Words of Wisdom???

 

Thank you so much for posting.  As lonely as it is being a triple negative fighter it is even more lonely to be fighting metaplastic breast cancer.  So little is know and it makes it very frightning.  I too have been doing lots of research and too have found that following the TN treatment plan is our best bet. 

 

My mother is currently on chemotherapy.  She is receiving AC X4 dose dense followed by Taxol X 4 dose dense.  I am seriously considering talking with her onc about having the Taxol X 12 weekly.  I just don't know what the best choice is.  I have read articles that show that TNs seem to do a lot better with the X12, but these studies compared the weekly taxol to taxol every three weeks.  I would love to find a study that compares weekly taxol to the every two week dose dense taxol. 

 

I too am very concerned about her not receiving radiation with a masectomy.  Her onc told her she would only do it if something unusal was found at the time of surgery.  What really concerns me about her dx, as you know, is that lymph nodes do not always show up positive.  Therefore, I feel that all metaplastic breast carcinomas should be treated as lymph node postive and handled a bit more aggressively.  This includes radiation.  Hopefully we will have time to find a dr that will do this, if her dr continues to say no.  We actually have an appointment with the radiologist this week, so I am very anxious to find out what he has to say.

 

She did not receive a PET scan.  Her original dr (we have since changed) told her that she did not need one since she was having a complete body bone scan.  She also had an MRI of the breast and lymph nodes and CTs of the pelvis, abdomen and chest.  I do hope this was enough testing.

 

Thank you very much for posting.  I will be watching for your future posts just incase your dr maybe comes up with an idea that my mom's dr didn't.  I too will send you a message if my mom's dr comes up with anything on this end.

 

Sending lots of hugs and prayers!

 

 

 

Would you mind if I asked what stage you were diagnosed with?  Any lymph node involvement?  My mom is considered stage lla with no lymph nodes, however her lymph nodes have not been biopsied and will not be biopsied until after chemo when she has her surgery.  This doesn't really bring me much comfort since being negative after surgery doesn't really mean she is negative now.  Also, I asked about the size of the tumor, since it was estimated at 4cm.  I was told that they only do radiation with a masectomy if it is 5cm.  Does one cm, especially when the size is estimated, really make that much of a difference?  Also the radiologist told me the size wouldn't matter anyhow because they will be basing treatment on the size of the tumor at surgery, not the original size, which makes no sense to me.  So if someone with a 5cm tumor has a masectomy and then chemo, they would get radiation, but if they choose to do chemo first, they wouldn't.  I'm sorry, I don't really expect you to answer my questions, I'm just venting a bit.  Why does protocol have to be followed so closely, especially when the protocol is based on the "standard" breast cancer?