RJN Posted April 28 Share Posted April 28 Hello all, After about a year of stable disease, it appeared that my adrenal metastasis had grown from 11mm to 16mm. So I had my PET scan results today. The bad news is that there is metabolic activity, so I am being referred to surgery for an adrenalectomy. The good news is that there is no other signs of disease. My main tumour and lymph nodes show no activity, so whatever is left is dead tumour tissue. This is obviously a relief. From what I can gather, the prognosis for removal of an isolated adrenal met is very positive in terms of long term survival. Two questions: has anyone here had an adrenalectomy? And they said that adrenal SUV was 5.5, compared to 11.6 when I was first diagnosed. I assume this means that the met has low activity and not very aggressive - is that correct? Thanks as always for any advice! Rikke Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted April 28 Share Posted April 28 Rikke, First of all I am so glad about hearing words like "dead tumor", and "no other growth". I can't really speak on the Adrenalectomy though so I'll let others speak to it. Yes a lower SUV is always better, but remember that value is speaking to the amount of uptake of the tissue. I don't believe it provides an accurate profile of the cells themselves. You can find more information on the PET Scan here. I look forward to your updates and you're always in my prayers and thoughts. Lou RJN 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted April 28 Share Posted April 28 I’m sorry to hear that there was growth and avidity to the adrenal mass rikke, but that is positive news that they can remove it and that there is no other sign of disease. I had growth and avidity in my right adrenal gland. I had 3 sessions of SBRT and will have my CT scan on May 10th to see how effective it was. Fingers crossed for us both! pam LouT, RJN and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted April 28 Share Posted April 28 Rikke, I had to endure many "good news bad news" scans in my treatment history. I note, sadly, you are experiencing this disconcerting problem. Standard uptake values are strange. Above 4.0 normally points to metastatic activity, and in your case, the reduction from 11.6 to 5.5 means less uptake, but I'm not sure less uptake above 4.0 is a good thing. There is still metastatic activity. The good news is your medical team recognizes the threat and it will be removed. Stay the course. Tom RJN and LouT 2 Quote Link to comment Share on other sites More sharing options...
RJN Posted April 28 Author Share Posted April 28 Thanks, Pam, Tom and Lou. Yes, I recognise that any metabolic activity is bad, but I’ll take any slight positives, and not having active cancer in my lung and lymph nodes (all of which were quite sizeable) feels like I have come a long, long way from where I was 18 months ago. Now I just cross my fingers that the surgeons will agree that they need to whip this adrenal thing out. Because I already had radiotherapy to the adrenal they won’t do it again. I never had surgery ever in my life, and never even spent a night in a hospital, so it is a bit frightening, but even if it temporary, it would be marvellous to get to no detectable cancer. Pam - fingers crossed for your scan! LouT, Pstar and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted April 29 Share Posted April 29 Sorry to hear @RJN but glad it is localized and can be resected. I agree with Tom that the SUV values seem not that accurate in predicting aggressiveness though lower is always better in some sense (my only node that was positive showed very faint under 3 on PET but it turned out that 90% of that node was aggressive cancer, on the other hand my main tumour was 27)! I had a lobectomy, which is probably much harder than your surgery (I am only guessing). It was such a scary time but it passed. The hospital sucked but focus on the fact that you are lucky to be able to get rid of that cancer and thus the surgery may be something to celebrate. Good luck! Tom Galli, LouT and RJN 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted May 2 Share Posted May 2 @RJN Well, that good news is really good. Surgery seems to bring clear results, so that’s good too. But, ugh. Will you have to take medication after the removal of the gland? K LouT 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted May 2 Author Share Posted May 2 Thanks Karen, yes - getting to a point where surgery is even recommended is actually great news. When I was first diagnosed, the medical team didn’t think there was any point since the cancer had spread to my lymph nodes. So yay to that! I am still awaiting an appointment with the surgeon, so don’t know anything yet. From what I can gather, I shouldn’t need medication, at least in the medium/long term, although some cortisol might be required while the other adrenal gland learns to do the job. Tom Galli, LouT, BBTN and 2 others 5 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted May 8 Share Posted May 8 I'm sorry to hear about your setback Rikke but it does seem that there are some positives. I'm glad that you're able to have surgery; hopefully it will do the trick. I hope that all goes well. Please keep us updated. LouT, JHP and RJN 3 Quote Link to comment Share on other sites More sharing options...
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