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LouiseB

Newbie - Husband has NSCLC adenocarcinoma, Stage I

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Aloha! Firstly, I'm delighted to have found this site. I've done a lot of reading since my husband was diagnosed, but now it's helpful to find an interactive site where I can read about real folks' journeys, and ask questions of those who have been or are going through similar experiences.

My husband's diagnosis was confirmed March 20 2018, five days after his 64th birthday: adenocarcinoma, right lobe. We are so fortunate that it's been identified as stage I, and appears to be restricted to one lobe. We've gone through the entire waiting game as I guess everyone does: chest x-ray in February, 'cloud' assumed to be pneumonia, course of antibiotics that didn't work, CT scan, initial possible diagnosis, lung biopsy, confirmed diagnosis, PET scan (nothing else lit up), brain scan (nothing found, heheh!), EBUS biopsy to check lymph nodes (clear). The EBUS result was a huge relief, as the surgeon had said that if anything showed up he would want him to have a course of chemo first, which would delay the surgery... My DH (thanks for the abbreviation list!) would have been v upset by that as all he wants is to rip the sucker out asap!! ;)  The final pre-op hurdle was a stress test today to ensure his heart was strong enough for surgery (thankfully he passed with flying colors), and he is scheduled for surgery (robotic lobectomy) this coming Monday, May 7.

While writing this, he just came in to show me the uneven shaved patches from today's electrodes; more than hirsute, he's bordering on gorilla-man, so we had a good laugh, and I said I'll probably get stubble-burn when I lie on his chest tonight! :D

We live on Kaua'i, so have had to travel to O'ahu for several of the scans, and he has to fly over for the day on Friday for the pre-op. We will both go over for the surgery, so I will stay in a hotel while he's in the hospital. The extra travel arrangements and expenses of so many separate trips are a bit frustrating, but I guess that's often the same for folks on the mainland who live a long way from a specialist facility. However, we are so thankful for all the wonderful consultants, surgeons and medical staff that we have met so far, both on this island and O'ahu.

Having read that many are diagnosed stage III or IV, and it's not often caught this early, we are feeling very fortunate indeed, but I still have worries and questions.

I know that the robotic-assisted surgery is the least invasive type of treatment, and should provide the quickest recovery, but I still wonder what I might expect, as his carer, post-surgery, both in the first couple of days in hospital and also in the weeks and months ahead; also what is the likelihood of him requiring or not requiring any post-op medications/chemo etc.? Should I put those questions out in a separate topic perhaps, or is someone likely to see them here?

Anyway, thanks for 'listening' and, again, thank you for this awesome support system.

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Hi Louise, and welcome to the best club nobody wants to join. I'm sorry about your husband's diagnosis, but glad to hear it was found early, I had adenocarcinoma stage 1a, found in a Ct I had for something else. I had video assisted surgery (VATS) in November 2016 to remove my lower righ t lobe. I had a fairly easy time of it. I was released from the hospital the day after surgery with a chest dreain tube in place. I was up and walking around  my neighborhood in a couple of days, wearing a big raincoat to cover the drain tube and bag. I had a prescription for opiate  pain meds which I used some unitl the chest tube was out in 10 days. After that I uses some tylenol and ibuprofen. Once the tube was out, I was pretty comfortable. I didn't need any furhter treatment with 1a. Some people with 1B do have chemo. 

 One thing I suggest is ep  a foam wedge pillow. Generally after chest surgery it's recommended that when lying down, you keep your upper body raised. This makes breathing easier. I tried using a reading pillow and some other pillows but ended up with a sore neck. After a couple of days I got a 12-inch wedge pillow, which was confortable. A shower chair was also handy post-surgically.

If you have any specific questions, be sure to ask. We're here for you.

