Is she for real!! After Treatments

Jo, I don't have any routine scans.  My docs told me that the survival rate in the case of recurrence doesn't change whether you find something on a scan or it shows up clinically.  That does not mean that there is nothing they can do to treat you.

Jo,

I too had Stage I and have never had a scan.  In the first year, I had appointments every 3 months with my oncologist and almost as many with my breast surgeon.  As of July (a year and 3 months after mastectomy) I was "graduated" to every 6 months. I have mammo and ultrasound once a year on my remaining breast, and MRI of both breasts once a year halfway in between mammos.

The U.S. National Comprehensive Cancer Network (NCCN) Guidelines for treatment of breast cancer say that CT and PET scans are not routinely recommended in early stage cancer -- only if "symptoms or other findings suggest that cancer may have spread to other organs."  Also, "PET scans may be used to initially evaluate patients with metastatic or recurrent [their emphasis] breast cancer, or... if results of other tests do not clearly show whether the cancer has spread beyond the breast to other areas of the body."

A small study reported last November strongly supports combined CT/PET scan followup for women who have had inflammatory breast cancer (IBC).

But in general, for early stage breast cancer, the radiation exposure and costs of CT/PET scans are not warranted for routine follow-up when there is no other suggestion of recurrence or mets.

I hope what your onc MEANT (but obviously failed!) to communicate is what Tina/abbadoodles said: that the treatment and survival rate are the same if recurrence/mets is discovered by symptoms, or earlier on a scan.  It's certainly not true that "nothing can be done"  -- there are treatments that can be given.

I had all the tests right after diagnoses.  I had a CT scan of chest and abdomen, bone scan (different than bone density), MUGA (to see if my heart was strong enough for chemo).  Then when the CT scan came back it showed something on my liver.  I then had a CT/PET scan..it was nothing.  After chemo, mast and rads and more chemo I haven't had anymore scans.  Only have mammo once a year.  I did not have reconstruction.  I go to a well known hospital, Duke, and they don't do MRIs even though my breast is dense.  I would only get scans if symptoms occur.  I had 5 positive nodes out of 7 with extranodal extension (means cancer escaped the nodes).  For me, I don't want routine scans.  It would cause more anxiety for me.  I'm hoping you misunderstood your oncologist.  There is many things to do if one gets metastasis.  You either need her to clarify what she meant, or seek another opinion.

Shirley

Hi Jo and everyone,

I am really glad to see this post and maybe someone else can benefit too by bumping it up. 

Earlier this week, I cancelled a bone scan that my oncologist ordered simply because I cannot handle the stress of it right now (I flatly refused a CT scan).  I feel absolutely fine and have no symptoms-- he just all of a sudden ordered it in December, after I had been told several times that I would not be having post-treatment CT or bone scans.  I suffered a lot of anxiety because of this sudden about-face at the cancer center, and I was not given a reason why.  (no complaints about symptoms, no red flags, etc.)  I have to wonder what kind of $$$ the cancer center gets for the scans, even though they are done off-site at a radiology center across town... plus, just prior to that, my state insurance announced they would probably be broke at the end of the year... hmm, strange coincidence!

Thanks for listening and best wishes to all!

Mary Jo

Hi Harley!

I'm so glad to hear from you and you look absolutely great!!  I bet it is gorgeous today down in your area of NC-- it is a sunny 66 degrees here today, and would you believe it was a freaky awful 4 degrees this past Tuesday morning!

Thanks for your encouragement-- this is one time that I have gone with my gut feeling, instead of second-guessing myself.  And you are so right about our stress level!  I have also thought about the stress level of my husband, kids, and parents-- they don't need it either, because they've all been right here with me thru it all.  The additional radiation and radioactive junk they put in the body concerns me too.

This may sound nutty, but I would be very interested to hear from someone in-the-know as to if and how doctors and cancer centers benefit financially from ordering scans from a separate facility...

Hugs back to you!

Mary Jo

My onc told me the same thing -- no scans unless a symptom presents.