Forum Discussion
Shakalker
7 years agoMember
Scan or not to Scan - Post treatment
I have now completed treatment and I’m on Letrazole.
I had IDC grade 3 ER + clear margins, 2x lymph nodes with adenocarcinoma and High grade DCIS - margins involved.
I had 3x FEC and 1 out of 3 Docetaxel (Nasty stuff)
25 rads.
No re section for DCIS, I was told chemo and radiation would take care of any cells left behind.
I had a meeting with my surgeon on Wednesday and I asked whether I was to have a scan to check effectiveness of what I’d been through.
I believed that 3 months after treatment this was normal.
I was given a long drawn out story about the pros and cons of scans and told I would be best to wait and see if I get symptoms of returning cancers rather than having a scan which could show nothing however I could have G zero cells hiding and waiting to become active at any time, proving a negative scan wrong.
I was also told G zero cells are dormant and are not affected by chemotherapy and can become active at any time and return.
There was so much more I was told, that was in some ways a total back flip to what I was told in the beginning.
Long and short, has anyone else been told this?
I had IDC grade 3 ER + clear margins, 2x lymph nodes with adenocarcinoma and High grade DCIS - margins involved.
I had 3x FEC and 1 out of 3 Docetaxel (Nasty stuff)
25 rads.
No re section for DCIS, I was told chemo and radiation would take care of any cells left behind.
I had a meeting with my surgeon on Wednesday and I asked whether I was to have a scan to check effectiveness of what I’d been through.
I believed that 3 months after treatment this was normal.
I was given a long drawn out story about the pros and cons of scans and told I would be best to wait and see if I get symptoms of returning cancers rather than having a scan which could show nothing however I could have G zero cells hiding and waiting to become active at any time, proving a negative scan wrong.
I was also told G zero cells are dormant and are not affected by chemotherapy and can become active at any time and return.
There was so much more I was told, that was in some ways a total back flip to what I was told in the beginning.
Long and short, has anyone else been told this?
24 Replies
- kmakmMemberBit dense but a new study from the US about MRIs vs mammograms for detecting second cancers. An interesting nugget at the end of the third last paragraph.
https://www.medpagetoday.com/hematologyoncology/breastcancer/81189 - AfraserMemberThanks @primek, little by little we all
learn more! Agree, that’s more informative. Just adds to my long held belief that, if you didn’t have cancer, you’d be fascinated by the adaptability and persistence of cancer cells! - primekMemberWell @Afraser that explanation didn't help me even with a science working background. :D
So i looked this up...it might explain for others a bit more. Helped me.
Presently I'm still going to believe I am cancer free. Otherwise I woikd just lose my sh!t altogether.
https://theconversation.com/why-cancer-cells-go-to-sleep-94956 - AfraserMemberI am normally in favour of having all the relevant information, but sometimes, maybe, you can have too much of a good thing. The following may or may not be accurate
(G0 = G zero). I agree, who knew? But then again, would it change anything?
Human cancers have an apparent low growth fraction, the bulk of cells presumed to being out of cycle in a G0 quiescent state due to the inability in the past to distinguish G0 from G1 cells. ... Thus, human cancers are blocked in transition in G1 and are not predominantly in a G0 or quiescent differentiated state. - BlackWidowMemberMy big question is - who has been told of G zero cells ? Not me ! Are we all being given the right information and the rights treatments then checks ???????????? Me wonders ......
- Patti_JMemberI really wish that I didn't need to have CT scans every 3 months. But, I do.
I am also just about to have a brain MRI.
These tests aren't fun. - melclarityMemberI think that's the whole point, we really aren't that advanced at all, Dr De boer has said it to me many times. Unfortunately that is correct @kmakm there is no testing that detects stage1 or stage 4 earlier than later, they only pick up when it is there. Thats the hardest damn thing because there doesnt seem to be any safeguards at all. We get treated and monitored, as I said Dr De Boer isnt looking for BC in my right side, he monitors me for a secondary. In my head Im like, how is there not a blood test or a test that detects the body changes before the cancer arrives?? how are we not even there yet?
I know what its like to lose someone suddenly to Cancer with zero warning, my Mum survived 26 years from BC to end up with a pain in her back rushed to hospital and 2 weeks later put to palliative care at 66!! she passed 4 weeks later. There was no sign, no prediction, we were left in absolute shock.
I think after having had a recurrence, there are so many things I dont place importance on, the world is unpredictable all illnesses are I guess. I was blindsighted the last time, if it happened again I'd be disappointed to think they really havent evolved at all in prevention.
I have no choice but to work full time, and nobody knows how damn hard it is, but there is no choice for me. So many responsibilities, but am grateful for a loving partner, his children and mine and a very few close friends. I live mostly for the now where possible but yes somethings have to be planned and that's ok.
My Mum had a cruise booked, they were fierce travellers and this was with my Dad, her best friend and new husband.
So I feel for everyone affected, in fact I see the Onc this week, so I have some questions! but to be honest Im sick of attending Id sooner keep enjoying my life and see him if I feel I need to, otherwise whats the point.
Hugs M x - kmakmMember@youngdogmum So true about choosing how to spend your time if it's very limited. It's a lovely idea to live as if each day, week or month is your last. However the reality for most of us is bills to pay and jobs to do. We might be postponing say, that trip round Australia with the kids until a couple of years down the track.
My sister had one last trip planned, to take her children to a very special place that meant a great deal to all of them. But her BC got significantly worse, significantly faster. The tickets had been booked but she died three months before the holiday. It still upsets me to think about it. I know these things can't be predicted, but if she'd known earlier about the progression of her disease... We'll never know.
Medically speaking, I presume there's no advantage to catching Stage 4 earlier rather than later. Which is the medical reason why we're not scanned.
I'm still surprised by how little we know about BC. Hopefully one day soon we'll get out in front of it. I'd love that to be in my (fingers crossed long!) lifetime. - youngdogmumMember@kmakm I too really struggle with this. I get it from an over exposure to radiation point of view and a public health point of view with a cost vs benefit scenario. However the point I try to argue with my onc is, if I knew I had mets now versus 8 months when symptoms might develop, well for someone of my age that's significant time to do the things I want to do before I passed.
Its an absolute mind f*** isn't it.
Genetics told me if I came back with a mutation called TP53 I would have scored an annual full body MRI; I didn't come back with it but I was almost hoping for it in that weird way, knowing I'd get scanned regularly. - MiraMemberOh wow, I learn something every day! I'd never heard of G Zero cells. I knew that cancer cells were tiny, but thought they were all visible on the screens. :smile: