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Newly diagnosed, questions about surgery


Janis

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Hello everyone. I am a 46 yr old mom who was diagnosed with a 1cm tumor in the center of my right lung. Actually am very lucky, I fell in February in the mud while working with a horse and thought I cracked a rib. I went to the doctor in March for the pain and asked for a chest xray because I thought the rib was broken. Chest Xray showed a nodule, CT scan confirmed it and Pet Scan "lit up"....so here I am. The Pulmonologist and Surgeon really don't say much, except that the tumor appears smooth, was on a chest xray from January 2003 (no one ever told me!!) and hasn't grown. They have scheduled surgery for June 15th. I belong to a big HMO and getting answers is hard. Surgeon did say it is T1, and they will cut me from under my right breast to my back and spread the ribs to remove about 1/2 of my lung. Any words of encouragement about how to cope after surgery would be greatly appreciated, I understand it is very painful. I have had 5 children, 4 other surgeries and doc says there is NO comparison so am a bit scared. Am I being too optomistic to want to take a quiet vacation a few weeks after surgery? What about resuming normal activities? Docs said I won't be riding my horses for many many months. Any feedback would be greatly appreciated. Thank you :)

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Janis,

My husband had the surgery about 18 months ago. Just a couple of ideas about it.

1. Take all the pain meds they offer you. There is no need to suffer.

2. Get a small pillow. Hold this against your incision anytime you have to cough or sneeze. Also good for riding in the car to help with bumps and potholes.

Welcome to the board no one wants to join. I wish you great success with your surgery.

Ginny

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I had many surgeries prior to the lung surgery and while it was rough, it was doable. I just kept up with the morphine in the hospital, and routinely took the pain pills at home. I didn't stay on the pain pills long---even the surgeon was surprised.

My surgery was April 24 and I was at the beach the first week in July. In mid July I flew to Texas. The only bother I had from the surgery was the heat.

You didn't say how old your kids are, but I know for 2 weeks after surgery I did very little at home besides heal. If you push yourself too early you do yourself no good.

Let us know

gail

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Good advice from everybody already--

I had surgery on June 20, and on July 8 I was traveling by car 6 hours for a conference for my work. It was entirely doable for me by then. After I got back from the conference, it was back to work full time for me and I haven't missed much since, even though I had chemo.

I remember setting some goals for myself in terms of activity immediately after my surgery. I had surgery on Friday, came home on Monday. I wanted to strive for going out to lunch on Friday after I came home, but I think we ended up going to lunch a couple of days ahead of that.

It's amazed me that, after surgery I could feel so bad, but you are young too and, it seemed for me, once those chest tubes came out, I was feeling better by the minute.....

I think a quiet vacation sounds perfectly reasonable for you a few weeks after surgery.

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Janis-

Yes, believe it or not, you ARE lucky---to have discovered it at such an early stage.

You've received good advice from others. A vacation is definitely a wonderful idea in my opinion. Consider some of the other suggestions below:

Here are some ideas gleaned from my own experiences and those of others on the Board who have shared. Use all, some, or none.

• Don't be bashful about the pain medication. Pain interferes with the healing process. The trick is to take them before the pain starts, and then you are able to function.

• Get an epidural in your spine to help with immediate pain in the hospital, plus morphine, Demerol, or similar. I came home with Percocet. Take the pain medications regularly at first, and then wean yourself off as able. I kept a log so as not to “play games” with myself. (I was off all pain medications 3 weeks after surgery, but many people need MUCH longer. You and the doc will know.)

• When you first come out of surgery, it might be a little disconcerting because of all the things you will be hooked up to: an epidural catheter, a bladder catheter, an IV, chest tubes, EKG-wires, oxygen, perhaps a respirator, etc. It’s normal, and will be gone soon.

• The narcotics have a tendency to be constipating, so be aware and eat your fruits, veggies, and drink, drink, drink lots of water. Sometimes stool softeners or fiber/bulk laxatives such as Citrucel may be helpful. Someone else said that a home health-care nurse had an idea that really helped her. The nurse recommended drinking a small glass of prune juice each day and advised warming it in the microwave oven first.

• A heating pad helps afterwards with the pain when you are home; just use it judiciously.

• Lots of naps are permitted and encouraged during the day …healing occurs faster when you are truly resting.

• Get a pillow, or soft Teddy Bear, or something to hold against your incision when you cough or are riding in a car and you hit a pothole.

• Someone recommend anything by Bernie Siegel. All of his books are on tape, and he has several meditation tapes.

• Take a cheap calling card to the hospital.

• Someone’s cool suggestion (I didn’t have this procedure myself, but it sounds GOOD): Ask if this surgeon is trained to remove the lobe by VAT (video-assisted thorocotomy) If the tumor is surrounded by good tissue , you have never had radiation to the chest or chemo , you may qualify for this instead of the old way of making a big smiley incision over your back, and breaking a couple of ribs, etc. ( that is why a numbing epidural is so wonderful). The VAT procedure only involves making a couple of small incisions, and using a scope to remove the lobe of lung; there is much less scar, much less post pain, and quicker recovery. More and more doctors are being trained to do this newer procedure.

• Use the Spirometer religiously every hour that you are awake!!! I totally loathed the thing—I only had to LOOK at it and I would start coughing, but I persevered. I also charted the times I used it and what my progress was, and feel it played an important part in my relatively quick recovery.

