Frequency of scans

finallyoverit

Hi ladies! Just curious.. how often does your MO order new scans? I was on the 3-month plan and just this morning he told me he is comfortable moving them to every 4-months.

How often are your scans?

ETA- question mark

Sadiesservant

My schedule has been pretty erratic since I was diagnosed in December 2016 but when I asked, my MO indicated he typically scans every three months while I am on treatment. Having said that, it was almost six months between my initial CT and the first follow up CT. Then I developed symptoms (turned out related to progression) so we scanned again within a couple of months. I then had scans every couple of months while we were trying to find a treatment that would stick. Now I'm back to the three months (or so) schedule.

All this to say that my MO scans as needed but I he is clearly not worried about stretching out the frequency in the absence of any worrisome clinical symptoms. Sounds like good news to me...

Husband11

My wife was getting them done every 3 months, but they have now moved her to every 4 months.

marijen

Sorry, whoops! I wandered into the wrong forum. Please excuse my disorientation.

Sadiesservant

Thanks. I've seen this Marijen. However, as it notes in the article cancers from medical radiation can take anywhere from five to 60 years to develop. But as someone with advanced cancer, I also have to recognize that an undiagnosed progression of stage IV cancer while receiving an ineffective treatment can end my life in under a year depending on where the progression is located. I certainly don't want unnecessary scans but it is a balancing act to determine my own risk tolerance. Personally, I'm comfortable with my MO's approach but it is a good reminder that scans are not without their own risks, particularly for those who are early stage.

Wishing everyone a great weekend.

Lauriesh

marijen, when you are stage 4, the long term dangers of having scans is not really an issue. They are necessary to monitor how treatments are working

LoriCA

Mine were originally every 3 months and my next would be due now, but my M.O. said he's comfortable holding off for another month since it's obvious that my treatment is working. At first I was disappointed because there's some peace of mind with a no-progression scan, but then I realized that he's right, we do know that my treatment is working so why submit myself to the additional stress of a scan earlier than I need it. And when I was having some new back pain he was the first to suggest accelerating my scan, so I think it's a good balance.

I know that as someone with advanced cancer it probably doesn't make sense to worry about having all of that radioactive material injected into your body on a regular basis, but I still do think about it. I had a battery of contrast scans, some of them multiple times, over the course of three days when I was first diagnosed and they were trying to get a grip on how fast it was growing. I was fine with quarterly PET scans, but when I learned that I was also supposed to get quarterly MUGA scans it bothered me. I was happy that my cardiologist recommended an echocardiogram instead, and even happier when he said that my heart was so strong that he didn't need to see me again for another 6 months unless I had problems. I have a love/hate relationship with scans.

illimae

Mine were every 3 months during treatment last year, however, Brain Mets were discovered in October, so scans were done to check for progression. Nothing new in the body, so I’m on to 4 month scans. Brain scans are currently monthly, as I had some new ones crash the party.

ShetlandPony

I had PET-CTs every three months—I think once it was four at my request—for the first three years of mbc. There were also a couple CTs and a bone scan in there. That’s a lot of scans. During that time my onc and I learned that for me, my tumor marker was extremely accurate. It always corresponded to symptoms and scans. In fact, it predicted scan results. When I started Xeloda about ten months ago, the marker plunged and went to low normal. So now I am in a period of calm with no scans for about ten months. It is a nice break from scanxiety. If the marker rises or I have any symptoms, I know my onc will order a scan asap. If I said I wanted one I think she would order it . But I’m comfortable with this right now.

terri-c

CT of chest/abdomen/pelvis and full body bone scan every 4 months. I was also on the 3 month scans until last year

pajim

Six months for a bit, then every year. Then every 4 months whist we were waiting to switch meds (for extra monitoring). I had a CT last April because I was on a clinical trial, and one in January because my liver function tests were wonky. Next one will be when the TMs start to rise higher than we are happy with. I'd guess some time this summer (ask me next week after the blood draw).

All this is to say -- for cause. We do scans only if there's a good reason. And since I'm OK with that and my onc is OK with that, it works for us.

bloomingdalechik

I'm totally grappling with this myself! I was diagnosed in 2015 and started off with 3 months, then 4 months, then 5 months, and holding steady at 6 months for over 2 years now. 3.25 years later, I'm still on my first line treatment and scanning every 6 months. I've convinced my oncologist to have me scan every 9 months though she is hesitant. Does anyone scan at the 9 month or year mark? How do you feel about it? Thanks.

Anonymous

bloomingdalechik -- After my first treatments, I was NEAD for 4 years. My tumor markers have been very reliable. So, we did scans every 6 months and then every 8-10 months until progression was found. We are back to 3-4 months now, but if your markers have been reliable, I know that I'd feel comfortable going longer like that again.

bloomingdalechik

nbnotes - thanks! this is helpful! unfortunately, i have never expressed in my tumor markers so monitoring those markers is not an option for me. I think i'm ok with extended to the 9 month mark as well; i just have to get everyone on board. i feel like i'm in it for the long haul and want to scan as needed (nothing more).

