Her2 positive and no test

Patb · 12-20-2006, 10:58 AM

Hi all
I read all the post and am newly diagnosed in June, Stage I, No Nodes, 1.7 centimeter, ER+PR- Her 2 positive+3, Lumpectomy, clean margins. I had four A/C every three weeks, radiation, am taking Arimedex now and have started Herceptin weekly for one year. I have had no test such as cat scan, MRI, pet scan, etc. The only test I have had is two Mugas which were okay. Since I see all these post I wonder if I should ask for test because they just say not needed at this time. I know this is an agressive form of breast cancer and want to do all I can but I am not sure what I need at this point. Any answers from the most informative women and men I have ever met whould be truly appreciated. I don't want to overtest but do want the best treatment.

Thanks
patb

Karen W · 12-20-2006, 11:06 AM

I was also diagnosed with stage 1 bc. I had a 1.3 cm tumor, node negative, er/pr+ and Her2+++. I did not have scans either.

Karen

AlaskaAngel · 12-20-2006, 11:28 AM

Hi you two. Count me in as a T1c (Stage 1, 1.6 cm, HER2+++, ER+/PR+.) I put my opinion on the Eric's thread about 2 questions....

4 years out and NED,

AlaskaAngel

rinaina · 12-20-2006, 04:19 PM

I am her2+ no nodes,er/pr negative and had ac, rads and now herceptin and my onc doesn't order routine scans either at least not at this point. There are a lot of us on here who have never had scans but many who have. Certainly if you are having any symptoms that last more than a few weeks, bring it to your onc's attention and perhaps then a scan may be ordered.

atdec05 · 12-20-2006, 06:43 PM

Hi,

I also haven't had scans. I think this is standard for stage 1, node negative women. I am completing my year of herceptin Jan 31 and my doctor said there might be scans at that point. I now I'll at least get a bone density test to make sure the chemo hasn't affected my bones.

I guess the assumption is if you're node-negative, the likelihood the cancer had spread is very low.

- Anna

tousled1 · 12-21-2006, 11:37 AM

To put your mind at ease, I don't believe that scans are routinely done on Stage I patients. I am surprised that upon initial diagnosis that no bone, CT scan was done. If it would put your mind at ease, tell your oncologist that you want the tests done. The only problem may be your health insurance refusing to cover the costs.

suzan w · 12-21-2006, 12:44 PM

After my diagnosis I had a bone scan and a CAT scan. Then I had a liver ultrasound because the CAT scan showed something...it turned out to be nothing. I had routine bloodwork done during my chemo and year of herceptin. Also a MUGA every 3 months. I had another bone scan done after herceptin (my request). My oncologist says she will order any scans I want, but she does not routinely have them done. I go back in Jan. for my first "3 month" check-up.

Adriana Mangus · 12-21-2006, 02:07 PM

I was dx in 1994 no tests were done. I guess docs continue with this practice. Do not worry you were diagnosed stage 1 . I wouldn't be too worry at this point...Have yourself a very Merry Christmas...

Mary Jo · 12-22-2006, 08:01 PM

I'm just curious about something with staging. How can you properly stage when a PET/CT scan isn't done? I mean how do you really know if there are mets or if there are not unless a PET/CT is done?

I was diagnosed June 24,2005. I had a PET scan done on July 5, 2005 to determine if there were mets. They assumed I was a stage 2 by what they felt the size of my tumor was but until surgery was done and a PET/CT scan was done they said they really couldn't be sure.

Thankfully my scan was normal. Nothing anywhere but in my right breast. Also, I was given an MRI of BOTH breasts to see if there was more than one area in my affected breast and to see if there was any cancer in the other breast. Thankfully that test was also negative except for diagnosed breast cancer. I was also given a chest x-ray.

Now though that treatment is complete I go through no scans. Only at the beginning. The only time I will be scanned is if symptoms warrant.

Mary Jo

Bev · 12-22-2006, 10:37 PM

Hi PatB,

I'm 2B, node neg and no scans, other than breast MRI. I guess the thought is there would be lots of false positives causing more invasive testing. Dr. Love's book does not reccomend doing. Who knows? If you need it for sanity, ask for it.