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A new member and confused.

cerobby
Posts: 8
Joined: Jun 2008

Hello everyone.
I was diagnosed two weeks ago with non-small cell cancer of the upper left lobe. Surgery was last week, they removed 3/4'ths of the upper lobe. The path report came back clear (thank God) but I am totally overwhelmed, tired and confused. I am a 58 year old female in VERY good health, I stopped smoking over 30 years ago and exercise regularly. I see the surgeon next week for post-op and I don't know what to ask. I really would just like to pretend this never has happened (denial I guess) any help would be much appreciated. Thanks

sisterME
Posts: 5
Joined: Jun 2008

Hi, I am new to this site as well. I have a 58 year old sister who was diagnosed with stage IV NSCLC in November, 2007. It is good to hear that surgery was available to you as it is my understanding that surgery is not available to those who's cancer is to far advanced, as was my sisters case. My best thoughts after reading everything I can get my hands on regarding NSCLC is to be very proactive and the captain of your own ship when it comes to your treatment. Find out everything you can about whats available, call or visit your local American Cancer Society as they are a wealth of information and support. Also the Internet is full of great facts about treatments. Armed with all of the info you can find ,discuss your options with your team of doctors and get a second opinion if you feel it is necessary. I wish my sister would have done all of this but unfortunately she has not. She has completed 12 rounds of chemo and is now on Avastin, which is a very promising drug.

I think that a positive attitude, filled with lots of hope is a real key to getting through. Surround yourself with lots of folks who are there for you and know that there are those of us out here who are rooting for you. I have read numerous stories of folks who have gone through their treatment and tumors have shrunk and they are still around to tell their stories and give hope to others.

There is hope so hang in there and God Bless.

cerobby
Posts: 8
Joined: Jun 2008

Dear sisterME,
I also have a wonderful sister like you who was here for the surgery and has been very pro active in my welfare. My husband has been great too but is overwhelmed with worry. I am also very fortunate to have great friends who will do anything they can for me. I have always been a rock and the most positive person and I know I will get that back. Thank you for making me realize that I have to take control back. I will go into that Doctors office filled with questions about my care.
There still is one thing that bothers me now, I am worried stiff that my husband, and or sister will get ill, if anything happened to them I don't know how I would handle it. Does your sister have similar thoughts?

Stardust1
Posts: 44
Joined: Jun 2008

I have a 64 year old sister, who has lung cancer,and minute cells has spread to the brain and bones. She is scared and doesn't want any information right now. I'm guessing she is in stage IV,I'm also guessing NSCLC. I'm lost and she is in the doctor's hands and God. I live far away. She got her first chemo,a week ago Tuesday. And the doctor said, she shouldn't be nausau and vomiting as the chemo she's getting doesn't have those side effects,but I guess everyone is different. Is there survivors in lung cancer IV, I get negative infor on the internet and positive. Please help me. Also confused on how to post a new message to the message board,Please help me. Love and Prayers.

sisterME
Posts: 5
Joined: Jun 2008

P.S. When you see your doctor again ask about all of the treatments available. And I mean ALL. Also ask about the side affects. Take a pencil and paper with you or a tape recorder so that you can record the conversation and remember what was said later. One of the problems my sister and brother in law have had is that they don't remember everything the doctor said once they leave his office. If you can, take someone with you for support. If you think you need a second opinion ask for the name of a physician who gives second opinions. Ask about taking vitamins for your immune system. Ask how often you will be seeing your doctor and decide how much you really want to know about your progress. In my sisters case, she asks very few questions as she has been to scared to know the answers. You might also ask if there are any cancer support groups to attend, as these groups of people are sometimes a wealth of info that we don't think of on our own.

It has also helped me to keep a journal of my feelings and thoughts during my sisters illness.

cabbott
Posts: 1046
Joined: Aug 2006

A cancer diagnosis is overwhelming for anyone. Reward yourself for quitting smoking years ago and exercising regularly. That meant that your lungs were in as good of shape as possible before you were diagnosed. They might not have been able to do surgery at all if you were not in great shape, even if the cancer was not advanced. Exercise and a good diet, not to mention no smoking, are some of the best things you can do to delay or prevent reoccurances too. And if they happen, surgery may still be an option if you are in great shape and the cancer is caught early. In my case, I have lost my middle lobe of the right lung. At surgery time they said they could remove up to one lung without handicapping me. I have a non-small cell cancer type that tends to be slow growing but often reoccurs on either side. Oh, and I never smoked, wasn't around smokers, and the house tested negative for radon. No one can explain why I have cancer. I just do. It seems that women are getting more lung cancer these days and no one quite knows why. The non-smokers tend to weather it better, so I've heard, but the research is still lacking on exactly how to prevent and adequately treat this stuff.

