LisaA Posted January 6, 2019 Posted January 6, 2019 Speaking mostly to those with COPD prior to lobectomy surgery, did you need oxygen therapy after a lobectomy? I am not referring to the postoperative period, but for long term use? My o2 levels are in the 98% range now, but lung function is severely impaired due to long term asthma. Dr giving a bleak outlook post surgery and I'm really concerned for making the right choice of surgery vs radiation/chemo treatment for my stage 1B cancer.
LexieCat Posted January 6, 2019 Posted January 6, 2019 Have you discussed with your surgeon the possibility of a resection that doesn't remove the entire lobe? You could still follow up with adjuvant chemo, I assume. While lobectomy is usually regarded as the most effective type of surgery, from what I understand, more limited surgery can sometimes be done when there's a need to preserve as much lung tissue as possible.
Rower Michelle Posted January 6, 2019 Posted January 6, 2019 Hi Lisa One of the books I just finished recommended incorporating the Andrew Weil MD CD: Breathing-The Master Key to Self Healing. I just ordered it. I don’t have COPD but I can say my right lung was not in a happy place. After I started the targeted therapy I incorporated Dr Weil’s 4–7-8 excercises. The video is on YouTube. My O2 levels are back up to 100% & doc can’t explain it. So might be worth a shot for you to consider. Michelle
LisaA Posted January 6, 2019 Author Posted January 6, 2019 HI Lexie, Yes, he is now saying that a smaller wedge(?) resection would be better with my lung function followed by chemo and radiation. But since my fev1 was so compromised he is actually now suggesting that I see the radiation therapy and oncologist before making my final decision on surgery vs radiation/chemo instead. While he is certainly willing to do the surgery, he did say that I would need o2 likely forever. My 02 is in such a good range now, and I work and enjoy and traveling, that I am really struggling with this heavy choice. I want to mention that while I knew that my FEV1 would be in the basement, I function fully and have a full and active lifestyle. I didn't expect such a grim outlook of my future after surgery. Either way I feel is a just a horrid future. Just dying trying to figure out which I should choose
LisaA Posted January 6, 2019 Author Posted January 6, 2019 Thank you Michelle, looking that up now. I have been practicing a similar breathing exercise for a week now, but incorporating 4-8-8 instead. It is my FEV1 that is horrid, and I don't think that I have time to turn that around, if it is even possible
LexieCat Posted January 6, 2019 Posted January 6, 2019 I have a friend whose father had "cyberknife surgery" (precision radiation) for his lung cancer and he did great. I don't know a lot of details, but apparently surgery was not something they felt he could tolerate. It certainly makes sense to consult with a radiation oncologist.
DAVID D Posted January 7, 2019 Posted January 7, 2019 Hello LisaA You may find it interesting to know that my wife who has suffered from COPD for years and now has emphysema is scheduled for a lobectomy. Both the surgeon AND the pulmonologist have said that they think it is unlikely that she will need long term oxygen assistance. They are always careful and say they can not be sure, but they do seem to be genuine in their opinions expressed. When are you expecting surgery? David D
LisaA Posted January 7, 2019 Author Posted January 7, 2019 Hi David, Thank you for your reply. It will be this month if that is the route. My surgeon has says without a doubt that I will need o2 for the rest of my life after surgery It is just the hardest decision I have ever had to make. I just never envisioned myself relying on O2.
DAVID D Posted January 7, 2019 Posted January 7, 2019 I certainly understand your concern. My wife has had the same concern and in fact, I think that if she felt that she would need the oxygen tank for life she might have declined the surgery . I know it doesn't change things but I truly do feel so bad for you. Watching my wife wrestle with these things puts life and death in a whole new perspective for me.
LexieCat Posted January 7, 2019 Posted January 7, 2019 Lisa, is there some reason you're dead set against the chemo/radiation in lieu of surgery? I think if I were told surgery would likely require me to be on oxygen for the rest of my life (assuming I trusted the doctor who told me that) and I had chemo/radiation as an alternative, that's probably what I would choose. As I said, precision radiation with chemo can be extremely effective.
DAVID D Posted January 7, 2019 Posted January 7, 2019 LexieCat Please correct me if I am wrong. Nearly everything that I have learned about NSCLC suggests that surgical removal is always preferred if possible. Chemo and radiation used when surgery isn't possible.
Susan Cornett Posted January 7, 2019 Posted January 7, 2019 David, It depends on so many factors including the size and location of the mass(es). A friend I met through this site had chemo and radiation prior to surgery to shrink her mass and the remainder was removed surgically. I went the opposite route - surgery then chemo & radiation - but we didn't know my mass was malignant until surgery. Given the size, I feel certain they would not have chosen surgery as the first line of treatment.
BridgetO Posted January 7, 2019 Posted January 7, 2019 Lisa have you considered looking for a second opinion?
