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Mar 25, 2008 09:28PM
, edited Mar 25, 2008 09:34PM
This is Britbaby's daughter. My mom is not currently posting as we have lost a lot of sisters on the mets board in the past 3 months and it is very distressing sometimes to come in here when you have stage 4 cancer yourself, so she is taking a break.
I didn't see this post until now, but would like to follow up and some of the discussion. Firstly, there is nothing confusing about my mom's case. I have copies of the path reports for my mom, if you like I can post it here for you to see. I feel sometimes that people think we are leaving out info on my mom's details as it is almost impossible for the out come to have been what it is. I can't explain it myself, I just know it is what it is and nothing can be done to change it, nor can we grapple with the why's and how's of it happening. We just have to try to deal with it and fight it head on. We can't sit here and analyze why, because we will spend precious time on something that really can't be answered. There is no hx of BC in our family.
But, after my mom's lumpectomy showed DCIS Stage 0, Grade 1, 2.5cm with dirty margins, the doctor said it would be best if she go to a cancer center to have this either reexsized or consider Mastectomy. My mom being that she has always been aggressive with everything in her life, and the fact she has spent many years in the medical profession, decided for her a Mastectomy was in order.
We transferred her to the UCSF Cancer Center near my home in San Francisco for consultation of Mastectomy. The mastectomy was performed along with node removal. Path came back with 1cm margin of DCIS with .5mm Microinvasion (IDC), nodes clean, margins clear, Stage 1, Grade 1, Her2+++. We were told because of the Her2 Status, she is highly her2, that her tissue would be reviewed by the tumor board at UCSF to discuss further treatment. In 2004 Herceptin was not approved for use in early stage cancers. So, they hummed and arred over chemo in her case. 3 oncs were present on the tumor board all experts in Her2 receptor BC. 2 out of the 3 agreed she should do chemo. She was put on 4 rounds of A/C. She was cleared by BS that she was cured and had less than a 2% chance of a reoccurance. She said my mom would, and I quote "Have more chance of dying of something else than this breast cancer, you are all clear"
She underwent reconstruction after the expander was filled, the first 3 recons with impants failed. After a year of surgeries to fix the implants she decided to do the TRAM. Big mistake. Failed TRAM left her in pain near her abdominal scar, up to the new left breast. In Sept 2005, she had full body bone scan, all clear....In November 2006 she had full body CAT scan...all clear. She also had liver ultrasound...all clear. She was getting yearly mammo's on good side...all clear.
After 2 years of annoying pain from the TRAM site, she had complained enough and contacted her BS about who else she could see there to find out what is wrong with TRAM site. BS randomly decided to do full body PET scan, seems she suspected something we didn't. The PET scan in Sept 07 revealed widespread and extensive mets to the liver and bones. She was not having symptoms of the mets not from the bones or the liver, however her liver enzymes were high. This is why.
So, with all that said this is what my mom's case is. The doctors at UCSF were flawed when they saw the PET results. Do we blame the mets on not getting herceptin? We will never know. It is not that we didn't do enough for her in the beginning, we did all we could do at that time to reduce the chances. My mom is an aggressive woman, and she is a single parent with 3 girls, we are from the United Kingdom and our mom is the only family we have here in the US. So, with that my mom knew in her heart she had to do and endure what she had to to survive for her kids.
Yes, my mom's case is an unusual one. We figured 2%, no biggy. But, 2% is still 2%....it still means 2% will get a reoccurance, and unfortunately you never know if you are going to be in the 2% club. There is no test to tell you that. For my mom she was in the 2% group. I hope I have been able to clarify the details as best I can for you all. This is her story, nothing has been missed. I have read the pathology report 50 times and this is what it says. I have been the primary medical decision maker in my mom's care for 4 years. I too have spent 10 years in medicine so I know what to expect, I know what works and I know exactly what I we are dealing with. I know we did everything we could to prevent it coming back at that time.
To date, mom is doing great....treatment is working. She is now on Herceptin and it has wiped out all but 2 tiny spots in liver, bones are healing, we expect her April PET scan will give us NED. I have changed her diet, she is exercising and she never felt better. Oncologist was astonished at the 360 turnaround in her mets on last scan. The pain she has from her TRAM is still there but thanks to a poster in here, it could very well be Trunkal and abdominal Lymphadema, we will get her evaluated for this, many TRAM flap women have this.
If there is anything else I can answer, I am not sure what people want to know about my mom's case. But I have been at every appointment, surgery, consultation and I know more about my mom's cancer than my mother knows. So, I can answer any questions you may have further.
I have kept myself to the metsters board as it seems that my presence in the other boards is not appropriate. Anytime you need to ask me anything, you can PM me or come see me over in the mets area as anyone is always welcome there. There are many women there that have had chemo with only a microinvasion so in the world of mets you hear alot of stories that are shocking, that is why we stick to our area, because no one else ever really wants to her your story.
I hope this isn't too long but felt the need to speak for mom as she is not here herself. Although I will tell her to read this thread if she wants to add anything.
Take Care everyone,
My mom was dx 8/2004 DCIS with 4mm of IDC, Stage 1, 0 Nodes, Grade 1, Her2+++ cancer. Left side mastectomy with 4 rounds A/C. 9/2007 Mets to Liver and Bones. 2/28/10 craniotomy confirm brain mets 3/1/10 begun Tykerb 3/15/10 WBR and Xeloda.
11/12/2004 Mastectomy: Left; Lymph node removal: Sentinel, Left; Reconstruction (left): Free TRAM flap
11/14/2004 Adriamycin (doxorubicin), Taxol (paclitaxel), Xeloda (capecitabine)
9/29/2007, IDC, <1cm, Stage IV, Grade 1, 0/1 nodes, ER-/PR-, HER2+
1/23/2010 Tykerb (lapatinib)