what tests are recommended

maa764

Hello, I have a question which I asked my onc. but I want to see what other drs recommend.  I had stage 2 a breast cancer, er/pr- her+. I just finished my last herceptin treatment after chemo.  I had a bilateral mastectomy after chemo and already had a total hystectomy.  Other then going to the onc every 3 months and breast surgeon 1 time a year for breast exam what should be done.   I only had mamo and mri after they discovered the lump.   I never had any type of scan to rule out cancer in any other part of my body.  The onc. did blood tests but only until my chemo ended in Oct.

What should I be asking for?  Dr told me they just listen to patient.  Since I had a lump that I could not feel and neither could drs I am concerned that cancer could show up somewhere and not know about it.  After I have endured I want to be sure that cancer is not returning and I don't want to worry every minute of the day about it.

maa764

I am also brca1+ 

HLB

Some people get a tumor marker blood test but its sort of up to the dr because they are not accurate for everyone. Some do nothing and just wait for symptoms to appear because they say having regular scans or testing does not prolong survival. I don't know if things are done differently with brca+. I had the tumor markers done for 8 years after my treatments were finished and that is how my mets were found. Normal numbers for 8 years then suddenly jumped up so we did scans and bone mets were found. Obviously I'm glad to have the tests because I never had symptoms. However, some people have normal markers and obvious mets, some people have high numbers and no mets. Luckily for me they were an accurate indicator. I would want some kind of monitoring but that's just my opinion. You might want to ask about the ca27-29 test and see if your dr does it. If not and you really want it, I would look for a dr who does the test. Or you could try to find someone who would do a scan now, just to make sure there are no mets right now and to get a baseline to compare to in case you ever need a scan in the future. Good luck to you and I hope everything goes well for the rest of your life!

pajim

maa764, I am a little surprised they didn't do a CT scan to make sure there are no mets.  But assuming there are none, standard followup is a mammogram every year and not much else.   They could do blood tests for tumor markersas HLB suggests.

They found my mets when I broke my back.  A total surprise to everyone including me.  I had seen my oncologist a month before and told him I had a sore back but he didn't think anything of it.  My MO told me that it isn't normal to do scans.  They wait until there are symptoms.  He also told me that it doesn't help to find the mets very early.  Treat them the same.  CT scans are a lot of radiation (which causes cancer LOL).

It can be very hard after treatment is finished.  Takes a long time to stop worrying about recurrence. 

Wishing you the best and hoping you can lower your anxiety level.

bevin

HI there, I have regular 6 month CBC, metabolic panel and tumor markers. I also have mamo's every 6 months for the first 3 years. Then annual. I also have annual chest , abdoment and pelvis CAT scan and annual bone scan. My Oncologist feels the scans are worth it and the blood tests give another window into whats going on in our bodies.

I wish you luck with everything and if you want a more watchful approach, thats fine, but if you want a more evidence based approach I am sure you can find an oncologist who will manage you closer too.

Good luck

HLB

The general thinking is that it doesn't change treatment or survival but if I had waited for symptoms I may have needed surgery or rads to my back. As it is I am a year out from mets and still have no symptoms and a normal life. Some people have debiliting pain with their bone mets.

Poke

I am wondering the same thing maa764 (which is how I ended up on this thread). I am BRCA2+ and I don't think the recommendations are any different. I have been fretting over never having had a CT or PET or bone scan, but the recommendations state that for stage 1 and 2 they are not necessary unless there is reason to suspect the cancer had spread. My nodes were negative and I have had no other complaints or symptoms since this whole thing started. I go back and forth on being ok with this. Thanks for asking, I look forward to more input from everyone

maa764

Since I have had a total hystectomy and bmx with reconstruction I don't get mamo's or paps etc. So other then the dr asking me questions I don't have any montioring.  A breast exam 1 time per year from surgeon. I did ask the breast surgeon the question when I went after my port removal.  She said since my tumor was contained and removed and was not in nodes then they are confident all cancer was removed first by lumpectomy, then chemo and then bmx.  If it was in the nodes then other tests would be done.  Makes me feel a bit better that all drs are on same page but hard to take in when you have had cancer and don't want to deal with it again.  I just want to live life and be happy and not worry every day that it will come back - it has been a rough year but I am stronger and closer to my family and friends then I have ever been. 

edwards750

bevin - why do you have all those scans when you have an early stage breast cancer and an Oncotype score of 11? My score is exactly the same as yours and my Onc never orders scans plus my BS said I can go to annual mammograms now after my last one in April and I am only 2 1/2 years out. I also do not have any tumor markers tests. I asked my ONc nurse about that and she said there was no need to.

lola12

I am stage 1 with unilateral mastectomy. I am almost 3 years out and I visit the oncologist every 3 months with a rotating schedule of either a mammogram or MRI every 6 months. Tumor markers are done at every 3 month visit right in the office with immediate results. 

Due to a rise in one marker, I recently had my first bone scan. Turned out to be a rib fracture and my AI causing the rise in this bone tumor marker- alkaline phosphatase.

bevin

HI Edwards750, Its just the protocol of the national cancer institute in the top 50 rankings that I go to. I'd rather have them be cautious and watchful. So this protocol is fine with me.

curveball

@maa764, a study was done years ago, comparing intensive followup (with periodic scans, tumor marker tests etc) to a minimalist approach (using patient history, physical exam, and mammogram, with scans or tests only to investiage symptoms). The results showed that progression wasn't discovered any faster using intensive followup than it was with the minimal approach. That's not what I would have expected, but that's what the data showed. If I understand the abstract correctly, intensive vs minimal followup also didn't affect ultimate survival time. Several variables were analyzed, and the only ones that did affect total survival were whether progression occurred within a year of original dx, and the location of the mets.