Uni or Bitateral Mastectomy if I'm not planning reconstruction

Symmetry is a big deal for me, so the idea of being lopsided, as it were, is something I wouldn't even have considered.

I also did not reconstruct and have no desire or plans to reconstruct; perfectly happy being flat.

Hey guys,

I'm new to the board. I wanted your opinions on requesting a bilateral mastectomy from your B.S.---did he or she give you a hard time? Did you have to beg??! I was diagnosed with breast cancer on the right side a few weeks ago and I have a dimple on my left, which may turn out to be cancerous--- apparently my type of tumor (Mucinous) doesn't show up on imaging until it reaches a certain size. My B.S's response was that she doesn't like to do surgery on a perfectly good breast unless I was diagnosed with the Brca1 or Brca2 which puts me at high risk (as if having cancer doesn't put me in the 100% high risk category already????!) Anyhoo....are most surgeons reluctant to perform bilateral mastectomies? I have no interest in reconstruction. Oh, and I was convinced to undergo a lumpectomy on the right side even though I had requested a mastectomy---she basically scared me out of my wits!

I've got appointments lined up with two other breast surgeons and I was just wondering what approach to take. I haven't even had the post surgery followup with the original B.S. for the lumpectomy. I really dislike her. I felt belittled and talked down to. It was just a nightmare! I have two appointments lined up with other B.S. and I'm really hoping that everything goes well. I can't go through 7 weeks of radiation ----my heart and lungs are what's keeping me alive! I'd rather lose two breasts than lose normal function of my organs. I know a lot of women undergo lumpectomy followed by radiation and they're okay with it, but I'm not one of them. I just want out of this merry-go-round.

LOL! The only way to get a bilateral mastectomy is to see a P.S??? Too funny.

Hi, I'm new to this site and want to contribute if it will help anyone to make a decision. I have Stage 3 with extensive metastases in the bones. I had a 10cm tumour on the right and a 2cm on the left. The right tumour didn't show up at all despite its size but the smaller left one caused a distortion of the breast, which alerted me just in time. I was given no choice but to have a Bilateral Mastectomy but, even if my left breast had not been involved, I would have insisted on a Bilateral anyway to avoid any risk of recurrence later in the left one. I chose no reconstruction to avoid risk of missing any signs of future recurrence. My operation was 9 months ago, I'm now accustomed to the new me, my scars are fairly comfortable and I rarely grieve the loss now. I mostly go flat as it's comfortable and it's possible to wear clothes that make it less obvious but, when I do want to wear clothes that fit better with breasts, I wear a prosthetic bra. It's quite heavy as the load is all on the shoulders but looks quite good to the observer. I hope this information is of value.

Momine, LOL ....your intro: "The first B.S I saw was a jackass..." made me laugh out loud and gives me hope that not all B.S. are created equal. I'm seeing the second B.S today and fingers crossed that he goes along and truly listens to my concerns---it is my body after all. It is very concerning how many cases I've read where cancer or precancer is found in supposedly "good breasts" after a double mastectomy.

Kmb4 and Legomaster --- thank-you for your advice and sharing your experiences. Maybe I should go along with the reconstruction plan and cancel last minute? ;0)

Leapfrog, your experience with a 10 cm tumor not showing up on imaging ---what was the doctor's excuse for not catching it earlier? I have a dimple on the left side and the radiologist and B.S were looking at it very closely, checking my left armpit for signs of swollen lymph nodes. The doctors were grim faced and offered no explanation why the left side an issue. I underwent magnified 3d mammograms on both breasts, even though I was just there for the tumor on the right side. I know there will be intensive monitoring in the future and this is *not* how I want to live my life! I know a dimple is a sign of necrosis and there is definitely something going on there.

I'll let you guys know what he says. I have another appointment next week with a different B.S.

((( Warm Hugs)))

Bosom, so glad you found a surgeon who listens. Onward and upwards!

Are you a basketball fan? I see "Geno" and I automatically think "Auriemma."

The thing you cannot get back if you remove a healthy breast and regret it is the nipple sensation. Nerves to the nipples are very complicated, and, even with the skin-sparing mastectomies, sensation is not likely to return. Think about how important the nipple is to you.

I am myself completely flat, and I miss my nipples. I don't regret my choice, and I'd do the same thing again, but I do wish I could wave a wand and magically give myself nipples again.

On the other hand, there are pluses to being flat. No bra, everything fits symmetrically. No having to go through biopsies of what was a bit funky looking on my pre-op MRI (and I'm sure more in the future).

There is a facebook group, flat and fabulous, where you will get lots and lots of answers to this question.

Bosombuddy in answer to your query, the way I was treated was a disgrace. At my very first mammogram at a private clinic in 2000 when I was 50 I was told I had mild calcifications and was referred to a government clinic (I'm in Australia, btw) as the private clinic didn't have facilities for follow up at that time. I was seen by a BS (female, didn't like her and it was mutual) who sent me for core biopsies which were done without ultrasound guidance so it was hit and miss. After 20 misses, they gave up trying to find a calcification to biopsy and sent me back to the BS who told me calcifications don't always turn malignant so put me on a two yearly mammogram program at the government clinic. I duly presented myself every two years and each time received a clear report. There was absolutely nothing to suggest there was anything wrong with my right breast. Its appearance didn't change and there was no lump felt, even by doctors. i gradually became very ill from 2011 on, until by 2013 I was too ill to go for my scheduled mammogram, but even if I had it wouldn't have shown up on a mammogram because the entire breast was cancerous and because previous reports had been clear, well, let's face it, they were just plain slack in their surveillance! What saved my life was the rare occurrence of a primary tumour developing in my left breast, which though only 2cm, was a very obvious lump. I immediately went to the private clinic for U/S and biopsies and that's how the advanced stage of cancer in my right breast was discovered. I had always said that if I had breast cancer in one breast I would have a bilateral mastectomy but it was obvious that I needed one as soon as the diagnosis was seen. To date the government clinic has refused to take responsibility for their complete lack of competence and so has the BS. Sending you a great big hug and an event free recovery.

Leapfrog,

I'm sorry you had such a horrific experience with the medical system and yes, our breasts are precious and evoke memories of first love experiences and then first time mom experiences and so on... I keep thinking I'll wake up at some point and all of this is just a bad dream or I'll get a call from the doctor telling me there's been a mix-up with the samples and I really have a benign fibroadenoma! I'm still in disbelief because it's so new. I can't even look at my lumpectomy breast for fear of what I'll see. Everything feels so raw. I'm generally a very upbeat person but this is scary beyond measure. Once the bilateral mastectomy is over, I'm sure things will get back to a "new" normal at least for a short while before the next round of treatments.

Outfield,

Maybe I should speak to a P.S and find out if a nipple sparing mastectomy is possible? At least it would look somewhat "normal" ? I haven't seen pictures on the internet of this. Is this is even an option for someone not considering reconstruction?

KCMC,

I know this is the only thing that will give me peace of mind! There is stuff brewing in the left breast---I could tell by all the attention it was getting.. They even made a note in the post lumpectomy findings of a dimple at 4 o-clock. Of course, they would never admit this to me when they were closely observing and checking for swollen lymph nodes.

I'm amazed at how many of us are in the position of having metastatic breast cancer when, according to most of what's reported in the media is that breast cancer is usually discovered in its early stages...at least that's what I've seen. Since I discovered how many bones are involved with cancer (every bone from my skull to my thighs) and that there were absolutely no warning signs and that four mammograms picked up nothing untoward, I've been warning everyone I can not to rely on technology. Even so, when I did discover the enormous tumour in my right breast, courtesy of cleverly developing an obvious one in the left one, which saved my life, even my BS was shocked because clinically he didn't even pick up that it was so big. It was only at operation that he discovered it was 10cm. My mission now is to be a messenger to as many women as I can that this can and does happen.

I also think that pathology reports help make some decisions for us. I had ILC and 2 people I dealt with (MD and nurse) agreed with my decision after I made it and told them. BMX. I also opted for no recon. My breast surgeon was a sweet heart. I brought a pic of a 10 year old boy and said..."like this...no dog ears, no 'in case' skin, just..like this..." and he did. He did ask me to see a plastic surgeon because he wanted to make sure I knew all my options before I did the surgery....so I did. My DH was green-faced listening to it but left me to make my own decision. I do miss the sexual sensation of my breasts but after all the crummy meds, not like I have a high sex-drive anyway. For me, I had hopes it would reduce the risk of recurrence to the healthy breast. My twin also had a breast reduction and an incidental atypical/pre-cancer (ALH) so I figured removing the other breast would let them check very thoroughly.

Best to you!

I had a unilateral mastectomy about 3 months ago. I am not going to get reconstruction. But to tell you the truth, looking at my moving forward plan, which is see the surgeon every 6 months, have breast exam every 6 months and get a mammogram every year. That doesn't seem like enough to me, but I read that is standard. I had/have a very aggressive fast growing cancer. Nothing was found in July annual physical which included complete breast exam. I found lumps under my arm in October and in October I was staged at 2B and then restaged at 3A. So in 3 months I went from no cancer to stage 3 cancer. I wasn't ready to part with both boobs in April, but now I plan to talk to the surgeon about prophylactic surgery after this pill chemo I start soon. I just don't think checking every 6 months is reasonable given my history.

I'm still glad I didn't get both at once. For one thing I had A LOT of pain from my breast/lymph removal. But at least I had my non-involved side to lift things and help myself. I need to heal from this mastectomy/ radiation and then consider the timing of the next mastectomy.

I too was 7 years from uni mx no reconstruction. The prosthesis was fine for the most part with the one main exception being bathing suits. I finally was ready for reconstruction this year. I had completed 5 years of tamoxifen and additional 1.5 years of taking no medication. I am 5 weeks from Diep reconstruction and feeling great.

I am so glad I kept my good breast because it was such an emotional boost to have an original and it helped anchor the prosthesis breast form. I will have a breast lift on good breast in a couple of months... but in a genie bra the Diep breast already pretty much matches my good breast. Thanks to my wonderful PS Dr. Alghoul for really beautiful handiwork. The idea of surgery had really scared me but in the end was way better than my fears.

Living flat for so many years on one side was doable and I could have managed easily for many more. However, now having anew soft breast that matches my original is great.

I know that I still will have to get mammograms on good breast but worth it for me since original diagnosis was veryearly stage.