update on Oncology appointment

[Jenniferp2122]

hi everyone- I wrote in the group last week about my dads mixed response to treatment. He has been NED on treatment (Ibrance lupron letrozole) for about 10-12 months and then his scan in July showed some uptake in his right chest wall. 2 spots were very small SUV and there was another lymph node with Suv MAX 5.6. His entire body is clean except for this one area.

The oncologist said today they just want to keep an eye on it and re scan him in 2 months. Has this ever happened to anyone else where a spot appeared and then “went to sleep” while monitoring?

[Urca]

Hi, it happened to me. Two new spots on ribs seen in Ct/Pet scan. They disappeared completely after three months. They were due to fractures, not cancer. Wish you the same

[bikebabe]

I have this a lot of of the time (uk -nhs) and it used to make me concerned. A 3 mth scan would say ‘New area of inteeesst possible progression’ and then isn’t reported on at next 3mth scan. Was told different radiologists see things differently. To avoid getting anxious I only now worry if the same one is reported twice in a row.

[Jenniferp2122 in reply to bikebabe]

did they just keep you on treatment and monitor?

[Jenniferp2122 in reply to Jenniferp2122]

the same treatment *

[bikebabe in reply to Jenniferp2122]

yes - same treatment

[Kerryd22]

Yes. I had a scan in March which showed a nodule lit up in the peritoneal area. So I was booked for a follow up within 12 weeks. That scan showed the node had shrunk by half and the radiologist noted that many bone lesions were healed and the original breast tumour was invisible on the scan. I don’t know when all that happened because it’s not been noted before but it was decided that I’d stay with Exemestane until genuine progression. I watched the YouTube video that was posted last week and apparently progression that’s concerning is 30% increase of existing Mets or Mets in a new area.

I’m not booked for a further review until November.

[Jenniferp2122 in reply to Kerryd22]

when you say Mets in a new area do you mean in an area where they haven’t been before?

[Kerryd22 in reply to Jenniferp2122]

Yes that’s what I understood it to be. When I started on Letrazole I had no bone Mets above my neck but three months later they were everywhere in my skull and neck. So that triggered a change to IV chemotherapy. As far as I know it met the 30% progression criteria but equally it was showing as aggressive and it had moved into an entirely new section of my body.

[Jenniferp2122 in reply to Kerryd22]

gotcha. This lymph node that popped up for my dad was at his original site of diagnosis in June of 2022.

[Kerryd22 in reply to Jenniferp2122]

That explains the wait and see recommendation. It worked out fine for me although I was a bit nervous waiting for the results. My goal is to get as much time as I can on Exemestane so changing at the mere hint of progression isn’t what I want and fortunately it’s not what my oncologist wants either.

I hope your dad has a similar result in two months!

[Lillysue]

I had a new node show up on a scan in Ja. Oncologist said to monitor. No mention of it in April, seemscto have disappeared. Having my next scan on Tuesday.

[Jenniferp2122 in reply to Lillysue]

keep me posted how this goes. Thinking of you!

[Jenniferp2122 in reply to Lillysue]

How are you doing now?

[Lillysue in reply to Jenniferp2122]

Thank you for asking.My last scan revealed there is No Evidence of Active Disease. I am delighted. Someone once said if you feel well than you are well. Now getting on with life.

Another scan next month. They come round too quickly.

[Jenniferp2122 in reply to Lillysue]

Thank you so much for sharing. Did your tumor markers ever rise despite showing NEAD?

[Lillysue in reply to Jenniferp2122]

My oncologist has never shared my tumour markers with me.

[Andersl]

Did the oncologist describe the spots as 'going to sleep '? I've not heard that term before.Its likely that they're monitoring them to see if eg over the next few cycles of treatment they become smaller/disappear.

My advice would be to accept the specialists are keeping an eye on the situation which may/may not come to anything and focus your mind on the here and now

Best wishes x

[NPmary]

Yes, this is pretty common and causes anxiety - coping with this is a personal learning experience. Being calm, supportive, and a listening presence for your dad is what he needs.

Best, 🌺