Monitoring after treatment
 

I am curious about the way that survivors are being monitored once their treatments are done.

A friend of mine from St. Louis is given chest ex-rays and a tumor marker tests periodically, her cancer was stage 2B. I was talking to my oncologist and they just give you blood tests to tests things like liver levels as well as just a periodic exam. They don't due any x-rays or CT's or Pet Scans unless there is a reason to think there may be a problem. He told me they only do the tumor marker test on people who they know have tumors.

I was wondering which way is the norm.

Goops, It seems most oncologist are against regular scans unless you have symptoms. But since I'm a stage III'er with positive nodes I ask for scans and get them regularly. I get a brain MRI every 6 months and a PET/CT every 6 months.

As to labs I have my tumor markers (CA 27-29) done every 3 months and I have a CMP every 4 months. I wouldn't get half of this if I didn't push for it. So it pays to speak up.

Chelee

Wow Chelee,
I didn't know you were getting all that special treatment! Good for you, especially if it makes you feel more confident.

And Goops, Chelee's right, getting regular scans, tests etc as she is getting is not generally "standard of care". The norm is as your oncologist told you, blood work, clinical exams and I also got chest xray. Not to scare you, but none of these caught my extensive liver mets - which were discovered after I presented with some gastro symptoms which went away on their own while the testing went on (and on and on). Thank God for that, but it would have been nicer I think to have it caught earlier. I was very early stage (before adjuvant Herceptin).

I think if I were you, (my opinion only) being at higher risk because of your stage (but lower since you got Herceptin), I'd ask for a baseline and annual CT scan and maybe brain MRI just to keep an eye on things and be especially diligent with the blood labs. Although tumor markers are not useful for everyone (the normal BC ones have NEVER been significantly elevated in my case), if it gives you reassurance it won't hurt to get those too. I'd consider carefully before asking for super frequent scans - why expose to more radiation risk than you have to?

Finally, as this is not all "standard of care" if you want these you may have to fight for it as Chelee did.

In the last 45 days I have been through a Muga Scan, an Echo, a Pet scan and 2 CT's. I had some lesions on my liver and while trying to ascertain if they were cancer they found enlarged lymph nodes - luckily it turned out that nothing was cancerous. I get a little concerned about all the radiation.

My friend from St. Louis started to feel pain in her chest, she was concerned that it may be cancer - it turned out she had radiation burns from all the tests they have put her through. This is a woman who was treated only chemo - so the radiation burns were just from tests.

I have great insurance so if there were no risks with the tests I would push for them - but the radiation from them concerns me too. It is hard to know what the right answer is.

Let us hope that the Herceptin will keep us stage 3 people (as well as everyone else) healthy.

Hi goops!
 

My onc does blood work, tumor markers and physical exam every 3 months (I also see surgeon every 6 months for breast MRI and Mammo.) I did routine scans immediately after finishing radiation, which led to 2 scares (I have radiation scarring on my lung.) I do not want to do scans without symptoms now. Most women on this site feel differently, but that works for me.
Linda

Good Morning Goops,

My onc. saw me every 3 - 4 months after treatment was complete. When I hit the 2 year mark the schedule changed to every 6 months http://www.her2support.org/vbulletin...cons/icon7.gif YAHOO! At each check up I am examined physically, and blood work is taken. Just a basic blood panel is run and liver enzymes are checked. That's it. Like most, my onc. acts on the philosphy - if I have symptoms, tests will be ordered. That being said, my onc. is very good about ordering tests if I have concerns. And, of course, I have AND thankfully all tests have been normal.

Have a great day and God Bless you,

Mary Jo

I was initially diagnosed Stage IIIc and after completion of treatment my follow up was to see the surgeon every 3 months (still do), oncologist every 3 months (now every 2), HER2 serum test every 12 weeks, brain MRI once a year (now every 3 months), and CT scan if symptoms. I'm now Stage IV and I have CT scan done every 3 months.

Oncologists differ greatly in follow up care. Some do tumor marker tests - some don't. Some will do rountine scans every 3-4 months or every 6 months - some will not unless there are symptoms.

I don't think there are any two oncologists who have the same follow up for breast cancer patients. A lot depends on your stage, hormone status, and of course node status. Most oncologists will do routine blood work, maybe a chest Xray, and a general exam and that's about it.

Cancer treataments are becoming more individualized and less like cookbook recipes. Oncologists are thinking more out of the box, but not all oncologists. You have to feel comfortable with your treatment. If you want more follow-up then it may give you peace of mind to find an oncologist who will do that.

I suspect that if I pushed it I would get more follow-up. As for now I am still being treated, I am done with Chemo but I have to have 28 treatments of radiation and Herceptin until Sept. of this year.

In some ways I think a lot of follow up may put me through a lot of anxiety which isn't good for me either.

It was kind of strange though - Chemo was very hard but I got through it with a pretty positive attitude. I expected anything after that to be pretty easy - but I found when I wasn't getting chemo treatments I started to worry more about my cancer returning.

I just finished my yr long of herceptin and my oncologist wants to see me every 6 months with tests for CBC, chemistry panel, liver panel, CEA, CA 15-3 and CA 125.
harrie

Goops, Since I am a stage III'er with 5 positive nodes & was NOT able to have rads, I believe that caused me even more stress to get the 6 month scans . You mentioned feeling like the follow-ups might cause you more added anxiety. Your not alone as many of the women feel this way and choose not to have scans unless they have symptoms. We all have to do what we are comfortable with. Some don't even like to do tumor markers...we are all different.

Myself I've had a really bad sharp pain just below my right rib that radiates downwards and its really starting to worry me. So for me a scan is the only thing that really helps ease my mine. In fact this is the *first* time I've went passed my 6 month PET/CT. I wanted to be checked more the first two yrs since I was told I was at a high recurrance rate. I was feeling a little more secure this time and that's how i managed to make it 9 months without a PET/CT this time. (Big step for me.) I really don't like the added exposure to all the radiation from the scans...but I feel better when I get the all clear...especially when I have pain like I am now.

So in time you will learn to do what makes you the least anxious...be it scans or no scans. Just learn to take one day at a time. (Easier said then done...believe me...I know.) One last thing...you mentioned feeling more stressed when you finished chemo. That is SO normal. I felt that same way and most of the women and men here will tell you the same thing. It makes you feel like your not doing anything to keep *it* away. Its scary at first but it DOES get better as time goes on...this I promise you. :)

Chelee

Hi Goops. I was a stage III'er with seven positive nodes. I have CT and bone scans every six months and blood work and physical exams every three months. I am 2 years and three months out. -

Thank you - it is nice to see some stage 3'ers doing well a couple of years out - we should start the stage 3 club :)

Goops,

I'm a stage III with 5 positive nodes and coming up on my 3 year cancerversary on the 16th. I do not have tumor markers, nor regular scans, but my onc will test or scan if I have a concern. The rule of thumb is if something lasts for two weeks, have it checked. Most of my worries have been resolved before two weeks have passed.

I think that anxiety when chemo is finished is somewhat normal. When we are in an active stage of treatment we feel like we are actively fighting. When that treatment ends, we feel somewhat adrift--like we are no longer actively fighting. Given a little time your anxiety should lessen. Just remember you are getting the optimal treatment.

There are many of us that were dx'ed stage III that are doing well. Hang in there, it gets easier with time.