Bridget O

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Good morning, Louise.  So glad you found us!  Sorry to hear about your husband's diagnosis but oh so happy to hear it was caught early.  Bridget is spot on with the wedge pillow and shower chair.  The most important thing is for your husband to get up as soon as the docs say okay and start moving.  I had the traditional lobectomy and was up walking the day after.  It was a sight - had to have a wheelchair to hold my IV, catheter, and bag for my chest tubes. 

I made my first visit to Kaua'i last May and fell in love.  Was hoping to return this month, but had to make other plans.  Hopefully you were not affected by the recent flooding.  The pictures were shocking.

Please let us know how we can help you.   

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I had the VATS removing right upper lobe on 2/16/2018. 13 lymph nodes removed, 4 found to be cancerous.  I went in for surgery on Friday, released from hospital on Sunday. The evening of my surgery, they had me up and walking. The drain tube was removed Sunday before my release. I found sleeping with a bed pillow...other pillows in front and sheepskin type covering over all was most comfortable. The wedge did not work for me. I never had pain from VATS surgical sites. It was my drain area in front and large muscles in back and side that got my attention.  I had gabapentin pills for pain and over the counter salon pas (lidocaine) patches for large muscles helped (not on any surgical sites).  Drinking lots of water, resting and getting in some short walks seemed to help.  Even though the surgeon and oncologist said I am cancer free after surgery, I am doing chemotherapy and radiation to aggressively keep it away.

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Hi Louise,

I thought I would share my perspective from a caregiver's point of view. My mom  had a lobectomy in January 2016 to remove her right upper lobe. She had "old fashioned" surgery - big incision. She was in the hospital for 10 days, mainly because she had a big air leak due to unanticipated extensive surgery to an unsuccessful attempt to remove a lymphnode. Then the surgeon took the drain tube out too quickly and had to re-insert one.  Most reasonable healthy people don't have to stay in the hospital that long, but when she did get to go home, she was strong enough to do most things herself.  She had to have follow-up chemo and radiation afterward because they were unsuccessful in removing the 1 lymphnode that was involved.  That was not the original plan as we did not know any lymphnodes were involved prior to surgery.  Your husband's surgery should be much less invasive since it is "new fashioned" surgery, thus making an easier recovery.

You asked about your role, what to expect.  My mom is a very good patient, she does what she's told.  I made sure she was drinking a ton of water and got her up walking as soon as they would let her (I think it was on day 2 after surgery). She also has a pretty high pain tolerance, so I made sure that she was only using the morphine pump when she absolutely needed it so there would be less of a time coming off of the drug.  After the first few days, pain was controlled by ibuprofen.   I regularly asked about her pain because she tends to go too long without taking anything for it. Other than that, she was able to care for herself when she got home.  My dad kept an eye on her bandages and helped change them if/when needed.  She has an adjustable bed, so there was no need for a wedge pillow, but she does use a body pillow as she still cannot sleep on the side of her lobectomy because she feels like she can't breathe.  She was back doing her normal things within 3-4 weeks.

I really appreciated your comment about the bare spots on your husbands chest and the chuckle you got out of it.  One of my mom and my funniest moments was just prior to a Billy Joel concert.  She had just finished chemo and had no hair, but she still had eyelashes and eyebrows.  She rarely wears make-up but decided to wear some for the concert.  When she went to apply mascara, her eyelashes fell out.  Some people may be appalled by it, but she thought it was hilarious and we still laugh about it.  I think as a caregiver, trying to find those things in which we can laugh about is important (at least for my family).  

I am sorry you and your family are having to travel down this road, but you are in good company here on Lungevity's forums.  There is lots of great information on the website and very supportive people here on the forums.  Feel free to post your questions anywhere you want, we will find them and reply.

Take Care,

Steff

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Aloha  Bridget, Susan, Laurel, Steff!

Oh, this is amazing. Thank you all for your quick replies and great information. It's interesting to hear different stories and suggestions. I had not thought about a wedge pillow and, even though it seems it may or may not work, I shall definitely order one. Living on a remote island, we have to order anything out of the ordinary online and get it shipped, so it's good to know this sort of thing in advance, and I'm sure I'll find someone else who can use it after he's well, or if he doesn't like it. I also hadn't thought about a shower chair. He might not need one, but I know we have something that is ideal if he does.

