RJN Posted May 19, 2023 Share Posted May 19, 2023 Just an update: after far too many hoops, I am finally scheduled for surgery in early June - laparoscopic adrenalectomy (non-invasive removal of left adrenal gland). I opted for a private operation, which turned out to be relatively affordable here in the UK. Given my otherwise clear scans, this will make me effectively without any active cancer, so it is actually quite exciting. Amazing to have got to this point. Obviously, there are no guarantees that I won’t have a recurrence, but if I can even have a few months without evil growths inside my torso it will feel like a victory. I never had surgery, full anaesthetic or spent a night in a hospital so a bit scary, but actually quite excited to have the option. Wish me luck. X Tom Galli, BBTN and catlady91 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted May 20, 2023 Share Posted May 20, 2023 Rikkie, Best of luck indeed! Why a private procedure? Is your procedure not recognized by UK's national health service? Try and remember how far you get counting to 10 as they put you under.... Stay the course. Tom LouT 1 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted May 20, 2023 Share Posted May 20, 2023 Hi Rikke looks like you are headed in the right direction happy for you. Surgery isn't bad you can do this. NED soon woo hoo LouT 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted May 20, 2023 Author Share Posted May 20, 2023 @Tom Galli unfortunately the aftermath of COVID, Brexit and NHS strikes has resulted in rather long wait lists, even for urgent procedures, so as I am fortunate enough to have private insurance via work, I am able to do it quicker with a smallish Co-pay (with the same surgeon who would have done via the NHS to ensure the best communication). I have of course consulted with my oncologist team and got the green light. I will attempt the count…. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted May 20, 2023 Share Posted May 20, 2023 Okay, Rikke! It's good you have the resources to get your surgery sooner. Before my first cancer (I've had 3), I had never had surgery or a hospitalization except an eye surgery as a small child, and I was especially worried about the general anesthesia . It was no problem and now after 3 surgeries (one of them really big, with a week in the hospital), I'm much more relaxed about it. I looked at it as an adventure, maybe like a trip I would rather not take to a place that might have some dangers. But as long as I was going , I could maintain my curiosity and see what I could learn about the culture and customs of the natives. They do things differently there! I wish you all the best! Keep us posted. Tom Galli, LouT, RJN and 1 other 4 Quote Link to comment Share on other sites More sharing options...
LouT Posted May 20, 2023 Share Posted May 20, 2023 Rikke, Keeping all digits crossed for you and I look forward to positive updates. Lou Tom Galli and RJN 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted May 21, 2023 Share Posted May 21, 2023 Good to hear, best of luck for a straight forward surgery and an easy recovery! Keep us posted. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted May 21, 2023 Share Posted May 21, 2023 Wishing you an easy surgery and quick recovery Rikke. Surgery and anesthesia aren’t that bad. pam LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted June 1, 2023 Share Posted June 1, 2023 Best of luck, Rikke. The outcomes sound exciting! Karen LouT, Tom Galli, RJN and 1 other 4 Quote Link to comment Share on other sites More sharing options...
RJN Posted June 2, 2023 Author Share Posted June 2, 2023 Soooooo. It was too good to be true! My surgery has been postpone, as a blip was seen on my other adrenal gland in my latest scan. So I am now facing potential bilateral adrenalectomy and a lifetime of steroids. It’s a tough one to face when I was looking forward to a quick in-and-out and then possibly free if cancer (at least for a while). I am pretty gutted, but just gotta put one foot in front of the other… catlady91, LouT and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted June 2, 2023 Share Posted June 2, 2023 Oh sorry to hear this update. As long as they get everything out, that should be still a good outcome. Why are they postponing, for planning a more comprehensive surgery? LouT 1 Quote Link to comment Share on other sites More sharing options...
