PET Results

[1711JPD]

After 2 PET scans showing no evidence of disease, the one I has last Thursday shows an uptake in one liver lesion. It grew from 0.8 cm to1.4 cm. I'm going to be having a biopsy of the lesion to see if the marker has changed form positive to negative, and MRI of my liver, and possibly Radio Frequency Ablation of that lesion.

Can anyone share their experiences of RF Ablation?

I have been taking Ibrance 125 and Faslodex injections for last 18 months. Assuming marker hasn't changed, I'll be switching to Exemestane and Afinator. Can anyone share their experiences with these drugs? I hope Medicare covers them.

Best wishes to all, and thanks for your help.

Joyce

[MyMiracle13]

SorryI have no experience on RF ablation but I also have liver Mets. I hope you don’t mind my asking this question. If there was already an existing .8cm liver lesion that grew to 1.4cm, how could the previous PET scan say NED?

[1711JPD in reply to MyMiracle13]

I don't mind at all! I didn't ask you specific question (was kinda freaked out) but my understanding (and if I am incorrect I hope someone here will correct me) is that the NED refers to no uptake of the sugar(?) used in the PET scan. I'm sure it is more complicated than that, but from a lay person, that's the best I can do. I wish you the best. 😋

[MyMiracle13 in reply to 1711JPD]

Thanks for replying. I wish you the best too and hope you get back to NED.

[8576]

Hi Joyce: I have no experience with AF Ablation. Or PET scans for that matter. At least they may be called something else in this country. (Canada) I just wanted to say, it is a slight increase and doesn't really warrant a change in meds yet. Why not stay on it for awhile longer. Just my feeling. Doesn't call for a biopsy either. But each his own. Why not get a second opinion if possible.

Cheers, June S.

[1711JPD in reply to 8576]

Thanks for your reply. I'll be staying on present meds for another month. Will be having MRI first. The reason for the biopsy is to see if the tumor marker has changed from positive to negative (slight chance) which would impact which new medication to use. Right now the plan is to switch to Exemestane and Afinitor.

[8576 in reply to 1711JPD]

Don't be surprised if it changes the markers. It changed for me from positive to negative so it can happen. Threw the Oncologist for a loop but I went for a second opinion and she gave me a different perspective on it.Anyway, good luck on your new meds. Hope you getC a good long run on them.

Cheers, June S.

[1711JPD in reply to 8576]

I read more than post here, but I want to thank you for all you do for the amazing women on this board. You are a blessing.

[Iwouldlike2knowmore]

I had liver ablation and i was sore for a while , But it came back to my liver. Helena

[1711JPD in reply to Iwouldlike2knowmore]

Thank you for your reply. I am sorry your's returned. I told my one that this is like a big game of Whack A Mole. Best wishes.

[jersey-jazz in reply to 1711JPD]

Whack A Mole has been played with the lesions on the liver three times. So far,I am winning.

[1711JPD in reply to jersey-jazz]

Yay! You are my hero!!

[LadyC-Mtl]

Hi Joyce,I'm so sorry for what you are going through.

Just to clarify, NED means No Evidence of Disease, in other words there's no cancer showing in the findings following an exam. So from what I gather, your previously small liver lesion went from being benign to malignant.

I've had RF (radio frequency) ablation to my Pelvic bone where I had a large lesion. It was done under local anesthesia as I was having a 2nd surgery a few hours later. Certainly bone and liver are not the same, but for me, it felt like a massive freezing inside during the procedure, as the anesthesia didn't fully take. It was a little sore after but not tremendously. So don't know if that is any help to you.

As for the liver, it is an organ that will regenerate on it's own, so if a section is removed it is not permanent...if that can reassure you a little.

I wish you courage. The unknown and waiting period are not always easy. My advice is to try your best to stay in the present moment and not go into the what ifs until you have all the answers. I know it's easier said than done.

Good luck to you 🌸

[1711JPD in reply to LadyC-Mtl]

Thank you do much for bringing clarity to this for me and others! I am grateful for your help! Best wishes.

[Mary115]

I too do not have RG ablation experience but wanted to just touch base, and join others in being with you as we all explore and learn together. This PET scan was a tough one, and wanted to be in your corner which is filled with so many others here too.