In terms of questions, you want to ask for the path report and perhaps a summary of the surgery report. That way you can share them with all your other doctors (and even your dentist) when you have other appointments. Path reports can be full of medical jargon, but the internet is a great place to look up every word you don't know. You can also ask what something means here. It is your cancer and the more you understand about those messed up cells, the more power you have over them. You want to know what stage you are in. Stage 0 and stage 1 often need only surgery and watchful waiting, though some cancers need chemo from the get go. A second opinion from a teaching hospital that specializes in lung cancer can provide you peace of mind that you are doing all you can. Once you have a plan to attack this disease with everything out there, put your plan into action. Put the appointments on the calendar and go back to your life as normally as you can without missing your appointments. Denial can help us get through the worse situations without losing a lot of sleep and won't hurt at all, as long as someone else is worrying about the right treatment options and you don't miss your appointments.

By the way, getting back on my feet after surgery was not particularly easy for me even though I was in good shape before surgery. My mom was a godsend. She not only babied me at her house the first few days, she also took me to the mall to walk in air-conditioned comfort every day the first month or so. I couldn't drive and it was way too hot outside for a walk in the woods. But the mall with company was perfect. I only mention this because it is 95 in the shade today and you will have to baby yourself for the next month or so. When they say that folks with comprised lungs should stay indoors, that's us now that they are talking about, even though I rarely see myself that way. Good luck!

cerobby
Posts: 8
Joined: Jun 2008

My Doctor did tell me how fortunate I was that I did not smoke and that I did exercise regularly and how that would make recovery easier. I'm glad you mentioned the hot weather, because yesterday my husband took me for a short walk and I was so winded. It was 92 degree's and 100% humidity. Pre surgery it never would have bothered me, is this something I will have to take into consideration in the future. By the way I also have asthma which is in my good lung.

So your saying ask for a copy of the path report and surgery summary ??? Should I insist on an oncologist as part of the team? I see the surgeon for post op this week..

Greggriggs's picture
Greggriggs
Posts: 132
Joined: Dec 2006

Hi I had Nsclc in my left lung also they did a bunch of tests befor surgery I passed them I guess because they gave me the surgery. They Remove my left lung complete in 2006.
My surgen did not like Chemo or Rads. But he did send me to an oncolgist . I was 64 then an smoked two packs a day. I also painted cars for forty years . So who knows why? My Dad is ninety years old he has a couple of Drinks a day an smokes . God desides when an where an who..
Keep up the walkin I try to go a mile an a half a day. I remember after the 3rd day of surgery they walked me down the hall an I thought I don't want to live like this.But in 8 weeks I was walking a mile a day.
They sugested I have previntive Chemo Taxol an Carboplatin. I ask them if I could wait ten weeks to heal a little and he said it would be ok.
Any way if they sugest the chemo ask him about the side affects.Some of them do not show up for a year after. I guess it depends on what kind of Chemo an The differant way it affects indavidules

cerobby
Posts: 8
Joined: Jun 2008

How long did you have chemo? And what kind of side effects did you have? I see the surgeon this week and hopefully no more treatment is necessary.
My dad lived to 97 smoked 6 cigars a day and drank 2 scotch's daily he died 2 months ago of old age...go figure

cabbott
Posts: 1046
Joined: Aug 2006

I would get a three ring binder and put a copy of your reports in them as you get them. Path reports, CAT scans, PET scans, Xray reports, blood tests, EKG's, pulmonary tests, whatever. I put my reports in by date along with a page listing all surgeries in order (including those not having to do with cancer) and another page with all doctors including their address, phone and fax. I keep the notebook at home till I have an appointment. If I'm pretty sure the doctor doesn't need anything in it, I leave it in the car and just bring in a paper pocket folder for the next report (usually a CAT scan).Of course, that goes in the binder when I get home. You would be surprised how often these reports save time. The surgery summary was useful only in explaining to my GP what surgery was done. After a year or so, it was a good reminder to me. My memory is not perfect, never has been, but my notebook is a great substitute for the missing brain power.

