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All TopicsForum: HER2/neu Positive Breast Cancer → Topic: bilateral vs unilateral mastectomy

Topic: bilateral vs unilateral mastectomy

Forum: HER2/neu Positive Breast Cancer — Testing, Herceptin (trastuzumab) treatment, side effects, and more.

Posted on: Jan 26, 2009 05:12PM, edited Jan 26, 2009 07:54PM by ejlj

ejlj wrote:

I was dx with breast cancer in 4/08 and underwent left mastectomy in July.  I can't help but question whether or not it would be beneficial to have a mastectomy on the right as well.  I totally get why our ER/PR sisters opt for this, but how about us her-2 neuers.  My right breast, as far as I know has been behaving, but I don't think I could go through all of this again.  I was wondering what other peoples thoughts were on this.  Thanks, Tina

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Posts 1 - 14 (14 total)

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Jan 26, 2009 07:49PM anianiau wrote:

Tina, this is a very personal decision. Many factors enter into that choice. They are different for each of us.

Though I only had DCIS, my oncologist recommended a bilateral mastectomy. The combination of grade 3, ER-/PR-/Her2+ with a cardiac history makes me a poor candidate for 'strong' chemo or Herceptin if I ever have a recurrence. Radiation with a history of systemic lupus isn't highly recommended, either. That left surgery. The only question was when. Waiting until trouble developed didn't appeal to me--but for some people, it's a choice they are comfortable making. I wanted to know I've given it my best shot. Good luck to you in this difficult decision.

Dx 10/20/2008, DCIS, 1cm, Stage 0, Grade 3, 0/8 nodes, ER-/PR-, HER2+
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Jan 26, 2009 08:08PM 07rescue wrote:

Totally agree it is a very individual decision, and everyone has to weight the factors that are most important to them.

I chose bilateral mastectomy even with a 9 mm IDC and no nodal involvement because I, like Anianiau, have other conditions (rheumatoid arthritis and kidney damage due to endometriosis) that I feared would curtail my ability to tolerate chemotherapy and hormonal treatment. I did not want radiation because it greatly increases the chances of developing lymphedema. I am 53 which is still young enough in terms of breast cancer to advise more aggressive measures to prevent a recurrence in the future. To top it off I had incredibly dense breasts, so a mammogram 6 months before I found my lump did not detect any cancer. If I could not trust mammogram results I did not want to retain the contralateral breast, and constantly worry there might be unseen cancer lurking there. It just wasn't worth it to me. I am very happy with my choice.

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Jan 27, 2009 03:24PM, edited Jan 27, 2009 03:25PM by Carolina59

I had a bilateral mastectomy because further testing after my initial diagnosis in my right breast, DCIS was found in my left breast as well. I had the choice of a lumpectomy in the LB, but my breast surgeon said there was no guarantee that it wouldn't recur as a later stage IDC. Although the MRI-guided breast biopsy on LB showed only a small area of DCIS, the surgical pathology report found multi-focal DCIS in the upper and lower outer quadrants. (The DCIS was ONLY picked up by MRI, not visible by mammogram or ultrasound.) 

I can tell you that I am glad I went ahead with the bilateral. I also had chemo concurrent with Herceptin, then Herceptin for one year, ovaries/tubes removed and am now on Arimidex. I feel like I've done everything I can to prevent a recurrence. It doesn't take all the fear away, but it certainly has reduced it to a large degree.

Good luck with your decision.  

Dx 5/31/07: left, DCIS; right, DCIS (10cm) & IDC (multifocal >2cm); Stage I, grade 3, 0/12 nodes, ER+/PR+/HER2+; bilateral mast. 6/26/07; TCH, Arimidex; BRCA2: variant of uncertain significance; ooph 2/29/08

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Feb 2, 2009 08:26AM Denali wrote:

I had a rt mastectomy 2 wks ago, which showed the IDC they knew about and DCIS, which they hadn't seen with mammo before surgery.  The night after surgery my left breast started discharging a clear fluid.  sigh.  I'm getting an MRI today to see if there's anything going on with the remaining breast.  Wished I'd have insisted on more testing of my left side.  If the results today show something, it will delay my scheduled chemo and herceptin to begin next week.

I feel like I'm going through the whole process over again--testing, waiting for results, diagnosis, treatment plan.  ugh.  Wish me luck.

