Small Cell Lung

Dear jelwz23,

I’m a visitor from the Uterine Board…and sometimes I post on the Ovarian board. My heart went out to you when I read your post. I’ve been where you are and it’s devastating. It really helps to find support here. Sadly, a lot of the boards are often pretty quiet and it might take a long time for someone to reply. I’m so sorry you are facing this awful disease.

I’m checking this board today because I am in the unfortunate circumstance of waiting for the results of a needle biopsy I had done last Wednesday. I had a head and neck CT in May for an unrelated reason. I was horribly ill with a respiratory infection, but went ahead with the appointment because I had waited over 6 weeks to get it. Uninvited, the radiologist read into my lungs and saw “multiple nodules or nodular consolidation.” I called my GYN/ONC and he wanted full chest CT. That report was even more upsetting and maddening…I’ve come to think most radiologists are lazy and incompetent….he reports…two “masslike areas,” both measuring a little over 2cm, and “presumably metastasis.” Presumably??? Infuriating. What??? He gets orders from an ONC, and assumes it must be metastasis. He offered no descriptors such as shape, luminosity, edges….nothing. Everyone is saying not to panic, but they are not me. My PCP and my cardiologist, both think it’s much ado about nothing. I know ONC is being diligent. I’m just heartsick at the idea that I’m having a recurrence or this might be lung cancer. The radiologist who did the biopsy didn’t say it outright, but it was clear he thinks it’s cancer.

I feel better than I’ve felt since I was diagnosed 3 years ago. I can’t believe I might be sick again.

I wish I could help you with knowledge of the particular drugs you are getting, but mine were different. Just remember not everyone’s body reacts exactly the same way. Just try to get through it. I hope you find some support here. The first 6-8 months after I was diagnosed the very first word in my head every morning was “Cancer!” I hated that! Finally that stopped being true. Well, until very recently. I hope it does for you, too.

prayers & hugs,

A

Thank you so much for replying, Sherri.

Wow…you have really been through it. I’m so sorry. Thank goodness you got yourself to an ER and we’re able to be diagnosed. I really don’t know anything about your chemo drug, but it’s probably working on killing fast growing cells, which is why they affect hair follicles. I had what I called “regular chemo nausea,” which was pretty well controlled by meds, but I also had terrible nausea and spells of violent vomiting after every cycle about days 8-10. I learned that the cells of the lining of the stomach are also fast growing cells. It was preventing any food I might be able to eat from moving on out, so it remained for 12-15 hrs and then the violent vomiting. Always in the middle of the night. It was so acidic it burned my esophagus, throat, and mouth. One night I was on the back porch for a few minutes & didn’t quite make it to the grass when I vomited. In the morning my husband discovered that the concrete was etched. That’s how bad it was! You might try OTC meds (Prevacid) for stomach acid or ask for a prescription (famotidine?). My meds have not done my kidneys any favors, but mostly made me anemic. And the immunotherapy sent me to the hospital twice for blood infusions.

I think the reason they didn’t order a bronchoscopy was because my “masslike areas” are towards the outer edge, so “peripheral” (but not touching) of my right middle lobe….so not near or involving the bronchi. Would have been nice if one of the stupid radiologists had mentioned this, right? I only learned it when they did biopsy. They poked me about an inch SE of my nipple. I have small breasts, so I don’t know how that might have gone otherwise. (I’ve written a couple of posts about it on the Uterine board if you want more details!) Ironically, I went in feeling great, but as a result of the procedure ended up with lung cancer symptoms….chest pain, awful coughing, and when I breathe deeply or cough I can feel pain in my entire lung. Not happy.

I realized after I got home and viewed notes on my hospital portal that the radiologist who did the biopsy had incomplete information that might explain his bias about a possible recurrence. The document had an extensive description of a major surgery I had just last November. ONC was convinced from an inconclusive CT (they are ALL inconclusive!) that my cancer was back. We “have to go in.” No Cancer! But he removed 8” of my colon. It was tangled up & about blocked off with scar tissue from original surgeries. The info this guy had last week described all of it in detail, but was missing one VERY important detail….”No malignancy.” So, in his mind I just had a major recurrence less than 8 months ago. No…. I didn’t. All the radiology I had mentioned swollen lymph nodes in the center of my chest. This last guy did mention that they weren’t involved at all with the “masslike areas.” Well, thank goodness for one thing.

I’m desperately anxious to get my path report. With the holiday it may be late next week. I’m glad someone finally felt some urgency about your situation and started treatment. You can click on anyone’s screen name and read their profiles. I always had to fight like a dog to get what I want. I’ve hung around the ONC’s office for so long I use my seniority (and the fact that they’ve grown to love me!) to make stuff happen. I say, “I agree to do this on the condition that……otherwise, no…..” It works.

I hope you feel better. One thing I try to remind myself when I’m overcome with dread or worry…..The chances of me dying in a car accident (on the nearest interstate to us) are far greater than me dying of cancer anytime soon. So, do I really want to lose great days worrying? None of us perseverate about dying every time we get in a car, right?!

If you read my Uterine board posts, you’ll find that I bought a horse a few months ago. HE is keeping me sane right now! When I’m with him, doing things with and for him, cancer is the furthest thing from my mind. You have to stay on your toes with even the sweetest, most gentle animal if he weighs 1200 lbs! There’s a reason equine therapy is so effective!

Try to have a nice 4th. If you wanted to, you could always private message me! I don’t use my name here, because it’s public and my name is somewhat unusual. Hugs & Hugs,

❤️, A

My wife had NSC but evolved into SC lung and has spread. She is also on Carboplatin and etoposide. I have noticed that I need to speak louder and "what" is her usual response. Oh well; what can I say. This whole experience is terrifying for her and me and gets her down most days. Sometimes I wonder if chemo is worth it and if the CHEMO is the one that will kill her. This may seem cruel, but before her 2nd line began in September, we were flying, visiting grandkids and kids and 4 weeks after this cocktail began, she sleeps most hours of the day. I wish you well during your experience.