Your surgeon has to check you to make sure you are healing properly and may see you regularly (like every 3 to 6 months for two to five years) depending on what he thinks is needed. He may also send you to either a pulmonary specialist, an general oncologist, or a pulmonary oncologist specialist. It depends on what is available in your community or within your acceptable driving distance. Most communities have a general oncologist that handles every kind of cancer. Some oncologists specialize in particular cancer types. They usually work out of teaching hospitals. Pulmonary specialists handle asthma and lots of other lung conditions. My breast cancer oncologist (I have both!) wants me to see the pulmonary oncologist specialist at the place I go, but the pulmonary oncologist specialist told me I'm too healthy at the moment to be seen. We had one visit. So right now I'm being seen by my breast cancer oncologist once a year to handle the breast cancer meds (I'm at 5 1/2 years !!!) and lung surgeon every 6 months(anniversary coming up on 2 years this August).

Surgeons love to be asked their opinion, so you might ask who they think you should see and when. If they don't think you need an oncologist because your cancer was caught early, you can ask about seeing a pulmonary specialist, especially since you have asthma. Keeping your asthma under control will keep you from straining your lungs as they heal. The meds also reduce lung inflamation which may also help.

My wind power is almost back to normal now at two years. The doctor urged me to do daily walking and to use that corny little breathing machine they gave me in the hospital. It exercises the lung muscles apparently. I prefer cardiovascular workouts like step and cycling, but they were out for a few months after surgery. Even now, there are some muscles in my abdomin that just don't work. Apparently a nerve got cut during the last surgery. It made getting the chest tube out painfree, but it also paralized the abdominal rectus muscle you use for situps. I manage a decent crunch, but my situps are still pretty pathetic! I was thrilled the day I did two in a row last year and this year I haven't even tried. I still go to the gym Monday through Friday. This morning was cycling and a 300 workout. I could only use a step without risers for the jumping section and my floor wipes were less than graceful, but I did the whole workout anyhow and all the cycling afterward. So do what you can within reason. Stay in when the weatherman warns of excess humidity and heat. When a walk is doable and the doctor says you can do more, add a little strength training. When your stitches heal, swim, ski, kayak, or whatever you think is fun. I take my limits into consideration, but I work to expand those limits as much as I can. If something is limiting you (like lack of breath) after you think you should be able to do it, ask your specialist for ideas. Rehab, including pulmonary rehabitation exercises, is available for those who need it. So soon after surgery though, you should expect to be winded by a walk outside. Even in air conditioning you will walk much slower and for shorter distances. I used to race walk three point one miles in 43 minutes (this is not really fast, but I usually came in fourth if there were only four entries!). Now I'm happy if I can walk that far in an hour. That in spite of daily exercise and two years since surgery. Oh well, I'm still having fun and I hope you will be able to have fun too.

cerobby
Posts: 8
Joined: Jun 2008

I can't thank you enough for all the information. I am so excited that I will be able to pretty much get back to normal. I too love to exercise. Golf is my passion (though you would never know it by my score) but I loved walking the 18 holes followed by working out (weight training, crunches sit-ups the works!) I realize that I might not be able to walk the 18 holes this year especially in the heat so I might have to use a cart but who cares as long as I can get control of my life back. I also loved to hike in some hilly areas that really got my heart rate up so I guess I will make some minor adjustments in my workouts.

I am very lucky to live near a large city, and my internist is an excellent pulmonary specialist who happens to be a very close friend of my husbands. He got me to the top thoracic surgeon in the city and my care has been unbelievable. The surgeon had already mentioned my being under his watch for the next few years and when I see him Wednesday I will definitly ask him for his opinion. Because of the asthma I know my good lung is already working harder, I don't want to do anything stupid but I really want my life back. I can't ignore what has happened, so I will get that 3 ring binder and take control back. Cancer entered the wrong body and I'm throwing it out!

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