BridgetO Posted June 3, 2023 Share Posted June 3, 2023 Oh my! Damn that blip! I'm sorry for your disappointment. Cancer sometimes takes unpredictable turns and you sure got one here. Hang in there. RJN and LouT 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted June 3, 2023 Author Share Posted June 3, 2023 @LilyMir Taking out both adrenals is a much more extensive operation as it takes about twice as long, plus I will need to have my cortisol stabilised afterwards. And they want another PET as well. I also want to talk to the oncology team about potential other routes. I never had chemo, so wondering if that would be an alternative. It might be rough, but so is living with adrenal insufficiency for the rest of my life. Darn it…. LilyMir, LouT, catlady91 and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted June 3, 2023 Share Posted June 3, 2023 Oh, h3ll. What a disappointment; what a stupid development; what a bunch of new complexities to muddle through. I’m so sorry, Rikke. It sounds like you are thinking clearly about options despite the upset. I hope the way becomes clear for you. Karen BridgetO, LouT and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Pstar Posted June 5, 2023 Share Posted June 5, 2023 So sorry to hear this Rikke. The PET scan sounds like a good route to go as “the little blip” should clearly be definitive. I guess if there is a bright side to this, they didn’t go in to remove the one adrenal gland when they may have to remove both. Also discussing chemo could be another option. Everyone is different but my chemo was fairly easy with no side effects. I know you have had radiation but could that be another option to repeat? Wishing you a good outcome to this development and keep us posted. Pam Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted June 6, 2023 Author Share Posted June 6, 2023 Thanks Pam, had a chat to my clinical (radio) oncologist yesterday and I did raise the possibility of further radiotherapy. He said that 1. They couldn’t repeat SABR to the same gland. And 2. Radiating the other one would do as much damage as removing it, with a less certain outcome. So basically radiotherapy is out. Meeting with the medical oncologist Monday, so will discuss the chemo route with them then. But judging from the clinical oncologist reaction yesterday, I think they will be likely to recommend surgery as it has the best prognosis. But of course crossing my fingers that the blip isn’t showing any activity (unlikely but one lives in hope)… Very annoyed at the whole thing, but cutting back my jungle-like backyard yesterday turned out to be good therapy and removed most of my anxiety…. LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted June 7, 2023 Share Posted June 7, 2023 There is always hope and I am praying that the PET shows no avidity. Glad you got some of your anxiety relieved with your backyard. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Scruboak Posted June 8, 2023 Share Posted June 8, 2023 Well, da_. Just when you things figured out. Good luck with the final decision🥰 LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted June 13, 2023 Author Share Posted June 13, 2023 My bilateral adrenalectomy is now scheduled for 6 July. Still laparoscopic, but it’ll be a bigger surgery than the original, and I will have to live with steroids for life. But both the surgical and the oncology teams were in agreement that this was the way forward, and would give me the best chance of a full remission. Heading back to Denmark for a week to see family - who knows when I will be able to travel again. And bought an aircon, so I can recover in some comfort (London is getting hotter each year). So getting ready! catlady91, LouT and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted June 13, 2023 Share Posted June 13, 2023 I'm sorry to hear about your setbacks Rikke but it seems now that things are back on track and look positive. I'm keeping my fingers crossed for you and hopefully the surgery will lead to long term remission. Will you have chemo after the surgery? LouT 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted June 13, 2023 Share Posted June 13, 2023 I don’t envy you the steroids part, but full remission— what lovely words! It’s a trade off I’d make in a heartbeat. I’m glad you’re going to see family, too. Sounds like you are prepared in all the ways you can be. Have you any idea of what the recovery period will be like? Karen LouT and catlady91 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted June 13, 2023 Share Posted June 13, 2023 Will be praying for your surgery and a speedy recovery. Enjoy your visit with family. Pam LouT 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted June 14, 2023 Author Share Posted June 14, 2023 Thank you lovely people. I expect to have a recovery period of 2-6 weeks. I.e. 2 weeks of being very slow, and 6 weeks till I can do normal stuff such as run and play golf. I can deal with the physical stuff - just worried about the mental side. I am a steady-eddie, but a lot of depression in my family, so its a real worry. Not sure how I would cope with mental health issues on top of everything else. But guess I’ll know in a few weeks’ time… LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted June 15, 2023 Share Posted June 15, 2023 We’ve had the “aircon” on since May. I can’t imagine being in a hot house after surgery. Hang in there. Stay connected and air out your feelings. You’ll get through this. Stay the course. Tom RJN and LouT 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted June 15, 2023 Share Posted June 15, 2023 Great planning RJN, from a Scandinavian pre-surgery vacation to buying an AC! Fingers crossed you update us soon that all went well, good luck!! Tom Galli, RJN and LouT 3 Quote Link to comment Share on other sites More sharing options...
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