Removal of Primary Tumor Improves Survival for Stage IV MBC

Hi Jen,

I'm at City of Hope. My MO is James Waisman. He was in MB when I started in 2011. When he moved, I followed. I like it there. It's worth the drive.

Stefanie

Mommy - congratulations!

One thing to try is a circulating tumor cell test. It looks for cancer cells moving around in your blood. If that is clean, it supports the theory that you are stage IIIa and, maybe, give you a little confidence to stay of herceptin.

My personal strategy has been to be less aggressive in treatment. I believe the less of this stuff we can take, the better. It inevitably does some harm and there are better treatment options coming. But that is just my gut. You are getting the best of care and I would no hesitate to follow your doctors advice ... the right answer is generally what makes you feel comfortable and confident.

>Z<

What great news after just 2 rounds, Erin. I think you can wait until before the end of the Herceptin year to decide to continue or not. More studies may be out then. I know for early stage 1 year seems to be good enough, but MD Anderson would know as far as metsers go. Clinical experience counts a lot where no controlled studies exist.

All thumbs up for NED, bethintex. 

Beautiful avatar, Stefajoy.

I posted on this thread on April 12, 2017. I have since gone to the LBBC conference in Philadelphia. While there, I went to a bone mets breakout session. At the end Dr. Adam Brufsky (University of Pittsburgh) said we could ask any question we wanted. So, I asked how he treated ogliometastatic patients. He said "I treat for a cure. As if the breast tumor is all you have." He said he has been doing this for 5 or 6 years now. I've decided to move forward with a double mastectomy and rads to my spine. I met with my breast surgeon yesterday and he said, "You are one of the lucky ones. We wouldn't be having this conversation at all if you weren't." I meet with my plastic surgeon next week. I'm excited about getting my primary tumor gone. I know we are all different, but I feel like this is the best move for me.

Feeling disappointed, but maybe I'm off base and should just be grateful. Here's my story and I welcome any input!

Diagnosed one year and met with surgeon for staging. She spoke above chemo to make it easier for her to remove the tumor. Biopsy revealed lymph node involvement. PET scan was ordered and extensive mets to bones was discovered. So stage 4 from the beginning. I was told that surgery was not an option now. I would be treated with AI (Femara) and Xgeva. I've been cruising along on those medications for a year now. No trouble with side effects except hot flashes.

Last month my oncologist said if we are going to do surgery, now is the time. Tumor has shrunk and there are studies that show better prognosis for those who have primary tumor removed. Bone mets, while I'm told they are still there, are too small to see on PET scans. I met again with surgeon who complimented oncologist on my treatment and felt tumor could be removed with lumpectomy. She would remove a lymph node or two (sentinel biopsy) and check them out too.

I had the lumpectomy and lymph node removal then met with surgeon for follow up. She informed me they did not get clear margins on two sides and 5 of 5 nodes were positive for cancer. Ummm, not what I was expecting. After all the good vibes and pats on the back for treatment I guess I was expecting the tumor gone and lymph nodes clear.

So, I am disappointed, but as I said earlier, maybe I should be grateful for a year without progression on the same medication, no symptoms, no side effects (except hot flashes). I know there is no "cure" (at the moment!) but I believe in my heart I will be here for my daughter (she is 8) until she is grown up and the results of the surgery feel like a setback to me

I am new to my diagnosis and was like you diagnosed stage IV from the start with mets to my liver. Currently, all is stable and my oncologist and surgeon have both agreed that having a surgery and reducing my Tumor load now is the recommendation since my golf ball size tumor is now barely palpable. BMX is recommended for me, but I am researching and requesting second and probably a third opinions, though my BMX is already scheduled for June.

From research and reading here I understand that surgery in stage IV is controversial and an individual approach has to be taken. I encourage you to look forward and think about all that cancer that was removed. Will you have a mastectomy now to get the clear margins?

I also think others can chime in on the ER+ experience (I am ER-) since many do not have complete responses to chemo? But not sure how that works for pathology following AIs if it would be similar?

This is a thread I am watching closely. Wish you the best Alcarrol and all others who have posted

yes, amazing how good a long tedious hassle sounds.

>Z<