Mamma Om

Mark, generally "spread" means some cancer cells left the original tumor and migrated to another part of the body. It can be to an organ, the brain, lymph nodes, etc. Sounds like yours only went close by, to the lymph nodes in that part of the lung. That's the good news. But they could spread further, even after surgical removal, and could show up later. Only one or two stray cells can be a problem. That's why they do chemo and radiation, to find and kill any stray cells. I think the cancer travels in the lymph fluid, not the blood, but I'd have to look that up. Stay positive, you can beat this!

Hi Mark, sorry to hear your lung cancer story. Hopefully I can give you some encouragement. After having breast cancers in 2001 and 2012, thyroid cancer in 2015, I was diagnosed with lung cancer in 2018. After a lung biopsy, small cell adenocarcinoma was diagnosed; after PET no spread to lymph nodes or other places. Surgery to remove the lower right lobe was done, and the pathologist noted a second tumor that had not been seen by CT or PET. It was a small neuroendocrine carcinoid, and I was initially scheduled for immediate chemo and radiation. However, just days before my first chemo my Oncologist submitted the tumor to the weekly Tumor Board. They all decided that this neuroendocrine carcinoid was not a Large cell tumor, and would not require chemo or radiation. In fact, just removing it was all the treatment needed. As others have said, neuroendocrine tumors are rare in the lungs. They are usually found in the stomach or other parts of the digestive system. Are you sure they said carcinoma and not carcinoid? Ask your oncologist which it is and to explain the difference. I think the reason you will need chemo and radiation is because it had spread. I had chemo and radiation 20 years ago so I am sure it is much different now. Anyway, this is a great group, and will help you out when you need information, support, encouragement, resources, and more. Try to be encouraged by all the survivor stories on here, including me, all these cancers and here I am, just celebrated my 78th B'Day!

Hello K. Sorry to hear of your mass. I have heard of women turning up with breast "lumps" following COVID, revealed at routine mammograms. I don't think they were cancerous, though. I didn't follow up with the findings. I also am surprised that the pulmonologist would say "Cancer" without a PET and/or a biopsy. I know from experience that the appearance of a nodule or mass can indicate the state of it, but only a biopsy can say for sure what it is. I had a small nodule in my right lower lobe at age 75, had surgery to remove the lobe, and the pathologist found a 2nd tumor in there, and it was even a different kind of cancer. Luckily, though, removing the lobe and the cancers was all the treatment I needed. Unfortunately, there is another 2+ centimeter nodule in the middle lobe, called a spiculated, ground glass appearance that the doctors are watching with CT scans, but I finally have the Ins. OK for a PET/CT. I am allergic to the CT contrast medium so that makes it harder to see. I have also had breast cancer twice and thyroid cancer, but here I am!! Best wishes, have the tests you need, and know that we are still learning about COVID and its effects. I hope your mass is just an anomaly and clears up. Mamma-Om

Hi Cin. I can sympathize with your anxiety. You must wait for the PET scan results before you make any assumptions about your treatment. One thing I've found out with cancer (I've had 4 diagnoses of cancers in breasts, thyroid and lung, and of 5 cancers) is that cancer treatment is so varied and changes so fast that you must have patience and you must accept that things can change in both your diagnosis and in the treatment options. No matter what you've heard or what you read, your case is completely unique to you, and things could change in a minute. My lung cancer was discovered after CT scan and nodule was followed until it grew. A biopsy showed adenoma, a PET scan showed no metastasis to lymph nodes or other body regions. Surgery was scheduled to remove the lower right lobe, 5 days in hospital, and we waited on pathology before deciding on treatment. Well, pathologist found another cancerous tumor in the removed lung lobe, one that had hidden and was not seen at biopsy or Scans. First I was told it was a serious small cell type and would require strong chemo and concurrent radiation on the same day. But unbeknownst to me, my oncologist had a gut feeling and was not satisfied with the diagnosis of that second tumor, so she sent my case to the weekly tumor board. I showed up the following Monday prepared for my first dose of chemo/radiation and she told me that the treatment was off, that the board found that it was a rare neuroendocrine carcinoid, not small cell, and removing it along with the lobe was all the treatment I needed!! Talk about good news!! The other thing is that my oncologist is not always the most personable woman and is sometimes annoying and impatient, but I would not change because I have the utmost respect for her knowledge, training, dedication, and her "gut feelings". I now have another nodule in the former middle right lobe that is being watched and scanned every 3 months. Next time, next month, is an annual PET scan, so we'll see what's going on there. I am a 77 year old female living proof that cancer is not a death sentence, and that cancer is like Murphy's Law: if anything can change, it will! Best wishes! Mamma-Om

