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ChiMama

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  • City
    Paradise Valley
  • US State (if applicable)
    ARIZONA
  • Country
    USA
  • Gender
    Female
  • Status
    Lung cancer patient/survivor
  • Interests
    Dog Mom to a rescued Chihuahua
    Colon Cancer (stage 1) 2016, lung nodules found in first scans & monitored since.
    Ground glass nodule 1.1mm biopsied May 2020, adenocarcinoma consistent with Lung Primary. Upper Left RATS July 2020, Stage 1a. Navigating my way through this!

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  1. I totally get you on the food! One hospital system in my town has pretty decent food, but the one I had my lung surgery in has terrible terrible food. Dry, tasteless, overcooked, horrible cheap quality. Literally Campbells soup was listed on the menu that came with the tray. And they never got my orders right. Lucky your husband can bring you real food! Hope you get out soon and have a nice real dinner!
  2. LRB none of the OTC stuff worked for me, even my go-to Pei Pa Koa syrup and Fishermen's Friends were ineffective. Prescription cough syrup with codeine didn't work. The pearls worked. I was so so so tired of coughing I was finally willing to try anything. I had a pulmomologist from the time the nodules were discovered during my colon cancer scanning in 2016, so she was on top of my scans 4 years before the LC dx, and was the one who suggested the biopsy when the 9mm nodule grew to 11mm. She and my oncologist coordinate my continued care. (I was stage 1A) After my second followup visit with the surgeon who did my lobectomy, he pronounced me cured and is no longer involved in my recovery or followup at all. I also experienced random crying. I think partly from the emotional hit of having a second cancer, all the challenges of dealing with it during the height of the pandemic, the frustration and physical stress of the coughing, the financial stress and worry... Also I have a theory that the anesthetic messes with you and takes some time to process out. I also found my emotions affected the more I compared my recovery to others, thinking I wasn't healing and getting "back to normal" fast enough. Once the coughing got better it really helped me stabilize my emotions - although there are times to this day when it gets to me. My dog really helps, looking out at the wildlife and birds in my yard, doing simple routine things that make me feel like I'm making even a little progress, and trying to focus on one thing at a time. There are online meetups with the group here you may find helpful too. 💜
  3. Hi LRB - Welcome to the forum! I had an upper left lobectomy in mid-July 2020, and also had a persistent cough after the surgery that went on for months. It was mostly little naggy annoying kinds of coughs, half-coughs, but sometimes I coughed until I gagged and choked. Almost anything triggered it - doing the spirometer, the breathing exercises, taking a deep breath, laughing, scents. It sometimes went on most of the day. Once I coughed so hard I pulled a groin muscle! It was driving me bonkers. The only time I didn't cough was when I was sleeping or reclining. My pulmonologist had given me a prescription for benzonatate (aka Tessalon Pearls) that I was hesitant to take but finally agreed to when it was explained that the cough was most likely a result of irritation due to the surgery and continuing to cough was irritating it further. They said the cough medicine would stop the irritation and allow it to heal. So I started taking it at the end of September. It helped calm it down fairly quickly and after a few weeks the coughing was under control. By mid-November it was 90% gone. So my recommendation would be to see a pulmonologist and discuss whether a cough medicine would help. 💜
  4. Hi Tom - Lou and Michelle gave you some great input in the other thread. You have many other things going on that complicate your situation and are undoubtedly adding to the reasons your doctor doesn't want to do a biospy. I had a CT guided needle biopsy that resulted in a collapsed lung - It resolved by the next day. I would ask for the liquid biopsy or *something* to know what you're dealing with because the option of "letting it go and taking my chances" wouldn't work for me. And I would get a second opinion (which I always do anyway).
  5. Hi Sandra - Like Lou and others, I started with colon cancer and later lung cancer... in 2016 i was dx with colon cancer, had it removed - stage 1. During the initial pre-op scan a small 8/9mm lung nodule was noted. One scan report said spiculated but over the years the scan reports varied and sometimes mentioned spiculation and sometimes not. Even early on when the CT report said it was spiculated, my pulmonologist and oncologist weren't overly concerned and just had it on the watch list. It remained stable until April 2020 when it had grown 2mm so a biopsy was ordered. Like you I was concerned about it being a CC met, but the biopsy showed primary lung cancer adenocarcinoma, and I had a lobectomy in July 2020. I feel a little lucky that it was lung cancer and not a met but I also know that the treatments and prognosis for stage 4 CC have come a long way in recent years and many people are doing very well, living well for many years, and even becoming cancer free. If you haven't found it yet, there's a great support forum at the Colon Club. There's a sub-group there of people with lung nodules who call themselves "The Lung Thang Gang." They may have more references as to whether CC lung mets can show up as spiculated. Someone in that group recommended this Lungevity group which is how I found the awesome community here. Fingers crossed for you! 💜
  6. @Rower MichelleI did bedazzle it! Got a pack of 10 on Amazon, and the blue & white FACE SHIELD across the top is a little too much for my taste, so I put leopard print duct tape across the top. Now that it's summer, I wear a high collared long sleeve shirt and a wide brimmed hat instead of the hoodie. Glasses perch on the nose so I don't have to take them on and off. Once I leave the house everything stays on until I get home again. My doctor visit and "safer space" attire is just the mask and big glasses, no hat or shield. Since we're in this, we may as well get creative!
  7. I don't know that I would technically qualify for the booster at this point (stage 1, no chemo), but when the time rolls around I would get it if my oncologist & pulmonologist recommend it. @hillhamI used to travel extensively and haven't since COVID started... Planes and airports have always been germy environments, and I've always wiped down my seat area and mastered the art of not touching anything. If and when I go back to an airport/airplane, I will be wearing my high filtration respirator mask, a shield, gloves, and a hoodie. That's how I dress to shop these days, and I'm sure it looks weird to some people but I don't care. I call it my Ninja look. 😎 The shield makes me feel so much safer than a mask alone!
  8. Hi Pat - What has your medical team said about these issues? I had constant coughing for 3 months after my lobectomy. It was very draining physically and emotionally. My doctor prescribed benzonatate and that broke the cycle of irritation and calmed it down by 90% within another month. I'm a year post-surgery now and I cough more than before the surgery but not incessantly like right afterwards - mostly when there's bad air or something triggering it. I also have a hiatal hernia which can cause reflux - I've actually not had many symptoms of that, and the solution if I do is to eat smaller amounts and nothing later in the evening. Hope you get it figured out and resolved!
  9. Interesting! Now that I've had 3 separate cancers and not a lot of cancer in my family except for my mother who's also had 3 different cancers, I've been wondering if I lived on a toxic waste site at some point.
  10. Hi Sarah - Lou's tips are the best! Also I found that I needed to sleep in a recliner for a while as even with the wedge pillow it was super painful to get in and out of bed. As has been said, she should be sure to do the breathing exercises, walk walk walk, and don't let her lift anything for a couple weeks. Sending good vibes for an easy and successful procedure! 💜
  11. Hi bang - it's natural to have your mind go to all the "what ifs" but do try to remain calm and take one thing at a time. 💜 As Lexie says 6mm is TINY. I was diagnosed with colon cancer 5 years ago and it was removed, stage 1, and I have now reached the all clear point with it. At the time of that diagnosis, they also found a 8/9mm spot in my left upper lung. Like your pulmonologist has with yours, it was put on the watch list and looked at in my regular scans. Because even though lung cancer doesn't usually metastasize to the colon, colon cancer does tend to metastasize to the lungs and liver. Four years later it grew 2mm and we did a biopsy that showed adenocarcinoma lung cancer - the good news being that it it was not a colon cancer spread. That was also removed and fingers crossed I am good to go! SO. It's great you're seeking information and support! Hopefully your journey will be uncomplicated and nothing to worry too much about. Get the colonoscopy and go from there. When it comes time to do the prep, I can give you some tips to make it easier. Also there's a great support group at The Colon Club: https://coloncancersupport.colonclub.com
  12. Yikes! Several signs along the way! The first surgeon I saw said he doesn't do VATS for cancer. I already knew from being on several cancer forums that it's done all the time for cancer! If he had said, "you're not a good candidate because of where it is" or another science reason, I wouldn't have been suspicious... but "I don't do VATS for cancer" rang wrong to me. Also he was a thoracic surgeon, heart and lungs, but the only pictures and plastic models he had in the whole office were of hearts, no lung pictures or charts anywhere, so I figured he was more of a "heart guy" and not as experienced at lungs in general, specifically VATS. So I found another surgeon via my oncologist who ONLY does lungs, top doc in the field, and ended up having RATS.
  13. So glad you found a doctor you trust. My first surgical consult I just didn't like the vibe and he also said he would only do open surgery without an explanation as to why. Having the info and the why they'll do things a certain way is so important to having confidence in your team! So great to have a plan!
  14. ChiMama

