catlady91 Posted February 5, 2021 Share Posted February 5, 2021 My mum had a PET scan and it showed that the cancer has returned. We're both gutter especially as in November she was declared NED. The cancer is only in her lung and the consolation is that it's fairly small and it hasn't spread. We're so gutted especially as everything looked so positive and so good. The consultant seemed positive that there wouldn't be anything there. I really hoped that the immunotherapy would help but it obviously didn't. I'm scared that they won't be able to treat my mum and that nothing else will work. I'm absolutely gutted. Link to comment Share on other sites More sharing options...
catlady91 Posted February 5, 2021 Author Share Posted February 5, 2021 Also do you still do your online zoom meetings every Friday? Link to comment Share on other sites More sharing options...
TJM Posted February 5, 2021 Share Posted February 5, 2021 So sorry. I am just now "settling" into the wait and scan mode. Currently NED (we think) with a scan in March. I think we all know that reoccurrence is common but we hope it doesn't happen to us. After reading many posts of both long term scanziety veterans and stories like your mother's I have decided to be pessimistic. I am gearing myself up to expect it on my next scan. That way I am not disappointed. Can I fool myself like this? I'll find out. I can imagine how hard it is to get news like this. Gutted seems like a perfect word to describe it. But, the reoccurrence is not the end. There are so many second (and third) line treatments for so many types of cancer (you know this) that there is still plenty of hope left. I think battling this vile disease has two distinct fronts. First, aggressive treatment to get to a permanent NED state and the second is delay delay delay until new treatment options become available. I know your gutted, but keep some faith. Peace Tom Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted February 5, 2021 Share Posted February 5, 2021 1 hour ago, catlady91 said: Also do you still do your online zoom meetings every Friday? We do still have our meetings. Here is where to sign up if you haven't already: https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and Link to comment Share on other sites More sharing options...
GaryG Posted February 5, 2021 Share Posted February 5, 2021 Sorry to read that your Mom's cancer returned. We often say cancer has returned when in fact it never left because it was difficult to detect. I often wonder if oncologists jump the gun by going into maintenance mode too soon. Let's instead be happy with the positives as you described "The cancer is only in her lung and the consolation is that it's fairly small and it hasn't spread"." So let's work on defeating the cancer once more because recurrences are the norm with lung cancer . It will be interesting to know what the oncologist recommends going forward so please make sure to let us know. You and your Mom are in my prayers and I wish you luck. Link to comment Share on other sites More sharing options...
catlady91 Posted February 5, 2021 Author Share Posted February 5, 2021 18 minutes ago, LUNGevityKristin said: We do still have our meetings. Here is where to sign up if you haven't already: https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and What is it in UK time? I know the US also has different time zones as well. Link to comment Share on other sites More sharing options...
Tom Galli Posted February 5, 2021 Share Posted February 5, 2021 Catlady, Tom & Gary gave you sound counsel. Unfortunately, lung cancer is rarely one and done. Help your mom don her battle gear, lock and load and proceed aggressively towards next treatment. Stay the course. Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted February 5, 2021 Share Posted February 5, 2021 Catlady, Add 5 hours to our start time in the US to determine UK time. Here is a conversion table: US Start Time (Eastern Standard Time) UK Time GMT Monday: 12:00 noon (EST) Monday: 1700 hours Wednesday 12:00 noon (EST) Wednesday: 1700 hours Friday 1:30 PM (EST) Friday: 1830 hours Friday 6:30 PM (EST) Friday: 2330 hours Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted February 5, 2021 Share Posted February 5, 2021 Sorry to hear the cancer is still around--we all hope to banish it forever, but the reality is that it often is stubborn and persistent. I always say the trick to surviving lung cancer is to stay alive long enough to benefit from the next big discoveries. We have to keep outsmarting it. Your mom could be around for a LONG time to come. Right now, you have no reason to be sure that won't happen. Hang in there. Link to comment Share on other sites More sharing options...
catlady91 Posted February 5, 2021 Author Share Posted February 5, 2021 Thank you everybody for your replies. It's been a big shock to the system. I really thought that mum would be NED especially as the doctors seemed so positive that the scan would be ok. The only consolation is that the recurrence is local and fairly small. I'm gutted that the immunotherapy didn't seem to work . If one immunotherapy doesn't work, do they sometimes try different ones? Also my mum doesn't have any mutations as she has squamous cell and her biopsy last year didn't show any mutations. Does lack of mutations make cancer harder to treat? Link to comment Share on other sites More sharing options...
LexieCat Posted February 5, 2021 Share Posted February 5, 2021 Just because every trace of the cancer wasn't eliminated doesn't mean the immunotherapy "didn't work." It DID work--it brought the cancer to then-undetectable levels. Maybe she will have to be on long-term therapy. My oncologist is thrilled with my response to the chemo/immunotherapy triplet I was on, but I'm now on "maintenance" therapy of one chemo and one immunotherapy drug, and the plan is I'll remain on those indefinitely, as long as they are doing their job and are tolerable. Do I wish I could be DONE with therapy and pretend I never had lung cancer? Yup, but that doesn't seem to be in the cards. Gotta live with it. Oh, and I have no actionable mutations, either. I wouldn't say it makes cancer any "harder" to treat, it just eliminates one category of treatment that is available to some patients. There are lots of courses of treatment I'm not eligible for, but it doesn't matter at all as long as the one I'm on is working. Link to comment Share on other sites More sharing options...
catlady91 Posted February 5, 2021 Author Share Posted February 5, 2021 Thanks LexieCat. I'm glad that your treatment is working. I'm just worried for my mum. I'm worried that if she has chemo it won't be enough to keep the cancer at bay. I don't know if they'll want my mum to keep on with the immunotherapy or not. I'm scared that chemo won't be enough to help my mum. Chemo is pretty rubbish. Mum can't have any more radiation as there's too much risk of damage to healthy cells. Link to comment Share on other sites More sharing options...
catlady91 Posted February 5, 2021 Author Share Posted February 5, 2021 Also as far as I know, theres been no talks to operate as I think that the cancer is in a tricky spot. Link to comment Share on other sites More sharing options...
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