Is there a standard for follow-up tests?

G. Ann · 03-22-2006, 10:15 PM

For those who have had MRIs, PET scans, cancer marker tests, did you have reasons to warrant the additional tests such as positive lymph nodes or new symptoms? Or are the tests you've received just the standard? Did everyone receive MRI or PET scan before their tx began? I've been reading comments since Fall 2005, mainly focusing on Herceptin, but now noticing frequency of follow-up testing mentioned. It seems to be automatically ordered by most onc's.

I've never had brain MRI, breast MRI, or any other MRIs, PET scan, bone scan, and no cancer marker blood work. I was seeing onc every 6 months after first year, now 3-4 months for onc visits since beginning Herceptin 1/06. I have had 2 MUGA scans, one before chemo and one before beginning Herceptin. I was originally Dx'd 2/04, HER2+, er/pr-, stage 2 invasive ductal BC, mastectomy (2.5 cm tumor) with 15 nodes removed (all negative). Had 4 AC/Cytoxan tx's ending 6/04, but no Taxol/taxotere.

Since 8/04, remaining breast has had 4 cysts-2 FNA's performed, 2 other lumps checked by FNA but NED, and now increase in microcalcifications from latest mammo, which report stated "probably benign." Considering removing remaining breast, mainly for anxiety. Now I'm wondering about lack of other tests performed. Thanks for info.

julierene · 03-22-2006, 10:43 PM

My Onc thinks that Brain MRI's are almost a waste because symptoms presenting are normally more accurate than any benefit you may receive from a scan every 3 months or such. We will probably do a PET every 3 months. I might get him to do the brain while we are at it. But he has mentioned that PET in the brain is almost a waste of time too because of the activity and the sugar. So, I dunno...

tousled1 · 03-23-2006, 06:11 AM

I was diagnosed late Oct 05, Stage III ER/PR--, HER2+++, grade 3 tumor. I had a bone scan, CT scan, MRI of the unaffected breast, and an echocardiogram. Started neoadjunct chemo early Dec 05. My oncologist just ordered an MRI and EEG of the brain since I passed out a few times. MRI was fine and today I get the EEG. Oncologist also wants an echocardiogram every 3 months.

juanita · 03-23-2006, 06:43 AM

I haven't had any other tests since I was dxd in 9-04. I do have the MUGA every three months since I started herceptin. And have a ca27-29 when I have a blood test every three months. I was stage one with no node involvement though so that might be why no other tests.

kristen · 03-23-2006, 06:49 AM

Hi G. Ann,
Most onc. don't do any more follow up then yours is doing and that is because ASCO only recommends a mamm and a chest x-ray yearly.
I was on the Herceptin Study and had more Muga tests then your gettng. I would have to look it up and see when they did those. As far as getting my tumor markers ran, my onc. is just humoring me, she doesn't believe in them. She thinks symptoms will be present before TM numbers rise.
My onc and breast surgeon did see me every 3 months for follow up for 2 years and then will go to every 6 months for 3 years.
The only reason I recieved brain MRI's is because I have had headaches for years and my neurologist is very proactive and she wanted them done every 6 months for the first 2.5 yrs.
Any other tests that I could talk my onc. into I did. That was for my peace of mind. But not every one needs that. (It's my control issue) The tests your reading about, some oncs are proactive in getting them for there patients and others go by ASCO standards. Some of these ladies might have had symptoms that they needed to rule out. I don't think your missing out on anything unless you do. It's really what you need to feel comfortable. That is how I look at it anyway, but that is just me.

Kimberly Lewis · 03-23-2006, 07:22 AM

Hi - Thanks for asking the question! I am in the midst of a hard time right now as I am looking for an Onc who would not dismiss a brain MRI out of hand. So far I have had 3 no's and it is distressing to me as I do think one would be a good Dr. I am suffering from information overload but feel that I have invested close to 90k in my health to get through 2 mastectomies, Chemo, rads, and now herceptin. I want to be proactive and not wait till I have a huge met. somewhere before we start to treat it! My breast tumor was 5cm before anyone noticed it! This is such a hard thing to deal with emotionally. I struggle to sound rational yet break into tears and fear I am being dismissed as an overemotional, chemically induced menopausal nut. wahhhh wahhh wahhh
But everything else is great... I am back to work teaching pottery, just entered a art competition, new shows coming this year! So life does go on. Thanks everyone for this wonderful website and the encouragement it has given me to just not be so ALONE!!! love and hugs, Kim

Sandy H · 03-23-2006, 07:29 AM

I am perhaps, an exception to the rule, but I do have IBC (inflammatory) and have a bone, and cat scan every 6 months on my oncologist recommendation. Have never had a PET scan not recommended by oncologist for me. I am 5 years our with skin mets. Everyone thought I would be gone by now or at least at the end stage of this disease. So far no bone or organ involvement that we know of. If I present with any symptoms what so ever my oncologist will get me the necessary test ASAP and that has happen a few times which turned out to be nothing. Sounds like you are within the guidelines with no node involvement and early stage. hugs, Sandy

Maggie · 03-23-2006, 02:54 PM

My oncologist feels the same way. I asked him if I was going to get all these tests and he said no! No tumor markers, either. I am ER/PR neg and HER2 +++, stage 1 node neg, on herceptin every three weeks and he does see me before each treatment, examines my breast and feels lymph nodes and will talk with me and my husband. I do have a Muga scan every 3 months. I really do like him. We all hope we have good doctors looking after us.

