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MarieE

Another newbie ... Still a bit in shock

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Everything in the last month seems to be happening at light speed. My husband's cancerous lung mass first was found as an incidental finding on a CT scan taking for another purpose. That was followed by a PET scan and biopsy (confirmed squamous cell lung carcinoma), MRI of the brain, bone scan, and breathing function tests. We consulted locally with an oncologist, a radiation oncologist and a thoracic surgeon. The mass is just under 5 cm. At this point they don't believe it has spread. My husband is very active and has no symptoms whatsoever although he complains of some minor discomfort since the biopsy. All of the doctors consulted and agreed that a lobectomy was the best route since the the tumor is right up against the heart in the upper left lobe. We quickly scheduled surgery but then started having second thoughts and want to be sure we've done all our homework first. We are reading about proton radiation and also considering traveling to one of the large cancer centers for a second opinion. My husband is concerned about the long recovery with surgery (he's not a good patient). I've started going through all of the information on this site and am finding it helpful, but a bit overwhelming - like everything else about this.

ETA: I guess in a way we're fortunate it was found. If it had not been an incidental finding on that first CT scan, he may never have received any screening since he never smoked and there was no history in his family.

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Hello’s @MarieE   I’m sorry to hear about your husbands diagnosis.  I know how he feels.  I was confronted with doing a wedge resection without actually knowing if the nodule I had was cancer.  During the resection they determined it was cancer and did a full upper right lobe lobectomy via VATS.  My lymph nodes were clear and it did not spread anywhere else.  I was terrified.  I had visions of significantly decreased quantify of life, walking around on oxygen and being generally debilitated from the surgery.  None of that was the case.  I am a little over seven months out and have recovered fully in terms of lung function.  I’d say I was fully recovered with lung function at around four months.  I was up and moving around normally after four weeks.  I do still have some numbness and tightness around the surgery site.  I am completely cancer free and have not required any follow up treatments.   If the tumor is close to the heart they may want to do an “open” surgery which requires a larger incision.  The recover time for that is a bit longer but the lung function part should be the same.  I know the word lucky and cancer don’t often get used together but if your husband has surgery as an option he is lucky.  It is one of the most affective forms of treatment for lung cancer.

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Hi MarieE,

Welcome to the forums that none of us want to be part of. I wanted to chime in to let you know that there is hope. I was diagnosed through a pre-op tests with stage IV squamous cell with mets to the lymph nodes in my left hip. I am not a surgery candidate but after chemo and now immunotherapy I am on my way to NED. Every day there are new options for lung cancer patients and with any luck one of them will work for all of us. I just wanted to wish you and your husband the best of luck through your journey and try to stay positive. I know this is hard to do sometimes but positive thoughts, watching positive movies (Healing on Netflix for example) listening to your favorite music, quiet meditation and doing whatever makes you smile can help you stay in a good state of mind. I believe positive thoughts is some of the best medicine. Please keep us in the loop.

Claudia

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Thank you both for the helpful posts. We do know we are extremely fortunate it was found relatively early and that, so far anyway, it does not seem to have spread. The doctors so say that if it were anywhere else and not right up against his heart, CyberKnife would have been a great option with easier recovery and similar effectiveness. We both are active and scuba dive regularly so being able to continue to dive is a bit of a concern. It would definitely affect our quality of life if he could no longer dive - but then of course, the little voice in my head points out that at least he’d be alive! I’m hoping we’ll at least have a plan by the end of this week. We will visit SFPTI and I’ll also be calling Moffitt today to see about a consult. 

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He’ll still be able to be active after some rehabilitation.  My lung capacity is the same as it was pre surgery.  Scuba diving may be a longer term challenge, especially if you are going deep.  It would be an awesome goal to work towards though.  Definelty would inspire others.

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Marie,

You are asking about proton therapy or stereotactic radiation as an alternative to a single tumor discovery in a tricky location. I've had both surgery and CyperKnife (stereotactic radiation) treatments by the way and my surgery was a complete pneumonectomy--removal of my right lung by conventional means.

I believe surgery is the best course of action and represents the best possible outcome for minimizing recurrence.  Why?  A surgeon can actually see the tumor to be resected and seeing the tissue allows greater precision in removing the entire tumor along with a safety margin of non cancerous tissue.  While proton therapy is very precise in delivering tumor-killing doses, the application is based on imaging technology, not a visual examination. Imaging technology can be very accurate but I believe it is not as effective as seeing the tumor as it presents in the lung.

