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All TopicsForum: Surgery - Before, During, and After → Topic: Single or double masectomy?

Topic: Single or double masectomy?

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Aug 25, 2009 09:49PM

cd79 wrote:

If a specialist recommends a single masectomy with one of the reasons being that in younger women (I'm 29) the chance of reoccurence is high, why not recommend a double masectomy? wouldn't it take ALL the risk away at once?

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Posts 1 - 27 (27 total)

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Aug 26, 2009 12:36AM JGrim wrote:

I don't know all of the details of why your specialist would suggest a single mastectomy, but whether to go with single or double I think is a very personal choice.  For myself, I chose double... my cancer was very aggressive and I like to treat any problem aggressively.  I didn't want to ever think there was something I could have done and didn't.  But... that doesn't mean that that's the "right" choice.  As much as I would be personally terrified if I'd only had a single mastectomy, a lot of women feel very strongly about only having a single if that's all that's suggested.  Since that's not the way that I feel and I feel *so* strongly about the other side of it I don't really want to try to give examples of why someone would do that... it wouldn't sound right.  But perhaps your surgeon or specialist is giving you the benefit of the doubt and suggesting the minimum they feel comfortable with in case you're one of the people that would rather not have a double if you don't absolutely have to, you know?  Maybe they're offering it as a starting point suggestion.  Or maybe "in younger women the chance of reoccurence is high" but all of your other factors were lower risk?  Did you ask them why they suggested a single mastectomy?

I know this isn't the best answer, but I also know it sucks to be scared and have nobody answer your question in the middle of the night.

Mastectomy photo project: CancerVacation.com

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Aug 26, 2009 12:59AM kittycat wrote:

Talk to your doctor about what you're thinking.  Mine told me that she was going to do a lumpectomy and radiation.  I ended up getting a bilateral mastectomy instead (I did the gene testing and found out I'm BRCA1+).  I am very happy with my decision.  Sometimes doctors make their recommendations, but they should talk about all of your options. 

Good luck!

2 time survivor of triple negative BC, postiive for BRCA1 gene mutation! 9 surgeries, 5 months of chemo and 6 weeks of radiation.

Dx 6/17/2009, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER-/PR-, HER2-Dx 4/30/2010, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER-/PR-, HER2-Surgery 08/12/2009 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/15/2009 Reconstruction: Breast implants (permanent) (Both)Surgery 05/04/2010 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Chemotherapy 06/16/2010 Adriamycin, Cytoxan, TaxolRadiation Therapy 11/15/2010 ExternalSurgery 07/20/2011 Prophylactic Ovary Removal (Both)Surgery 08/30/2011 Reconstruction: Breast implants (permanent) (Right)Surgery 05/15/2012 Reconstruction: Breast implants (permanent) (Right)
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Sep 7, 2009 09:32PM ReneeJean wrote:

I only wanted a single....but after research and talking with my surgeons, I made the decision for a bilateral.  My surgeons MAIN reason for suggesting I have a bilateral was my age...I am considered young at 45...so at 29, you are just a baby...and the younger we are the longer time of life we have left for a reoccurance basically.  

 I would ask more questions of my surgeon as to why they are suggesting only a single...then do your research...and make your own decision.  I had NO trouble with my insurance covering the bilat at all.  My BS said that she has never had a woman express regret for getting a bilat, but has had many come back later to have the other breast removed because they were worried and all expressed regret at not doing it originally.  

Renee Jean

Dx 7/7/2009, IDC, 1cm, Stage I, Grade 3, 0/7 nodes, ER+/PR+, HER2-
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Sep 23, 2009 04:35AM, edited Oct 8, 2009 01:01PM by JustmeAlicia

I was diagnosed with Mucinous Colloid Breast cancer in August via biopsy.  After an MRI it is thought to be Invasive Ductal Carcinoma with mucinous chacteristics.  Stage 2.  It is rather large but low grade in my right breast.  I am having a mastectomy and after meeting with the surgeon and the plastic surgeon, I decided I need to have a double mastectomy.  This is a personal decision and surely not an easy one to make.  BUT for the stress and anxiety level I need to do whatever is necessary to battle this disease.  I will definately need chemotherapy, radiation they are not sure yet.  My surgery is scheduled for Monday September 28th.  This message board will be a great source of information as I begin this journey.  I will be having tissue expanders inserted at the time of surgery and a skin sparing bilateral mastectomy.

