Kate7617 Posted September 25, 2019 Share Posted September 25, 2019 Got the results of my CT scan, I was told it was "good", Well I am feeling better so I will go with that. I am having an emotional "breakdown" sort of speak. I want to know more, yet maybe there is no more to know. Does anyone out there have the same problem? Coming from seeing the Dr and not knowing where you are at? Thanks Link to comment Share on other sites More sharing options...
Sillycat1957 Posted September 26, 2019 Share Posted September 26, 2019 Hi Kate I was told a good scan was a good thing 😁 Also I have breakdowns on a regular basis, more so since I have been on Durva, seems to be a side effect, that's my opinion anyway. I had a treatment break, and the waterworks and squirrelly anxious feeling kind of calmed down a bit yay! Had my treatment 3rd Monday starting to get weepy again? seems like my side effects kick in on the 3rd day. I've yet to have a CT scan since starting immunotherapy. But I do so understand the scanxiety! Do you get a copy of the report? And didn't you say you were seeing a nurse (I saw that in an earlier post,) because your Dr was not going to be there, maybe you can call and make an appt to see your Dr to speak to him/her to get more of a better answer (to ease your mind) than "Good" explain you need encouragement, I usually speak to the nurses where I get my infusions when I am feeling anxious and it helps, I also see a therapist, Cancer sucks! Take care, Roseann Link to comment Share on other sites More sharing options...
Tom Galli Posted September 26, 2019 Share Posted September 26, 2019 Kate, I second the motion--a good scan is a good thing! Indeed it is a great thing. I completely understand your frustration about knowing more. Uncertainty of lung cancer is unnerving. I certainly have that problem and still get worked up about scans and results every year. Just endured my Scanziety moment in early September but I still have those moments and the uncertainty after sixteen years! So..... Stay the course. Tom Link to comment Share on other sites More sharing options...
PaulaC Posted September 26, 2019 Share Posted September 26, 2019 20 hours ago, Kate7617 said: Got the results of my CT scan, I was told it was "good", Well I am feeling better so I will go with that. I am having an emotional "breakdown" sort of speak. I want to know more, yet maybe there is no more to know. Does anyone out there have the same problem? Coming from seeing the Dr and not knowing where you are at? Thanks I feel like that every time I leave his office. I think it’s because he never says all clear. I have areas that show up and he says not to worry that’s his job. Link to comment Share on other sites More sharing options...
Kate7617 Posted September 28, 2019 Author Share Posted September 28, 2019 Thank you to everyone that responded, I truly appreciate it. I did forget to mention that after my Dr said my CT scan was good, she also said that there is ground glass and it is inconclusive and she will be sending me for a PET scan in a few months. Gee whiz, thanks for such uplifting news, it's good, but? Hmm I'm thinking of changing oncologist, she doesn't encourage me. Hmm, anyone out there know of a great oncologist in the Suffolk County NY area? I would be very happy to hear. Thanks Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 28, 2019 Share Posted September 28, 2019 Hi Kate- Great news on the scan! We all know how nerve wracking the scan process is. Horrible. Some time in the future there will be a blood test for monitoring. You’re out on the Island so Memorial Sloan Kettering is a schelp for you. You might reach out to the Lungevity HelpLine or the GO2 Foundation to ask about locating an oncologist to meet your needs. A word of caution- oncologists can be a different breed. Unlike orthopedists who all seem to have the personality of a golden retriever, oncs at least in my neck of the woods aren’t warm & fuzzy. More like mad scientists. You also want to have a feel for the nursing staff too- the doc might be wonderful but sometimes the nurses are witchy. Most of my interactions are with my nurse or pharmacist Tom Brokaw famously said you don’t have to like your doctor, find the smartest one instead. Once I understood this, the likability factor went out the window. For me, I stayed with the brilliant science doc, fabulous nurse combo. I have two Integrative Medicine Doctors to cheer me on and serve as a balance to the onc. Paula gave great advice, let the doctor handle the worry! Keep us posted! Michelle Link to comment Share on other sites More sharing options...
