mastectomy after stage iv

Hi.

I was diagnosed originaly with stage iv breast cancer, er/pr negative and her2neu positive. I immediately started taxol/herceptin -- got a good response except for some suspect nodules in the lungs and in the lymph nodes under my arm. I switched to taxotere/herceptin and am gettng a good response from that treatment to the lung nodules, the ones in my underarm persist and seems slightly larger.

My oncologist and I have been discussing the possibility of doing a mastectomy to try and get greater local control. At her office, we looked at two studies that seem to suggest a better survival rate with women who did mastectomy's even after being diagnosed stage iv. My doc explained that this is not a settled or standard approach. She knows that I want to be as aggressive in treatment as I can so she raised this as an option.

I thought I'd ask those of you who post here if anyone had done a mastectomy after stage iv -- or knew where I could go to get additional information.

Thanks.

Hi Tanya: I was at Stage III when diagnosed. I had multiple tumors in one breast (largest 5.5 cm). Had Mastectomy, 11 of 21 Lymph Nodes positive. Then A/C, Taxol/Herceptin, and Radiation. Tamoxifen because I am Pre-menopausal ER/PR+. I've been NED for the past 2 years so this treatment seems to have worked for me. BUT, I have to caution you that the mastectomy that included the lymph disection has really impacted the QUALITY of my life. I have mild lymphadema on that arm due to the surgery. I have significant pain and it never really goes away. I have good days and bad days. Even mild lymphadema such as I have really impacts and changes your quality of life. If I knew then what I know now, I would have avoided surgery at all costs. Of course, if that is your only remaining option, go for it. I hope this hasn't made your decision harder but I just wanted you to be aware that sometimes there is damage from the surgery before you went ahead and had it done. Take Care, Linda

Hi Tanya,
I am er/pr-, her2+++, was diagnosed stage 3b and had a left mastectomy; when I recurred the right breast and underarm nodes were involved. After I reached NED on Navelbine/Herceptin and "graduated" to Herceptin monotherapy, I elected to have a right mastectomy for the reasons you have stated. After almost 3 years of NED, I may be experiencing another recurrence and am scheduled for a PET next week to confirm. I didn't have the right nodes removed at the time of the right mastectomy (I have lymphedema in the left arm and didn't want to contribute to that possibility in the right), so if they're involved this time it should show on the PET.
I feel that the right mastectomy contributed to my long NED status.
Lots of Hugs, Lolly

REgarding possible surgery damage. There are surgeons and there are surgeons. I rejected one (who does have an EXCELLENT reputation) because I felt his attitude was a little too free about what he wanted to take out of my body and how. All surgeons I saw said a lumpectomy would do for me (so far, so good) even though I was open to the mast and said so. They said wait till it is really necessary and breast MRIs showed nothing else.
What I want to stress is that by having a good and CAREFUL surgeon take out my axillary nodes, I hardly notice any difference from prior to surgery. I have all my feeling on the back of my arm as nerves were not quickly severed, but cut around. I have no lymphedema and the scar is barely noticeable now 3 years later. I had 18 nodes removed and 5 were quite full of tumor so there was tissue around them taken as well.
Also, try to use some Arnica massage oil for scars, bruised and stiff tissues. It really helps!
All the best blessings.

Hi Steph: I had a very good surgeon. I stressed to her my concern prior to surgery about lymphadema. We talked about removing a minimal number of lymph nodes and to do the least amount of damage possible. She said, "MY patients don't get lymphadema." Unfortunatly, once she started to operate she found the cancer was far more extensive than she had anticipated. My surgery took twice as long as it was schedualed for so they could get as much of the cancer as possible. With the best of intentions, I was left with nerve and lymphatic damage. I just wanted Tanya to be aware that there were certain risks involved if she decided to get a mastectomy. I'm glad your surgery turned out so well...you are one of the lucky ones. Take Care, Linda

Hello Linda
IM sorry to hear your surgery took such a hard toll on your life. Myself, I was diagnosed with Stage 3 breast cancer. Two lymph nodes out of 14 tested positive. I had total removal, reconstruction of the left breast plus removal of all lymph nodes in the same surgery. I have total use of my left arm with no side effects from having my nodes removed. There are no guarantees how the procedure will turn out from person to person, but I would do it all again. It took my about a month to get full use back, and it was painful doing so. I hope this helps someone who is struggling with the decision of surgery.
God Bless.

Hi...I'm a little late jumping into this discussion, but I thought I'd go ahead & add my thoughts...I was also dx'd StageIV-liver mets-at primary dx & despite 12/12+ nodes, I opted for a lumpectomy w/sentinel node dissection.It was my LIVER that caused us most concern.
Since chemotherapy is systemic & will reach all areas of the body, local & distal, it didn't seem necessary to surgically remove any more of my breast, axilla, etc, unless their was still evidence of disease after the initial lumpectomy.I expected that chemo would go in and clean up the local area as well as the distal mets in my liver.In essence, kill 2 "birds" w/ 1 "stone". Fortunately it has done just that.While it did take a little work to get the mets in my liver under control and now GONE, the site of the primary tumor, nodes and entire local area have remained clean!Thanks to a brilliant, careful, skilled & diligent surgeon specializing in breast surgery.
It sounds like you did neo-adjuvent chemo & haven't had any surgery yet?Ultimately, surgery for local control is up to you & your comfort level...(especially if you're already doing chemo).There's always radiation for local control too, right?
Just a note re:surgeons...The first surgeon-a general surgeon dx'd me- suggested mastectomy w/recon & prophylactic mast.w/recon.She said she wouldn't be able to do a successful lumpectomy w/out disfiguring me.Then I went to a breast specialist that does breast surgery ONLY-she said I was a good candidate for a lumpectomy, explained that my tumor type didn't require a mastec...she was right, and I am glad to have not had all that surgery & recovery time.
I wish you good luck with your decision...it's such a hard one to make during such a stressful time
Take good care,
Jessica