BLMax with TE's 9/29/09 Chemo X8, Tamoxifen 5 years - 2 down, 3 to go ! Live LIFE ....

Dx 8/27/2009, IDC, 4cm, Stage II, Grade 3, 0/10 nodes, ER+/PR+, HER2-
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Sep 23, 2009 04:55AM, edited Sep 23, 2009 04:56AM by SavannahGirl

Hi cd79,

I know that many breast surgeons these days opt on the side of preserving as much as possible, who knows maybe it's a reaction to all those years of 'cut cut cut'. Ask as many questions as possible, the right answer is the one that leaves you with the most peace of mind.

My surgeon at first recommended a lumpectomy with radiation. Here's what made my decision....I'm the seventh woman in my immediate family to deal with breast cancer, and while the BRCA came back negative for me both my surgeon and my oncologist agreed that we're in "the infancy" of genetics regarding BC and that they both felt strongly there was an as yet unknown gene there causing the overwhelming prevalence of the disease in my family. 

I knew I wanted tissue expanders and implants, I also know I'm just OCD enough that I would have a problem with one 55-year old (increasingly droopy lol) breast and one "new" one. I can say that the I am pleasantly surprised at the amazing job my PS did. Again, that's a personal decision.

When I told my surgeon of my decision to go with a bilateral she was fully supportive. The harder (much harder) decision for me was to undergo chemo as a result of my oncotype dx score (24), which I've just begun. But this too shall pass.

I know how impossibly difficult and stressful it is to make these decisions but get as much info as you can (yes, my understanding is that the younger you are, the more aggressive the cancer often is) and then make your decision. There are no guarantees which is part of what makes all of this stressful but it's also why we can all relate.

I have met women who decided upon a bilateral (it seems to be becoming a more common option) and none regretted it, I have also seen quite a few where the cancer recurred down the road in the other breast when they went with a single mx. But then again there are millions, my mom included, who had just the one removed and lived many many years with no problem. 

I wish you the best. 

Hugs

ath

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Sep 23, 2009 05:27AM JustmeAlicia wrote:

My breast surgeon and reconstructive surgeon both said that they are finding that on average 50 percent of women with breast cancer diagnosed in one breast are opting for removal of both.  (big run on sentence sorry)   They said it is a very personal decision that only the actual women can make.  Good luck with your decision.

BLMax with TE's 9/29/09 Chemo X8, Tamoxifen 5 years - 2 down, 3 to go ! Live LIFE ....

Dx 8/27/2009, IDC, 4cm, Stage II, Grade 3, 0/10 nodes, ER+/PR+, HER2-
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Sep 23, 2009 08:14AM Luah wrote:

I agree with the others, it is a very personal decision. So far, I have the option of lump and rads or mast - double mast is not on my (or my surgeon's) radar unless MRI shows something else, but then I am older (52) and everyone's different.  Every cancer is different. 

I would recommend doing lots of reading and getting stats from reputable sources. For example, this site, American Cancer Society, and others. I personally found Dr. Susan Love's Breast Book to be quite illuminating on this subject. Once you're armed with all that knowledge, you can ask very penetrating questions of your BS about your particular situation - why it might suggest one surgical treatment over another.  And then you go with what you feel is right.

It's overwhelming, I'm finding that myself.  Good luck.  And sorry you've joined this club at such a young age.  Whatever you decide, you can get through it! 

We've been through some things together/With trunks of memories still to come/Long may you run (Neil Young). Lx, ALND, 4 DD AC &12 weekly Taxol, 31 rads, completed Jul 10

Dx 9/14/2009, IDC, 2cm, Stage IIb, Grade 3, 1/14 nodes, ER-/PR-, HER2-
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Sep 23, 2009 09:40AM Lovegolf wrote:

I would agree with everyone else has said...this is your choice and very personal.  I had double even though cancer in just right.  I was told at the age of 47 I could run the risk(30%) of having it back in right or in left or 1% risk.  That made it not so hard a choice.  You are so very young and if you are doing reconstruction it maybe better to do both at same time.  I did not do recon.  I can say I do not regret my choice.  Best of luck...

