The final cut?

[Minh]

Good morning to all!

I have been contemplating about whether or not I have made right decision for my cancer treatment. In the past 10 weeks, I have taken multiple trips to MD Anderson for consultations and diagnosing multiple lung nodules. After series of tests that included couple of biopsies of tumors, pleural fluid, and blood, and a PET/CT which did not show any SUV uptake, it was finally determined that I only have one cancerous nodule of 1.6cm located in the right lower lobe. So the recommendation was to have radiation treatment instead of surgery because of my recent heart triple bypass, stents, and aortic valve replacement. However, after reading many posts here and googling, I decided to ask for surgery despite the fact that the surgeon has mentioned the perioperative mortality rate for me is doubled compared to patient who has no other medical conditions. Generally I typically don’t go against expert suggestion in any subject matters. But in this situation, I feel as though this will be my last stand against the invisible enemy. I can never win and will never feel at peace as long as the I know this thing is still inside me. This decision has been heavy on my mind and I have struggling with it in many sleepless nights.

It’s 6:00am, it’s still dark outside, the wind is calm, the temperature is slightly chilly, over a thousand miles from home, I am sitting on a bench in front of MD Anderson drinking a hot cup of coffee, conflicting about my decision of going against doctor recommendation.  I still have 24 hours to change my mind as the surgery has already been scheduled for tomorrow November 17th. I have made countless wrong decisions in my life, and I don’t want to make a wrong choice now as it may cost me my residual quality of life. I met the surgeon yesterday and he explained the plan, the risks, and the benefits. Because of my other existing medical conditions, he will not perform lobectomy immediately out of the gate until he looks inside and determines if it’s necessary. He will start out with a wedge and then look inside for all visible signs of cancer spreading to other locations such as lymph nodes, esophagus, and all nearby tissues and organs and then remove them. If things looked bad, he will step up to full lobectomy. As for the risks, he said lobectomy may have 5% recurrent rate while the wedge may have 15% recurrent rate (3x). The operation will be very comprehensive and meticulous. It sounded all good. But for me, I would prefer to have lobectomy from the get go and get it over with. I did tell him to do whatever is necessary to improve my chance of overall survival and that I am willing to take the extra risk of lobectomy if it improves my chance. I also asked him if he has any doubt about any unseen residual microscopic cancer cells during the operation, just go ahead and give me the lobectomy. 

Too much rambling from me! About this time tomorrow I will be on the table to have the final cut as I see it. If you don’t hear from me within 4 weeks, I am in big trouble then. I thank you for all your excellent advices, words of support and encouragement in the past 10 weeks when I became member of this forum. Good luck to us all, especially to Lexiecat who has gone through so much adversities fighting against this invisible enemy and still standing strong! She is tough and she is my hero! I am silently cheering her on.

Thank you!

 

 

 

 

 

[Rower Michelle]

Brave decision and it’s often the bold ones that make all the difference.   Given your level of comfort, and determination, you’re already ahead of the game.   Be at peace and go for it. 

[Tom Galli]

Minh,

You never ramble. I read every word you post (I do that with all who post). This is one of the only places where people with lung cancer can broadcast their concerns; thus a broadcast deserves attention. I am praying for a good surgery and a better outcome.

You are in one of the nation's best cancer treatment centers. From the way you've described your interaction with the surgeon, you've picked a good one. If it were me, I'd be comforted that the decision (indecision) period is over. So let's do this!

I do hope we hear from you as quickly as your recovery allows. In the mean time...

Stay the course.

Tom

[LouT]

Minh,

As you have weighed all the information and come to a pretty solid decision for reasons that are yours alone to make, I support you fully.  I remember the same feeling that I needed to get my cancer out of my body, so I understand the sentiment.  I wish you the best of luck with the surgery and we look forward to hearing from you on the other side.

Lou

[Judy M2]

Best of luck, Minh! 

