Lbelle78

Hi, I am sorry that you have received this devastating news but do know that being ALK positive means that you likely will have multiple treatment options. Also know that lots of us mutants have outlived predictions. I was diagnosed at the age of 45 in 2005---I am ALK+, have been stage IV for most of my journey, and I just marked 12 years since diagnosis. Check out my blog if you'd like more information about living (for a long time!) with ALK+ lung cancer: www.outlivinglungcancer.com  You are not alone. xoxo Linnea

Lbelle, we will pray for a clear report as well .


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Prayed for clear report.

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I goofed on the surgery date, it is April 21st. It would be glad to have that done, lol. I'm going for an EBUS to biopsy the lymph nodes in the Mediastinum tomorrow morning. The surgeon would not proceed without it, and it would delay surgery if node involvement found during the EBUS is an issue. We are praying for a clear report.

I goofed on the surgery date, it is April 21st. It would be glad to have that done, lol. I'm going for an EBUS to biopsy the lymph nodes in the Mediastinum tomorrow morning. The surgeon would not proceed without it, and it would delay surgery if node involvement found during the EBUS is an issue. We are praying for a clear report.

Ok, loved this new surgeon, scheduled for robotic lobectomy April 12. Still can't believe I am doing this. Scared to do EBUS for mediastinum biopsy and MRI, more the anxiety of waiting to hear results than anything. 

OK! Glad to hear your persistence paid off and that you're able to have robotic.  Best of luck!
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Lbelle,
Well it is somewhat settled and that is a good thing. I never had an EBUS procedure. Mine was an old fashioned incision at the base of my throat, but I quickly recovered. From what I've read, EBUS is a piece of cake. 
The special form of anxiety you are feeling anticipating test results is a common lung cancer survivor lament. I was so affected, I even wrote a book about it. 
Keep us in the loop and...
Stay the course.
Tom

Ok, loved this new surgeon, scheduled for robotic lobectomy April 12. Still can't believe I am doing this. Scared to do EBUS for mediastinum biopsy and MRI, more the anxiety of waiting to hear results than anything. 

Good morning.  I just wanted to say thank you to all who participate in this forum, whether it's a post, a response, or silent prayers and good thoughts from your home.  I sign on every day to read how others are doing, and to see if I might share experiences to help others.  This sight became my lifeline last spring and it's through this site that I discovered that a recurrence is not the end of the world, but merely a bump in the road.  I think of you all every day, send prayers, and cross fingers and toes for good results.  
Thank you!

Hi Lbelle,
I'm glad to hear your checking this out! Hang in there!
Bridget 

Hi Suepm, thanks for checking on me. I'm going Monday to the 2nd surgeon for his opinion on getting minimally invasive surgery. We are going in prepared to set a date either way as soon as he is able. Crazily enough our first surgeons office called yesterday and said they wanted to speak with me about robotic surgery performed by another surgeon in their group, when we were not initially told that was an option. That confirmed for me my choice to speak with the 2nd surgeon. Scared to get the ball rolling!!

Hi Suepm, thanks for checking on me. I'm going Monday to the 2nd surgeon for his opinion on getting minimally invasive surgery. We are going in prepared to set a date either way as soon as he is able. Crazily enough our first surgeons office called yesterday and said they wanted to speak with me about robotic surgery performed by another surgeon in their group, when we were not initially told that was an option. That confirmed for me my choice to speak with the 2nd surgeon. Scared to get the ball rolling!!

Thank you Meloni, good advice and for sharing your experience. Just the thought of surgery in general horrifies me. I want to be here for my family, and I worry about everything from making it through to potential complications afterwards. All of this is like a terrible dream. Praying and trying to trust Gods plan.

Good advice BridgetO, and thank you for it. They are so so emotional and scared, but thankfully although not happy about it, I believe are going to support my decision to wait for this appt. Yes, the surgeon told my husband and father that we do not need to be in emergency mode, to step back and research. My husband is the pastor, lol, so he feels out of his element with it being us now instead of others. Our church family has been awesome, bringing meals and such while I've been regaining strength after my pneumonia and bronch. I've been so scared that surgery is the end rather than a beginning because of the unknown, but you are so right about how we view and talk to others and ourselves. Thanks so much for the support!!

Thank you Meloni, good advice and for sharing your experience. Just the thought of surgery in general horrifies me. I want to be here for my family, and I worry about everything from making it through to potential complications afterwards. All of this is like a terrible dream. Praying and trying to trust Gods plan.

I feel i was left too long between ct scan showing a nodual that had grown slightly that had been stable for 2 yrs before and was seen on 13th oct last yr and had a pet scan in early november and a biopsy late november and told it would be just surgery and curable so surgery on jan 5th showed clear borders from the lobectomy and the small wedge resection on same lung and then i got a phone call telling me that there were cancer cells in 7/20 lymph nodes so i started chemo on feb 16th ...i often think if the surgery was done sooner after the biopsy that it may not have spread to the nodes.but i guess ill never know ......and i wonder if the biopsies set cells loose to metastasize ...