Hi Barbara, I want to reply to your question about smoking one cigarette a day. Everything people have already written is true. Even one is a danger. I smoked a pack a day for 27 years. I quit once for 3 years, then went back to it. I used to say I was an expert at quitting because I did it so often. But the day of reckoning eventually came. It was my 45th Birthday and I was sick, again, with bronchitis. I decided to just not smoke for that day, in the hopes I would feel better. The next morning I went to grab a cigarette and thought that I hadn't smoked all the previous day, maybe I could do it again for one more day. Every day after that, I would decide if I was going to smoke or not. I could not face thinking that if I really quit I would never be able to smoke again for the rest of my life. So I quit "One Day At A Time". Now it's been 30 years since I quit, and the truth is, there are still times when I miss smoking a cigarette. It's true you get over the physical craving in 3 days, but the psychological craving takes a lot longer. And remember, when I quit people were able to smoke everywhere: hospitals, restaurants, parties, schools, EVERYWHERE. So was always surrounded by people smoking. Now, the bad news is that those 27 years that I smoked, along with genetics and bad luck, has left me with asthma, COPD, and two kinds of lung cancer. But I really believe that if I hadn't quit when I did I wouldn't be writing this today. Best wishes to you and we will be here for you no matter what you choose. Mamma-Om

Dear Barbara, I had a chest tube in place for 5 days following a lower right lobe removal. It did not hurt at all! The trick is to let yourself go limp, no tensing up of muscles. Take a few deep breaths. Don't concentrate on expecting pain; think of something pleasant like the taste of a hot fudge sundae or the smile of a grandchild. It's over in a second. I also have a stomach tube in place one time for 6 weeks! So you don't know what you can put up with until you have to. You should use the same mental techniques for blood draws; you'll be having lots of them in future, depending on your prognosis, treatment plan, etc. Also, ask your provider for referral to some counseling and/or anti-anxiety meds to help you get through it all. Your fears may be too high to use these suggestions. Most of all, though, rely on your own strength, your desire to be well again, and the trust you have in your medical people. You can do this!! Mamma-Om

Hi Judy M2, Welcome to our Lungevity group. You have certainly been through a lot already! I know what a sudden Merry-Go-Round we are put on right after a lung cancer diagnosis. And then you had the perforated colon, the dehydration and lack of nutrition, the chemo and radiation. Gosh, you've done really well, and it's good to hear you are feeling better now. We all have our stories and every case is different, and I am glad to be in these times when medicine has advanced so much and offers us so many treatments. There is hope now, where in the past it was not always so. Sounds like you have excellent medical care, as well as a husband as caretaker. Keep up the healing, and your good attitude, and I wish you well. Mamma-Om

Hi Rose. I'm sorry to hear of your diagnosis, but I'm another survivor of lung cancer, as well as 2x breast cancer, and thyroid cancer, so don't give up hope. I want to say that I hope you never again have to delay a diagnosis test, a procedure, or a doctor visit due to lack of transportation. I know that before coronavirus the American Cancer Society offered free rides to any cancer patient for all of the above, and also treatment appointments. Call them and find out. You can also check with your local senior centers, state or County senior help programs, and some church groups and religious organizations. Most of these resources offer some form of ride for elderly medical patients. Make some calls, as you must not neglect yourself and your health for lack of a ride. I wish you the best through this journey.