I'm glad this subjest came up because I thought it was only my doctor that wasn't prescribing all these tests.

jhandley · 03-23-2006, 03:58 PM

Hi G.Ann

I had a few tiny micro calcifications in my breast (4 years after first tumour removed). As my breast had changed shape a little I had a core biopsy and found another tumour (ultrasound showed nothing). maybe you should ask for a core biopsy.
cheers
Jackie

Cathya · 03-23-2006, 05:02 PM

It seems to be standard for breast cancer patients here in Canada (or at least in Ontario) to get chest x-ray, abdominal ultrasound, bone scan, and mri upon diagnosis. I had all of these after my lumpectomy. I had a 3 cm tumor, neg nodes but 1 cm tumor in the supraclavicular node. Then after chemo (4 AC, 4 Taxol...the last one with herceptin and then herceptin ever since), radiation including boosters particularly to super node, my onc had me re-staged and had all tests run again.....that was unusual. Oh yes, MUGA before chemo and now every 6 weeks as my score is 48. Don't really know what he plans but I finished radiation in the summer and still see him about every 6 weeks.....likely about the MUGA but I am glad anyway. He would get me a brain MRI if I had symptoms (real or imagined...lol) but so far I'm focused elsewhere.

Best regards,

Cathya

PatS · 03-23-2006, 05:55 PM

It seems to vary according to onc. but I was diag. stage 3, July 2002, and when I see my onc. every 6 months for a check up she does bloodwork, including CA 27.29. Also, once a year I have a bone scan and chest/pelvic/abdomin CT.

Pat

G. Ann · 03-23-2006, 06:23 PM

Hi Julierene, Tousled 1, Juanita, Kristen, Kimberly, Sandy H, Maggie, Cathya,

A big thank you for taking time to pass along your information. What a wonderful resource this website is to learn more and to have my spirit lifted. Seemed to be a few differences as far as types of tests ordered and frequency, but I was encouraged by several comments that my care fell within the guidelines. Some of the extra testing makes sense for those having symptoms.

Being educated certainly helps "us" approach our onc's. Our "peace of mind" is very important in requesting tests and overall coping. I think being honest with our onc's regarding the emotional side of BC and our symptoms, during treatment and after, is so important. On my last onc visit to plead my case for Herceptin, I think he finally understood what I was thinking. I definitely was not being the compliant "good" patient and shared with him more of my thoughts and fears than ever before. Of course, going outside of my medical group to get that second onc opinion (after being discouraged by primary onc to get Herceptin) helped close the deal for Herceptin! Thanks so much for sharing.
G.Ann

Sherryg683 · 03-23-2006, 08:57 PM

I have to say that if I had an Oncologist who wouldn't give me the tests, I would find a new Oncologist. This is our life we are talking about. Mine is giving me CT scans every 6 weeks till we clear the mets up. Then I will be doing scans every 3 months for the first year and every 6 months there after. I got paranoid about brain mets and he ordered a scan for me right away, he said that I wouldn't feel better unless we got the scan. Because of the HER2 chance of brain mets, he said that we are going to keep close eye on it and do the scans regularly. Sometime when you wait for symtoms to develope it may be too late. I still believe it's better to catch early when there may be only one spot than to wait for symptoms and have numerous tumors. I have to say that I have a young Oncologist who is very sympathetic with young children himself. He did his internship at one of the finest hospitals in the country and is just a joy to be around. He's really into making his patient feel secure, which is something I need...sherryg683

julierene · 03-24-2006, 10:57 AM

I think my Onc wants to test the brain somewhere in the range of every 3-6 months. I am ok with that. He did mention that catching the brain tumors before symptoms, may only be 1 month difference. If you pay attention to the signs, you can go in right away when you know you have them. Really though, brain mets are hard to treat no matter what stage you get them at and symptoms usually present early on. Either the treatments will work for the brain mets, or they won't. That's my opinion on the matter.

Lee · 03-24-2006, 12:08 PM

All I had to do was ask my onc about getting a brain MRI, and he said "I think that's a reasonable thing to do". Three days later, I had it done. He was fully aware of the new recommendations to watch for brain mets in herceptin patients and we are going to keep a close eye on my brain for a while. He also had no problem with me getting a 2nd opinion at Mayo. I really don't understand oncs who pooh-pooh their patients requests for tests, and I'd be looking for a new one if mine did that. Once I'm done with chemo (in 2 more weeks - YAY!) I will be getting follow-up CT scans and brain MRIs every 3 months, at least for the first 2 years. Hopefully I will remain NED and we can relax that schedule a little after the first 2 years out.

Lee · 03-24-2006, 12:18 PM

...and how you are responding to treatment. A stage IV patient is probably going to be watched a lot more closely than someone who is stage I or II, simply because the chance of new mets developing is much higher.

I'm finishing up chemo in 2 weeks, am currently NED following a few mets in my liver and one on my pelvis, and my onc plans on doing CT scans and brain MRIs every 3 months for the first 2 years to keep an eye on things. After that 2 years, I'm not sure what the plan is, but hopefully I will still be NED and we can relax that schedule a little bit.

I think we all have to educate ourselves, be advocates for ourselves, and don't just complacently go along with everything they say without questioning. Hopefully our oncs will appreciate this. I know mine does!