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.

---------------------------------------------------------------------------------

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

tousled1 · 02-17-2007, 05:36 AM

Chelee,

I have mild lympedema of my right arm where I had 26 nodes removed. My left side where only one node was removed is fine. The only thing I do as a preventive for the left side is that I wear a sleeve on both arms when flying. Removal of only one node should not cause you any problems. Just remember, it is your body and only you can make the decision. Good luck to you.

Chelee · 02-18-2007, 12:06 AM

tousled1, Thats nice to hear you have had no problems with the side you had the one node removed. I need to have an ooph and this mastectomy, so I am kind of in a hurry to get this going. Thats why I would like to avoid a 2nd surgery on my breast if necessary. My onc has left me with NO hormonal protection. I don't know what surgery to book first? My breast hurts and concerns me...and NOT having anything shutting down my estrogen is a big concern too. But I heard with a ooph I should be up and going in about 3 days if all goes well.

I still wonder why they can't just inject the blue dye and when he does the mastectomy he could see if any were infected? (I must be missing something here?) Do you have blood drawn from the arm you had the one node removed..or is it off limits too? (Probably fine...right?)

Chelee

tousled1 · 02-18-2007, 09:28 AM

Chelee,

When I have blood drawn at the oncologist's office they always use my port. I get Herceptin every three weeks and therefore they draw blood every three weeks. My red blood count still continues to drop so I still get Procrit shots. When I go to my primary care provider and they draw blood they use my left arm and I have had no problems. Also when I had my bilateral mastectomy they used my port for the anesthesia since they couldn't use either arm. It was use the port or use one of my legs. I also have blood pressure taken on the left arm. If I'm correct the surgeon will at least check one node for cancer. As to which surgery you should have first, I can't answer. If it were me I'd ask if I couldn't have both at the same time. I don't like going under general anesthesia so that's why I'd ask for both

Val Pfeiffer · 02-18-2007, 09:34 AM

Chelee--
What reason are they giving you for not checking the nodes? I'm not sure why they wouldn't--it would be interesting to know what their reasonsing is. Sure seems easier (and less costly) to check out a node or two. I suppose that because there is no cancer site, they can't look for a sentinel node, so they won't know which nodes to check out?

Val

Chelee · 02-18-2007, 04:42 PM

Kate, Thats what I thought...that my surgeon would check at least one node. But his LONG time nurse says he is not going to. I just can't see why they can't check it this time without causing problems? I will have to call and ask why he can't at least inject the dye so they can look? I don't get it? I am glad to hear you've had no problems with your left arm.
As to having both surgeries at the same time...thats what my GYN's nurse suggested & she is the one that sets up the surgeries. But I ran this by my surgeon and he said NO, absolutely not. I don't like being put under extra times if there is a way to avoid it.

Thanks Kate.

Chelee

Chelee · 02-18-2007, 04:59 PM

Val, All I can get from him for the reason is my mammo, US, & MRI gives more of a benign appearing masses. (He says they are lymph nodes) He told me in a sort of nasty way, "I can dig in there if thats what you want me to do and have your arm and every thing swell up"! He seemed so angry. With my bc history and the pain I am having...I would think it wise to check at least one? What is causing those nodes in breast & axilla to be enlarged? Something is? Its hard to ignore with the pain I have & my BIG boob. Frustrating.

Chelee

Val Pfeiffer · 02-18-2007, 06:52 PM

Sounds like a second opinion would be helpful. You need to be comfortable with what is happening, and a 2nd opinion may do that for you. I understand where they're coming from on the dye thing--I'm not sure where they would inject the dye--don't they usually inject it at the tumor site and watch where it goes? If there is no tumor site, they wouldn't have a place to put the dye...in theory then, there is no sentinel node. But still....it sounds like something is going on. I hope everything works out for you the way you want it to :-)

Val

mekasan · 02-18-2007, 07:44 PM

I had a proph mast on my right side after chemo for DCIS and IDC in the right breast which was removed prior to chemo. I had decided during chemo to have it removed.

Of course, everyone is different, and personal choices are exact that, personal, however, I am glad to have had the mast and the SNB that my breast surgeon insisted I have.

After deciding on the second Mast, my breast surgeon ordered another MRI. A new tiny (mm's) suspicious lump was found, core biopsy showed benign. She actually took two nodes, because the first had some gunk in it that tested benign. The second was clear.

I personally feel more confident now knowing the nodes I have are clear.

Good luck with your decision.
I know you will do what is best for you.

Bev · 02-18-2007, 09:46 PM

Hi Chelee,

Mekasan's post shows it can be done.

There's no right answer. With SNB, there's a smaller chance of lymphadema, but there's still a chance. I haven't had any problems. They won't use that arm for anything though. Oddly enough, they injected the blue dye around the nipple even though the tumor was at 3:00.