I had a complete pneumonectomy removing my right lung. I had suture complications from that surgery that required two more follow-up thoracic surgery procedures but my initial recovery period was about 5 days in the hospital and 5 recovery days at home. 

I completely understand the concern about lifestyle after surgery. I'm not a diver so I couldn't give an opinion of what might be possible post surgery. But surgery gives one the best chance of avoiding a recurrence of lung cancer and that indeed is the risk of using only proton therapy or stereotactic radiation. I would ask your husband's consulting doctors if surgery is an available treatment method if there is a recurrence after proton therapy or stereotactic radiation. One more point on proton therapy: it is a very expensive treatment and medical insurance companies are very reluctant to approve it.

Stay the course.

Tom

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Hi Marie,

Like your husband a nodule was found in an unrelated CT Scan and after additional testing and diagnosis the decision was made to remove my lower-right lobe.  Like Curt, I still have some lingering numbness and discomfort, but nothing that requires medication.  Prior to the surgery I would do 5 mileson a treadmill (or outside when the temp wasn't 90+) and also a good 30-40 minutes of weights to keep in shape and I'd do this six days a week.  After my surgery recovery started the first week and (with plenty of breaks in between) I could walk around the house and hit one mile, then two and onward until, after about 2 1/2 months I was able to get back on a treadmill go 5 miles at a  slow pace.  Now, 5 months post-surgery, I'm back in full swing doing my 5 miles/day at close to 4mph (a jog) and back to full weights.  Occasionally I can feel a bit winded, but I believe I've regained about 95% of my functionality (pretty much what my surgeon had predicted would happen).  My first scan, 3 months post surgery, showed NED (No Evidence of Disease) and I was glad that I had agreed to the surgery as it is still considered the gold standard to reduce recurrence (when surgery is appropriate).  

This is a difficult time for sure and we have all had our dark and frightening days with this disease, but there is hope and I can tell you that more is being done against this disease now than at any other time.  I can't speak to the fact that your husband is a diver, but I was a professional musician for many years and since retirement have been recording and doing music in a home studio so as you can guess my voice was important to me.  I'll admit that took longer than anything else but I'm finally getting back to where I was before.  I have no doubt about the difference, but that difference is getting smaller all the time and the gift of life is a big one...you can't sing or dive if you're not here.  So, please try and stay positive, you and your husband can achieve more than you might believe right now. 

Please keep us updated and ask any questions you may have.

Lou

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Thank you all for sharing your thoughts and experiences. It has definitely helped. It seems that everything concerning this disease seems to move along at light speed. We had a very informative consult regarding proton therapy yesterday and ended up back where we started: Surgery is the best option. We will have one more consult today to be sure we are as prepared as possible, and the surgery will be next week. It's not what we want, but isn't that often the way things are in life? My husband is strong and he will make it through this and recover. Of that I have no doubt. We still are very fortunate that it was found early (and quite by accident), although we'd obviously prefer it were never found at all. 

Thank you again.

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My thoughts and prayers will be with you both.  Any specific questions on the surgery and recovery just ask.   

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3 minutes ago, Curt said:

My thoughts and prayers will be with you both.  Any specific questions on the surgery and recovery just ask.   

Thank you. I'm sure we'll be back with some. Right now our biggest concern is that the surgery may not be able to be done robotically, but we will deal with whatever comes. And heck, if we can't dive together anymore, that will give us time and money to use elsewhere once he has recovered. 😉

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Hi MarieE!  You have received some great advice already.  I also just wanted to mention that there is a section here for caregivers and also a caregiver group on Facebook.  You are, of course, welcome to post in all threads but there are some times where it helps to connect with other caregivers specifically.  :)

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1 hour ago, LUNGevityKristin said:

Hi MarieE!  You have received some great advice already.  I also just wanted to mention that there is a section here for caregivers and also a caregiver group on Facebook.  You are, of course, welcome to post in all threads but there are some times where it helps to connect with other caregivers specifically.  :)

Thank you!