Husband11

My wife's oncologist has now told us, through the nurse, after our latest meeting, that she only wants to meet with my wife every 3 months from now on. Not impressed, with either the manner of not telling us face to face, nor the lack of personal attention this will bring. Is that normal? Only seeing your oncologist every 3 months while undergoing treatment for stage IV?

blainejennifer

Husband,

What!?!? Every three months? I see my MO every month. I think my experience is normal, and that your's might not be. I hope others will chime in.

Jennifer

Chicagoan

I saw my oncologist monthly for the first four or five months. As my condition stabilized, I now see her every three months. My oncologist offered that as an option and I prefer that. I do get blood work and Xgeva shots monthly-the blood work gives clues to my condition. My oncologist also said to call or come in if anything seemed wrong. I get scanned every 3 months, so I see her about a week after my scans. We were going to switch to 4 months but since I'm in my 18th month of Ibrance, we decided it's better to stick with 3 in case I get progression.

Lynnwood1960

As many have said, I was scanned every 3 months for a while and now it’s every 4 months unless I have a new symptom or my bloodwork is off. Fine with me because I HATE scanxiety!! Husband, I saw my onc monthly for the first year or so. Now 3 years in, I see her every 8 weeks. She said some patients do better the less they see the doctor and she thinks I’m one of them. If I have a problem I can see her immediately. I think your wife should be seen more frequently then every 3 months.... especially if she is uncomfortable with it. Just my opinion but I think the patients should have a say in how often they are seen.

Goodie16

I'm 3 years out from mets diagnosis. I was scanned every 3 months for the first year, then every 6 for year two, and now we are at an annual scan for my body. My only met site was the brain. I was scanned every 3 months for the first year, then during year 2 we did a 4 month scan and another in 6 months. That last one showed a possible progression, so my neuro onc is moving me back down to 4 months to see if there is any changes on the next scan.

Throughout all of this my tumor markers have been very, very low and a good indicator for me. I see my MO every 3 months for a check-up and bloodwork. We discuss tumor markers at this appointment. I'm comfortable with my schedule and thankful that I don't have to struggle with scananxiety very often. That being said, though, each case is very unique. My MO has sent me for 2nd and 3rd opinions regarding his treatment of me and works closely with my neuro onc. All the docs agree that my single brain met is a very odd situation so there's no "guidebook" to follow. We communicate a lot and I am comfortable with my treatment at this time.

Sadiesservant

Husband,

I don't think that this is that unusual. In my case (also in Canada) it has depended a great deal on what treatment I am on. With Taxol I saw him at the beginning and then about two months later after three cycles. I saw an NP after each cycle though. On Ibrance and Anastrozole, I saw him more frequently or spoke to him on the phone. On Xeloda I was once again back on the schedule of seeing him after three cycles, this time seeing the GP associated with the Cancer agency after each cycle. Now, on Faslodex, I am seeing him every three months. However, he repeatedly tells me to contact him if I have any concerns or need him. He gave me his email and is VERY responsive so I have no worries.

One of the things that oncologists strive for is giving us the space to lead as normal a life as possible. That’s a bit tricky if you are running to appointments all the time. I do believe that it is more altruismthan trying to minimize services to cancer patients.

Pat.

exbrnxgrl

I have almost reached the 7 year mark since dx. I started out with scans every 3 months, then went to 6 months and we are now considering going to annual. I also see my mo only every 6 months. I have been NEAD since initial tx. Of course, should I experience any symptoms, my mo will see me sooner. It may sound strange to some, but moving away from the initial close monitoring, makes me feel more normal and less like a time bomb. Most of you know that I'm a "less is more" type of person, so this suits me. My mo is great, but the early constant vigilance made more nervous. I feel much more relaxed now

Nkb

I was diagnosed with MBC a year ago. Had scans, blood transfusion, tumor markers, bone marrow biopsy and started on Ibrance and Faslodex, was already on Zometa. Rescanned every 3 months with TMs every month. Last scan was 4 months and still stable- tumor markers heading down- still very high and anemia getting better and better. I see my MO every 3 months, but, I get a phone call every month from the Onco PharmD asking me how I am, reviewing my blood test and plan for that month. I get an email every month from my MO about my tumor markers. I can email my MO anytime. This last visit she said I could go a year before my next PET if TMs keep heading down, I feel fine and HGB stays stable. I could also have one sooner if I wanted to. I was surprised- and then happy that she feels confident that I am going to do well for awhile. I will still have lab every month. I still see her every 3 months- could be more or less frequent. She told me that there is a psychological toll to too many visits and scans. For me, I think it is true.

ShetlandPony

And yet for me, there would be more of a psychological toll in not seeing my onc monthly. I want to know she is still thinking of me and watching the horizon for a new ship bringing another treatment to put on our short list. And I always have issues or questions to bring up. The one time we tried spacing the visits out more, that was when my scan or TM was concerning, and then I had to try and get squeezed in the schedule. It seems to me that the oncologist should take not only the patient's medical condition, but her preference, into consideration when planning the frequency of visits. It should be individualized.

Nkb

I totally agree with you Shetland- people should decide what works best for them. I do think that the monthly phone calls from the onco pharmD help and her monthly emails with my TM results help to lengthen the appointments. But, I want to be on de nile as much as I can.