Hello again, ChiMama. Try to be easier on yourself. You've been through a real trauma, and you are doing very well. I also had a surgery during this pandemic craziness and it was awful. I will note here that I have had 26 surgeries, most within the last 20 years, and I had my lung cancer surgery 2 years ago. This one in May was so different! I was alone, too. They only let my daughter come with me as far as the registration desk. I only stayed overnight but I was alone in the room, and there was very little traffic in and out, of nurses, doctors, cleaners, dietary. or anyone. I also found the nurses to be cranky, short-tempered, and overworked, a total change from my usual experience at this hospital. If this had been my lung cancer surgery I don't know if I would have made it. At the very least I would have been weepy, discouraged, and disappointed. So, go easy on yourself. Now that you're home, you and your family can take better care of you. Don't worry about a certain number on the spirometer, just keep doing it and your lungs will get better. Keep moving and walking, but also let your body rest and heal in between. I had the right lower lobe removed, was already diagnosed with COPD, and asthma. I was 75 years old and in the hospital for 5 days. Two years later, I walk two miles a day with my dog, morning and evening. I climbed 2 flights of stairs yesterday at the medical clinic to avoid crowded elevators. I live alone and take care of myself, house, car, and dog. Take care and you will see improvement day to day.

Hello ChiMama, I had surgery in 2018 for a primary lung nodule in the right lower lobe. Previously I had surgery for left breast cancer in 2001, right breast cancer in 2012, thyroid cancer in 2015. My surgeon, a cardiopulmonary specialist, opted for removal of the entire right lower lobe. He explained that taking the whole lobe ensured he got every cancer cell within the lobe, and he also said that removing the whole lobe protects against losing or spreading any stray cancer cells. The surgery required 5 days in hospital, a chest tube, and daily x-rays to check that my lung did not collapse. The really interesting development was that the pathologist found another cancerous nodule within the lobe that had not been seen on CT scan or PET scan. It was first diagnosed as SCLC, where the first nodule was adenocarcinoma. The diagnosis was changed shortly after my case was sent to the Tumor Board of our large Cancer Center. The new diagnosis was a rare neuroendocrine carcinoid, not usually seen in lungs. Neither nodule required more treatment after removal. Now I am being watched for another ground glass nodule in my right middle lobe (they now refer to it as my lower lobe), and in fact I just had a CT scan today. If my oncologist is still suspicious of it after the report, she will want to do a biopsy. You should get as many surgical opinions as you need to feel comfortable. I only had the one consult but I felt confident with the surgeon and it turned out OK.

Hello from the U.S. I had lung cancer two years ago. My initial diagnosis came from a needle-core biopsy. It was adenocarcinoma, a smallish nodule in the lower right lobe. Surgery was done to remove the whole lobe, after PET scan showed no metastasis. At that time I was told no need for chemo or radiation, removing the lung lobe would be enough. But then, at pathology another nodule was found and that was determined to be small cell lung cancer, a virulent form of cancer. I was rushed into having a port put in, plans for concurrent chemo and radiation, chemo classes, meetings with oncology and radiology........I found out that I was not eligible for immunotherapy because I have a compromised immune system from rheumatoid arthritis. On the very morning of the first chemo, I met with the oncologist. She said that she was suspicious of the diagnosis of the second nodule as small cell, so she sent my case to the weekly tumor board, composed of Doctors, Radiologists, Pathologists, and more. They decided that the second tumor was a rare neuroendocrime carcinoid, not usually found in the lungs. The good news is that I needed no further treatment for it beyond the removal of that lobe. So my point is, don't be surprised if your husband's diagnosis or treatment options change as you move through this journey. Medicine is complex, cancer is more complex, treatments change and evolve daily. As more clinicians become involved in your husband's care, things can change, and that's good. It means that many educated minds are at work to find the best path for your husband. Feel free to ask questions, though, if you're confused. I found the American Cancer Society to be a great source of information, available by phone 24/7, and they don't mind if you call multiple times a day! You may have a similr organization in the U.K. Bests wishes to you both.

Please do not feel sad and discouraged. I am a 4 times cancer survivor! Most recently (2018) I was diagnosed with NSCLC, a nodule in the right lower lung. I had a biopsy, PET scan, and surgery to remove the right lower lobe. Then I recovered in the hospital for 5 days with a tube coming out of my side. I finished recovery at home with the help of my daughter, who came for 3 weeks, and a friend who came for 2 weeks. By then I was driving and returning to normal very fast. However, pathology found not one, but two nodules in that lobe. The first one was adenocarcinoma, but the second one was thought to be SCLC, a more virulent and dangerous cancer. I was scheduled for concurrent chemo and radiation. However, my oncologist had a gut feeling about that second nodule and sent my case to the weekly Tumor Board. With oncologists, radiation doctors, pathologists, researchers, and others working on it, they decided the nodule was actually a rare neuroendocrine carcinoid. As with the adenocarcinoma, the only treatment required was removal of the lobe. I am 76, have COPD and asthma, rheumatoid arthritis that affects by immune system, and I have recovered wonderfully. I now have a small dog and we walk 1 to 2 miles a day. Do not get discouraged. Do not worry ahead of time. You need your strength, obvious intelligence, and trust to go through this journey. Trust your doctors, enroll in a support group if you do not have support, and you will be OK and will go on to enjoy a full and busy retirement.

