Deb W Posted August 28, 2019 Share Posted August 28, 2019 Oh my goodness, you are all such brave souls! I'm having my first post op MRI of my spine tomorrow and hoping for good results. I have Xanax and eye mask to get me through....40 minutes...yikes! Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 28, 2019 Share Posted August 28, 2019 Yep. It stinks. As you’re going through the scan your spine will start to feel really warm, it’s normal. Ask ahead of time if you can pick your music. Dress super comfy, fashion definitely takes a back seat. You’ve got this Deb! Link to comment Share on other sites More sharing options...
Roz Posted August 29, 2019 Share Posted August 29, 2019 Good luck with your MRI... They usually let you pick out music. Also, trying to focus your thinking on a favorite place or activity really helps..I always imagine that I'm on the beach and think about the waves, etc.. Best, Ro Link to comment Share on other sites More sharing options...
Susanrae Posted August 29, 2019 Share Posted August 29, 2019 MRIs are the pits, but you can do it. I try and think, "OK, this is just 40 minutes out of my entire day, I can do it." Take care now, Susan Rae Link to comment Share on other sites More sharing options...
Susan Cornett Posted August 29, 2019 Share Posted August 29, 2019 Hi Deb. Hope your scan went well. When will you get results? Link to comment Share on other sites More sharing options...
Deb W Posted August 29, 2019 Author Share Posted August 29, 2019 So after 1 hour of being in the MRI I went home and a couple of hours later my oncologist called to let me know that T-8 & T9 showed enhancement. I had to go back because they needed another view because they can't rule out metastases. They wouldn't be able to biopsy it because it was too small. He also said it could be a disc issue and possible be benign. He did also say that if I didn't have a history of lung cancer they wouldn't be concerned. I will see him today. He ordered a repeat PET scan to compare it to the one I had in February. I still plan on having a tennis match on Sunday! Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 29, 2019 Share Posted August 29, 2019 Game on!!!! Link to comment Share on other sites More sharing options...
Tom Galli Posted August 29, 2019 Share Posted August 29, 2019 Deb, Put the ball in play then rally for the point! I was once bothered by how imprecise diagnostics could be. After all, this wonderful technology is touted as being accurate and precise. But, I forgot the technology is enjoined with human anatomy that is anything but accurate and precise. You've just experienced the result. Lung cancer diagnostics is a process, an imprecise process fraught with unknown unknowns and lathered with uncertainty. You already know about scanziety. Indeed I am starting to feel the symptoms given my September CT. So.... Stay the course. Tom Link to comment Share on other sites More sharing options...
Deb W Posted August 29, 2019 Author Share Posted August 29, 2019 I can't even begin to describe my frustration. Yesterday I went back for the 2nd MRI because I was told they needed more views. Today was the appointment with the Oncologist and we were going to discuss whether or not I'd need the PET. He showed me the MRI pics but said he didn't have the results of the 2nd one. This was the whole point of the appointment because the new views might indicate that I wouldn't need the PET), but of course I didn't think of that while I was in his office. Recall that yesterday the Oncologist called me a couple of hours after the MRI. I went back 1 hour later for the additional MRI and yet today, he still doesn't have the result. I cancelled 4 of my clients today so I could see the Oncologist and learned nothing new except that they're going ahead with a PET scan scheduled for September 6 (and he hadn't even seen the new scans). I went to the portal and noticed that these results had not been released so I sent him a message and his nurse replied: I copied this from doctor's note of todays visit. Let me know if you need further information Plan: 1. Oncology: Case reviewed with Radiology. Given anticipated low yield of biopsy in light of factors outlined, current plan/recommendation is to proceed with repeat PET/CT. If hypermetabolic lesions are identified, will pursue tissue confirmation based on the PET findings in area considered to be highest yield So frustrated.... Link to comment Share on other sites More sharing options...
Roz Posted August 29, 2019 Share Posted August 29, 2019 Deb, I would be frustrated too! I'm so sorry for all you are dealing with!! Ro Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 29, 2019 Share Posted August 29, 2019 Oh that’s cause for a SCREAM! 😱 So sorry you’re having to go through all of this. So much for the technology, we’re still in the dark ages. Link to comment Share on other sites More sharing options...
Tom Galli Posted August 30, 2019 Share Posted August 30, 2019 Deb, Understand, frustration is part of the drill. Reviewing the information on the doctor's note suggests a sound approach to identifying mets, if indeed there are mets. Stay the course. Tom Link to comment Share on other sites More sharing options...
Deb W Posted September 1, 2019 Author Share Posted September 1, 2019 Well, the MRI results were released and there is a possibility of metastasis. I will have the PET/CT on Friday. I'm becoming an expert at managing anxiety....it's called denial! No, seriously I am staying as busy as possible and I will do the tennis match today - when I'm on the court, it's the only time I am relieved of anxiety. Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 1, 2019 Share Posted September 1, 2019 Deb- out curiosity when you had the surgery did the facility do biomarker studies? We’re all be here for you as you go through the PET scan. For now I’m hanging my hope on the word “possible”. One of my teammates had something light up on the PET during his radiation, after a new biopsy it was a false alarm. Competitive athletes are prone to inflammation that can make these scans a serious roller coaster. Hope you killed it on the courts today! Link to comment Share on other sites More sharing options...