My port is scheduled to be placed in 2 days, so today I have to ask (BEG) them to rush my results wearing my sweetest smile and nicest disposition.  Maybe I should take a Xanex before I go, huh?  Smile 

Linda, Began TCH Feb 12, 2009

Dx 1/9/2009, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Feb 2, 2009 03:37PM nicole0714 wrote:

I had my re-excision about 5 days ago. I now regret not doing the unilateral mastectomy. My PS said mastectomy was the way to go because of difficulty with recon later due to the radiation. I am only 37 and I do want to look good cosmetically (I am sure most people do at any age). For some reason, I chickened out.

I want to call my onc surgeon back and say let's go ahead with the mastectomy, I changed my mind. I am so indecisive, but feel like I made the wrong choice. My port has been placed, sentinel node was negative. Just waiting on path and will start chemo (TCH). I wonder if I can do the mast soon as possible after chemo (expanders).

So much stress over this. I am also really nervous about the side effects from chemo, the hair loss, weight gain, fatigue.  I have four young sons (6 and under) but I do have a lot of help around with family and friends. What does anyone think about going back for mastectomy now or waiting until chemo is done?

Dx 11/19/2008, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Feb 2, 2009 05:56PM ejlj wrote:

nicole0714-i too am 37 with 4 small kids 12,10,7, and 4(3girls & 1 boy).  it's great that your sentinal node was negative.  for cosmetic reasons, ithink the mastectomy might be a good idea, however if the doctors are recommending chemo, don't delay that.  remember, surgery is a local cure, which sounds like that has already happened for you and chemo is systemic.  I'm positive for you that it has not travelled, but nobody knows for sure.  my thoughts would be to complete the chemo and worry about the cosmetic appearance later.  as nasty as chemo can be, it goes by pretty fast.  It all seems like a bad dream now.  I finished AC in October.  Take as much help as you can get.  Wish you well.

Denali-did you have discharge from other breast too?

Tina

Dx 4/4/2008, IDC, 3cm, Stage IIIb, Grade 3, 2/12 nodes, ER-/PR-, HER2+
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Feb 2, 2009 07:01PM nicole0714 wrote:

Hey Tina,

Thanks for yor reply. so great to have a site like this-people who truly can relate. No discharge from the other breast. Not yet anyway. I would kind of like to keep one natural breast with sensation and all, and just do the other for peace of mind and get me back to my normal size of a full C. Did you gain weight with chemo? I am hoping I won't, although that seems to be what the norm is from the posts here. I recently lost weight with tthe stress of the diagnosis (plus  I am going thru a divorce), so I thin right now. Were you able to function with the kids during chemo? How bad was it as far as being in bed, fatigue, etc.? So much at once. I almost want the margins to come back positive so I can go ahead and get this breast off and start with the reconstruction.

Dx 11/19/2008, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Feb 2, 2009 07:13PM Denali wrote:

No, I never noticed any discharge from the right breast before they removed it.  I didn't really think too much of it at first.  It began the evening of the mastectomy and would only discharge a drop --maybe--per day.  I was wearing the drain so I just thought my chest was full of fluid.

Had my MRI today and I'm waiting for the results.  I HATE this waiting. 

Linda, Began TCH Feb 12, 2009

Dx 1/9/2009, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Feb 3, 2009 05:37PM ejlj wrote:

nicole0714-i did gain some weight with chemo, but not more than a few pounds.  i still haven't quite figured that one out, iguess it was the inactivity and the fact that everyday after chemo I would go through McDonalds drive thry for a chocolate shake and happy meal!  I can't believe I craved that stuff.  the salty fries were the best!  I am so sorry your having to deal with a divorce as well as breast cancer all at the same time.  What an incredibly stressful time for you and your children!  When I was diagnosed, my husband and I were having trouble too, but we managed to turn things around with therapy.  It was really hard.  How are your children?  Do they get any of this?  Do you know what your chemo schedule will look like yet?  I was pretty much able to keep a normal schedule with Taxol/herceptin, but the AC really did me in.  I relied a lot on friends and family.  When will you get your path report?  It's all so overwelming.  I'll keep you in my prayers! 

Denali-Hoping your results are negative for cancer.  When will you get them? 

