Mamma Om

Hi Dina A. I want to share my carcinoid lobectomy experience with you. I also have immune system problems, like RA and Fibromyalgia and have COPD and asthma. I also had had lots of other surgeries, including 2x breast cancer and thyroid cancer. I was originally diagnosed with adenocarcinoma after a needle biopsy, in the right lower lobe. The cardiothoracic surgeon opted to remove the whole lobe. However, when sent to the pathologist, another small tumor was found that was initially diagnosed as small cell. Then, a few days before my 1st chemo/radiation, the Tumor Board took up my case and found that while the original tumor was adenocarcinoma, this 2nd one was neuroendocrine carcinoid. These tumors often appear in the digestive tract but are not unknown in the lungs. The good news was that removal of the entire lobe meant no need for chemo or radiation for either tumor. I have been cancer free for almost 6 years. However, there is a lesion or nodule now being seen in my (now called) right lower lobe so I have had chest X-rays, CT scan, and a recent PET scan. I don't know what happens next. I am seeing my oncologist soon. However, I had the surgery and was in hospital for 5 days. I had a chest tube, a heart monitor, a lung monitor to measure it fluid coming out of the chest and also in case of a partial lung collapse, and a catheter, but I was very comfortable and was getting respiratory therapy several times a day. I was told that removing the chest tube would be very painful, but it wasn't. Only took 5 seconds and done! I went home the next day. I took it easy for 5 or 6 weeks, and gradually got my strength back and my lung capacity up. I should mention that I was 74 at the time. I hope you can relax a little as going into this journey in fear will make it harder. Continue to ask questions of your Drs. and here. I have had worse surgical and worse chemo/radiations than with my lung cancer. Best wishes!

Hi Blossomsmom. I would immediately make an appt. with an oncologist. But if you can't get in soon, try for a pulmonologist. As you may know, one doctor can sometimes get you in to another specialist a lot faster than you just trying yourself. With your lung cancer experience with both parents, your smoking history, I can't believe your Primary wants you to wait 3 more months! (Personally, while getting this all set up I'd also be looking for a new PCP). I already had an oncologist when I was diagnosed with lung cancer as I'd already had breast cancer twice and thyroid cancer. I also already had a pulmonologist because I had been diagnosed with COPD (from 30 years smoking) and also asthma. My family history was that my father and his father both died of lung cancer. I was very lucky to have good medical care and am considered NED at this time from all cancers. I wish you well and please do be proactive and get a specialist to see you and check up on that nodule. Please let us know what you find out! We all care! Best wishes, Momma Om

Hi. I'm wondering if the study you are in is prescribing any meds? I have had breast cancer twice, thyroid cancer, and lung cancer. I want to suggest you call your Oncologist before you attempt to go back to the gym. Also, my Docs always reassure me that they don't mind if I call or go in for a false alarm. They say that if it is something they are glad to have me present early on when treatment is easier. Best wishes. Mamma-Om

Hi Sabin, I welcome you to our club, the one no one wants to be in. But here you will find stories of hope & healing. My LC journey began as my 4th cancer diagnosis over 18 years. There was so much cancer on both sides of my family that my 1st diagnosis of breast cancer didn't even surprise me. I had surgery, chemo & radiation. I found the love & caring of friends, family, neighbors, nurses & Doctors to be astonishing. Twelve years later, I was also not so surprised to learn I had breast cancer in the other breast. That one only required 2 surgeries. The 3rd time it did surprise me. I had never heard of thyroid cancer & by now I was feeling like, "Go pick on somebody else.". I had surgery to remove the thyroid & radioiodine therapy and began daily thyroid pills. Three years later I was diagnosed with lung cancer, had a CT guided biopsy, PET scan,and more. When the right lower lobe was removed and sent to pathology, a 2nd tumor was found and diagnosed as small cell. Now I was told I would need rigorous chemo & radiation. On the very day I was to start treatment my Oncologist told me she was doubtful of my diagnosis & took my case to the weekly tumor board at the Cancer Center. That bunch of educated, dedicated, caring Doctors determined the 2nd tumor was not SCLC but a rare neuroendocrine carcinoid. All the treatment I would need is the surgery I already had. Healed from surgery quickly, and 3 years later no evidence of disease. Hang in there. LC is not a death sentence.

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