Hi Elliedog, I agree with Nicky that I would probably prefer 6 monthly scans. I think I would get nervous waiting 12 months but that may be just me. Your team do seem very good. Brilliant news though! Take care. Love Sheila xx
It's great news about the forward treatment plan your oncologist is proposing but I know what you mean about the safety net of scans. After my secondary dx (2008, bones) I had 3 monthly, then 6 monthly CT scans, eventually not having one for about 12 months or so. On this one it picked up my liver mets and further spread to the bones. I had only noticed a slight muscular type of pain in my leg so had requested a scan, other than that I am asymptomatic (sp?) and also don't get tumour markers taken. Therefore, for me I would want a scan every 6 months but if your blood markers are taken I would use them as presumably your team has found them a good indicator in the past. How lovely to be in your position though
ps I may PM you soon regarding the treatment you've been on to pick your brains as I'm due to start in the next few weeks, just waiting for funding etc.
Hi elliedog...I am torn in the same way as you!...When I was first diagnosed in 2011 I had Bone scan followed by MRI of spine and CT scan. I had vertebral mets and a collapsed vertebra in contact with spinal cord but nothing anywhere else. Following this I had regular MRIs of my back..and about a year later when my markers were rising, and a change in treatment proposed, had a further CT (also clear apart from the spinal mets). Ive asked re repeat CT scans...and I know if I really pushed it could have one....but I have chosen to be reasured by my onc saying that 1. markers are stable on capacitabine. and 2. there is no evidence that early detection of secondaries before they are symptomatic leads to improved outcomes....counterintuitive I know! He also says about radiation risk....actually a red herring for us cos the liklihood of that being relevant when our life expectancy is so reduced by the secondary cancer is approaching nil!!
I recently had persistant pain in my hip. I was offerred an xray which was normal. I said that I wasnt fully reasurred and so a bone scan was arranged. Cos something was seen on the scan they proceeded at the same appt to do a spect ct of my hip and pelvic bones. I had the results yesterday which im happy to say were normal.
I think what Im trying to say in a roundabout way is that I can live with the worry of not having 3 or 6 monthly CT scans because I trust the team looking after me...I know my markers are being checked regularly....and if I am unhappy about something they will react and investigate ........the payback is I dont have the worry of waiting for CT scan results every 3 months or so..although do have reasonably regular MRIs of my back cos of the concern re spinal cord.
When my current treatment fails (hopefully detected early by rising markers) I will push for a CT then and if appropriate biopsy......
not sure if this helps but hope you feel comfortable with the decisions you make! best wishes Pamx
...ps Bev i think we are treated by the same team.....yesterday the onc walked into tthe appt clutching a copy of the scan results saying " this copy is for you I know you'll want it"......so I dont think he would be shocked if you asked for a copy of yours if thats what you want!
Hi everyone. I would appreciate a little advice and your opinion. I have recently had a very good meeting with my onc, long story short there is no detectable cancer in the body,he wants to eventually stop the Pertuzumab and possibly the Tamoxifen, leaving me with Herceptin. Plus I have also got the go ahead for reconstruction. All this is going to take time and certainly isn't happening without further discussion. However yesterday I went for my usual checkup with the nurse practioner, who I do trust and has always been spot on. She read the notes from the meeting with the onc and said did he say when he wanted to scan you next, we didn't discuss scans.She then said it looks like he wants to do it once a year. I was a little unsure about this because I have always seen the scans as a bit of a safety net, although I do hate them.She explained to me that with me my bloods are good at showing what are going on and of cause I have regular checkups. I never had any signs that I had secondaries in the beginning but I learned yesterday that they picked things up in my bloods.So after some further discussion about the onc not wanting to put me through regular radiation from the scans if there is no need I think she managed to convince me.So my next scan will be March next year. Does this happen where people are reduced on their number of scans and how do people feels about this.Part of me feels a little relieved that they think I am doing well but I also feel a little scared that things can be going on in my body undetected.What do you think ladies.x