the chemo is effective . Even though I’m dealing with this now, I would not have changed the decision to have the second lobectomy. Hope this helps in your decision going forward.
thank you so much! you made me feel better… Especially after you mentioned, playing pickle ball! I love playing and want to continue.
I hope your scan goes well this month. You have definitely been through a lot.
@loulou2023, how did your appointment with the surgeon go? Will you have a second surgery? How are you doing?
The surgeon said I am not a surgical candidate. The spot on my upper lung was not cancerous but the lower was squamous cell. I also have a lung fungus, aspergillosis. Only me lol
Waiting on call for how they want to proceed. I know radiation. Thanks for checking on me
Crazy thing the radiologist missed the lower lung cancer on 3 CT scans in the last 7 months. Needless to say i have changed my care to Emory Winship Cancer in Atlanta.