Road bum Posted September 1, 2019 Share Posted September 1, 2019 We will all hang our hat on some good results from the PET. Can’t ever let it get you down and sometimes that isn’t easy. Hope youhad a great day on the court. Ron Link to comment Share on other sites More sharing options...
Deb W Posted September 1, 2019 Author Share Posted September 1, 2019 Thanks everyone... we lost 6-3, 6-3... all deuce games so it was a very competitive match and just what I needed. It's different for me now on the court. I have such an appreciation of what I'm able to do physically and recognize that ability could go away. So, I'm very much in the present moment and so very thankful that I can play. I get winded sometimes because it's mixed doubles, but I wear my lung force bracelet and in my head I keep repeating to myself....you're a warrior! Oh my goodness, Michelle. I had no idea that athletes were prone to inflammation - thank you so much for sharing that. I don't know if biomarkers were done. I'm wondering if you could point me in the right direction to read about them. Would I find that in the pathology report? Back in March after the surgery I was just told I had adenocarcinoma, Stage 1B, no chemo or radiation. There is a bit more that adds to my anxiety. I have a significant family history of cancer... 1 sister (lung), 2 brothers(1 lung and 1 prostate) and me. I also have two sisters that have never had cancer. Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 1, 2019 Share Posted September 1, 2019 Yep. Competitive athletes have significant inflammation. I have excellent lung capacity now on targeted therapy however my onc says no no no to regattas of any kind (even the local easy peasy ones). Any inflammation could mess with the scans. I would call your doctor on Tuesday and ask if comprehensive bio marker (aka molecular testing or next generation sequencing) was done at the time of the surgery. There are many different sub types of adenocarcinoma, like me for example I have ALK Positive NSCLC. In my opinion it’s not worth asking to see the pathology report, too many potential rabbit holes for Dr Google. You want to know if you have a “common” biomarker for EGFR, ALK, Ros1 or PDL-1 % Theres a number of other biomarkers too that are primarily used to determine how to match the treatment plan to an individual. There’s more info on the Lungevity main site. You can also look at the GO2Foundation.org site. They did a webinar on biomarkers last week that is posted on YouTube. Its important information as garden variety adenocarcinoma is just too broad a category given all the recent scientific advances. If it wasn’t done, then push for it. Link to comment Share on other sites More sharing options...
Isabelle49 Posted September 2, 2019 Share Posted September 2, 2019 Deb, prayers for you and a good outcome. Blessings. Link to comment Share on other sites More sharing options...
LouT Posted September 3, 2019 Share Posted September 3, 2019 Deb, I’ve been following this thread and just wanted to let you know that everyone is with you and I’ll be praying for a good outcome on the results. Lou Link to comment Share on other sites More sharing options...
Roz Posted September 5, 2019 Share Posted September 5, 2019 Deb, I'm also sending you strength and positive thoughts!! Best, Ro Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 6, 2019 Share Posted September 6, 2019 Lock and load Deb! Treat yourself this afternoon & the weekend. Link to comment Share on other sites More sharing options...
Moonbeam Posted September 8, 2019 Share Posted September 8, 2019 Deb - I've been following your post and sending you so much love. My husband just had a recurrence (July) and it also went to the spine..L5 and into the nerve. (we knew it was something bc he was in excruciating pain) His treatment plan called for 5 rounds of radiation to that area and then a procedure called Kyphoplasty. He finished and had both and he is doing amazing! Please keep us all posted and know that I'm praying for a good outcome. XX Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 8, 2019 Share Posted September 8, 2019 Moonbeam That’s an AMAZING update. So happy for you all! Link to comment Share on other sites More sharing options...
Moonbeam Posted September 8, 2019 Share Posted September 8, 2019 Thank you, Michelle. He started chemo/immunotherapy Aug 7. Changed oncologists “thank goodness” and now he’s on the normal weekly schedule. Carbo/abraxane/ keytruda first round...he actually did that twice because of “schedule problem”! 🤦🏼♀️ It wasn’t. Lol regardless and moving forward, just abraxane last week. Will have again this week and then the following “scans” to see how he’s responding 🙏🏻 We’ve had a few bumps in the last 2 weeks, but I’ll write a new post on that 😬😊 hope you are well!!! xx Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 8, 2019 Share Posted September 8, 2019 I read somewhere along the way it’s a matter of when you change oncologists not if. Glad to hear you’ve got a new one. Hopefully this staff has their act together, if not, well then you’re the bomb so they should heed warning! All is well here. Gearing up for our 25th wedding anniversary trip to San Juan Island WA. Link to comment Share on other sites More sharing options...
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