tests resutls - extremely inaccurate

Mantra

My sister had two ultrasounds and one MRI before her surgery. The tests showed likely one lymph node was involved. We were prepared for her post op pathology to show perhaps 3 nodes involved. But sixteen!! The pathology also is now ER +, PR -, Her2 +

The news just keeps getting worse. Dreading getting the results of her bone and CT scan.

Has anyone else had an MRI that was so wrong? How is it possible for two ultrasounds and one MRI to be so inaccurate?!

The surgeon removed 34 nodes on two levels and the cancerous nodes were on both levels. She said there is no reason to go back and remove any from the 3rd level. Not sure how to interpret "no reason". 

pejkug3

Are you saying she has 16 positive nodes?

It's my understanding that MRI and ultrasound have limited accuracy in determining node involvement.  That's why one isn't 'staged' until after surgery.

I'm sorry you got such disappointing news!  I cannot imagine how you must be feeling.  When are you expecting CT/Bone scan results?

pejkug3

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Mantra

Yes, she had 16 positive nodes. She had her bone scan today. After a lot of pushing I managed to get her CT scan booked for Monday. Her MO is booked for July 20 but I've been trying to get that moved up to next week. Still working on that one and will get an answer on Monday.

Omaz

Mantra - I am sorry about your sister.  I hope she is coping alright.  She is fortunate to have you by her side.  (((Hugs)))

amlg1

When I had my yearly mammo i was called back,to do compression mammo,but also U/S.My mammo showed maybe 2 enlarged lymph nodes,same with U/S.To make a long story short,during axillary dissection,my Dr. didn't like the feel of my lymph nodes and ended up taking out 34,3 levels,and 31 were positive.Here I was thinking maybe 2 nodes.Good luck.

Kasi

I am so sorry about your sister. U/S and MRI are definitely not 100% acurate. I was told that it didn't look like I had any node involvement, but only surgery could tell. Still, I went into surgery optimistic that I didn't have any positive nodes. I was disappointed when I got the call that I did.

Fitz33

Mantra, I'm sorry your sister has to go through this.  I had a CT, bone scan and MRI along with the various kinds of biopsies.  My BS told me she would be taking out 2 levels of nodes and when she did it was in both levels, 7 in one and 2 in the other.  Some women are extremely upset when their BS decides to do that and argue the numbers down but I figure I chose the best BS I could in my area and if she felt that 2 levels needed to be taken out then I would go along with her.  Thinking about it now, what if I argued for one level and then unbeknownst to any of us there would be 2 nodes left in a level and we know what happens next. 

When I did have my surgery the size of my tumors were much larger than any ultrasound or MRI showed so that was pretty shocking to me.  I was told by my onc that prior to surgery it's never really known for certain how much involvement there is, for instance, if it's very deep like mine.

Sorry you have to be here and are so upset but please know that there is life ahead for your sister and she'll have everyone here to help her and you to get through this.  It will get better. 

edwards750

Kasi - me too. My BS said he was pretty confident I didnt have node involvement either and then....back comes the Path report which showed a micromet in the SN. He was stunned too. So no all tests are not completely accurate but they are the best we have now and no law says you cant have the test done again. I know a dr missed my brother's melanoma. Had my sister in law not insisted he be looked at by another dr he wouldnt be alive today. Scary. They are human and humans operate the machines. When in doubt always get a second opinion. I had already decided I was going to if the ONC recommended chemo. The oncotype test saved me. Score low and tumors small...did RADS. Keep us posted. Diane