belladonna Posted February 8, 2004 Share Posted February 8, 2004 Hello, A year and a half ago I was diagnosed with stage IIB NSCLC. I was coughing for about six months before I went to see a doctor. When I started coughing up blood that's when I panicked and finally made an appointment. Lung cancer was the last thing on my mind since I was a healthy 27-year-old female who has never smoked a cigarette. Oncologists that I've spoken since then were equally in shock and said chances of me getting lung cancer were one in a million. I sometimes feel that I've picked wrong lottery ticket. Two weeks after diagnosis 2/3 of my right lung and one lymph node were removed. After recovering from surgery I went through six months of chemo and 30 doses of radiation. As of last CAT scan (a month ago) I am clean and praying every day that the nightmare is over. I have been having a hard time recovering. I went back to work 5 months ago and still have periods of extreme fatigue and difficulty breathing. Also, ever since radiation I have been experiencing pain in my collarbone. Sometimes it gets so bad I need to take percoset just to be able to move around. Doctors have not been able to pinpoint the problem. I was wondering if anybody else here has had problems with collarbone? P.S. Praying for all of you, stay strong Quote Link to comment Share on other sites More sharing options...
Donna G Posted February 8, 2004 Share Posted February 8, 2004 Welcome belladonna from Boston. My name is also Donna ( minus the beautiful part) and was born and raised in Boston. Sorry to hear you share our diagnosis but glad you found us. Many young people with lung cancer have found this board I am sorry to say. I hope David P answers your post. He was about 20 when he had a lung removed and I believe that was 25 yrs ago. We have a sister of a young lad from Ireland who has lung cancer. I never had collorbone pain, but I found out I had lung cancer because of shoulder and chest pain. The tumor was on the edge of my lung way up in the apex pressing on a nerve. Since treatment I have had problems with my back where they broke ribs and spread muscles to do the surgery but not my collarbone. Also several on the board have had total pneumonectomies on one side and they seem to have their own unique post-op problems , Connie B may be able to help you there. Keep us posted now that you have introduced yourself. Take care Donna G Quote Link to comment Share on other sites More sharing options...
Hebbie Posted February 9, 2004 Share Posted February 9, 2004 I wanted to extend my welcome to you as well. I too am RELATIVELY young (34) and a non-smoker like you. Never in a million years did I even consider myself getting lung cancer, but here we both are! I had surgery one year ago next week and finished up radiation and chemo this past July. Since then, I have had several strange aches and pains, but can't think of collarbone pain in particular. I have had shooting pains in my breast on the surgery side (still numb) and for a while I had pain just below my breast near a rib, but was told it was lingering surgical pain and it has since subsided and I don't feel it now at all. I know that after surgery things can "shift" around and strange aches and pains can pop out of nowhere, but if you are concerned AT ALL about the pain in your collarbone, it might be worth a telephone call or trip to the doctor just to put your mind at ease! I personally have found that the WONDERING can drive me out of my mind! Thankfully, my oncologist and his nurse are pretty pro-active and have scheduled several additional scans during times that I have had unusual aches/pains..... Welcome again to our family and I wish you continued good health from here on out! Hope to hear from you again soon! Heather Quote Link to comment Share on other sites More sharing options...
bobmc Posted February 9, 2004 Share Posted February 9, 2004 Hello Belladonna, Welcome to you, and glad you found us!! I was also a stage IIB and had my left lung removed along w/ 18 nodes a bit over 2 & 1/2 yr.'s ago. And, YES , I am also having residual pain and have had to make allowances for it. This is pretty normal for many of us. The operation leaves alot of scar tissue and nerve damage is typical. Now with that said, what did happen is that the pain in the back was becoming worse, this began this sept. and like you I became concerned. I discussed it with my onc. and had my scans moved up. You didn't say what ct scans you were getting but mine consist of a head, chest, abdomen, and bone scan along with x-rays and bloodwork. What they did find was 2 small brain mets which they said are NOT related to the back pain, Not sure if I agree but It really doesn't matter as further testing takes place. Iv'e also had MRI's to the spine and brain along with a full PET scan that also showed a "hot spot" in the center of my chest which is also being followed up on. OK, so what I'm trying to say is that I think your absolutely RIGHT to be conerned and to keep being an advocate for your own health. I would also make sure I was getting the best I could as far as follow- up scans. There unfortunately is a lack of consistency with lung cancer which makes it real important for us to be knowledgable. again welcome and feel free to PM me if you have questions. God bless and be well Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack PET taken 1/5 - hot spot in mediastinum May be cancer?? "Absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