Dx 4/20/2009, DCIS, 2cm, 0/2 nodes, ER+/PR-, HER2-
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Sep 23, 2009 11:30AM AmyElvira wrote:

I had BC in my Lt breast, and was told that at 43 y.o. I had a 25% chance of developing it in my other breast at some point in my life time.  I decided "I never want to go through this again" so I chose to have a bilater mastectomy.  I have never regreted that choice.

Best wishes to you!

Dx 7/2007, IDC, 2cm, Stage II, 1/8 nodes, mets, ER+/PR+, HER2-
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Sep 23, 2009 12:59PM samiam40 wrote:

I was bored during my last Zometa infusion and decided to read through my chart.  All my doctor's notes for each of my visits were neatly typed up, and from my first post-biopsy visit with the surgeon I read the following:  "Patient has no interest in preserving noncancerous breast."  That about sums it up for me.  I always said if a doctor ever uttered the words "Samiam40 has breast cancer", off they'd both go.  No regrets for me.

 It's YOUR choice--not the surgeon's.  Do what feels right for you.

Dx 1/12/09 @ age 40, IDC 2.6 cm, Stage 2a, Grade 1, 0/10 nodes, ER+/PR+/HER2-, Onco 14, BRCA neg. Bilat mx w/TEs 2/3/09. CMFx6 3/2-6/15/09. Zometa 5/09-9/10. Tamox 7/09-present Exchange w/gummy bears 9/9/09. N/A recon 12/16/09.

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Sep 24, 2009 05:48AM cabmom wrote:

Hey all!  I have a little more personal question but hopefully someone will comfortable in answering :)!  I am elated that my BRCA test came back negative and my 2nd MRI came back and all was well in my other breast, as well as the left breast was still okay since my last surgery. So....I'm thrilled with all the test results.  However, my surgeon still has to go back in because the radiologist wants at least a 2mm instead of 1mm on the lower inner quad so I'm still setting myself up for another surgery.  I'm still trying to decide if that's the right choice or should I just take it off.  My question is......for the ladies that have made that choice, does it feel the same or do you feel different?  I guess I still can't imagine my breast being gone.  How do you deal with those feelings or is it really any different at all?  Sorry if this to personal.......

Dx 6/2/2009, IDC, 2cm, Stage II, Grade 2, 0/16 nodes, ER+/PR+, HER2-
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Sep 24, 2009 06:26AM happy29 wrote:

I had a bilateral MX on August 28th 2009. I had Tug Flap reconstruction. I was negative for gene with significant family history.I am 38yrs old. Yes it feels different. Very different. My Doctor told me that although it will never feel quite the same- the natural tissue will feel like your own in time. I am still numb in some areas. In the morning- my breasts feel very uncomfortable but feel better when I get up and moving. One breast was a prophylactic MX. I cry about the whole experince and know I am mourning my  old breasts BUT I do not have any regrets. From the outside I look great. I know in time my new breasts will just be part of me and not a thought. Some times throughout the day- I already forget that they are there and different. I am different in many ways because I had cancer- so I am forever changed. But the plus side is I have decreased my chances of getting another breast cancer the MOST. No more MRIS, No Tamoxifen, No more constant worries!  For Me- that is Priceless :)

 Good Luck with your decision.

Dx 6/9/2009, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes
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Sep 24, 2009 08:38AM Texas357 wrote:

I got immediate tissue expanders, and since I've never been that big anyway, just the feeling of having something there has made my bilateral mx easier. Also, as Happy29 said, lifting the "worry weight" off my shoulders feels wonderful. 

I don't feel exactly the same but I am happy with my body, and more relaxed about my future. I'm even okay looking in the mirror although I can't wait for my exchange and to complete the reconstruction with nipples and areola tattoos.