Tina 

Dx 4/4/2008, IDC, 3cm, Stage IIIb, Grade 3, 2/12 nodes, ER-/PR-, HER2+
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Feb 5, 2009 01:09PM Denali wrote:

I got clear results from my MRI!  So yesterday instead of having a 2nd mast, I had the port placed.  All went very well and have no pain today.  So i'm going to a sewing / quilt festival this afternoon.

Chemo will begin next Thurs as long as I get a clear MUGA result on Tues.

Doing the Happy Dance! 

Linda, Began TCH Feb 12, 2009

Dx 1/9/2009, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Feb 5, 2009 04:34PM ejlj wrote:

happy dancin' with you!  good luck on Thursday.  What chemo agents will ou be getting?  I cant't believe your going out on the night you had your port placed!  I was so drugged up.  The nurses were laughing when I went to recovery, they said they gave me more drugs than they give a cardiac cath!LOL!  I guess everytime I told them I could feel something during the procedure, they pumped me with more drugs!  Best wishes!  Tina

Dx 4/4/2008, IDC, 3cm, Stage IIIb, Grade 3, 2/12 nodes, ER-/PR-, HER2+
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Feb 5, 2009 06:26PM Denali wrote:

Oh no, I didn't go out the same day as the port was placed.  My daughter brought me home from the hospital, we ordered a pay-per-view movie and I promptly fell asleep!

That was yesterday.  But today I felt fine so I went to the quilt show and bought a few things.  Hoping I have the energy to do some sewing some days during chemo.

I'll be getting 6 Tx of TCH (Taxotrere, Carboplatin) every 3 wks and Herceptin every wk during chemo and then every 3 wks to complete 1 yr.

Have you been on chemo?  If so, what was it?  And how was it? 

Linda, Began TCH Feb 12, 2009

Dx 1/9/2009, IDC, 3cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Feb 5, 2009 10:28PM nicole0714 wrote:

ok, my lumpectomy (re-excision) was not with clear margins. pretty much all the way around. They will need to go back and do the mastectomy to clear the DCIS. Question is, do I do this in 10 days and delay chemo 3-4 more weeks or start chemo next week? My onc said she would consider waiting if it was no more time than that, but may consider giving me a dose of tamoxiphen to decrease the hormones in my body so something is being done. My original surgery was November 19th (they got all the IDC out then). My stats were: 1.5 cm IDC, grade 3, ER+ PR+ Her 2 neu+. Lymph node 0/1 negative. i did have lymph and vascular component present. I am 37 yeras old. What would you guys do in regards to the surgery, now or after chemo is complete? I almost want to get it done and over with so I will just be dealing with the exchange surgery after chemo.

Dx 11/19/2008, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2+
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Feb 6, 2009 08:45AM ejlj wrote:

 I'm glad denali clarified the port thing cause I too was physically wasted!  I was not triple negative only her-2 +.  so my treatment was a little different.  I had neo taxol and herceptin X 12 doses, then mastectomy, then Adriomycin/Cytoxin X 4 doses, radiation and back on herceptin for the remainder of the year.  I toloerated the taxol/herceptin well, but the AC was not so much fun! nicole0714  that's a hard decision to make.  II think you need to gather as much info as possible and go with your gut.  My OPINION would be to start the chemo and put off the surgery.  I and a lot of the women that post have had upfront(neo) chemo.  There is a very good chance that when they go in to do your surgery after treatment, your dcis will have disappeared.  Of course, I don't have a crystal ball and cannot tell you for sure, but I think the chances are really good for that.  It looks like you were diagnosed back in November, so I think I'd be eager to start treating and PREVENTING any systemic cancer that may be out there.  ALL of my DCIS was gone at the time of surgery and my tumor, although still present was not as aggressive and looked like swiss cheese.  I think that the tamoxaphin is great if you were only hormone sensative, but because you are also her-2 pos that doesn't do anything.  your really need to start hitting that HARD.  Her-2 tumors are known to be nasty, the sooner you start hurting that the better.  I get that you would like to get the surgery over with ASAP, but what if you have surgical complications that too may delay your chemo even more!  I hope this helps and doesn't confuse you anymore.  good luck with your decision!  Tina

Dx 4/4/2008, IDC, 3cm, Stage IIIb, Grade 3, 2/12 nodes, ER-/PR-, HER2+