One way or another you'll get thru this. BB

mekasan · 02-18-2007, 10:55 PM

Lymph system

It is my understanding that the sentinel node is the name of the first node in the chain of lymph nodes the fall in the lymphatic system at the point where your breast meets your arm pit. We have clusters of nodes primarily where out limbs and neck leave or torso's and then there are several more down each limb. Everyone is different.

The dye in my case, was injected into the nipple - be prepared for about 30 long seconds of stinging. It hurts less if you know its coming. I had no idea when she did it the first time and man did it hurt. The second one hurt, but I was ready for it and it was not as bad

The idea is for the dye to travel through the lymphatic system and stain the lymph nodes as it passes. It does not matter where the tumor is. Everyone has a lymphatic system. It collects germs and foreign material in our systems channels it into the nodes... that is why our lymph nodes in our through swell when we get a sore throat. The node in the neck are closest to the infection.

After the dye is injected, I had to sit under an xray machine and wait for it to travel. At that point when nodes lit up as they collected and stored larger amounts of the radioactive dye, the doctor then marked where the first node cluster was, then the second, and third, until they were satisfied.

The dye is radioactive. Why could you not have rad? Is there a connection at all btw you not recieving radiation and not being offered a radioactive dye? (just a thought).

Which Arm?
I had 1 node from my left and two from my right taken. Left was done first, so I always used my right. After my right side was operated on, my onc said I could use my left for blood work and pressure, b/c risk of only having 1 node = lymphedema is not high. I am right handed so I like them to use my left.
I have had no problems at all. I began using my left side for herceptin in March 06 and continues every three week with IV stick, pressure, etc on the left until 12/06 withone one problem.

Two Surgeries - I was told to spaee them 3 weeks apart
please check with your doctor about how long to wait btw surgeries. I once scheduled two surgeries a week a part with two different doctors. I informed them both through their assistants. Neither got back to me so I thought it was ok, since both recoveries would be 2-3 days.

Then my plastic surgeon explained that it is not that simple. Even though you feel fine to move about, the body is still healing. When operating again, bacteria may be introduced that normally would not be a problem. However, since you will have a "weak spot" from the previous surgery, that site could become adversely affected by germs introduced during the second process. He told me to wait three weeks in order to prevent any complications.

It sounds to me like you would like the node checked, but your doctor's opinion is preventing this from happening. I know that you do not need a tumor to have it done. I know that my doctor informed me she would be doing it, before I even asked her to. I know that not all doctors are the same. If I were you, and I know this is a huge inconvenience on so many levels, but I would seek a second opinion. AND I would begin by informing my current onc that I was doing so out of a courtesy so he knows what happening when another doc calls for the records (esp if you decide to stay with the one you are with).

Chelee · 02-19-2007, 12:42 AM

mekasan, What a very informative post...thank you so much for your time and trouble. From what you have been through, and Kate having one node removed...it seems both of you have had no problems. My surgeon removed 5 of 16 last year & I am fine. So 1 should be no problem. I never thought to ask about the time BETWEEN surgeries? I'm glad you brought that up...I need a ooph too so I better ask about that.

As to the dye, I had that done at 6:00AM the morning of my mastectomy last year. I had to go to nuclear...have the injection which was put into my nipple. OUCH! Then had to go home and come back around 10:30 AM I believe. Surgery was at noon. I guess that gave it time to attach to the nodes. He told me when I was under he would use some a gamma counter that lets them know which nodes are affected. (something like that.) I would just assume he do that this time to save me from another surgery.

As to why I could *not* have rads is because I have some under-developed ribs. So I have no real chest wall. Especially the right side. If they used radiation it would fry my lungs. I have only 37 % use of lungs at present and can't afford to lose anymore.

I've had 4 months of pain now. When I was DX last year on the right side...my breast was JUST like this one. Painful and enlarged.

I have an appt with my GP tomorrow and need to tell him whats going on. I was going there with the intent to see if I could get an expedited 2nd opinion. (It will have to be quick...because I have to get this ooph done too since my onc left me with no hormonal protection.) If they put off a 2nd opinion another month or more I can't do that. Its already been 4 months since I have been having problems with this breast. I hope my GP has some input on this. I've been seeing him for 22 years...so I pray he helps me out here.

Thank you so much mekasan, your post was helpful.

Chelee

atdec05 · 02-19-2007, 03:31 PM

Hi Chilee,

Just wanted to make sure you understood that injecting the dye just identifies which node(s) the tumor drains to. The nodes can only be verified to be cancerous if they are removed and tested. Your posts seemed to imply that you thought the doctor could identify bad nodes merely by observing the dye.

- Anna

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)