Kate7617 Posted September 29, 2019 Author Share Posted September 29, 2019 On 9/28/2019 at 9:27 AM, Rower Michelle said: woHi Kate- Great news on the scan! We all know how nerve wracking the scan process is. Horrible. Some time in the future there will be a blood test for monitoring. You’re out on the Island so Memorial Sloan Kettering is a schelp for you. You might reach out to the Lungevity HelpLine or the GO2 Foundation to ask about locating an oncologist to meet your needs. A word of caution- oncologists can be a different breed. Unlike orthopedists who all seem to have the personality of a golden retriever, oncs at least in my neck of the woods aren’t warm & fuzzy. More like mad scientists. You also want to have a feel for the nursing staff too- the doc might be wonderful but sometimes the nurses are witchy. Most of my interactions are with my nurse or pharmacist Tom Brokaw famously said you don’t have to like your doctor, find the smartest one instead. Once I understood this, the likability factor went out the window. For me, I stayed with the brilliant science doc, fabulous nurse combo. I have two Integrative Medicine Doctors to cheer me on and serve as a balance to the onc. Paula gave great advice, let the doctor handle the worry! Keep us posted! Michelle Thank you Michelle, I can truly relate. one thing that I have a problem about is my oncs staff. in the portal. There is this guy that is so disrespectful I felt the need to report him, so if that isn't bad enough the Dr sides with him, and she takes his side in the whole unsettling matter, and when I ask her a question she got all huffy and puffy and walked out on my appointment. My husband and I couldn't believe what took place. Patient Rep asked if I would give her a second chance, ( I am in the (let's say) 7th inning of this ball game) CRT, now durvulamab, Crazy, to say the least. So hence I need a new Dr. Quickly. Link to comment Share on other sites More sharing options...
Curt Posted September 30, 2019 Share Posted September 30, 2019 MSK has two Long Island locations. Stony Brook also has a lung cancer center. Link to comment Share on other sites More sharing options...
Kate7617 Posted September 30, 2019 Author Share Posted September 30, 2019 Thanks Curt, I appreciate you responding, I am looking into alternatives, scary to say the least at this time in treatment. Link to comment Share on other sites More sharing options...
Curt Posted October 1, 2019 Share Posted October 1, 2019 @Kate7617 where are you being treated now? Link to comment Share on other sites More sharing options...
Kate7617 Posted October 1, 2019 Author Share Posted October 1, 2019 Curt Thank you, MSK Commack NY Link to comment Share on other sites More sharing options...
Curt Posted October 1, 2019 Share Posted October 1, 2019 That’s where I go as well. Stony Brook also has a really nice, well respected Cancer Center if you are looking for an alternative. They just opened another location in Southampton and their main campus in Stony Brook. Link to comment Share on other sites More sharing options...
Kate7617 Posted October 3, 2019 Author Share Posted October 3, 2019 Curt I certainly appreciate you letting me know this. I have had 5 durvalumab therapies, unfortunately I have very bad side effects from it. I have scarring on my lungs with inflammation on the CT scan, I was finally able to get that treated as of yesterday, ( the squeaky wheel gets the oil ) terrible that this is Dr patient relationship. I had to put the immunotherapy on hold so that will give me a chance to heal. And I have other reoccurring infections. ( one size does not fit all) I did ask my Dr if there is an alternative to durvalumab, and her response was "not in this setting" I still don't understand that one. I would like to leave my appointment with the knowledge of my health, I just shake my head. Also it is hard to change horses in the middle of the race, sort of speak. Thanks Link to comment Share on other sites More sharing options...
Curt Posted October 3, 2019 Share Posted October 3, 2019 Getting all the answers from your doctors is thought. Sometimes it feels like they don’t have the answers. I think I’d rather then say that then wing it. Good luck with your treatments. Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 3, 2019 Share Posted October 3, 2019 Hi Kate, I do understand your frustration-it’s so hard when not feeling 100%. Don’t settle. I wouldn’t think of the situation as changing course mid stream, the treatment plan is not likely to change at this point. Working with the patient advocate is probably the best solution where you can articulate what best meets your needs. Seems like might be in the right facility but the doc doesn’t float the boat. Chances are you are not alone and the patient advocate has probably addressed similar situations. I hope you feel better soon! Michelle Link to comment Share on other sites More sharing options...
Laurel Posted October 4, 2019 Share Posted October 4, 2019 A patient advocate helped me at M D Anderson. Link to comment Share on other sites More sharing options...
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