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Good evening to all. My name is Katie and I live in Western North Carolina. I am guilty of having lurked around this forum, partly because I was so blasted angry with a diagnosis of lung cancer. You see, I am a 2-yr breast cancer survivor, and I can assure you that apart from the obvious difference, BC and NSCLC are worlds apart. Some family background. In 1972 at the age of 45, my mother died from metastatic melanoma. I am the eldest of five and to date only my surviving sister has escaped a cancer diagnosis. Our youngest sister was diagnosed with an aggressive breast cancer at the age of 44, and she died just before her 50th birthday. The youngest of the family, my brother Val died from esophageal/gastric cancer within two months of diagnosis. My surviving brother is a melanoma survivor. At the risk of sounding pedantic, we take cancer very seriously in my family. (Our dad had heart disease) My breast cancer was IDC, but it had not gone beyond the breast and unlike my sister's, it was not HER/2+. Christine was diagnosed in 2005 and no one talked about the BRCA variants back then, at least not around here. My tumor was tested, and apart from having some unknown variants it was presumed unlikely to return. In January of this year, a X-Ray indicated either an infection or nodule in my left lung. After a course of antibiotics did not resolve my coughing I had a CT which indicated an "irregularly shaped mixed-density lesion measuring 26x11x15mm", as well as a nodule in the right lung that measured 11x11mm. The first concern of course was that it was metastases from the breast, so the first biopsy was taken from the larger tumor in the left lung which was stained to rule out BC, and diagnosed as NSCLC Adenocarcinoma.. My tumors present as "ground-glass opacities", a feature of which I am told means that there's a high probability of me developing more, so preservation of lung function is a priority. The smaller tumor in the right lung was also biopsied, and it's presumed to be identical in nature to that in the left. I've seen recent postings about biopsies not being done or even necessary when a lung tumor is smaller than 1cm, and I am not understanding that logic. As for the PET scan, I had one after the initial biopsy, and here you have it: Low-level FDG accumulation in the region of the previously biopsied irregular left upper lobe nodule (SUVmax 2.31) is less than the blood pool activity. No significant focal FDG accumulation is identified elsewhere in either lung. And here is the Impression: The irregular, biopsy-proven malignancy in the left upper lobe has low-level FDG accumulation. No FDG-avid adenopathy or FDG-avid extrathoracic metastases are identified, but given the relatively low FDG avidity of the primary lesion, this examination may be less sensitive for detection of metastatic disease. Additionally, the other known mixed density and ground glass lung nodules may not be well characterized by PET due to their morphology. Follow-up CT scans are recommended. PET scans are not infallible! Had biopsies not be done, my cancer might not have even been found. And do you know what was said to me at the first Lung Cancer Conference which took place after the PET? The good news is that you don't have cancer anywhere else in your body! Which is simply untrue as none of the docs can tell that from my PET. Undoubtedly other PET results are clearer than mine, but if I hadn't turned to Dr. Google, I would have been blissfully (and in my opinion, ignorantly) unaware. My treatment to date has been stereotactic radiation (Cyberknife) to each lung, which involved fiducial marker placement around each tumor, which was incredibly hard on both lungs. I don't know the grade or staging of my cancer because to completely remove the tumors would mean removal of those parts of the lungs, and the docs want to preserve my lungs' capacities. I understand the reasoning, but it feels like I'm in limbo, just waiting for the follow-up CT next month to see how the tumors responded to the radiation. My onco sent me to a thoracic oncologist at Duke who told me that the next step will be testing genetic testing of the biopsies; if they have any of the variants that can be targeted with less potent versions of the chemo or immunotherapies designed to treat Stage IV mets. Also, such testing could help us know if the tumor in the right spread from the left, or if they're both primaries. I'm pretty much done, thanks for those who've hung in with me here. I will close by writing that I've made the decision to not undergo any more radiation treatments, altho I will take chemo, etc. This may sound radical and crazy but I've been researching medical cannabis treatment of cancer, and I believe that it's a viable option for me, legality aside. Happy Fourth to all! .

Lexiecat I had a lobectomy by VATS on my upper left lobe. I had surgery on a Friday, most everything was unhooked on Saturday and the rest on Sunday. Monday morning I was released from hospital and took a 1 1/2 hour flight home Monday evening. It sounds like you have been doing your preparation and research. Rest when you need to and eat as much or as little as you like. It was not near as bad as I had expected but don't push it even if you do feel ok.

Thanks, Tom, and I'm happy that you're doing well. I didn't know about biomarker testing being a good idea for adenocarcinomas... once I got over the shock (more or less) of my diagnosis and started researching everything, I learned there were tumors with biomarkers that would respond to certain therapies. However, when I asked my onco (here in town, not the guy at Duke) about testing, his response what that insurance "won't pay for it unless it's Stage IV". What I meant about breast cancer being different was the level of support one receives, vs that of the lung. I'm sure it's true for all of us, that well-intended (I think) friends and such always ask if you've ever been a smoker. Smokers are social pariahs these days, and the first assumption folks make is that you've been one. I feel extremely sorry for those with those among us who've never smoked! Millions are poured into breast cancer research- my estimate is that maybe half goes into lung cancer. Shoot- we don't even have a color, right? Breast of course is pink, prostate is yellow, kidney is orange... but what about our poor lungs? Just an aside, but it further illustrates the difference between BC & LC. In mid-May I had my annual mammogram which was just after finishing the second round of cyberknife and right before my trip to Duke. Lo and behold, the radiologist saw something in my left breast near the lumpectomy area, and because it was unusual looking he deemed it necessary to have a biopsy done. To say I was stunned is an understatement- just the idea that anything could grown in what I call the Dead Zone (aka the nuked breast) floored me! But (and here's the point of all this) during the biopsy, in addition to the radiologist, there were 3 female nurses/MA's, and the role of one appeared to be that of moral support as she help my hand throughout the procedure. Afterwards I was given a cute little flat cold pack- pink of course- as well as a translucent pink bag containing a pink pen and pink sticky notes! Back to the lung- I was given nothing of the sort after either biopsies, and I can tell you that a biopsy of your breast is a piece of cake compared to one in your lung. Just saying. PS no surprises from the breast this time- just "fatty necroses". Lovely image.

