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Getting very apprehensive about all the waiting...

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

A quick recap of what's been happening. On June 20th I received the results of my PET scan. A 2" tumor in right lung and a spot in the left lung and lymph nodes in center of lungs lit up as well.

Sent to a thoracic surgeon who was going to do a VATS wedge resection and bronchoscopy but wanted a lung function test done first. Call from surgeon after PFT telling me I needed to see a Pulmonologist first because surgery was risky.

Saw Pulmonologist and he went over the PET scan results with me again and explained, in detail, everything that was happening in my lungs and that they were only functioning at 25%. He spoke with the surgeon and they both agreed that even removing a small piece of my lung could cause permanent shortness of breath. Now they want me to go for pulmonary physical therapy twice a week for 6 to 10 weeks. Still waiting to hear from the physical therapist.

I'm starting to get concerned about what's happening in my lungs during this time that I've been waiting for tests and appointments. It's been 5 weeks since I got the results from the PET scan and now it could be another 2 or 3 months before they can do the biopsy.

I have to laugh at myself, I'm the first one to tell others to relax and not worry while they are waiting for appointments and tests. Now that the shoe is on the other foot I'm not very good at taking my own advice :) I'm trying to keep myself busy doing breathing exercises and going for short walks once or twice a day. The most I can walk is about a mile and even then I get short of breath, trying to slowly build up the distance I can walk.

Thanks for letting me vent!!

Glenna

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

(Tom Petty reference)

My sweet friend, I was diagnosed in June of 2007 and did not have the biopsy and subsequent lobectomy until the end of January of 2008.

Of course, my node was not 2" in size!

If you have a tumor of that size in the right lung and a shadow or some such in the left, and they are still willing to do surgery if you get your breathing going, Glenna, you need to get after it!

Ask them for all of the tools they have available. I had the spirometer, the little porcupine thing (looks like a grenade too, depending on your point of view), and probably some things I have forgotten. Get them and use them ... religiously ... and continue to do your walking. If heat is a problem (as it is here), then walk around your own place, set up a 'course' and do it as often as you think you need to and do it daily or every other day. Think about sit-ups (groan); think about going from standing to squatting and then standing again (groan), things like that, as long as they are not unhealthy for you. Maybe a physical therapist?

Get your breathing as good as it can get, and then go back and let them know that there are worse things than the 'risk' of a breathing problem, one of them being dying of cancer.

As you know, I wish you the best, my friend, and know that you will do what is best for yourself (although those who give great advice are sometimes the worst at taking it from themselves :)).

Take care, Glenna,

Joe

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

I'm guilty as charged!!! I am so good at giving advice but am the worst at following it myself :)

I have a spirometer that I use several times a day and I have been walking each day, sometimes twice a day depending on the weather and how I am feeling. We had a week that the weather was so hot and humid that it made walking impossible but we are finally back to our normal summer weather. I have also been doing some exercises that were posted on YouTube for people with COPD and lung cancer. I'm doing everything I can think of to improve my lung function...haven't tried the sit ups, it's been so long that I doubt I could do even one - lol.

The pulmonologist has referred me to a physical therapist, he wants me to have PT twice a week for 6 to 10 weeks. As usual I'm just waiting to hear from them with my schedule, I can not believe how long it takes to get any of the doctors to call with your appointment. I have waited 4 days and then had to call them each time I see a new doctor, today is the day I call the PT and find out what the hold up is with scheduling my therapy.

I'm really curious about the 2" "tumor" in my right lung. Two years ago when I was first diagnosed with lung cancer the oncologist told me there was a spot in my right lung also but he wasn't concerned because he didn't think it was cancer. They watched it closely and nothing happened until my February scan when they said there were sublte changes, my May scan showed it was "more distinguishable". When I saw the pulmonologist he was looking at the PET scan, and it was almost like he was thinking out loud and not really talking to me...he said he was curious to find out if the right lung was an "exotic infection". I had been wondering the same thing myself because I had been remembering PBJ Austin's story. There's still that chance and I'm hoping that's what it is, I'll still have the left lung and lymph nodes to deal with but it would be nice if the largest "tumor" were an infection.

Thanks for the advice, Joe, and letting me rant :)

Take care,
Glenna

lekkerone
Posts: 199
Joined: Jan 2011

I can understand where you are coming from for sure. The waiting plays with our minds and it really doesn't matter what anyone says. I absolutely agree with soccer freak. You must work as hard as you can in strengtening yours lungs. Nothing should get in the way of that as right now it is the most important thing you can do for yourself. And, You are important. Have you used the exercise videos recommended on here before? The ones put together by the respiratory therapist? I think they are an excellent resource.
Have they suggested a two week course of prednisone to help you.

I have to leave now so this is written in haste. There is no point in my saying don't worry because you will. Just give that exercise your best shot Glenna.

PBJ Austin
Posts: 347
Joined: Mar 2009

I like the way soccer freak has a song for every situation. :-) When I was awaiting my test results that Tom Petty song played in my head 100 times a day.

There's only so much we can say dear Glenna, waiting for results is beyond stressful. Aside from lung exercises my best suggestion is try to keep busy. Find projects that need doing or ones you've put off a long time. It will keep you from dwelling on the situation and it will give you a sense of satisfaction when the project is done. Spend time with loved ones who are supportive of you. And if all else fails you can pop in here and vent with us anytime.