LexieCat Posted January 7, 2019 Posted January 7, 2019 Surgery iS the preferred treatment, when possible. BUT the doctors also assess whether the patient can tolerate surgery. There are many with lung cancer who cannot, for one reason or another--pulmonary function, other health issues, etc. So loss of quality of life, such as needing oxygen post-surgery, can be a good reason for choosing another treatment modality instead. Don't forget, Lisa, MD Anderson at Cooper is nearby, if you are inclined to get a second opinion. I believe you also talked about MSK as a possible place to consider.
PaulaC Posted January 7, 2019 Posted January 7, 2019 David, I had radiation and chemo before my surgery which killed the cancer in my lymph nodes and shrunk the tumor. I was dz nsclc 3B. The tumor shrank from 3.7 cm to 1 cm after radiation and chemo. I had surgery to remove the rest of tumor and am now NED.
DAVID D Posted January 7, 2019 Posted January 7, 2019 PaulaC What was the surgical procedure performed? Did you have any unexpected problems with recovery?
LisaA Posted January 7, 2019 Author Posted January 7, 2019 Paula did you feel well enough during radiation and chemo to work?
PaulaC Posted January 7, 2019 Posted January 7, 2019 29 minutes ago, DAVID D said: PaulaC What was the surgical procedure performed? Did you have any unexpected problems with recovery? David I had my upper left lobe removed (open thoractomy) The surgery was done October 5, 2018 and so far no problems. I think my biggest complaint has been numbness under my breast and getting winded easier than I use too. I am walking everyday with a little jogging and doing a work out program with weights.
PaulaC Posted January 7, 2019 Posted January 7, 2019 1 minute ago, LisaA said: Paula did you feel well enough during radiation and chemo to work? LisaA I retired 3 months before I was diagnosed so luckily I was able to be home. I personally think it would have been hard after the 2nd or 3rd week. I got to where I was pretty fatigued and could barely walk to appointments. I do have to say it could have been because the target radiation on my lymph nodes caused scaring and I couldn’t swallow. I also ended up with a bad case of thrush in my esophagus. In the end the weakness was probably from lack of calories. I lost almost 40 pounds. The best thing was it killed the cancer.
Steff Posted January 7, 2019 Posted January 7, 2019 Lisa, My mom has/had a moderate case of COPD with emphysema. I say "had" because my mom had her right, upper lobe removed, which resulted in most of the emphysema being removed. Her lung function actually increased after surgery because of this. I know that isn't normal, but it was a surprise for us. But lung function has since gone due to side effects from immunotherapy. That being said, no one can tell for positive what your lung function will be after surgery, but if your docs are telling you that you will likely be on O2, that will likely be the case. I did not see if you had a 2nd opinion???? If not, you may want to consider one to see what that doc has to say before you make your final decision. I am always in support of 2nd opinions when you want something different than what the docs suggest or you are looking for a better option. I also recommend meeting with the radiologist and oncologist. In my mom's case, it was the radiologist who explained immunotherapy best to us, helping our decision. Who knows, the oncologist may have another treatment option too. It may also be possible that you could need follow up radiation and/or other cancer treatment after surgery - this is the case many times. In my mom's case, we were initially told she would only have surgery, but things looked different once she was opened up and she needed chemo + radiation afterward. On a different note, my mom has periodically been on oxygen since 2015. Right now she currently just has oxygen piped through her CPAP machine. But she has portable oxygen if she needs it. Although it's an inconvenience, it's not the end of the world to be on oxygen, especially if it's due to a life-saving surgery. There are the actual O2 bottles to carry around (which is what my mom usually uses when she needs it) and even portable oxygenators that weigh only 7-10 pounds that run off of a battery and make their own oxygen. So, you can still have an active lifestyle despite being on oxygen. My mom rents the portable oxygenator (Medicare will not buy her one for a few years because she has the big oxygenator at home) when we travel on planes. It works great for her. I understand your trepidation and am happy that you are reaching out to those who have dealt with the same decision you are having to make. I hope that you can find an answer that you are comfortable with. Take care, Steff
LisaA Posted January 8, 2019 Author Posted January 8, 2019 I am getting other opinions/points of view from the radiation dr and oncologist on Wed next week. I do trust the surgeon has honestly given his opinion of post surgery expectations. While he is still willing to do the surgery, he wants me to be fully aware of the probable outcome. I might very well choose radiation and chemo/immunotherapy as a first line of treatment. Surgery can always be an option. I want to ask him on Weds when I see him if I do the radiation/chemo route first, wouldn't the mass shrink meaning less lung tissue would need to be removed.
Tom Galli Posted January 8, 2019 Posted January 8, 2019 Lisa, Be sure to explore precision radiation with the radiation oncologist. Your stage 1B disease implies a small tumor. In such cases, precision radiation like SBRT, IGRT or IMRT can substitute for surgery. It may also preserve lung function. Be mindful that there are two types of radiation: conventional (normally given as fractional treatment over 30 or more days) and precision (very narrow beams given over 2 or 3 days). The latter often substitutes for surgery. Follow up chemo can be given after both types.. Stay the course. Tom
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