shari Posted December 4, 2016 Share Posted December 4, 2016 My name is Shari and I am a 52 yr old open heart nurse. I am a soon to be 13 year breast cancer survivor. On Labor day I was admitted to the hospital for what we thought was chest pain. Of course being the ICU nurse that I am, I insisted that everything was normal. As I said, everything was normal with my heart. It was a strange meant to be situation I guess. All of my heart tests were normal. My CT scan of my chest showed a small nodule in the right lower lobe of my lung. I am a non-smoker and non-drinker. I have not been around second hand smoke. Long story short, I had a open thoracotomy and a right lower lobectomy for adenocarcinoma. I guess it was a good thing it wasn't mets from the breast. Primary lung cancer though how could that be? One would expect that since I have already gone through all the grieving and fears from the breast cancer that this would be a breeze to get through. I am struggling so hard with this diagnosis. My lymph nodes were all negative thank God. There is no treatment for me now, they took the entire lobe. My oncologist says we will just have to be very aggressive with follow up scans since my body "likes to make cancer" That's really scarey. No chemo, no radiation, nothing??? I had surgery on Oct.19th, I am still not back to work yet. I continue with pain in the right upper chest with deep inspiration. I still get short of breath very easily. I am not taking narcotics anymore but I do take tramadol daily to just not feel like I am 90 years old. Everyone is telling me to stop being so hard on myself, but I feel like I should be much better by now. I know though that there is no way I could run up and down the halls of my ICU to care for others right now. I have not seen a pulmonologist yet, my surgeon didn't think it was necessary since I was so young and healthy. I have an appointment Monday with the pulmonologist because my primary highly suggested it. Maybe I can get some guidance here and from him too. Thanks for just listening and understanding where I am. Mally 1 Quote Link to comment Share on other sites More sharing options...
Donna G Posted December 4, 2016 Share Posted December 4, 2016 Hello Shari. Glad you found us. When I was diagnosed with lung cancer I was a 50 year old RN. I am really glad that they did all those tests on you and did surgery before the cancer spread! An open thoracotomy takes time to heal from. You should know as you have been caring for people in ICU that have had their chests cracked open. When I went to the doctor with chest pain I thought it was a pinched nerve causing it ( an orthopedic problem). They told me " you are 50 we will have to check your heart !" It turned out the chest x ray showed a tumor pressing on my chest wall and nerves going down my arm. One thing I know you are really aware of now is you don't have to smoke to get lung cancer. Did you have genetic testing done on the tumor ? Many of young lung cancer victims are positive. Please keep us posted on how you are doing. Donna G Mally 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted December 4, 2016 Share Posted December 4, 2016 Welcome Shari, I experienced many of the symptoms you've expressed after my pneumonectomy. I also had many surgical complications that took a year to resolve. Despite 3 reoccurrence events after surgery, my life is now near normal. I am mobile and can't run or climb many flights of stairs but I am able to walk around on level ground without much difficulty. I have about 38% lung capacity and that will be one of the things your pulmonologist will determine. I've stayed off O2 and my O2 SAT rate is about 97% on a good day. Chest colds are a problem so I avoid children. Flying in a commercial aircraft is a painful event because the cabin is pressurized at about 6 to 8,000 feet and my chest volume expands causing high incision pain. But we still fly and I take tramadol before and during long flights. Sleeping is difficult because of chronic pain from chemo-induced neuropathy. But, otherwise I lead a particularly normal life. I had my first surgery at 53 and 2 more to repair a pluralbronchial fistula. It took me a year to recover so don't push yourself. Stay the course. Tom Michele and Mally 2 Quote Link to comment Share on other sites More sharing options...
Michele Posted December 5, 2016 Share Posted December 5, 2016 Shari my small nodule is on right lower lobe also ; just wondering why u couldn't have vats surgery ? Quote Link to comment Share on other sites More sharing options...