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Marie,

Ensure you ask if your oncologist recommends a course of post surgery chemotherapy. Depending on the diagnosis stage and tumor size, post surgical chemotherapy is a common treatment. It is designed to sweep the blood and lymphatic systems of cancer cells and it is an important insurance policy to avoid recurrence.

Stay the course.

Tom

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Thanks, Tom. The surgeon did mention the possibility of post surgery chemo. He also said they will check the lymph nodes for cancer as well and also do biomarker testing. Hoping for the best and trying to stay calm ... The bone scan and brain MRI came back clean so that is definitely encouraging.

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Just a quick update ... Just a couple of days away and my husband seems to be doing great. I'm the one who's having the nightmares and problems sleeping. I think he's better at denial than I am. 😉 Haven't had much time on the computer later but I'll definitely be looking for the caregivers' group. I don't expect this is going to get any easier for awhile. We're going out for a big brunch at one of our favorite places tomorrow and then just trying to get everything ready for early Tuesday morning. Hoping the surgeon is getting much better sleep than I am these days!

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Thank you. We are a few hours in on the surgery. OR nurse called with one update so far. Expecting another one soon. I think it took a bit longer than usual to intubate but so far so good. The waiting is tough. 

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Yesterday was one of the longest days of my life. The actual surgery took about 3 hours although it was about 6 hours of waiting for me. It was a relief when the surgeon finally came out and told me the surgery was a success and they were able to complete it robotically. The negative is that one of the lymph nodes tested positive so we know he definitely will have follow up treatment once he is strong enough. But at least we know. If we had gone the radiation route, they would have targeted just the tumor and we'd have no idea it had spread. 

I think the drain is what is giving him the most discomfort at this point, but he said the pain is manageable. He's already been up this morning to get cleaned up a bit. This man amazes me. ❤️

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Marie

So glad to hear that the surgery went well. Yes that pesky chest tube is uncomfortable, but as your husband says, manageable.  Based on my experience he has a good chance of going home in a few days. Unless you have an adjustable bed i  recommend getting one of those wedge pillows. It makes resting much easier.  Also make sure your hubby takes pain meds as prescribed. I thought I could do with out them and learned a hard lesson.  He’ll also be given a spirometer to work out his lungs and keep them clear. Please make sure he uses it as instructed. It really helps with recovery. 

Please update us and ask any questions you may have.

Lou 

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I love good news!  I completely agrree with Lou's suggestion about a wedge pillow. It made my recovery at home much more comfortable. The chest tube is generally uncomfortable.  I was released the day after my VATS lobectomy with a chest tube in place (with an attached one way valve and a bag) because of an ongoing air leak. The tube was in for 10 days and I felt MUCH better once it came out. Best wishes to your husband for a speedy recovery.

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Well, he had an amazingly good day yesterday and was up sitting in the chair a lot. However he woke up at 3 AM with a lot of abdominal pain. Hope he didn’t push it too much yesterday. 

 

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I’m so glad the surgery went well.  The first week is rough but went by quick for me, probably not for my family.  Getting the chest tube out will provide some relief.  That usually happens within a few days.  Don’t be concerned if it takes a little longer.  It all depends on how well the fluid drains.  Walking helps with that.  The pain meds do cause constipation which could lead to abdominal pain.  He’ll likely be given a stool softener.  As Lou said it’s recommended to keep on a consistent pain medication regiment in the beginning.  Too many of us have tried to be the tough guys/girls only to find out we aren’t that tough.  The only person being tough when I did it was the nurse reprimanding me for waiting too long to tell her I was in pain.  She wasn’t happy and let me know it.  I didn’t do it again.  
 

It felt to me like I improved a lot in the first two weeks, hit a bit of a wall in terms of little improvement in the third week and was back to doing presurgery activities after four weeks.   To add to the recommendations from Lou and Bridget.  I walked around with a small firm pillow under my arm.  Something like a small, firm, decorative couch pillow.  It helped to keep my arm so it wasn’t laying against my incisions while I walked around, I hugged it when I slept and squeezed it when I coughed or sneezed.  Walk as much as he can, eat as best he can, cough (it’s very good for lung recovery), use the spirometer and get lots of sleep.  Don’t be surprised if he is VERY tired for a week or so.  Don’t be surprised if you are as well.  I’ve never been tired like that before, my wife said the same caring for me, and we had three sons in four years.  😳 

Hang in there.  It gets better.  

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