    Cancer Markers

    Hi jack - I've been having my CEA tested every 3 months for almost 5 years since my colon cancer diagnosis. As I understand it, 5.9 is slightly elevated but not dramatically so. My levels have always been in the "normal" 2.5 - 3.8 range even when I had an active tumor. Once it went up to 4.9 and my oncologist went on red alert because mine are always so low. The next round, it was back down to 2.9. The test can vary widely between people - some people in a similar situation can have levels in the hundreds. So it's an indicator for some people and not as much for others, and levels can vary for other non-cancer reasons too. As far as CA 19-9, I'm not a medical professional so I don't know the intricacies, but those levels still seem high. Perhaps she could have you do both? I know quite a few people in the CC community who have both tests done.
  15. Hi Char, my nodule was similar - 9mm for a few years then it grew to 11. It's good to find it when it's that small. I had a biopsy before the PET scan so already knew it was adenocarcinoma non-small cell. I had surgery in July to remove the upper left lobe. It wasn't the funnest thing I've ever experienced but I got through it and the doctors have pronounced me "cured." So hopefully yours will be the same! One step at a time, take notes as you think of questions and bring the list to your appointments. Also see if you can record your doctor visits - My head is always in a whirl and I find being able to play back the answers helps me remember what they said and what the plan is. You got this!
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