Thread I started for HER2 Stage III'ers

I'm 7 years out NED, stage IIIC her2+  No PET's CT's nada. She does do tumor markers.  I have a breast mri and mammo every year. So far doing great. If I develop any symptoms, the PET and CT will come into play, otherwise not necessary according to my Onc. 

Plant,

Your exactly right in my mind.  I feel the same way and asked...HEY!  How do you know it hasn't spread?  It can travel through the blood too...and it was already in my lymphs.

My Onc said, "if it spreads, you'll know...you'll have symptoms.  There are too many false positives with PET scans."

I've researched this and that is just not accurate.  There are some, but not so many as to make the test unnecessary.

There were varying degrees of cancer in my lymphs.  Two macro for sure, one borderline macro/micro, and one micro/ITCs.  So, while I am stage 3 the tumor board at my hospital has decided (because I refused axilla dissection) to treat me as a stage 2 BC patient.   They claim the borderline and micro don't "count" toward staging....this is how they deny me scans.  (Military hospital)

But cancer is cancer.  When I went for second and third opinions every single place staged me a 3 but was hesitant to go up against the tumor board officially.  In fact, my Onc staged me a 3 too, I came in with my husband and we did the whole prognosis calculator thing.....but when my case went before the tumor board ... they wanted to know why no axilla dissection...my Onc told them I refused, they were "indignant" so decided to Stage 2 me.

Onc called and told me on the phone.  "Good news!  According to the Tumor Board, you're only a stage 2."

REally??

In my records from all my second/third opinions they stage me 3, and give my prognosis based upon it.

Even my BS at the military hospital stages me a 3.

Only my Onc, because of the tumor board, stages me a 2.  (How can you be a 2 with cancer in 4 lymphs?)

My BS told me I am without a doubt a 3.  That in his opinion the tumor board is mistaken because the whole micro/macro thing is fairly new and there just isn't enough research ... And I had cancer in 4 of 4 lymphs, any of which, no matter how small, could mets to other areas of the body.  

Bottom line is this...I went against standard care at the time by refusing axilla dissection...and that's a big fat no-no in the military....and they've decided unless I'm dying...I get no scans.

End of story.

That'll teach me.

I am in the same boat as Tonlee.  I am stage 2B with 3 nodes, and I have never had any scans. My Dr. refuses to order unless I have symptoms.

I just received my staging yesterday. Will be starting chemo on the 9th. I have been devastated the past 24 hours so reading this thread has made my day. To see there is hope makes me continue to put one foot in front of the other for my husband, little girl who's 4, and my 18 month old son. Thank you and hugs to all you wonderful ladies

Momof2-  It is totally overwhelming at first. There is so much information being thrown at us.You will see. After you start your treatments, that you can do this!

Dont hesitate to ask questions.  So many women on here with great knowledge to share.