Is no surgery ever an option?

bek

In April, I found a 3cm tumor and was diagnosed with HER-2+, ER + . After 18 weeks of TCH, the tumor has completely disappeared, at least visually and there is only dead, watery tissue on a MRI. I will continue Herceptin for a year, if my ECHO's don't deteriorate.

Since the surgery is mainly to get enough tissue to check for remaining cancer cells, why can't they do random biopsies, rather than massive surgery? Why is surgery so necessary, especially because Herceptin is so effective against HER2+ tumors?   Because my breast is very small, a lumpectomy is not feasible and, frankly, I dread a masectomy and reconstruction.

Has anyone gone against the conventional wisdom and delayed surgery until cancer has actually occured? It seems like a very crude tool to me, but all the doctors say I am wrong. Any thoughts?

Sassa

How big a gambler are you?  It is only losing your life vs keeping  your breast that you are betting on. 

Fighter_34

Bek- research this and I think you will try another alternative maybe a lumpectomy perhaps?? This is a very personal decision and I know you will make the right decision, but just remaining as you are is very risky.

 HUGS!!!!!!!

REKoz

Maybe some others who have had chemo prior to surgery will eventually come along for you. I thought I'd chime in because as another HER2+ sister, I had an immediate reaction to your post. I have no medical background and my cancer education consists of what I've learned in my own journey. In other words, I offer just personal opinion for you to take or leave.

Bottom line is that I would NOT take ANY chances at all when it comes to this aggressive HER2 mutation. I too had small breasts. Though the IDC tumor was "only" 1.2cm, it was "attached" to 3mm DCIS. With a papilloma residing in yet another quandrant, there was no option of a lumpectomy for me. So on that front, I completely understand where you are coming from. Actually, I adjusted to that reality far better then when learning that I was not going to escape chemo as presumed due to this previously unknown HER2 factor.

Once I learned what it meant for me to be HER2+, my fear of this cancer setting up shop somewhere else in my body overcame my fear of chemo. Prior to Herceptin, the prognosis for us was not pretty and now our odds have improved dramatically. But Herceptin is by no means a cure and it is still unknown why it protects some and not others.

Though it is wonderful that your Chemo/Herceptin regimen shrunk or even eliminated your tumor, there is no way to know if there are rogue cells left behind. That "dead watery tissue" or even the surrounding area could be harboring cells that cannot yet be seen. I would venture to guess that this would be a very good reason your MD's insist on the surgery. I would certainly ask them what their thinking is. Also remember that the cancer has to start somewhere and continues to grow until it can be seen by any kind of imaging. Again, I'm not a Dr., but as far as continual biopsies...if you can't see it, what do they have to biopsy?  Certainly, biopsies wouldn't be done in random areas "just in case."

You won't find anyone here saying that a mastectomy was/is easy. Same for recon if that's the route you choose. I'm 3 years out from diagnosis, only 1 from final implants (the first were all wrong for me) and have yet to decide whether to go for nips. It has indeed been a psychological and physical struggle. But it is one undertaken with complete confidence that I have done everything I can to eliminate the chance of cancer coming back. How do you think you would feel if you didn't have the surgery and it returned or worse yet, showed up somewhere else?  Why choose to live with that kind of ticking time bomb that your breast has become? 

Seriously- IMO, you can get through anything if you've endured chemo. It's almost mind boggling to me that you would go through all that and then go against the medical opinions that surgery is still necessary. Wishing you much strength in the journey ahead.

Ellen

sweetbean

Hi there,

My plastic surgeon told me about a woman in your exact situation.  Neoadjuvant chemo, complete response.  She elected not to have surgery.  A year later, the cancer came roaring back.  Huge tumor, same location.  Then she had surgery. 

CoolBreeze

Your cancer isn't gone, I'm sure.  There are cells there, waiting to pop-up.  Are they going to give you herceptin forever?  No, just one year.  My prediction is one year and five* months, you will have tumors again, and you'll be lucky if they are only in your breast.

Nobody wants a mastectomy. It's better than dying.

*the reason I said one year and five months is because that is when my cancer came back (and I did have a mastectomy).  In December, I finished herceptin.  I had a CT scan that showed a clean liver.  In May, five months after herceptin, I had another CT scan that showed tumors in the liver.  October 3rd, I underwent a very rare surgery to remove half my liver.  Don't take chances, HER2 cancer is aggressive. 

65chevy

What did you do in the end?

I am having a problem with surgery as well. Isn't it 2013? Why do we still get these mastectomies, then still die of the cancer anyway? It doesn't make any sense to me.