Katiek, Welcome here. As you've indicated, a biopsy with a pathologist examination is the gold standard for lung cancer diagnosis. I do know folks who've had 1 cm tumor needle biopsied and of this population many more experienced unsuccessful results. A 1 cm tumor is a hard but not impossible target and I'm glad yours was successful. CyberKnife saved my life so I have very high confidence in this procedure. I also note that tumors in both lungs (Stage IV) are being treated and this is a new development in radio oncology. Just a short while ago, CyberKnife standard of care was restricted to one small tumor in one lung. One of our members -- Judy M. -- wrote a blog about here two tumor SBRT treatment here. Since this is a relatively new development in lung cancer treatment, you might consider writing a similar blog so that folks in the community can benefit from your experience. Biomarker testing for those with adenocarcinoma is always a good idea. A percentage of those with adenocarcinoma have tumors that respond to targeted therapy and this therapy can be potent treatment. I would suggest adding this to your research on the effectiveness of curative cancer treatment with cannabis. No doubt, cannabis is an effective means for dealing with late stage cancer pain relief, but I've not seen any literature on its effectiveness in treating metastatic cancer in medical journals. I truly hope your CyberKnife treatment was as effective as mine. Stay the course. Tom

LexieCat, My dressing change was every other day. A agree with the already suggested wedge pillow but if discharged with a chest tube, you may need an assortment of smaller pillows to make sitting on your furniture comfortable. Getting out of bed with a chest tube and healing incisions will be a challenge. Before surgery, I'd hoist myself up on my with hands and elbows, and rotate vertically out of bed. First time I tried that at home, I realized I needed a better solution. I had to move myself to the left side of the bed and roll out on my feet. It was a complicated maneuver especially with a chest tube. You should practice with a phantom chest tube that will likely be installed in the small of your back on the same side as the incisions. Also ask for a chest drain receptacle that you can drain yourself to avoid returning to the hospital and driving with a chest tube is near impossible. My experience was or should be considered worst case. I had three thoracic procedures in four months and each used the same entry location. Hopefully, you'll be one and done. Stay the course. Tom

Actually, there are some great caregiver resources here: https://www.lungevity.org/for-patients-caregivers/caregiver-resource-center

Thank you everyone..Because of the holiday I cant get CT until Wednesday. I will keep you all in my thoughts and keep you updated. When I get results I am going to start looking for a specialist. Hopes for good for everyone! Heather

Heather, So sorry you are dealing with all this mayhem in addition to the grief from your passed father. The test data shows, from my understanding, a nodule in each lung. Nothing is significant about their locations in different lungs but the fact that the nodules are in both lungs might (I say again might) be significant if the nodules turn out to be metastatic disease. If it were in your situation, I'd seek a consultation with a medical oncologist. Take your primary's radiology report to the oncology consult and let the oncologist dictate next steps. Stay connected with us because this is a good place to ask questions. Hopefully, your nodules turn out to be nothing of concern. Here is some data on lung nodules and why they form for your information. You'll note there are many reasons to explain them short of cancer. Stay the course. Tom

Hi Sarah, II was home with a chest tube too,after VATS.I also had an air leak. I had the tube about 10 days at home. I ended up in the ER on Thanksgiving day because the tube clogged and was leaking a lot of fluid into my dressing. It could have been dealt with in an office visit, but of course everything was closed for the holiday, so ithe ER it was. At that point the air leak was resolved enough to take out the tube. I was MUCH more comfortable with it out, no big surprise. So hang in there, it will get better soon. I'll be thinking of you and your tube. I recommend sleeping on a towel or chux pad in case of unexpected tube failure. Bridget

Carol, Welcome here. For encouragement, if I can live, so can your husband. My wife has a masters degree in nutrition and is an RN. She says for diet: reduce meat consumption because creatinine results from breaking down proteins. And a consultation with a Nephrologist is the right next step. Stay the course. Tom

Carol, Hi! I am also stage IV adenocarcinoma. I was on Alimta for about six months between my standard first line chemo and the immunotherapy I am on now. My creatinine levels were always normal on Alimta, but started fluctuating about a year after starting Nivolumab. What are his numbers? I took a treatment break at 1.8 and took prednisone for a short time to see if that would get it back under control. It has lowered a little and stabilized around 1.4, but they won't give me IV contrast with my scans unless it is <1.3 (?) I have a referral from my PCP to a nephrologist, but need to reschedule the appointment because I have a conflict. Make sure he dos drink the proper amount of water, don't use ibuprofen, get plenty of sleep, stay active and try eating things like: cauliflower, berries, cucumber, cherries, dried apricots and incorporate chamomile tea, cinnamon, lemon juice, cranberry juice and limit salt intake, dairy and other foods high in potassium and calcium. Maybe if I was more diligent about those things, mine would be lower too. I'll let you know if I get in to see a specialist soon. cindy

Thanks, Big Heart! I feel the prayers. And thanks, Vivian, for the good advice. It does seem like the more he drinks the higher his creatinine, and now the infusions of fluid are not doing very much to bring it down. We're being treated at a comprehensive cancer center, and our oncologist is very good about referring us to other docs. Will ask about endocrinologist and/or nephrologist. I'm concerned that too much fluid will deplete his system of vitamins and minerals he needs. And thanks for the prayers. Carol