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katiek

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  1. katiek

    Brain MRI

    Hi Bes. I understand your concerns about radiation as I share them, too. The professionals do say that the radiation exposure is very low with the MRI. Personally, any exposure concerns me. I have what are believed to be primary tumors in each lung, and underwent Cyberknife treatment to both this past spring and early summer. It will be February before we know if the tumors are gone. Others on this site may disagree with me, but if you are feeling rushed by the radiologist and want to first discuss the MRI with the oncologist, I believe that you should trust your instincts. I have been the caregiver, and now the patient, and I understand the challenges you face. I certainly can't give you advice, but I would suggest that if you and your husband have the opportunity to consult with a thoracic oncologist (not just a medical oncologist with a "special interest" in lung cancer), it might bring greater peace of mind. I know it has for me. Good luck, and I send blessings to you both. Katie Kremer
  2. Hi Judy! Our stories certainly are similar! I've not yet had the testing... I have a 3-month follow up CT August 8, and meet with the radiologist and onco the following day. On August 24 i'll see my thoracic onco at Duke, and I suppose the testing will be next. I'm curious- when you were diagnosed Stage IV, was it because of tumors in both lungs? When I met with Dr. Stinchcombe at Duke, he said that without testing it was impossible to determine if my cancer was Stage I (as I was told by the docs here) or Stage IV. Is the smaller tumor in my right lung a metastases from the larger in the left, or is it say, small-cell? In writing you now I realize that I need to demand the testing regardless of the CT results. I'm attaching the notes with drawing that my Duke onco made for me in case you're interested. On p2 he made a diagram of the alterations that can be treated with the targeted chemo, and one of them is PD-L which is treated with immunotherapy. I wonder why your tumors weren't sampled for it, too? You may recall me mentioning that my local onco basically poo-pooed the testing when I asked him about it in May. The only thing they know about the rt lung tumor is that it's also an adenocarcinoma, so they're (the local docs)assuming it's the same as in the left. I'm not very happy with them, and ever so thankful that I have the onco at Duke now. The biggest problem with him is that Duke is about a 4-5 hour drive from here. However, considering what many cancer patients have to go through travel-wise, I really have no reason to complain. I hope the chemo isn't taking too big a toll on you. As I mentioned before, I'm taking CBD oil daily, plus I've started on the RSO (Rick Simpson Oil), which is concentrated THC. I have to be careful with the latter- dosing is difficult as it's a viscous oil which I dab onto pieces of bread, hardly a precise delivery method. Still, I believe in it and will continue medical cannabis treatment, regardless of the results of my CT or the testing. Oh, to live in a state where medical cannabis is legal! And I'm someone who dismissed it as merely a way for potheads to indulge their habit legally... I had no idea, until the lung cancer diagnosis. Stinchcombe notes p1.pdf Stinchcombe notes p2.pdf
  3. Hi Judy- I've no idea about the radiation dose but I'll find out. Interesting that you were diagnosed Stage IV at the onset because of tumors in each lung, and obviously yours weren't removed, either. Dr Stinchcombe at Duke said there's no way to know about mine w/o biomarker testing, and everything I've read on this forum is readying me to insist that mine be done. Now. i may have used the wrong term for Cyberknife, believing it interchangeable with sbrt. I like the idea of no fiducials, my lungs can't handle their placement again. katie
  4. Yes, thank you Pearl.
  5. 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.
  6. 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! .
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