Huge Hugs,

Pam

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Thanks for the update Glenna. Have you been doing those nifty breathing exercises that are on YouTube?? I think those might be really beneficial. I think you are going to "BLOW" them away when you get tested again because of all the hard work you are putting in to be in shape for surgery.

I am experiencing a sort of set-back too. I have been experiencing dizziness and headaches for about 2 weeks now. I will be having a brain scan next Wednesday to see if anything is going on in my brain. My body is just not feeling quite right, and I am extremely fatigued each day after work. Vicious cycle of worry and waiting. :( My onco did tell me my CEA
tumor marker is normal. He was also pleased I was not losing any weight.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Sorry to hear that you are experiencing a set-back, I know how scary and frustrating that can be. Yes, the waiting is pure torture and I wish the doctors would place themselves in our shoes for one day, then maybe they would not keep us waiting as long as we do for appointments and test results.

Yes, I have been doing the YouTube exercises each day and I enjoy them. They are not too strenuous but I feel better after completing them. Each day I try to push myself a little further on my walks and I use the spirometer every couple of hours. Between all of this and the PT I am hoping they will be able to reschedule the surgery.

Will be keeping you in my thoughts and prayers that the brain scan comes back clean. Or as my oncologist told me...you've got nothing up there!!! I've known that all my life :)

Take care and stay strong,
Glenna

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

I've been thinking about you quite a bit lately. The pulmonologist said something, more to himself than to me, about waiting to see if the "tumor" in the right lung was an "exotic infection". I would still have the left lung and lymph nodes to be concerned with but it would be nice if one out of 3 were actually an infection.

Thank you for the encouraging advice. I will be fine, I'm calling the doctor's office this morning to see why it takes a week to get a call back regarding an appointment. I hate waiting on other people to call me!!

{{{BIG HUGS}}}

Glenna

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Yes, I am walking and faithfully exercising :) I'm doing the YouTube exercises daily and enjoy them, they are quite easy and I feel better after doing them. I'm also using my spirometer several times a day and anything else I can do to build up my lung strength. I think I can already feel a slight improvement in my breathing and I've only been doing this for a week and a half.

No, he hasn't prescribed any type of medication, he told me before that they may prescribe something shortly before the surgery but that was before he told me the surgery was cancelled.

Thank you for the note, you always lift my spirits.

Don't worry, I'm a fighter and won't give up.

Stay well,
Glenna

Hope4Marge's picture
Hope4Marge
Posts: 74
Joined: Jul 2011

I hate the waiting game. I have had to learn not to google anything during that time, as there is so much misinformation. I am so happy to hear you are keeping busy with excercise and breathing excercises rather than google or feeling sorry for yourself. Positivity is key!! So glad to have meet you. Keep us posted.

grannylove
Posts: 183
Joined: Apr 2011

will help you as well as all the breathing exercises you are doing for yourself. Glad to hear you are keeping that phone to your ear and prodding those who are making appts for you! Sometimes these Drs. office gets busy and need a gentle reminder:) Rest assured that you are in my prayers Glenna. Stay strong my friend and vent anytime you need to.
Cheryl

sleepless in jersey
Posts: 185
Joined: Feb 2011

Yes the waiting game is awful!! The Doctors should experience what it feels like to wait, just like my husband who is a officer who has to experience what mace feels like to the eyes!
I think its called normal to give great advice and not being able to practice what you preach.
I myself have been waiting for Dad to call me as we speak, Mom was having her lung drained at 8:00 this morning, the waiting is awful and than the wait for the fluid results. Hurry up and wait...
Continue with your positive attitude and you will be fine.
God Bless, your friend in Jersey

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

After bugging my Pulmonologist I finally got a call from the Physical Therapist and my first appointment is next Tuesday. It's only for an hour this time but I'm sure there will be more questions and discussions then actual therapy. She did say they would be showing me the machines I will be using, from what I saw on there website it will include the treadmill and a rowing machine. I am continuing with my twice daily walks, lung exercises and using my spirometer. Most of my waking day is spent exercising - lol - but I am determined to get this done and my lungs stronger so I can have the surgery and biopsy!!

Thank you all for the encouragement, it helps me through the rough times.

Stay strong,
Glenna

Hope4Marge's picture
Hope4Marge
Posts: 74
Joined: Jul 2011

Getting appointments are half the battle. We are all hoping for a productive appointment for you next week!!

grannylove
Posts: 183
Joined: Apr 2011

Good for you Glenna! Love your determination and positive attitude! I pray that your goals will be within reach sooner than anticipated. Prayers! Cheryl

lekkerone
Posts: 199
Joined: Jan 2011

I am so glad you got the appointment. If you have a gym nearby or have a friend who owns one, you can get in some extra practice. That is what I did and it really helped.
You can do it; I know you can. Diane

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Thank you all for your encouraging responses!!

Diane - I live in the "sticks" but I have a beautiful and natural gym :) I live at the base of a mountain, actually, several mountains. No matter which direction I go for my walk it is all straight uphill, some very steep hills. It's a 45 minute drive to the closest gym so I am getting resourceful and finding several things I can do at home so I can get a better workout.

Yes, I CAN do it and I WILL do it!!!

Stay well,
Glenna

lekkerone
Posts: 199
Joined: Jan 2011

Hills trump a gym every time. They are a real challenge (at least for me) but a great way to build strength plus you get the benefit of fresh air. Yes, You will do it!!

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