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?

Well @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

I 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

Thanks @primek, little by little we alllearn 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!

It remains a slightly distressing fact though, no matter the science and stats behind it. You have the awful Big C diagnosis, incredibly invasive, toxic and destructive treatments, and for 70%, are then placed onto long term medication that is often very difficult to take. To be met with a 'but we won't be checking if any of this has worked/is working', especially if the technology exists, seems odd to weird to the lay person.I do understand why, but I still scratch my head that at 51, with a strong family history of BC (mother, and deceased sister) I have not had a single scan in the entire experience.I know that if it metastasises it metatastises and knowing now or six months later will make no difference to the outcome. My oncologist said that it takes a million cancer cells before anything is visible.It doesn't stop me worrying about finding a recurrence (or a new breast cancer) earlier rather than later, for myself and anyone else. So much of surviving BC is the mental struggle. It'd be so nice to have the possibility of settling our worries once every year or two.

@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.

Scan or not to Scan - Post treatment

24 Replies

melclarity
Member
6 years ago
@Shakalker this is a good point but one my Oncologist answered to me also straight from treatment. Upon completion it is natural and normal for everyone to want to know if their body is all clear. The reality is though? the scans wouldnt show anything generally, most BC is slow growing, I think the earliest he'd do one for me was at 6 months. It makes alot of sense, the other thing he mentioned is unfortunately we are not advanced at all...that we are only as good as detecting it once it is there :/ we still haven't got a foot in front of it. I too am ER+ and was Grade 3 no LN involvement, I too had 4 rounds of FEC and I had 8 rounds of Taxol. He did say if I had any complaints they would definitely do scans and investigate but that would be the only time. As Id had a recurrence already 4yrs after the initial in same spot, I had a mastectomy/diep flap recon. He said he wasnt monitoring me for BC anymore but rather a secondary...you could IMAGINE how taken back I was. For someone who bounces into his appointments as of this year its yearly not 6 monthly, going into 4 years clear! that doesnt even cross my mind! I'm focused on moving forward! lol x
kmakm
Member
6 years ago
It remains a slightly distressing fact though, no matter the science and stats behind it. You have the awful Big C diagnosis, incredibly invasive, toxic and destructive treatments, and for 70%, are then placed onto long term medication that is often very difficult to take. To be met with a 'but we won't be checking if any of this has worked/is working', especially if the technology exists, seems odd to weird to the lay person.

I do understand why, but I still scratch my head that at 51, with a strong family history of BC (mother, and deceased sister) I have not had a single scan in the entire experience.

I know that if it metastasises it metatastises and knowing now or six months later will make no difference to the outcome. My oncologist said that it takes a million cancer cells before anything is visible.

It doesn't stop me worrying about finding a recurrence (or a new breast cancer) earlier rather than later, for myself and anyone else. So much of surviving BC is the mental struggle. It'd be so nice to have the possibility of settling our worries once every year or two.
Shakalker
Member
6 years ago
@primek thanks for this info, I had not seen this before, it answers a lot
👍🏻
primek
Member
6 years ago
This might explain it for you. Your treating team are following best practice.

https://www.cancer.org.au/news/news-articles/new-recommendations-for-best-practice-care-in-breast-cancer.html

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Scan or not to Scan - Post treatment

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