I am hoping the drains will be removed before we leave hospital, but again it's good to be prepared and have some thoughts on how to deal with it (even a large raincoat in Kaua'i will not be out of place currently with the crazy weather we've been having!) 😛

I'm also grateful to know that he might have to have chemo after the surgery even though it's supposedly stage I-something. Again, forewarned is forearmed, and if he doesn't then that will be a plus.

He is typically a pretty good patient, and very tolerant of pain. He will also be keen to get up and about as soon as allowed (if not before), so he won't need any encouragement there! 😆 He's gone through a neck fusion and two lower spine surgeries in the past 10 years and needed very limited pain meds, so I'm hoping he will do as well this time. The difference with this 'event' I'm finding so far is that, of course, this sucker is a very different being...what with wondering if the surgeon will find more than we bargain for when he's in there (like some cancerous lymph nodes when the EBUS showed they seemed clear), and then getting used to living with that background thought that it might rear its ugly head again in the future, it's hard not to let those worries drift into my mind at times, but I'm trying to stay positive and not mentioning my concerns to him - no point worrying about something that might not happen, right?!😎 With his other surgeries, it was just a case of get over it and forget about it.

I know I can learn a lot from those of you who are long-term survivors and also caregivers. Just reading your stories and seeing how you are truly living your lives gives me huge encouragement that we can get out the other side of this and enjoy living again. 👍

Susan: Happy to know you've discovered and love our little island. Luckily, we live in Princeville which is on high ground and was very little affected in comparison to our poor friends in other parts, especially on low ground and in valleys where gentle little streams turned into raging rivers. Our garage flooded but not the house (by just one inch from the front door step!!). Sadly, our canoe club in Hanalei was devastated, but we will rebuild and no doubt be stronger for it! The couple of weeks since have been incredible. The community immediately jumped into action; everyone is pitching in to help those who are homeless or still trapped beyond Hanalei. A group of us spent most of Monday unloading and distributing the entire contents of a container sent from Maui residents - filled floor to ceiling and back to front, not an inch of space unused...everything from hotel-sized shampoos, food, water, baby food, pet food, cleaning supplies, all the way to chain saws and generators. On the north shore particularly, we are overwhelmed by the flood (poor choice of words, but oh well) of donations and help we have received. We've been supplying foods and everything else imaginable by boat and helicopter, but now they have one lane open sufficiently to take most things in by ATVs towing trailers. I'm so sorry you weren't able to visit this month as planned. Please let me know if you plan another visit and we can meet up.

I shall keep returning to your comments above over the next few days and reminding myself of all the suggestions and words of encouragement you've given me. Thanks again. You guys rock! 

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Louise,

I am happy that your husband has your support. I had 2 thoughts after reading your reply.

1. My mom has a neck fusion and has had several lower spine surgeries as well. The anesthesiologist who did her lobectomy showed some concerns with getting the tube down her throat due to her not being able to tip her head all of the way back. Her pulmonologist just rolled his eyes at his concern, but it freaked me out! They had no issues during surgery or any other procedures afterward. I think he was just being cautious and thinking of all issues, which I appreciate, but it was still unnerving. I just wanted to share that in case it is mentioned to your husband. The wait during surgery is hard enough without hearing stuff like that!

2. I don't know if this is available on Kauai, but my mom often uses a local store who allows patients borrow assistive devices. My dad has a neurological disorder and has needs for assistive devices like shower chairs, walkers, wheelchairs, etc. A lot of the stuff is brand new or gently used. It's been helpful to borrow things that we only need for a short time (a few months). Having cancer is expensive enough, so whenever we can save money, I'm appreciative! Although I don't recommend this for a pillow but other items can be easily disinfected before use.

Hope these thoughts help some...just some things I've learned long the way.

