Almost 4 years breast cancer free and doctor won't do any tests

caroleb66

Is that abnormal? I was diagnosed March 2010. Had 8 rounds of chemo and a bilateral mastectomy with lymph nodes removal in August 2010.  I started reconstruction right away but I had complications and have had numerous surgeries over the last 4 years. After some research I opted not to undergo radiation. I am 48 and went into early menopause so my Oncologist put me on Arimidex. Last December for some reason switched me to Tamoxifen and 2 weeks ago to Femara. Every time I see her I ask her about getting some sort of scan but she says the are useless and can cause cancer. She feels my lymphnodes, asks a lot of questions but that's about it. Should I seek a 2nd opinion?

RebzAmy

Hi Carole

I don't have scans unless i say something is wrong.  I believe most people are only scanned if they show symptoms.  I have regular six monthly check ups where the areas are felt and my lymph nodes checked.  I prefer not having scans so am relieved I don't get offered them as standard - I'd find it too stressful

teachermom4

Hi, I'm only three months out but my MO has said the same thing--no scans as long as I remain symptom free--only bloodwork and Dexa scan every two years to check on bone density. She said the risks with scans outweigh the benefits. But I wonder about this as well. If we wait, then by the time any recurrence would be found, it would've been brewing a long time!

Hopefully others will chime in here.

Did you ask your doctor why she switched your medications? Just curious.....

caroleb66

I was symptom free when I was diagnosed , that's why it scares me a bit. Chemo also brought out a dormant disease. Charcot Marie Tooth disease, it cause atrophy of my calf muscles and makes my ankles very weak. I have no balance ( very high arches) and easily fall down. But since I have been off the Arimidex it seems to be better. I don't know why she switched me, I was already in menopause when I started. She didn't remember why we switched to Tamoxifen and now says Femera is better for post menopausal. I have been on it for a week now and it seems to cause diarrhea.   

besa

Generally scans are not done, as other have said, unless there are symptoms. (You can look up the NCCN guidelines for bc treatment on the link below. I like to use the "physician" info - not the "patient" info.   Hopefully the link will work.   http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#site    )

That being said -there is another issue here that might make me personally quickly move to another MO.  In my opinion your MO is not doing a good job of communicating.  There should be medical records saying why she  put you on tamoxifen - your MO telling you "she doesn't remember" why the switch was made is totally unacceptable to me.  If she doesn't remember -how about just looking it up in your chart.....  And - at the time the switch was made - the reasons should have been clearly explained to you.    You need to understand why things are being recommended and with that knowledge you need to be able to personally agree with the path that you are on (medications, surgery, etc.) You are a consumer as well as a patient and you deserve to be comfortable with your MO.

exbrnxgrl

I agree with besa. The only thing that raises concerns with me is your mo "not remembering" why she changed a tx. BTW,even at stage IV, although we do get periodic scans, many mo's keep it to a minimum, as needed. I was getting scanned every 3 months but since I'm doin dwell, I now go every 6 months. Reason? Radiation exposure. Even in someone who is stage IV, that is a concern.

voraciousreader

carole...adding to what was mentioned regarding NCCN guidelines, ANY DOCTOR, treating you for ANY OTHER ILLNESS should at the very minimum familiarize themselves with CMT AND should be communicating with your  treating physician for the CMT.  Having a rare disorder, in your case, CMT creates a whole range of questions.  Speaking as the wife of a husband who also has an orphan illness, AND who has a friend with CMT, one has to be very careful with meds which may interact with your illness.

O/T....Have you seen the DVD Augustine?  It is about the life of Dr. Charcot.