How are you monitored after active treatment?

RosesToeses · November 2012

I'm wondering what the standard of care is for us stage III gals as far as scans and monitoring after active treatment?

I'm in the home stretch of my treatment now (hooray!) with chemo done and rads just started. On my most recent appt. I asked my MO how they were planning on monitoring me and she told they'd see me often but they don't do regular scans to check for recurrence or mets, only if there are symptoms.

Is this standard or kind of unusual? The hospital is well regarded, so that's in makes me less worried, but I keep reading about scanxiety and BCO members getting their scans so somebody's getting them!

I tried to search but "scan" and "monitor" bring up lots of unrelated stuff--if there's already a thread someone can point me to, that would be great, too!

Bugs · November 2012

My onc doesn't scan unless there are symptoms. He did one "post treatment" PET scan. You will probably see your onc every 3 mo for a while and she will do bloodwork. Some oncs do tumor markers, some don't. Mine does...but he also says that there are other indicators without the markers that tells him how things are going. It's tough getting out of active treatment and not getting the constant care from the dr's and nurses. On the one had you can't wait to have free time and no appts. On the other, it sure is reassuring to see your dr a lot and be able to ask questions when something pops up.

Congrats on almost being done!!

TectonicShift · November 2012

Mine does not do scans or tumor markers. He said if it comes back, we'll know eventually. Actually I asked four different oncs at four different well respected cancer centers in the Northeast and all four said no scans or tumor markers.

sewingnut · November 2012

I see the Onc every 6 months. I have blood work (CMP, CBC and CA27.29). No scans unless something is problematic. I also see my PCP for anything non cancer related. Yearly mammogram.

RosesToeses · November 2012

Thanks for all the responses--sounds like it's actually very normal, which is really good to know!

I'm thrilled to be done with chemo, and just rads (and tamoxifen) to go, but every new step is that much more of a learning curve to try and figure out. I really like my onc and I think I'm in good hands, but there's always that little voice reminding me that what if I don't know enough to know if something were off (thank goodness for these boards and people like you who can share experiences)!

Outfield · November 2012

RT,

The recommendations from the Oncology society are just to talk to you, do a physical exam and bloodwork, not routine scans. That's why so few of us are being scanned ROUTINELY. But we're still getting lots of scans! I have had a couple myself since treatment because I had pain. The whole approach to all the little things that can go slightly wrong with a person's body changes.

CherylinOhio · November 2012

Hi, I see my onc every 3 months, he said every 6 I said no I'll see you every 3 months for awhile. I had a Ct and bone scan after surgery, he won't do any other scans unless there are symptoms. THis year I had 2 bones scans and some xrays due to back and hip pain but I think that is from tamoxifen. I get bloodwork everytime I go in and he does not do markers as he says they are not accurate. He insists that too many scans can cause ill effects so unless I insist on something then we just do bloodwork.

Kathleen26 · November 2012

Same for me, no scheduled scans, but my onc is willing to get a scan for any unexplained symptom. In the 2 years since I finished treatment, I've had a bone scan, an abdominal CT, and 2 chest CTs. All have come up clean. I think part of this is that most insurance won't pay for these scans unless they're diagnostic. I was not even able to get insurance to pay for the post-chemo PET scan, but they seem to have no problem shelling out for CTs when there's a symptom.

Momine · November 2012

For the first two years, I see the doc every 3 months. Blood work each time, including tumor markers; CT, bone and dexa once a year. I am being followed by my surgeon, because he is an ego-maniac, and insists on being in charge. I also see my onc every 3-4 months, and I try to schedule them so they are spread out. This way, some doc has his hands on me every other months or so.

lostinmo · November 2012

So far I am set up for bloodwork and just see the Doc, no scans

overjoyed4life · November 2012

Office visits every 3 months, bloodwork, no scans unless symptomatic.

RosesToeses · December 2012

I'm so glad I asked instead of sitting here wondering if I should worry about it or not! Sounds like it's totally the accepted way to go--thanks for all the responses!

With everything about cancer being (usually literally) a matter of life and death, and me being kind of a worrier anyway, it's really good to get some confirmation about how these things are done.

Of course I had forgotten that tamoxifen can also cause joint and bone pain--how terrible that it gives the same symptoms as bone mets! But my onc and her nurse practitioner both stressed that I shouldn't hesitate to talk to them about any symptoms that worried me and together we'd figure out how serious they really were. Good thing I like both of them because it sounds like I may be talking to them a lot in the future.

CherylinOhio · December 2012

I love my onc and his staff!! It is great to have a doc that you like and that doesn't think we are whacko from every little ache and pain. My onc and his PA will sit patiently and listen to what I say and read what I bring them, even though he thinks, well he says I am his little overreactor. But hey but over react than ignore. I see my BS and radiation guy once a year. I can't wait to get to the 5 year mark!! In March of 2013 will be entering 3 years from dx. I think that's right, I was dx March 2011, am starting my 2nd year out from active treatment. I hope, I hope..... I can make it another 10. I promist to come back and post and inspire others like others have inspired me. Take care everyone!! Have a great day!! It's 60 here in Ohio for the next 2 days!! YEAH!!!!

How are you monitored after active treatment?

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