Deep down, I always worried that I'd have to go back in for lifts etc.on the other side -- in addition to worrying about the cancer showing up on that side. Now I'll have a matching set of perky girls.

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.

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Sep 28, 2009 07:26PM, edited Sep 28, 2009 07:26PM by Lovegolf

I am still me I was not mybreast.  I am the same daughter, partner, friend with or without my breast.  am I diffferent you bet. I come home earlier; i use the fine china and stemware for pizza night; i look at sunsets longer and I know I am cancer free.  No matter your choice you will never be same, but that does not have to be a negative thing.

Dx 4/20/2009, DCIS, 2cm, 0/2 nodes, ER+/PR-, HER2-
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Sep 28, 2009 07:53PM Stonebrook108 wrote:

I had a bil mastectomy due to having LCIS. I just wanted it out of me and to be done with it.

Touch choice to have to make but, now that I'm on the other side of it I'm still glad I did it.

Best of luck and lots of hugs to you Alicia. Keep us posted.

Ann 

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Oct 2, 2009 12:34PM clariceak wrote:

I had a bilateral on 9/23. The left breast was full of cancer but the right was ok.  I have a strong history of breast/ovarian cancer in my family, and although I tested negative on the genetic testing, I agreed with the genetic counselor that something was probably happening with a gene mutation that a test hadn't been developed for yet.

One of the deciding factors for me was, the breast surgeon saying they could probably catch bc in my good breast with excellent screening.  That isn't available in the remote town I live in and having access to the kind of health insurance that covers additional screening isn't a given either.

Best of luck in making the right decision for you.

Chemo, rads, Femera, Zometa, Ooph

Dx 9/8/2009, IDC, Stage IIIc, 9/35 nodes, PR+, HER2-Surgery Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Mastectomy (Right); Prophylactic Ovary Removal (Both)Chemotherapy 10/06/2009 Adriamycin, TaxolRadiation Therapy 03/24/2010 ExternalHormonal Therapy 05/10/2010 Femara
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Oct 7, 2009 06:07AM JustmeAlicia wrote:

I am Day 8 post op a bilateral max.  The reality of this has all hit me head on.  Last night when emptying my drain and changing gauze on the other 3 drain holes ~ I cried my eyes out.  I saw myself in the mirror head on.  And the fact that my husband is helping me do this get in and out of the bra to change into a fresh one having to see me looking like this is simply devastating.  I KNOW I did the right thing ~ but I am definately mourning the d's I left in the OR.  This is such an awful disease that takes so much from us women.  My heart goes out to all of you lovely ladies here but together we shall do battle!!!  I cannot wait to get my pathology report tomorrow at the doctor, I am worrying myself sick..........

Healing hugs to all,

Alicia

BLMax with TE's 9/29/09 Chemo X8, Tamoxifen 5 years - 2 down, 3 to go ! Live LIFE ....

Dx 8/27/2009, IDC, 4cm, Stage II, Grade 3, 0/10 nodes, ER+/PR+, HER2-
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Oct 7, 2009 08:07AM clariceak wrote:

Hugs to you Alicia.

I had my bilat a few weeks ago and I know I did the right thing, but it is disconcerting to realize it's not enough.  It seems like removing your own breasts is a huge sacrifice to the cancer gods.

Best wishes for a good path report.  Let us know how it turns out.

Chemo, rads, Femera, Zometa, Ooph

Dx 9/8/2009, IDC, Stage IIIc, 9/35 nodes, PR+, HER2-Surgery Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Mastectomy (Right); Prophylactic Ovary Removal (Both)Chemotherapy 10/06/2009 Adriamycin, TaxolRadiation Therapy 03/24/2010 ExternalHormonal Therapy 05/10/2010 Femara
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Oct 14, 2009 07:19PM melissa-5-19 wrote:

may I please ask if your incurance company paid for the bilate? Mine wants to pay only for a unilateral mx and I really want to avoid any and all of this in the future.

AMAZING!!! BC MADE ME A BETTER PERSON- WHO WOULD COUNT ON THAT?

