Question about "Simple Mastectomy?

Chelee · 02-16-2007, 04:39 PM

What would be the standard protocol for having a prophylactic mastectomy taking into account all my recent tests results and bc history?

As you know I am her2/neu, 3+++, er & pr positive, 5 positive nodes, 9 of 9 on Richarson scale, and could NOT have radiation. My recent mammo showed two small masses in the breast & in axilla. My surgeon says they are consistent with lymph nodes & from the mammo, US, and MRI doesn't think its cancer but he said he *can't* say for sure its not. But doesn't look like it. (Althogh I've had ALOT of pain in this breast & axilla for 4 months)So I asked to have this breast removed. I just called and asked his nurse if this will be a MRM like my other one? She said no...just a simple mastectomy.

I asked since I have those 4 masses will I be having that nuculer testing that morning and a SNB to check for cancer? She said "No". She said the breast will be removed and when the path dept checks it out... IF it is found to have cancer...they would go back in another time. ARGH! Wouldn't it be easier to check at least one node during surgery under my circumstances? Or is it better not to, so that you don't distrub the lymph nodes?

Chelee

tousled1 · 02-16-2007, 04:57 PM

Chelee,

I had a bilateral mastectomy. A MRM on the right side and a simple mastectomy on the left. My cancer was originally diagnosed in my right breast. Upon getting an MRI before surgery an 8mm mass showed up on the left breast along with extensive calcifications. Hence the reason I opted for the bilateral. With my simple mastectomy one node was removed and was checked. No cancer in the node and the 8mm mass was not cancer. If I had to do it all over again, I would do the same thing. It was a hard decision but one I put a lot of thought into. I'm sure that with a simple mastectomy you will be fine.

Mary Jo · 02-16-2007, 06:49 PM

Hello,

I, too, had a prophylactic (spelling?) mastectomy. I was dx with right breast cancer in June of 2005. I had that breast removed and 2 sent. nodes in July of 2005. In Feb. 2006 after completing 8 cycles of dose dense chemo and radiation I had a left breast mammogram and there was an area of "suspicious calcification" found. It was biopsied and found to be negative for cancer. After that scare I also knew that removing that breast was right for me. My surgeon knew how I felt from the beginning and did not argue with me. Because the calcification area was found to be negative I opted for NOT touching the lymph nodes on that side. I was willing to take my chances as I did not want to mess around with those lymph nodes for no reason. THANKFULLY, the left breast was negative for any cancer so I was happy that I made that decision. My surgeon left the decision up to me. She agreed with me but said she would check the sentinal node if I wanted it done.

Blessings to you,

Mary Jo

Bev · 02-16-2007, 10:31 PM

Chelee, I don't know if I support the mast. I do know the only thing that brought me to tears in this whole ordeal was the blue dye injection for SNB. It hurts. My understanding was I went thru it to see if my breast and lymph nodes could be spared.

For now they are assuming you don't have cancer in the prophy side. I think they are giving you good advice on waiting for path before getting more aggressive on something that appears benign.

I can completely understand you wanting to take action if you are in pain. Making decisions is harder than the physical part.

I don't think HER2+ is highly correlated with recurrence to other breast. So you have to decide what you want. I would hang tight but you are up a notch from me and you are having feelings for a preference. Sometimes you have to go with your gut feelings.

Soul search. Make a decision and let us know how it turns out. Best wishes BB.

Chelee · 02-16-2007, 11:38 PM

Bev, Your right, the decision making has been beyond difficult. What's really pushing me is the pain I have in all areas of my breast & axilla. I keep thinking those 4 masses they found have to be causing this and it worrisome. Plus the fact I CAN'T have radiation. That alone plays a big part in my decision. I see it as a preventative measure.

(Something has to be causing this pain and my breast to be so enlarged?) I've been complaining of pain now for 4 months & its only gotten worse.

The first time around when I was DX and had a MRM...I had the blue dye injected as you mentioned. It would seem my surgeon could inject that and when he is doing my simple mastectomy he could see at that time if any lymph nodes where involved? If he found that they were he could go ahead and do what was needed then verses having me go through this all again. I just wonder what the standard protocol on this would be?

Chelee

Chelee · 02-17-2007, 12:43 AM

tousled1, I feel like they should check at least one node on me due to these 4 masses. They aren't sure 100% that its not cancer...so why not check? This breast is so enlarged..its just not normal. What on earth is causing all this pain in my breast and the fact thats its so much bigger?

Since I only have one arm left to use for labs...I am sure he doesn't want to have it swell up on me. But I really didn't think just one could cause that many problems? But he's the expert..not me. He did a *great* job on my other side and I had 16 removed. Has yours been fine since that one node was removed? (I want instant peace of mind...but I do want to avoid problems) I hate all these decisions.

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Mary Jo, Thanks for your reply. My surgeon left the decision up to me too just like yours did. What made it a little easier for you is they knew that area of calcifications was negative. When I ask my surgeon if he can tell me for sure its not cancer...he says he can't. So with my bc history, and all the different types of bc...it really is stressful as most can relate. Thats why I wanted to post this here and get an idea of what is generally done in a situation like this?

Thanks Kate & Mary Jo!

Chelee

skeetur · 02-19-2007, 03:58 PM

I have had 2 lumpectomies on right breast that didn't yield clear surgical margins. I had SNB with first lumpectomy. It was negative. Doctor recommended mastectomy. I am opting for bilat mastectomy w/ expander insertion. This is scheduled for 3/2. I already had SNB on right breast and I do not believe there will be SNB on the left breast which is being removed prophyllactically at my request.

Skeetur

MCS · 02-21-2007, 10:26 AM

had mrmr on rb when dx in july 2005. pulled 6 nodes. showed c in the sentinel node.

when did mammo in july 2006, found calcifications on lb, and you know what, that same day i decided to take that puppy out. no hard decision there.

was glad i did because even surgeon said we would end up watching these things till they went bad. what anxiety, who needs that.

i have to tell every nurse that ok to do blood draws first from left side and then ok to do right side. should have this tattood on chest! neither had many nodes pulled and surgeon said ok as long as no lymphedema, which i don't have. just sleeve on arms when flying and massage upward and downward the arms at shower.

nurses are terrified to touch either arm. only ones that use ports are the onc nurses that have been trained to use them, otherwise i use the other veins in arms. i'll tell you i'm a real big wuz about this so i rather do this than use leg veins

love

MCS ( maria)