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G.A.M.

Back on the Roller Coaster

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The Pulmonologist I met with today, (the last of three MD appts this week), flat out disputed the surgeon's opinion that my lungs were "marginal" and STRONGLY encouraged me to cancel the SBRT the other doctors are working on.

He said I am at two liters now and would be at 1.6 liters after the surgery which would sustain me without supplemental O2.

Any advice?

 

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GAM,

I'm sorry that I don't really know the background of your situation enough to offer any meaningful advice.  I do get that your Pulmonologist wants you to cancel the radiation therapy, but I'm not understanding the context of the information.  Possibly my friends have more exposure to your case and I'm sure they will provide good experience-based recommendations.  

Lou

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Glenn,

I can't give you medical advice but my experience with SBRT was quite good. It was painless, quick, and no side effects. I've been NED since I completed that treatment. 

You also sound like so many of us with multiple "ologists" looking after us. I had the thoracic surgeon, two different oncologists, a pulmonologist, an ENT (due to mets to the thyroid AND thyroid cancer) and my primary. I am currently down to my medical onc, my primary, and my pulmonologist. My pulmo defers to the oncologist for the big decisions. We all treat him as the quarterback and he has been fantastic at keeping all of the docs in the loop.

The balancing act is just another part of this journey.

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Glenn,

SBRT will scar the tissue that contains the tumor. Here is some information on lung capacity from the American Lung Association. I assume your pulmonologist performed a Spirometry test to determine your 2 liter capacity. I had my right lung surgically removed and have about 1.8 liters of capacity.  I've not needed supplemental O2. If it were me, I'd side with the pulmonologist.

Stay the course.

Tom

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@G.A.M. I had an upper right lobe lobectomy a year ago.   I’ve been NED since with no follow up treatment.  I am a believer in surgery but understand that recover and lung function need to be considered on an individual basis.  I found this sturdy on SBRT published in 2016.  The conclusion was, “The results of the present trial show that SBRT pro- vides excellent LC and survival outcomes at 36 months with minimal lung toxicity. Importantly, SBRT had no significant impact on lung function at 36 months. These findings provide further support for the use of SBRT as a radical treatment for NSCLC, even in patients with poor pulmonary function before treatment.“. 
 

Here is the full article pdf

 

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I finally consulted an oncologist I trust who climbed off the fence and told me to get the surgery. He said as long as I'd gotten my strength back from my last surgery in October (I have), I was good to go. He said I'd likely come out of it NED and my oncologist is a good one.

So, next Thursday morning @ 7 AM.

@Curt what were your days in the hospital like? I hope I'm coherent for the Superbowl.

 

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Are you having a lobectomy by VATS (video assisted) or open surgery. I had a VATS lobectomy and was released from the hospital the day after, with a chest drain in place.  That was an unusually short hospital stay, most people are in for a couple of days at least. VATs surgery is not so bad, as surgeries go. You should be coherent for the Superbowl.  One recommendation: if you don't already have a wedge pillow (or an adjustable bed, I recommend you get one. Sleeping or resting with your upper body elevated, you'll  probably find it more comfortable and easier to breathe after surgery. Keep us informed about how your doing.. 

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G.A.M.

Curt and I both had lobectomies so I can tell you my experience.  In my case I had my surgery on May 2nd and went home on May 6th.  The most discomfort I had was from the chest tube they keep in you to prevent a collapsed lung.  Once that was out my pain was handled with a combo of Ibuprofen and Tylenol (which worked surprisingly well).  So, other than my first two days in the hospital I didn't require much in the way of opioids.  So, first answer;  You should be fine for Super Bowl.

Once I got home I used a wedge pillow and it really helps you to stay clear and sleep better, I also used the Spirometer they gave me like crazy (builds the lungs up and keeps you clear), After the first week I started walking again, (starting at 2 miles/day and working up to 5 miles/day), and while I had some shortness of breath the first few days it went away quickly (mostly caused by tightness I felt) and by the end of 5 weeks I was back to 5 miles/day of walking without any need for supplemental O2.  

