CT SCAN vs oncologist

[Euebdbdbddh]

Hi , have you ever had that your oncologist would not recommend you to have full body scan after 1 year of Ibrace /letrozoe ? I trust my oncologist, my oncologist is one of the top oncologist in the country , but even after explaining that my existing lumps are getting bigger does not recommend me to have full body scan. Just wondering ....

[Epinto]

I have been on ibrance and faslodex for more than two years and have had pet/ct scans every four months in addition to the monthly blood work. I don’t think I would be comfortable waiting so long.

[Euebdbdbddh in reply to Epinto]

Hi thank you , where are you based ? I live in the UK

[Epinto in reply to Euebdbdbddh]

I live in New York and am cared for at Sloan Kettering hospital in New York. Did your doctor explain why the long wait for the scan? Is that the regimen where u are?

[Euebdbdbddh in reply to Epinto]

Well , I don’t think so , my oncologist explained that does not want me to get radiation from CT scan and everything can be seen from my bloods

[Euebdbdbddh in reply to Euebdbdbddh]

The thing is that my oncologist is very well respected in this field , involved in research and trials , but wondering .... looks like everyone else has CT scans done on regular basis

[Epinto in reply to Euebdbdbddh]

That’s interesting. My doctor does look at the cancer markers but states the scan is most revealing about what may or may not be going on as well as any new symptoms. Can u request to have it done? Is it a matter of your insurance not paying for it ? Discuss your concerns as I am sure u already have. The benefits of knowing what’s going on outweigh the risks of the radiation in my humble opinion.

[Euebdbdbddh in reply to Epinto]

My insurance covers everything and I can ask to have CT scan done , but when your oncologist does not want your to have it , you want to trust your doctor’s judgment.... I just don’t know , I am confused . Thank you so much for info provided x

[Epinto in reply to Euebdbdbddh]

I think the best thing to do is discuss this again with your doctor so that u can feel at ease.

[Teddielottie in reply to Euebdbdbddh]

I’m in the UK and have treatment on NHS, but my onc too based my CT scan on my bloods, how I am feeling , my tumour markers and my diagnosis . I was anxious with the long wait (9 months) , but relieved now that I am told I am N.E.D. My next scan will be in 6 months .

[Euebdbdbddh in reply to Teddielottie]

NED based on what please ? Based on TM and blood tests or CR scan please ?

[Teddielottie in reply to Euebdbdbddh]

I had my first CT scan (with contrast) recently in September 2018 (since starting Ibrance 9 months earlier). I had a CT scan and also a full bone scan just before starting on Ibrance / Letrozole at the end of 2017. My No Evidence of active Disease is from my recent CT scan, where my onc could see that my bone mets were sealed over, when compared with my first scan. I think you can only get N.E.D. from results of a scan. As many people on here have said tumour markers on their own are not a reliable measure (my TM are in normal range, my bloods have been fine and I have had no pain). I too trust my Onc x

[Hidden]

Interesting. I am in South Africa and my oncologist does pay some attention to radical changes in my bloodwork but has tended to have a CT scan (chest and abdomen - I have liver lesions) about 3 times a year and especially if bloodwork is radically up - smaller fluctuations she does not worry about. She insists on an annual mammogram and once, when my counts were raised between 50 and 100 points, she ordered a nuclear full body scan and a brain MRI but seems she is guided by her fingers on my physical examinations and the bloodwork is a guide.

[Euebdbdbddh in reply to Hidden]

Hi Izzyf, I also have liver lesions and as per blood test my liver function is normal since I am on ibrace and letrozole. I don’t know anything any more

[Hidden in reply to Euebdbdbddh]

I was diagnosed 5 years ago and have been on letrozole for 3 years (ibrance not available to me here) then xeloda the navelbine and the faslodex. Now I am not on any meds as I have no symptoms and my oncologist also feels that, as the next step is full on chemo I should rather enjoy a better quality of life than I would on drugs of that sort until they are necessary! Every change I have had has been driven by a sudden escalation in my blood counts (CEA and CA125 each up more than 40 points in a month) which in turn called for a CT scan (and the others mentioned when navelbine refused to show any help at all). Of course one doesn't want too many but I have learned to treat it as a tool which is far less troublesome than sitting not knowing what is going on. Good Luck

[diamags]

I have scans 3x per year. I'm at Northwestern Hospital here in Chicago. We really don't look too hard (if at all) at tumor markers as they are unreliable. I'd talk to your doc again. With me, when my cancer was first diagnosed, I felt fine. When they found the met 5 months later it was by chance, so I would be uncomfortable with using how I feel as a marker.

[oilermama in reply to diamags]

I too felt fine and the MBC was discovered pretty much by chance. The tumor markers don't seem to be reliable for me.

[PJBinMI]

Something to keep in mind is that each of us has a very individual cancer and our oncs are going to make recommendations based on alot of factors, including how our cancer has responded to treatment so far. My recently retired onc told me early on that she pays the most attention to how I am feeling, scans next and tumor markers a distant third. Some of us who do well for quite awhile can sometimes go without scans for relatively long periods of time, But much depends on the particular cancer cells. For me, it's worked well to view this as a long term journey with cancer and not being in a hurry to change meds just because of some increase in TMs. But that would not work for someone with a highly aggressive cancer. It might help to ask your onc to talk with you about long term/big picture aspects of your treatment.

[lynnhbtb]

My experience is that Onc. ordered scan 3 months after staring Ibrance and Faslodex. I am having another PET/CT next week, which will be 6 months after starting this med routine. I believe dr. said, as long as no pain and no indication of mets, then another scan in 6 months and then annually. The insurance co. did deny the first request for a scan though and dr. had to do a peer-to-peer to get approved. My dr. does this and is used to it, but I believe some docs don't like/want to take the time for a peer-to-peer. My PCP said they take up the docs' time to discourage them from disputing. I would keep pushing, if nothing than for peace of mind.

[lynnhbtb]

And to add, my onc. also looks at tumor markers, but they aren't reliable and not always a good indication. I believe all the tests, scans and exams are pieces to the puzzle and it's our doctor's job to put them all together to make a complete picture. Then, they can recommend treatment options. All the best to you!