wendyd

Question

Hello,
I have recently had a WLE &amp; SNB procedure and the diagnosis was confirmed as Metaplastic carcinoma - spindle cell type.&nbsp; Sentinal nodes x 2 both negative and surgical margin was clear. As is usual with this type of rare tumour it was triple negative.
There was also multifocal classical LCIS present.
As a preventative measure it has been recommended that my left breast be removed which will occur on 2-4-13.&nbsp; I have also been advised that I may need adjuvant chemo +/- radiotherapy.
I am a little confused as to why I may need the adjuvant treatment if I am having the breast removed and the nodes are negative.&nbsp; Would it be because of the LCIS and the possibility of having same in my right breast?
Due to the LCIS I am considering removal of the right breast but it has been recommended I deal with the left breast initially and then contemplate the right at a later date.
Is there anyone who has experienced something similar to the above or has been diagnosed with this type of cancer?
Wendy

louiseturner · Answer

I had the WLE and SNB, clear nodes, but not clear margins. Mastectomy in 4 weeks. I had multi focal IDC.

But, my onc explained that due to my young age (41), and the aggressive type disease I should have chemo. Sometimes the cancer cells can spread despite clear pathology apparently, so it was a precaution. In fact, she said it would not affect the DCIS left in the breast after surgery, maybe just limit its growth.?

I decided to have both breasts off even though only the one was affected with cancer. I just don't trust the scans after my experience. It makes me feel better, but I've read that mostly ladies go for just the affected breast like you.

You've got to go with what's right for you. I hope you find your answers.

Louise

michelle_r · Answer

Hi Wendy,
Like you I had TNBC metaplastic carcinoma, spindle cell type, with clear nodes and margins.  I opted to have both breasts removed due to the aggressive nature of the tumour (Grade 3, stage 2A) and then followed up with chemo (x 12, weekly) and radio (28 zaps).
Sometimes you have neoadjuvant chemo to shrink the tumour prior to surgery, especially if it is large, and this makes it better for the surgeon to remove. (I have just been to a lunch today where the guest speaker was a breast surgeon - (mine!) - and he explained this in detail as part of his talk.
Ask your surgeon or nurse if you have any questions you need answered - they can explain why this particular treatment will be right for you.  Every case is different so your decisions will be personal.  I wish you all the very best with your mastectomy on the 2nd April.  Stay in touch.
Michelle x

wendyd · Answer

Thanks Louise.
Your post has helped me understand things a  little more.&nbsp; I am seriously considering having the other breast off but  have been advised to deal with the affected breast first&nbsp; along with the  adjuvant treatment if that is what is recommended.
Thanks again and best wishes.
Regards,
Wendy
&nbsp;

wendyd · Answer

Hi Michelle,
Thank you for your post - I don't feel so alone now.
From the discussion with the breast surgeon yesterday, it is clear that he believes I should have my right breast removed as well as the left, although at this time there is no indication cancer in the right.&nbsp; He has advised the right breast removal should occur after my treatment is complete.&nbsp; I will not know about the treatment until after the left breast is removed on the 2-4-13 and the pathology of the breast is available.
I'm aware that everyone's treatment is different and what happens to individuals during treatment varies but am wondering how you went with the chemo and how you are doing now?
Wendy

michelle_r · Answer

Hi Wendy,
This is the hardest time for you - waiting for pathology results post-surgery is the hardest part - but once you have them, everything moves very quickly. I was surprised how little pain there was after surgery, and initial Endone and then Panadol kept it under control.  (Make sure you have a little cushion to tuck under your arm at night - it really helps.)
To answer your question, I found the chemo treatments surprisingly manageable - maybe because of the drugs I was given.  My drugs were Taxol and Carboplaten, every week for 12 weeks.  The anti-nausea meds before and after really worked, and I found that green tea with fresh ginger slices plus an arrowroot biscuit when I woke up also really worked - a tip I was given by girls on this site. The only real side effect was tingly toes and feet at night, and calcium stopped this almost immediately - either supplements or milk worked for me.
It is now 12 months since diagnosis and I feel healthy again - actually last treatment/last surgery was in October last year.  I am walking every day, my hair has grown back thick (and curly) and the oncologist has just promoted me to a 6 month check-up.  There is some fatigue and I have learned to pace myself, as we all do.
The main thing is - the whole thing is 'do-able' - just take it one day at a time, and put one foot in front of the other until it is all finished.  Don't look too far ahead.  All the very best for April 2nd.  Stay in touch.
Michelle x

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