My coaching to you is follow the instructions in the hospital...take your pain meds there (you'll need them and I had a hard lesson thinking I didn't need them) and then sleep comfortably and exercise to your comfort level.  You may also want to keep a small pillow at hand so that you can press it along your "surgical side" to soften the effect of coughing (which you'll do in the beginning).  Eat healthy and drink a lot of water and you should have a good recovery.

Good luck to you and please update us post-surgery, when you can.

Lou

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@G.A.M. I hold surgery as treatment in high regard.  I had an upper right lobe lobectomy via video assisted thoracoscopic surgery (VATS) at the end of last February.  Recovery is different for everyone.  Here was my experience.  It was three incisions, one under my arm, one on my side and another on my upper abdomen.   After the surgery I had a drain tube in the incision on my side.  I had the surgery on a Tuesday night, was up and walking short distances Wednesday morning and released on Friday afternoon.  Requirements for release were that I was able to walk each day, my chest was clear of air pockets and the drain was removed.  I know others have been released with the tube (drain) in.  They will manage your pain really well while in the hospital.  Don’t be a hero, take the medicine.  I decided I was feeling so good that I could go a little longer with no pain meds.  I was very wrong.  Once I was home I slept a lot.  The first few days I had an arm chair next to my bed.  I would get up, eat, walk, sit there for a bit then go back to sleep.  I took pain medicine until Sunday and then moved to alternating Tylenol and Motrin.  The pain pills caused constipation and the gabapentin (nerve blocker) made my head feel like it was spinning.  I felt much better without both, you should take whatever you need to take for as long as you need to take it to make sure you aren’t in pain.  You should walk and do breathing treatments as much as possible.  Both are easier if you aren’t in pain.  By Monday I ventured to the coach and was able to stay up for longer periods of time but was still tired.  It took about ten days for me to venture out of the house for a haircut, two weeks for me to drive.  Three weeks before I went back to work.   I did not require any follow up treatment and have been NED since the surgery.  I have some numbness in the side where my surgery was performed and some pulling internally when I cough.   Neither are painful or disruptive.  Surgery isn’t fun but it is not as bad as I imagined it would be.  My breathing is back to pre surgery levels and I’m not limited in my daily activities.  Some tips:

- the wedge pillow others have mentioned.
- a small pillow to squeeze when you sneeze or cough.  
- walk as much as you can. 
- do the spirometer (breathing exercise) as much as possible.  
- rest as much as you can.  

 Any other questions along the way please ask.  I’ll be rooting for you.  

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Nice string. I have a 4.9 cm carcinoid in my lower lobe right side. 58 years old. Looks like two nearby lymph nodes may be affected. Meeting my surgeon for the first time tomorrow. Have completed all the pre OP testing. So two questions..

How soon after consult can I expect surgery. Been going through diagnosis since early December.

Second...I have read that an open surgery is better for larger tumors and for any potential upstaging versus VAT. Any opinion? I'd rather take a little harder surgery if it has better diagnostic value.

Thanks

Tom

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Hi @TJM   I responded to your other post.  I’ll try to answer your questions here.  

The only prerequisite to surgery for me was a pulimonary function test and the normal preop blood work.  I had my consult on December 24 (yes Christmas Eve) of 2018 and the Surgery in February 28.  I could have had it in January.  I delayed it a bit so I could go on an already  schedule family vacation.  At the time I didn’t know it was cancer.   There was a 60% chance I was removing a benign nodule.  It will all depends on the surgeons availability.  
 

People do have to have “open” surgery if the tumor is too large or more often if it is in a place they can’t get to via VATS.  Your surgeon will be able to tell you which is required.  I had mine via VATS.  The recoverY time and ongoing side affects are different for both.   VATS is the easier of the two and is as affective as open surgery when used in the right circumstances.

Good luck today.   
 

@G.A.M. I wasn’t clear if your surgery was today or next Thursday.   If it’s today good luck.  Let us know how you are doing when you feel up to it.  

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Thanks for the very thorough reply, @Curt. I'm getting as ready as I can for next Thursday. I'll let you know how it goes.

Best,

Glenn

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