Stage IV and Mastectomy

Laura · 10-09-2006, 05:53 PM

I haven't had any surgery or radiation. I have no family history of breast cancer. The primary tumor was about 7cm at diagnosis. After one month, it was no longer palpable, CT scan at 4 months showed it was gone and my bone mets were healed. Both doctors say a mastectomy in not in my cards, "the barn door has been opened" and current, standard treatment is to not have the mastectomy. I have no problem with having one (or no) breasts, this is definitely not a body image problem I am having. I want to see my children grow into adults. I want to do what is best for my health and if pushing for a mastectomy is what it takes, I will do it. But... I also want to know if that will stir up cells that should not be stirred up. I continue to struggle with what to do.

Val... I live in West Bend, 20 miles north of Milwaukee.

Thanks for all of your comments and helpful advice.

Laura

Val Pfeiffer · 10-09-2006, 07:52 PM

Laura--I am in Neenah--we are so close :-) I have a close friend who is a top surgeon in this area -- his name is Ray Georgen -- he practices out of Theda Clark. You may want to make an appointment with him for a second opinion. He is the person who suggested to me that I do the neo-adjuvant chemo before I had surgery and I completely trust his judgement. I am farily sure he does second opinions--I wouldn't see why not. He is conservative, so he will tell you the most conservative approach, but he will tell you the "why" behind his opinion so you can be educated and then make a decision. If you are interested in doing that, let me know and I'd be happy to call him and tell him why I told you about him.

It just seems so strange that with a case of Her2 stage 4 that they didn't want to discuss surgery. But I am no expert :-)

Please let me know how I can help.

Val

aquinis2000 · 10-10-2006, 05:41 AM

Since reading these post, I would recommend doing some research on the Internet about "recurrence after mastectomy". From what I have been reading
there is alot to consider. Local and distant recurrences had a pretty high rate in most of the literature I read.It seemed as though radiation combined with mastectomy, the precision of the surgeon, lymph involvement ,grade, stage all played a part. It seemed to be the roll of the dice. As micrometastisis, those hiding little bugers, no one, not even the most qualified surgeon, can see, are the culprit. Whether it be recurrence to original primary, or new recurrence
both were evident .There are alot of studies out there. Maybe this line of research will help make a decision. Good luck

jessica · 10-10-2006, 08:42 AM

Hi~
I'm in a similar situation-and this is a REALLY TOUGH DECISION.
I was dx'd StageIV-liver mets- at primary dx in May 2002. I've since had a lumpectomy,TONS of chemo, Herceptin only, even been NED for a year before a recurrence w/a single liver met. After more wrestling w/The Spot & on/off chemo for another year, I had a liver resection last December. Since then I've been NED, thank God (sort of, i'll explain...) and on Herceptin only, ever since.
Here's the complicated part...8 weeks after my resection, I discovered a "new"lump in my breast,in what seems to be the exact same location as the primary tumor in 2002, only this time surrounded by pervasive, high grade DCIS. I had an excisional biopsy to remove the "new" 1cm invasive disease, but now am vigilantly watching the DCIS w/frequent breast MRI's. If it starts to look "funny" then there's no other option but to have a mastectomy.In the meantime, we watch & wait,but I continue to wrestle with the question of pursuing the mastectomy, before things look "funny".
Al's post re:stimulating growth factors post surgery is really important to consider. I do believe that was a factor in this invasive spot in my breast popping up, combined with being off Herceptin before & after the liver resection. I think in my body's efforts to heal, all those growth factors FIRED UP, stimulating healing & re-growth everywhere. Good for my liver, BAD for HER2+ cells!Also, being off Herceptin left me unprotected & vulnerable. One GOOD THING, is I believe you can stay on schedule w/Herceptin & don't have take a break to accomodate a mastectomy...?
So many questions....If I'd had a mastec back in 2002, inspite of the "Barn-door-already-open" philosophy, I might not be dealing with this today...?Hindsight is 20/20...There is no "RIGHT" decision, only what feels right to you.

I haven't decided yet either-the last thing I want is for that DCIS to fire up, become invasive, break off a piece & invade my poor NEW liver, or anything else for that matter.

The bottom line is this disease, at this stage, must be viewed as a chronic one. We can only do the best we can, make the best decisions we can, with the information available to us, and what our instinct guides us towards.
In the meantime, those scientists just keep cranking away at a CURE, if not more manageable, chronic treatment!

Prayers, Faith & Courage~

tousled1 · 10-10-2006, 09:46 AM

I am not Stage IV but am Stage III and I opted for a bilateral mastectomy and have absolutely no regrets. I had neoadjunct chemo to shrink the primary tumor and then had the surgery. I'm glad I did as I had a very large number of lymph nodes involved. But as everyone here as said, it is a personal decision and you and only you can make that decision. There are not right or wrong decisions. Best of luck to you.

dede10 · 10-10-2006, 02:10 PM

Just food to add for thought....I have a friend who was dx'd stage 2 about 3 yrs ago. She is also her2+++. After Chemo, and clear scans, she had a double mastectomy w/reconstruction. That was done in nov 2004. Sept 2005, she was redx'd stage 4.

I, having been initially dx'd stage 4 her2+++, chose not to have surgery. My initial tumors, & all others shrunk completely and I was NED for 18 mos. My flare ups have never been in the same breast, nor in the other. I am getting scans every 3 mos.

I had initially planned on surgery, but could not come up with the right reason for doing it. I didn't see the benefit.

We all have to make our own decisions on this, and either way, its not easy. I will pray you make the right decision for you.

Blessings
-dede

jessica · 10-11-2006, 07:26 AM

For those of us who are on a regular, q12 week, Scan Schedule...Don't forget to keep up w/your mammo's too! I know, it may feel like one more test that you can forgo, especially since a PET scan will light up with anythng metabolic - atleast that's how I felt about it. And that is true but, remember, Scans are fallible picking up things under .5cm.
So, even though the PET is scanning everything for "Eyes to Thighs", it may miss other nuances in the breast tissue, especially DCIS-a mammo will pick that up, when a PET won't.
Just hoping to share some wisdom & others may learn from my oversight...

Prayers, Faith & Courage!