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April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
Meloni 
 

Lbelle,
I join others to suggest you've got plenty of time for a second opinion.  Bridget said it best -- you need to be comfortable with your surgeon, bedside manner and all things considered.  Take your time, get a doctor you trust, and....
Stay the course.
Tom

Hi Lbelle ,

I had asked my Surgeon if we could wait 3weeks for my surgery . I had been sick for several months and I was trying to clear up my lungs . He didn't have any problem with waiting . I will be interested in hearing about your second opinion . And praying for peace comfort and wisdom . Suepm


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Hi Lbelle. Successive CT scans showed that my tumor was very slow growing. My pulmonologist said that it needed to come out, but there was no big rush. I opted to go on a long-planned vacation and so it was a couple of months before I got in to see the surgeon, None of the medical team seemed to think this was a problem.  In contrast, I had another cancer (not lung) that was a very aggressive type  Everybody dropped everything and I was in surgery within about a week of the diagnosis. So I guess it depends on what the tumor is doing. If your doctor(s) say it's OK to wait to get a second opinion, it probably is. 
It is important that YOU feel comfortable with your choice. Not to say that what your family thinks/feels doesn't matter, but it's your body. Can you get everybody to take some deep breaths, pray, exercise, meditate, talk to their pastor or spiritual advisor or counselor or whatever might help them calm and be a support to you?
For me, it's important to learn as much as I can and make my own decsions about my treatment. I have also learned that the way  I talk to others about my cancer and the way I talk to myself about it also (if that makes any sense) is important.
Hang in there Lbelle. It's your life, your decisions, your story.

Thank you to everyone, you have all been so kind and helpful. Was able to get a followup appt.for in the morning, and our local nurse practitioner called my husband this morning to check on me and found out about our situation. She used to work for a pulmonologist at a large medical center nearby and is getting me an appt. for next week! 

Lbelle,
Reading Bridget's sage advice, i forgot about the importance of sleeping elevated after surgery.  Go to a mattress store and audition several for fit and comfort (you may find you need two 15 degree wedge pillows).  Record the name and model number, then order online for a substantial cost savings.  You may also need an array of firm pillows to be comfortable in your bed after surgery.  You want to transfer as much upper body weight as possible to your hips. I spent the first week after discharge sleeping in my chair recliner. My experience was 12 years ago and I've forgotten some of the basics.  We now own an electric adjustable bed with a high density foam mattress and these are wonderful!
On the chest tube, ask your surgeon at your before surgery consultation if you are likely to be discharged with a chest tube.  If so, they have models that can be worn on a sling across your body so they hang between your arm and chest.  This type can also be emptied by you when filled. It was called a mobile chest drainage receptacle.
Stay the course.
Tom

Hi Lbelle,
I had VATs lower right lobectomy in November. A bunch of lymph nodes were taken out and were all negative for cancer. Diagnosis was Adenocarcinoma Stage 1A. I woke up from surgery with no vent and no oxygen tube. I was quickly alert and chatting, went to a regular hospital room (no ICU) and was walking around the floor later that day. I was released the next day with my chest tube still in, attached to a Heimliich (one way) valve to drain fluid and air into a bag. The tube and bag were a nuisance. The bag tended to leak if not kept upright. I did go out walking in my neighborhood the day after I was discharge, with the tube and bag apparatus covered by a big raincoat.  The tube was in for about 10 days--longer than usual because I was still leaking air.. I had some pain, mostly from the tube, I  think. I took oxycodone for a few days and then gradually transitioned to alternating ibuprofen and tylenol. I also learned how NOT to move to avoid pain. After the tube was taken out, I had very little pain. Altogether, the pain was less than I had anticated and I recovered fast.
Has your surgeon recommended that you sleep with your head elevated? If not, ask about it. It areally helps with breathing after surgery. I got a 12 inch high foam wedge, which gave me about 45 degrees elevation. It was way more comfortable than trying to prop myself on pillows. I recommend it. I slept propped for over 2 months. Also, if you come out of the hospital with a tube in, I suggest you get some chux or similar disposable bed pads, since the tube can leak where it comes out of your side/back, and the bag can leak wherever you hang it. As I  said, the tube is a nuisance. But I was able to manage it at home and was glad I got home from the hospital so quickly.
I hope you can have VATS and that your surgery is as uneventful as mine was.
Hang in there and best wishes/

Thank you Sue, same place as me! I so appreciate you taking the time to share your story. It is such a comfort to be able to talk with caring people who have been there and come out on the other side. Bless you!!