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Louise,

You've received a multitude of good advice which I endorse and so welcome!

I am fortunate to have visited your lovely island paradise a number of times and have enjoyed the majesty of Waimea Canyon as a tourist, and in my younger years, while on Army active duty, hiking areas in proximity to Mount Waialeale as an adventure training experience.  While the scenery was spectacular, the hike, actually a forced march with full field equipment, was no vacation.  And it poured rain, every day....  I am, therefore, well acquainted Kauai's rainy season.  Mount Waialeale is the second wettest spot in the world accumulating 450 inches per year.  And it seemed every inch fell on me during that adventure training experience. 

While in Honolulu, you might be able to stay in the Hope Lodge, a hotel for cancer patients and caregivers while your husband has his surgery.  Here are details on the Honolulu Hope Lodge.

You mentioned your husband was staged as I. If it is stage IA, then surgery may be the only treatment he receives.  If the diagnosis is stage 1B, or if the surgeon discovers other suspect areas during the surgery, then you may be prescribed post surgical, or adjuvant chemotherapy. This is designed to address any stray cancer cells afloat in the bloodstream.  If adjuvant chemotherapy is suggested, be sure to ask if it can be administered at a local clinic in Kauai.  This type of chemotherapy is pretty common so availability in the Kauai medical system ought not be a problem.

Questions?  Indeed, this is the place.

Stay the course.

Tom

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Many thanks, Tom. Yes, wonderful to get tons of great information so quickly.

I had read about Hope Lodge, but it seemed to indicate it was for cancer patients and caregivers to share a room, not just for caregivers while patients are in hospital. I will definitely contact them to check it out, mahalo!

Interesting to hear of your Kaua'i experiences. The training definitely sounds like a tough duty!

We will certainly plan for chemo, if necessary, to be administered on our island. I know of one or two oncology centers here, which I assume is where we might be sent for post-op treatment.

I'm sure I'll think of more questions soon. 😎

Best wishes to you - Louise

 

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9 hours ago, Steff said:

Louise,

I am happy that your husband has your support. I had 2 thoughts after reading your reply.

1. My mom has a neck fusion and has had several lower spine surgeries as well. The anesthesiologist who did her lobectomy showed some concerns with getting the tube down her throat due to her not being able to tip her head all of the way back. Her pulmonologist just rolled his eyes at his concern, but it freaked me out! They had no issues during surgery or any other procedures afterward. I think he was just being cautious and thinking of all issues, which I appreciate, but it was still unnerving. I just wanted to share that in case it is mentioned to your husband. The wait during surgery is hard enough without hearing stuff like that!

2. I don't know if this is available on Kauai, but my mom often uses a local store who allows patients borrow assistive devices. My dad has a neurological disorder and has needs for assistive devices like shower chairs, walkers, wheelchairs, etc. A lot of the stuff is brand new or gently used. It's been helpful to borrow things that we only need for a short time (a few months). Having cancer is expensive enough, so whenever we can save money, I'm appreciative! Although I don't recommend this for a pillow but other items can be easily disinfected before use.

Hope these thoughts help some...just some things I've learned long the way.

Both very helpful pointers, thanks Steff!

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Hi Louise

You have received alot of good advice and I am sure you will receive alot more.

i just wanted to comment on chemo afterward.  I was diagnosed in 2007 with stage 1B and I had my upper left lobe removed by VATS surgery. I became a member of this site shortly after and met alot of great people with good advice. At that time they did not recommend chemo for stage 1. Because of advice i received here I pushed for adjuvant chemo and even had to get a second opinion. I was not looking forward to chemo but I felt I wanted to throw everything at it in hopes of preventing a recurrence. I was concerned of stray cells that got away before the surgery. I also thought if it got too bad to have all 4 rounds then whatever I had was a benefit. I did complete all 4 rounds and found it was not as bad as I expected. 

I just got my annual results this week and I am still all clear 11 years out. i would certainly discuss adjuvant chemo with your Oncologist.

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