No further testing...why?

I completely agree with Caren.

did you have any scans at all after DX like bone, pelvic, abdomen  etc..........

I'm not a DR but I would be uncomfortable if my Oncologist told me come back if you have a symptom.

After 5 years i still go every 4 months. The first 2 years was every 3 months.

Hugs

Sheila

I sense you are very uncomfortable with your Onc's no followup aproach.  I totally agree that you need followup, even just for the Tamoxifen.  I think if you get pushed into menopause they have to monitor and switch to a different drug. I, too, am very concerned about the overexposure to radiation from a lot of our tests.  There was a recent article in MSNBC advocating to track our exposure on the films.  It seems doctors don't keep track and repeat lots unessecarily.  There is a lot of talk about Thermography being a useful, totally safe screening method.  It detects excess heat, which I think indicates fast-growing new cells.  I know a lot of insurance companies don't pay for it yet, but my friend pays out of pocket for hers and I think it is only $100.  I might suggest a second opinion is in order here, someone who wants to actively monitor your health.

I just reread your post and although you said your onc said no bloodwork or scans you did not mention if you will be seen every three months, which I believe is protocol when first in treatment.

I also think I did not completely answer your question about baseline scans.  When I was first dx'd my onc did order a bone scan and CT, but said no need for petscan.  I agree that you should have baseline scans, but we are not doctors so these are just our layman's opinion from our own experience and research.  I still think at the very least a second opinion is in order.  You need to feel secure that your treatment is the right choices for you.  I didn't have any uneasiness and I got a second opinion anyway.  I did go ahead with the surgery first because I felt they would all agree that it had to come out.  But before I actually started treatment I did go for a second opinion for peace of mind.  I figured this was something pretty big and important in my life so I better do it right.

I went to Florida's reknowned cancer center which is Moffitt in Tampa.   The onc there concurred with everything my local onc was proposing so I went forward.  But here's the bonus from that second opinion.  There have been some blips along the way and now I have two oncs that consult and decide what we should do.  Who knew?  There is no downside to a second opinion and any doctor worth his salt, will encourage you to get that second opinion.

Remember you are in charge.

In the mean time, I send hugs your way.........................................Caren

My onc also said no scans or blood tests. She said there are too many false positives, and then they have to biopsy anyway which causes danger to the patient. She said that I would get symptoms if my cancer spread to other parts of my body and there would be time to treat them. I trust her implicitly (sp - dont feel like looking it up lol) as she is also in the research end of this and has received many awards. I will be seeing either her or my BS once every three months and have an mri/mamogram once a year. I did mention to her about having an ultrasound on my ovaries and she said that she could understand that but to talk to my gyn.

I thought it was standard to do a pre-op work up of cat scan of chest, abdomen, and pelvis before surgery... looking for mets before deciding on a treatment plan of action. Usually not a pet scan unless something suspicious is found in other tests. Lots of oncs do and lots do not do tumor markers (via blood work) but other blood tests look at liver function etc especially if you are on a hormonal drug and it seems to me they should be done regularly.

Can you ask for a second opinion? Grade 3 may not require chemo but I think you should have confidence you are being followed closely enough.

pam 

Please get another opinion. Gather your pathology report...and anything else that has been generated...surgical report...etc..and make another appt with a different oncologist.  insurance companies pay for second options...call them and let them know why you are doing this.  grade 3...stage II....deserves a second look.

 Lindy,

http://www.nccn.org/index.asp 

If you check out the National Comprehensive Cancer Network site you'll find many of hte guidelines for cancer care and follow up.  For breast they recommend chest x ray and bloodwork for invasvie cancer.  Scans at baseline only for late stage breast cancer (stage III, although I've seen some say IIB and above) and those with symptoms.  Follow up for early stage breast cancer every 6 months, for late stage breast cancer every 3-4 months, and follow up scans only for work up of symptoms. 

I know the Oncs and Radiation Oncologist I talked to use these.  Sounds like your Onc is doing the same.  My insurance company won't pay for anything over and above the guidelines, but I didn't worry about it because my Onc didn't want it anyway.

I've found myself with the opposite problem.  I wanted the scan we did for some bone pain, but it lead to follow up scans, and then they saw something and more scans.  Drove me crazy with worrying and knowing they were coming up.

Everyone is different and you have to find your own way and what you are comfortable with.  If you're not happy, I agree, get a second opinion. I needed someone to help me through those first few months on Tamox.  Without it I wouldn't still be on it.  If you'd handed me a bottle of Tamox and said see ya in 6 months?....I sure as heck wouldn't still be on it at the 6 month visit.  Doing fine with it now though. What gets me fired up is the feeling that we're a nuisance to some docs after active treatment is done. There'll all fighting over you when you have a new diagnosis.  Want you to do your surgery, chemo, radiation etc there.  But after?  Then we aren't bringing much money to the table, especially if we stay in a room asking a lot of questions.  I get the fact that they are busy and someone with a new diagnosis or going through chemo needs a lot of time and attention.  But don't make me feel like its not worth your time to see me. 

My onc will do tumor marker blood tests when I'm finished with herceptin - no scans.  Too much radiation, too many false positives.  He likes to wait until after treatment to do the tumor marker tests, but they just took some from me because I had a bad mammogram.  He said they aren't very reliable either, but better than nothing.  I'm grade 3, her2+.    I'm not as young as you though, I was dx'd at 51.

It's very true that your oncotype takes into consideration your use of tamoxifen.  Now, some people have mild side effects from it.  Some, like me, suffer a lot more.  But, I'm sticking with it for now and I did do chemo.  I think you should do a LOT of research - and at least try it - before you refuse it.  I have some pretty bad bone pain on it, but my onc gives me pain medication.  I don't have problems taking pain meds so it helps me stay on it.

Also, my understanding is statistically there isn't any difference in lifespan between finding mets when you are asymtomtic through a scan or test then after you are symptomatic.  So, that's another reason they don't do it routinely - it doesn't save lives.

I don't think you are being treated inappropriately but I think you should get a second opinion.  I think I'm hearing you say that it was over so quick - surgery and then done - and you aren't feeling comfortable with that.  Your oncologist doesn't seem to be explaining to you her thinking and what the odds for you are, and you might end up feeling a lot more comfortable if you talked to somebody else.   And, if having tumor markers drawn every 3 months would make you feel better, there is no reason it shouldn't be done, as long as you understand that they aren't fool-proof and that they aren't perfectly accurate.

Lindy, please get a new Onc as soon as you can.  My Mother was stage 0-1 borderline.  Her Onc did the same as yours, now my Mother is stage IV and it's not good.

Please, please do not stay with your current Onc.  What has happened to my Mum could have been prevented.

Take Care...