beckyg Posted February 9, 2004 Share Posted February 9, 2004 Belladonna, I also had oncologists tell me that they had never even HEARD of someone my age having lung cancer with no smoking history. They were sure that the lung tumor could not be the primary tumor, and ran every test they could think of to try to find the "real tumor". I know now that they hadn't heard of anyone like me because they hadn't been listening. We are a growing group--young, non-smoking otherwise healthy women with this surprise diagnosis. Sorry you have to be here, but glad you found us. Becky Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 9, 2004 Share Posted February 9, 2004 Belladonna, ANOTHER "young" non-smoking woman here. Amazing when you look at the odds, huh? I'd much rather have been surprised by Ed McMahon at my door since I "may have already won" many, MANY times according to the mail... When do you experience the pain in your collarbone? I had EXTREME pain in my collar bone any time I sneezed or laughed - especially when I laughed. My pain in the collar bone was the right side (same side as surgery)....explained to me as the nerves being "scrambled" and trying to find their way back together. I STILL have areas that itch that I just can't seem to scratch along my scar and relative areas. Deserves being checked into, but on the other hand, if it's caused by laughing, keep laughing. It'll eventually iron itself out. Fatigue from radiation can carry on for six months...and the stress of a cancer diagnosis probably interferes with your sleep pattern. I'm still tired a lot - and tomorrow is my one year anniversary of surgery! You have come to the right place for support and information. Welcome to the family, the club nobody wants to "have" to join yet nobody wants to leave... ..and I STILL buy lottery tickets. Odds are the same as they were before...(and I STILL haven't won more than $5). Take care, Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
Connie B Posted February 10, 2004 Share Posted February 10, 2004 Hey Kids, I'm not trying to rain on anyone's parade here regarding your ages, or the fact that you did or didn't smoke, I too have talked with many doctor's, Onc's, Rad Onc's, Pulm. and Primary doc's that have all said they are seeing more and more and more young people (non-smokers) that are being dx.d with lung cancer. In my support group we have had 5 young people (non-smokers) attend our group meetings, and I have heard of many more young people that have and are being dealt this nasty disease. Needless to say, I wish more doctor's would read up on the age groups that are popping up with lung cancer these days, and stop always looking to the fact that it's a smokers disease. Now, having said all that blah blah balh stuff! I never had any discomfort in my collarbone but, I will agree it can take time to heal. I don't know where you were radiated at but, I would really ask to have a bone scan if this pain is causing you such pain. I agree with Bob on getting more tests. If your doctor was shocked at the fact you have lung cancer, then I wouldn't think he would mind doing all kinds of tests on you so nothing else would shock him or you! I know some people have discomfort for a long time after surgery, but the pain you are discribing calls for a test of sort. Hope you will get it checked out, and if it were me, I don't think I would want to hear, "the doctor's are unable to pinpoint the problem". Rule out the Obveious! It's worth all the PEACE OF MIND! Good Luck and Stay with us. I'm sorry you have to be here, but I'm glad you found us. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 10, 2004 Share Posted February 10, 2004 beckyg's husband here. It is amazing that this is happening more and more that young women are getting this. And it would be going too far to call it a common occurrence, I think. But it made us feel very alone to think we were the only couple going through this. That was one of the greatest contributions of this site, knowing that there were others like us. It is not any better or worse being younger rather than older that I can tell, but it is somewhat different. And it is nice (but sad too, since we wouldn't wish this on anyone) to know that there are others out there who have similar things going on. Best wishes on complete remission and an end to collar pain. Curtis Quote Link to comment Share on other sites More sharing options...
teresa567 Posted February 12, 2004 Share Posted February 12, 2004 Hi-My dad suffered from terrible pain in one shoulder for weeks and weeks and like yourself, doctors could not pinpoint the problem. We ruled out spreading of the CA and rotator cuff issues...etc. Anyway, I got him into physical therapy and after about 2.5 months he claims the pain is all gone. The MDs now beleive it was residual pain from radiation. Radiation often kills good and bad tissue, so some of the structures in the chest can actually change shape/size etc. They claim this pain can come and go as the structures reshape and cells grow back etc. My dad also alternated b/t heat/cold packs on the area as well as massage therapy which really helped. Good luck to you!! Quote Link to comment Share on other sites More sharing options...
Lisa O Posted February 15, 2004 Share Posted February 15, 2004 Hello BellaDonna, I was told right away that my kind of tumor (primarily BAC) is found to be as common among non-smokers as smokers. I guess the 10% non-smoker ratio for lung cancer patients seems to be on the rise. I wish you the very best. You have found a great board. Quote Link to comment Share on other sites More sharing options...
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