Hi Ginger. I'm also a person whose body makes nodules and/or cysts all over. I lost several teeth as a young woman (76 yrs. old now) due to cysts forming under the teeth in the gums., had a huge ovarian cyst, have cysts or nodules on my right kidney, had nodules on my thyroid, one of which became cancerous and had my thyroid removed. Let's not even talk about the cysts in my breasts, and I've had breast cancer twice, 11 years apart. My lungs have many small cysts. Some disappear, but one was biopsied and was NSCLC and I had the lower right lobe removed and they found another nodule inside that was at first diagnosed as SCLC, then found to be a rare neuroendocrine carcinoid. No treatment beyond surgery for either one, luckily. Now I've been having 3 month CT scans to follow one particular nodule, a groundglass appearing one and they say that is indicative of malignancy. But when I saw my oncologist last week she said that she was "concerned" but didn't want to do a biopsy since it's size and location might make it difficult to get a good reading. So one more CT in 3 months and then maybe another biopsy. I can't have anymore lung removed, though, as I also have COPD and asthma, and they say I would not be able to breathe. So I don't know what options I'll have if it is cancerous. It's also on the right side, in the former middle lobe, which is now referred to as the lower lobe. So I totally sympathize with your predicament. Your nodule is bigger than mine have been, and that may be why they want a biopsy. I wish you the best outcome! Mamma Om

Hi Seventhson. I had a neuroendocrine carcinoid. Long story, but I had been followed for a few years watching a nodule in my right lower lobe. Lat Jan. it showed it had grown so a biopsy was done (I've previously have two separate breast cancers and thyroid cancer). It was malignant, but was a fibroadenoma, a type of NSCLC. So I had the surgery, which was only just possible because I also have COPD and asthma. When the lobe was sent to pathology a second tumor was found, and originaly diagnosed at SCLC. Plans were made immediately for me to get a IV port put in my chest, and to start chemo and radiation, 3 days in a row, every 3 weeks. But my oncologist had some questions so she sent the pathology to a tumor board which is affiliated with a large cancer center, and they decided it was not SCLC, but the nueroendocerine carcinoid. I understand these are fairly rare. But the good news is that removing it (and the lobe it was in) is all the treatment needed. A couple of months later I had the IV port removed as it never worked properly even for a blood draw, and was forming clots. So I feel OK from the lung surgery, though I have slightly diminished lung capacity. But now they've been watching another nodule in my right middle lobe, and just also discovered a suspicious lump in my left breast. So I am having mammogram and ultrasound on that tomorrow. But I am a survivor of all this! Best wishes with your carcinoid. You should be fine,

Hello. I'm writing to tell you that I also have COPD w/emphysema and also asthma. I am almost 75. I smoked for 27 years but quit 30 years ago. This past April I had surgery to remove my right lower lobe that turned out to have two nodules: one adenocarcinoma and one that was initially diagnosed as SCLC, a dangerous type. But just days before my first chemo I was told that the tumor board had decided that it was not SCLC but a neuroendocrine carcinoid, a somewhat rare and relatively harmless type. Anyway, I wanted to reassure you that it may be possible for you to have surgery even with your lung conditions. I had to undergo a breathing test (PFT), and a PET scan to be sure none of the cancer had metastazied. I was told that I just passed the breathing test by a hair. I had the surgery, had a tube in my side for 4 days, was in the hospital for 5 days, and I'm all right, not much more short of breath than before, and I don't need oxygen. Now I am having a CT scan on Tuesday to look again at another nodule in my right middle lobe that is called spiculated. I don't know what will happen if that has gotten bigger. I know I am not able to have more lung surgery. I am sorry your husband is not being supportive. Does your hospital or cancer center have support groups you could attend? You need people to talk to, I know. Best wishes. Mamma-Om