Dx 9/9/2009, DCIS, <1cm, Stage 0, Grade 3, 0/7 nodes, ER-/PR-, HER2-
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Oct 14, 2009 07:30PM JustmeAlicia wrote:

Yes mine paid for both..  that is just awful ~  I hate insurance companies.  Fight it... GOOD luck.

:)

Alicia

BLMax with TE's 9/29/09 Chemo X8, Tamoxifen 5 years - 2 down, 3 to go ! Live LIFE ....

Dx 8/27/2009, IDC, 4cm, Stage II, Grade 3, 0/10 nodes, ER+/PR+, HER2-
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Oct 17, 2009 10:27AM CoolBreeze wrote:

There was an article in my local paper regarding this topic today.

http://www.sacbee.com/273/story/2259751.html 

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV

Dx 8/17/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Oct 17, 2009 09:50PM unklezwifeonty wrote:

Dear OP,

Have you had BRCA gene testing done?

Lumpectomy 8/2009. Chemo Start 9/2009. 4 DD ACB -> 4 DD Abraxane (Taxol Reaction) + Zometa

Dx 7/2009, IDC, 3cm, Stage IIb, Grade 3, 1/9 nodes, ER-/PR-, HER2-
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Oct 20, 2009 10:57AM YoYo44 wrote:

Hi Ladies,

I am doing neoadjuvant treatment right now and soon coming up to the surgery decision.  Because I have small breasts and ILC at 4 cm lumpectomy is out of the question (even though the treatment is working.  So I am trying to get info and decide between a single vs bilat MMX.

If you have a prophylactic MMX will the lymph nodes on that side be affected?  I was pretty sure I wanted the bilat but now I am wondering if it might be nice to not have lymphadema on one side and be able to have an arm for blood tests, chemo (more after surgery Frownand BP etc. Any help with this is appreciated.  I will of course be talking to the docs as well.  Such a hard decision!

Many thanks! Yo

Dx 7/16/2009, ILC, 6cm+, Grade 2, ER+/PR+, HER2-
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Oct 20, 2009 11:00AM unklezwifeonty wrote:

Axillary nodes are removed only on the cancerous side.

Lumpectomy 8/2009. Chemo Start 9/2009. 4 DD ACB -> 4 DD Abraxane (Taxol Reaction) + Zometa

Dx 7/2009, IDC, 3cm, Stage IIb, Grade 3, 1/9 nodes, ER-/PR-, HER2-
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Oct 20, 2009 12:41PM YoYo44 wrote:

Thanks Unkle.  That's what I thought but I have heard people make comments about lymphedema in cases of prophylactic bilats and was not sure what that was about.  So can I assume I would be OK for things like BP etc on the prophy side?

Dx 7/16/2009, ILC, 6cm+, Grade 2, ER+/PR+, HER2-
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Oct 20, 2009 12:46PM unklezwifeonty wrote:

Yes

Lumpectomy 8/2009. Chemo Start 9/2009. 4 DD ACB -> 4 DD Abraxane (Taxol Reaction) + Zometa

Dx 7/2009, IDC, 3cm, Stage IIb, Grade 3, 1/9 nodes, ER-/PR-, HER2-
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Oct 20, 2009 09:45PM Lilah wrote:

I've thought long and hard about this and so far I am planning only to have a unilateral MX (right breast).  All of my doctors -- onco, BS, PS -- say a bilateral isn't necessary.  No family history of cancer and my BRCA tests were negative.  You can always decide to remove the other one later if you want to so, unless your doctors are giving you a good reason to do both, you don't have to.  My main reason for even thinking of it was for symmetry when I have my MX and immediate reconstruction surgery (I am also doing chemo first, surgery second) in December.  Part of me feels I'd have a better chance at a matched set, but I would like to give my PS a chance to do her best first and save my left, healthy breast (which will have a reduction and lift as part of the matching process).  As others have said, it's a personal choice.  But since I'm planning to only remove one, I thought I'd lend my voice here (since most have posted that they chose bilateral MX).  Cheers, Lilah

Dx 6/2/2009, IDC, Stage IIa, Grade 3, 1/17 nodes, ER-/PR-, HER2+