• Exercise and walk, walk, walk, as soon as you are able. Right from the beginning, Fay A. recommends moving your feet and lower legs as if peddling an imaginary bicycle while in bed or seated for extended periods of time. This will help with circulation. Take those mini-walks several times a day. When you are stronger and steadier, begin taking longer walks. I charted my times and distances (i.e. like a whole block instead of 1/2 block J) and set goals for improvement. Someone else found an exercise program on the net for lung cancer patients that you might like to check out www.cancernetwork.com. They said the exercises helped a lot. I had my own routine of light stretches and light toning that I did.

• Soft, loose clothing will be the ticket. I wore NO underwear of any kind for a couple of weeks. Soft shirts such as fleece that open down the front are nice. My pants were knit shorts or flannel pajama bottoms with elastic waists.

• It seemed surprisingly chilly without a bra. When I finally decided I would try one again, I found I could not tolerate underwire bras of any kind. I found some Sports bras at Target that zip up the front, which makes them easy to get into.

• Someone gave me a long-handled loofa, which turned out to be a prized gift, because it allowed me to be much more independent in the shower. I could do my back and legs and feet by myself using the loofa. Fay A. says to buy an extra one and reserve the dry scrubber to scratch the incision when the site starts to heal and itch. At first, you may need some assistance in shampooing your hair--I did, or getting in or out of the shower or bathtub.

• As per Fay A. again: Many of us who have had surgery end up with Gastric Reflux problems, even if those problems did not exist prior to the thoracotomy. It can be pretty painful, and if the acid splashes high enough can actually reach the area where the trachea meets the esophagus, causing cough and other respiratory problems. Have the problems treated if it occurs.

• Fay A. again: Try to have the place where you will be resting the most set up so that the lamp, table, etc, are opposite the surgery side. You will be limited in how high you can lift the arm on that side for a while.

• Fay A.: You man need smaller, more frequent meals.

www.cancerlineuk.net. Click Lung Cancer...Click Patient Support. There's an article on going home after surgery. It is quite informative.

• Someone else suggested getting a set of good walkie talkies. That way the patient never felt like he was left "alone". He could always reach the other person in just a click of the button and saved them a lot of unneeded stress.

• When you get home from the hospital after surgery, it might be helpful if someone can help you get up and down. Those muscles that get cut are the ones you use to lift yourself, and they are really sore for a while. I found it worked best for me to sit in a firm chair, such as a dining room chair, rather than the soft, enveloping daveno.

• Some people sleep on the couch or in the recliner for the first week after returning home. It can be easier to breathe if your head is slightly elevated. Myself, I had a hospital bed right in the middle of the living room for a couple of weeks.

• Also after Early Stage surgery, it has been recommended that you do get adjuvant chemotherapy because of the significant number of people with micro metastases that the pathologist is unable to identify this early. There is still some controversy regarding this recommendation. Do your research; talk to your follow-up lung-cancer provider; get a second or even third opinion.

Hope some of these ideas are helpful.

Best of luck to you and keep us posted.

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My mom had an epidural and she recovered fast. I think she was working a bout three weeks after surgery.

I would talk to their pain managment people about what they do about pain and the anesthesiologist.

Also I would found out how they screwed up the previous X-RAY and raise some H***. It is not acceptable that there was not any follow up. Someone should be help accountable for this kind of mistake

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Janis,

Tiny gave you some good advice.

You will have some problems with the strength and full mobility of the arm on the side of the surgery for a while. I doubt you'll be doing any serious or extensive riding for a couple of months (just think what's involved in tightening a girth, or throwing a saddle on...)... two armed operations, and lifting is going to be a bit of a problem for a while.

But, you have every incentive to get well fast. The nerves grow at about 1 mm/day, the therapist told me, so a month is more than 3.0 cm, a bit more than an inch.

I am very glad you got an early diagnosis.

Hang in there!

XOXOX

Prayers, always

MaryAnn

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Janis,

Remember that everyone reacts to pain differently - tolerance levels are different. People also heal at different speeds.

I was told time in hospital after surgery was 4-10 days. I was in for nine days because the pain could not be managed (I had an epidural that I didn't think was working - until they removed it...and had allergies to the pain meds they started me on).

Listen to your body. If your body says it's not up to "normal", realize there is a NEW normal... Graphic images of the surgical procedure burned into your mind do not help, try to NOT think about that until afterward (I had no idea the procedure until afterward, thank goodness!). Keep up on the pain meds, follow Tiny's advice (and check the A-B-C's at the beginning of this forum) with the small pillow, spirometer... Follow the doctor/nurse advice on exercising and "stretch goals" to keep your remaining lung tissue clear of fluid and infection...

Take care, and good luck!

Becky

PS I had a teddy bear and not a pillow - was more comforting to cuddle with, too...

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Janis,

Yes, the surgery is tough. I won't minimize the pain. I had a small 1cm nodule located in my r. mid lobe. My surgeon took my r. mid lobe and part of a section of my upper lobe as a pre-cautionary measure. My surgeon did not have to sprad my ribs much for such a small nodule. I doubt you will have any trouble getting it out either. In my case, all margins looked clear, but cancer was found in my mediastinal area and treated prior to surgery. I had a mediastinoscopy when first diagnosed which found swollen lymph glands there. Your doctor will take numerous lymph gands to test for cancer during the surgery. Most start out doing a mediastinoscopy, and if clear, proceed with a lobectomy.

It is hard to lie flat after surgery. I found the chest tubes the most painful for me personally, but those were removed after 4 days. I was back at work in 3 1/2 weeks, and rode my horse at about 8 weeks. She is fast- a Tennessee Walker, but a smooth ride. Her cantor still hurt tough. Any jarring caused pain. I slept upright for quite a while. Best of luck on your surgery. P.M. me if you need any advice.

Cheryl

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