RJN Posted May 19 Share Posted May 19 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 and BBTN 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted May 20 Share Posted May 20 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 Share Posted May 20 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 Author Share Posted May 20 @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 Share Posted May 20 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. LouT, Tom Galli and RJN 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted May 20 Share Posted May 20 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 Share Posted May 21 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 Share Posted May 21 Wishing you an easy surgery and quick recovery Rikke. Surgery and anesthesia aren’t that bad. pam Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted June 1 Share Posted June 1 Best of luck, Rikke. The outcomes sound exciting! Karen LouT, RJN and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
RJN Posted Friday at 02:32 PM Author Share Posted Friday at 02:32 PM 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… Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted Friday at 09:57 PM Share Posted Friday at 09:57 PM 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 Saturday at 07:11 AM Share Posted Saturday at 07:11 AM 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. LouT and RJN 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted Saturday at 12:04 PM Author Share Posted Saturday at 12:04 PM @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…. BridgetO, Tom Galli, LouT and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted Saturday at 02:51 PM Share Posted Saturday at 02:51 PM 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 Tom Galli, BridgetO and LouT 3 Quote Link to comment Share on other sites More sharing options...
Pstar Posted Monday at 06:00 PM Share Posted Monday at 06:00 PM 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 yesterday at 12:24 PM Author Share Posted yesterday at 12:24 PM 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…. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
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