[Minh]

Thank you all,

I’ve been in a daze in the last 2 days. Now I am kinda regain my consciousness and little bit more focus. The surgeon came in twice today and checked on my status. We talked about my surgery. He gave me a lobectomy thoracotomy instead of VATS because he thinks thoracotomy gives him better visual to inspect all tissues and nodes and remove them as necessary. This would lower chance of recurrent. The removed tissues have been sent to pathologist. He claimed that all of my nodes looked clean. All of the nodes and tissues he removed also appeared normal. But they are still pending pathologist’s results which could take up two weeks.

As for pain management, immediately after the surgery the pain was hard to handle. But The anesthesia team gave me additional pain medications which reduced the pain significantly. Now I am on IV infusion pain medications which will convert to pills before discharge. The pain is now manageable and is not terribly painful like right after surgery.

I started to have shortness of breath right after surgery which I never have before. Now I know what sob feel like. Every walking step is difficult. I have to take frequent breaks to catch breaths when walk around my recovery ward. Even talking can cause sob. Dr to asked me to use the air incentive spirometers and more waking to improve sob. Right now the discharge plan is 4 days. But it could change depending on my progress. I will go to hotel and wait for the first followup appointment. Hopefully it will be within 10-15 days from the surgery date and Dr approves to fly home. Else, I have to drive which will very long trip of about 18 hours. 

I hope I had made right decision about getting lobectomy instead of wedge or radiation. Dr said only time will tell!!! But he did say lobectomy has 5% recurrent while wedge has 15% recurrent. As for comparison between lobectomy and radiation, he said the radiation outcome is non inferior to lobectomy outcome. He cannot elaborate more of what that means because that’s exactly what the study claimed and he is not a radiation oncologist. I don’t know what “non inferior” means either. Does it mean same outcome? Or better outcome? Or just equal outcome? Can anyone can explain this?

 

[LexieCat]

Hi, Minh,

Glad your surgery is behind you. Keep doing your breathing exercises and your shortness of breath should steadily improve. I can't speak to recovery from thoracotomy (I had VATS), but hopefully you will have a speedy and uneventful recovery from that.

"Non-inferior" means just what it sounds like--no worse; just as good. Most things I've read say surgery is better, but radiation techniques have improved, so maybe that's so, now.

You made a very reasonable decision after weighing all the factors. Please don't make yourself crazy wondering if you made the "right" decision. I passed on post-surgery chemo and sometimes wonder if that might have made a difference in my case. But there is nothing to be gained from second-guessing and my docs all say that they would have done the same thing in my shoes. And really, I'll never know.

So try to put away the second-guessing yourself and focus on your recovery. Hope it goes well!

[LouT]

Minh,

First of all thank you for the update.  It is good to hear that (overall) you are doing well.  Yes, it will be uncomfortable, but every day will get better and you'll find more of a return to "normal".  Remember to use your spirometer and keep those exercises going.  They will strengthen your lungs and help you to cough to keep them clear.  Also, remember the "tips" to keep a pillow to hold against your incision when you do cough as well as keeping your bed elevated to make your breathing easier.  Your healing will take a bit longer than VATS, but the doctor made a choice based on his knowledge and out of caution for your health.

BTW, your doctor is correct; the lobectomy is considered the "gold standard" for treatment of most stage 1 cancers.  Fingers crossed for your tissue biopsies to come out clean and that you'll be up and around more and more.  Stay strong.

Lou

[BridgetO]

Hi Minh, I wish you a speedy recovery!  I agree with Lexie about your decision being a reasonable one. I think that in a lot of situations, maybe  most situations, there's no strictly "right" or "wrong" decision and that there may be a number of "good" ones. Your decision was clearly a "good" one, based on information you gathered and your own feelings and priorities.  Look forward and engage in your recovery!

[Tom Galli]

Minh,

How about that! Up and lapping the ward. Good for you. Keep faithful with the spirometer and push yourself to add a little distance to your ward lapping every time out. Also, try and sit in a chair in your room for a while as an alternative to being in bed. In a thoracotomy, a vertical orientation beats horizontal every time.

Stay the course.