shari Posted December 5, 2016 Author Share Posted December 5, 2016 Good evening Michelle, When planning my surgery the surgeon was not sure if the Vats procedure would work for me because I had the implants from a bilateral mastectomy, radiation to the right side of my chest from the breast cancer and possible scar tissue in the chest area. So I went in to surgery not knowing if I would have a VATS with a simple wedge resection for a noncancerous nodule or an open thoracotomy with a right lower lobe resection due to a cancerous lesion. I ended up with the second and open thoracotomy that was small cell adenocarcinoma with negative nodes. Hope this helps. Keep me posted. Michele and Mally 2 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted December 5, 2016 Share Posted December 5, 2016 Shari, I had a lobectomy of my upper left lung in February of this year. My surgeon, oncologist, pulmonologist and primary care physician (whew - quite the team) all told me that it would take a year to recover from this surgery. Not only are you dealing with diminished breathing capacity, but you're also dealing with cuts through muscles and nerves. I had a small panic moment last month because my chest started hurting in my sternum - turns out the pain had been there since surgery, but I was just beginning to feel it because the nerves were healing. The breathing will get better each day. We're here for you. Mally, Tom Galli and shari 3 Quote Link to comment Share on other sites More sharing options...
shari Posted December 6, 2016 Author Share Posted December 6, 2016 Thank you so much for the encouragement. I saw the pulmonologist today and he basically said the same thing and actually congratulated me for doing so well post of and not requiring any additional therapy. He is referring me to MD Anderson to see if there is any gene typing that can be done. He's awesome. I have worked with him for years and trust him wholeheartedly. Thank you again Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted December 7, 2016 Share Posted December 7, 2016 Hi Shari, I'm a newbie also. See my recent post. My situation was similar to yours in a lot of ways. However, I was fortunate to have a lobectomy by VATS surgery, so I'm recovering pretty quickly. So far as typing, my tumor sample was sent off to some place in Virginia, I think it was Quest. It was tested for EGFR, ALK and KRAS mutations. Quote Link to comment Share on other sites More sharing options...
LaurenH Posted December 9, 2016 Share Posted December 9, 2016 On 12/5/2016 at 8:28 PM, shari said: Thank you so much for the encouragement. I saw the pulmonologist today and he basically said the same thing and actually congratulated me for doing so well post of and not requiring any additional therapy. He is referring me to MD Anderson to see if there is any gene typing that can be done. He's awesome. I have worked with him for years and trust him wholeheartedly. Thank you again Hi, Shari, Welcome to LCSC! I am sorry to hear about your diagnosis, but it sounds like you are in great hands. Please keep us posted whether or not you end up getting genetic testing. I hope that you make many meaningful connections with other members in this community like Donna, Tom, Susan, and Bridget. Please feel free to explore the blogs and discussion boards and join in on any conversation that resonates with you. Please let us know if there is any specific kind of support or if there are resources on specific topics that you are seeking. Know that we are here for you and we look forward to getting to know you! Lauren -- Lauren Humphries Digital Community Manager LUNGevity Foundation Quote Link to comment Share on other sites More sharing options...
Wendy Fought Posted December 19, 2016 Share Posted December 19, 2016 Hi I am new to the group also was diagnosed with small cell lung cancer last week. Still in the unknown my MRI came back clear that is good as my cancer tends to spread to the brain its an aggressive cancer the way it is staged is limited or extensive. There is no stage 1,2,3,or 4. right now it is limited but the PET scan this morning will make the final determination. Hoping it has not spread. pretty scarred. Wendy Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted December 20, 2016 Share Posted December 20, 2016 Good morning, Wendy. We all understand the fear and uncertainty. Please know that we are all here for you. So many of us have walked that path and are willing to share our experience, knowledge and advice. Keep us posted. Blessings to you. LaurenH 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted December 22, 2016 Share Posted December 22, 2016 Wendy, Sorry I missed your post. Please give us news about your PET scan when your receive it. Merry Christmas! Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
LaurenH Posted December 22, 2016 Share Posted December 22, 2016 On 12/19/2016 at 2:22 PM, Wendy Fought said: Hi I am new to the group also was diagnosed with small cell lung cancer last week. Still in the unknown my MRI came back clear that is good as my cancer tends to spread to the brain its an aggressive cancer the way it is staged is limited or extensive. There is no stage 1,2,3,or 4. right now it is limited but the PET scan this morning will make the final determination. Hoping it has not spread. pretty scarred. Wendy Hi, Wendy, I'm glad you've joined LCSC. This is a great place to connect with other survivors, patients, caregivers, and advocates and to ask questions. Once you have more information about your diagnosis, please feel free to share it with the group along with questions/concerns. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation Quote Link to comment Share on other sites More sharing options...
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