ER/PR- HER2+ and local recurrence, anyone???

KeepingFaith69

I'd like to connect with anyone who has the same Onco type; and who has had a recurrence.

1.3cm tumour was removed in November and scan confirm no spread (halleluia!)

Herceptin has been stopped as it 'didnt work' and no further treatment has been planned as there is 'nothing to measure'.

I will be commencing 25 (more) sessions of radiotherapy to the same area.

I've had a bit of a down day, worrying about reduced prognosis and feeling 'ripped' off as I can't have Xeloda / Tykerb as there is nothing to measure.

Talk to me please....... anyone

manekineko

I was diagnosed back in April 2010 with 1.8cm 1/2 nodes (micrometastasis) estrogen positive on my left breast. 0.8mm mass 0/2 node - triple negative + DCIS on right breast. I had double mastectomy. I did not get any Chemos. I was on tamoxifen. 11 months later I had recurrence on my chest wall - left side. Surgery to take out mass and 6 weeks of radiation therapy followed. Medication was chaged to Femara. My radiation therapy ended in Aug 2011. Statistics for chest wall recurrence after mastectomy is not great but I have read (and my oncologist had mentioned to me) if recurrence is on biopsy site it might not have same reduced prognosis and there are some cases that cancer never returned even though recurrent site is far from biopsy site. I just saw my oncologist this week. He did not find anything and I am feeling fine. Sometimes I have backpain, neckpain, etc all causes me to worry but otherwise I am OK. We also did tumor marker and they were in normal range. I understand how you feel about treatment. I, too sometimes feel like saying "Give me more meds, why am I only on this pill? That is the reason I had my recurrence..." But in my calm days I am happy that I am having easy treatment schedule that I am having excellent quality of life no different from pre-diagnosis days. At my diagnosis my Oncotype DX was 16 I opted for no chemo. You are not really ripped off of Xeloda and Tykerb because they will be there for you when you need them in future. And you know what that future may never come, you know  Love you...

bhd1

how did you find your recurrance?   one tip i have for you is self exam.  check lymph nodes in neck and arm pit when you do your exams.   i pray that you will not need treatment in the future,  but if you do,  there is alot available.   love, barb

manekineko

For me, I found it like you said, self exam. I looked in a mirror and my previous biopsy site looked different and felt hard to touch. Then I went to this website read about local recurrence - how it looked etc. It may look pink and pearly, hard to touch...That is what I had. I pray for all of you, too, from now on. Never thought of doing it...

KeepingFaith69

Thank you : )

I do self exams every day, more than once a day, sometime hourly (dependinh on how worried I am feeling on the day).  My recurrence was in the exact place of the original tumor so I am feeling much more positive.

Thanks again.  May you be blessed xo

KeepingFaith69

Having a bit of a panic week.  I am seeing spots and have slight dizzy spells.  Joping they are nothing to worry about but can't help but be concerned.  And I am too scared to see a OC.

bhd1

i am not sure what you are going thru.  you had mast.  then recurrance in the same place?  and now dong rads?

KeepingFaith69

I had mastectomy, chemo, 20 rads and herceptin in 2010. Recurrence in November 2010. 25 more rads this year.

KeepingFaith69

Just reached two year milestone (yaaaaay), and dancing with NED.  lng may it continue