Tom

 

[Minh]

Thank you all,

Here is the latest report:

11-17-2021 - lobectomy (RLL) started out at 8:00am and stopped at 11:55. It was painful when I woke up. But anesthesia team gave more pain drug via IV. So the pain level went down to number 3 on the pain scale of 10. Now I walk like a baby - slow and short steps. They also installed 2 chest tubes and connected them to drainage systems. One tube for high side and the one for low side of the right lung.

11-18-2021 - Woke up feeling shortness of breath. Even talking is difficult. I couldn’t walk more than 10 steps without taking a break. While walking, I started feeling nauseated and started vomiting. Dr said nauseate caused by residual anesthesia after surgery. And it should be gone in couple days. And sob should reduce as I ramp up my walking and spirometer and exercise.

11-19-2021 - pain level went higher because residual anesthesia effect has gone. Now the real pain kicked in. I was bedridden for the whole day. They gave me pain medication pills to reduce pain. It worked, but it made me tired and sleepy most of the time. Then I have air leakage in one of the draining chest tube. So they wanted to fix it before discharging.

11-20-2021 - Drs (4 or 5 doctors) came in. I guessed most of them on training. Senior dr. claimed the air leakage has reduced compared to the previous 2 days. And he wanted me to stay one more day to make sure the leakage resolves by itself. So I am still in the recovery ward for now. They could discharge me tomorrow Sunday if all of complications are resolved or at least reached the acceptable level for me to manage my self care at home ( hotel).
 

Besides the air leakage and incision pain which radiate to my right side of body (include head, abdomen, and leg), I am still worry about sob. I never have sob this bad - even talking get me tired. But finally I force myself to walk as much as I can. Hopefully it will go away soon.

[Minh]

11-21-2021

I had lobectomy via thoracotomy and not VATS per surgeon preference. Surgeon  pulled the chest tubes and discharged me this evening 4 days after the lobectomy. I feel short of breath when walking and talking. I feel ok when sit still. My pain level is at 4 on the 10 point scale. Dr gave me pain medications to take home. These include Tylenol, gabapentin, and tramadol. Even I take these pain pills, my pain level stay the same at 4. So I guess that the most I get out of pain pills. The pain is tolerable but not crippling yet. I have to stay here for the next appointment on November 29 with surgeon to find out what will be next steps and also if he approves me flying home. Meanwhile pathologist supposed to get the results before Thanksgiving. It’s another anxiety comes right before Holidays again!!!

[Tom Galli]

Minh,

I'm sorry for the pain. It is to be expected. Please keep pushing yourself to get up and walk. Sit on a chair as opposed to lying down and use that spirometer frequently. 

I'm praying for a good pathology report.

Stay the course.

Tom

[LouT]

Minh,

Tramadol is okay.  I've used it with kidney stones.  But, after my lobectomy my doctor had me taking Ibuprofen and acetaminophen.  That combo worked as well for me as heavy duty opioids without any problems of grogginess or constipation.  I just used the same combo for some heavy duty oral surgery I just went through.  Speak with your doctor and he/she can tell you what dosages would be good for you.

Lou

[Minh]

11-22-2021

Thank you all,

Most doctors have gone vacations for upcoming Thanksgiving. Physician assistance called and verbally gave a report from pathologist: low grade adenocarcinoma 1.7cm, clear margin, no invasion to surround, no pleural invasion. All lymph nodes clean. Final stage pT1bN0M0. Final report will be posted on mychart soon. Not sure how to digest it yet. May be still need adjuvant chemo? Still have to wait until dr. come back on November 29 to discuss. Meantime, I stay on campus for recovering.

[LouT]

Minh,

It will be up to your doctor whether to follow up with adjuvant treatment or not, but all you are listing there is pretty good news.  It should be a load off your mind.

Lou

[BridgetO]

Minh, I agree with Lou that it's pretty good news- about as good as you can get with a diagnosis of lung cancer! I'm sorry to hear about your pain, though.

[Tom Galli]

Minh,

I think the path report is superb news!  Perhaps even the best possible news. It means to me that you should relax about lung cancer and focus on surgical recover. Keep lapping, staying vertical and exercising with the spirometer. 

Stay the course. 

Tom

[Judy M2]

Great news, Minh. Hope your recovery goes well.