Single or double mastectomy

cupcakez

Hi everyone. I have a 2cm malignant mass and a 1cm DCIS that are six inches apart in my left breast. The doctors are recommending that I have a mastectomy since they are far from each other and I have small breasts. My right side has a lot of masses but none are suspicious at this point. I am ER+PR+Her2- Ki-67 5% and have invasive tubulolobular Grade I. I have the option of getting either a single or double mastectomy and I'm unsure what to do. The right would be prophylactic removal, I guess. I'm still waiting for BRCA approval from my insurance. If positive, I will consider double but if negative?? I'm not so sure. Reconstruction is on the table. But I'm an independent contractor so I don't qualify for disability benefits. So that's a factor too. Should I go forward with a double and just get it over with in one shot??? What is the average recovery time for single v. double with immediate reconstruction? I am so confused.....and so overwhelmed.

MinusTwo

So cupcakez - what kind of answers did you get on the other threads you posted? It's such a personal thing. I don't want to go back & read all your other posts and you haven't entered anything in your diagnosis & treatment areas of My Profile. You insurance coverage may make a difference.

I have no idea how old you are, which may also make a difference. You may want to hang on to some feeling. My preference with DCIS was to get rid of it all NOW with a BMX. It was fortuitous since there were problems in the other breast too. I did reconstruction with Allergan implants. I've never regretted my choice.

cupcakez

MinusTwo, I'm 45yrs old. I haven't started anything yet really, just diagnostics and consults. Initially they only saw the one tubulolobular cancer. I have very dense breasts. So all the research and reading I've done were on lumpectomy, mastectomy never entered into the equation, let alone a possible double. I'm feeling so frustrated n scared. My doc seems to think I can recover quickly due to my age and physical condition. I'm not so sure though. It seems to take at least couple months for people to get back to work after bmx with immediate reconstruction.

How long did it take you? Thanks for your response. I'm glad you made the right choice )

fredntan

this is how I look at it. will you ever feel comfortable with the remaining breast? Having to get yearly mammos with US? I just couldnt live with my remaining breast. I couldnt go through getting yearly mammos for it. Recovery from mast was quick for me. I was 44 then.

cupcakez

fredntan, I'm not sure how I feel about removing healthy breast. I do have a BRCA test coming up and a consult with plastic surgeon. So I'll have more things to consider.

I'm wondering though is this a good option?? What if I get lumpectomy on the left side, then fill in what divots I have via fat grafting? Is this a possibility? Am I even making sense? haha......

wallycat

I had very large breasts, so for me, and the type of cancer I had (sneaky ILC), I wanted both gone. It would mean no more mammograms/MRIs, which also appealed to me. I miss my breasts and they added a great deal to my sex life, so it was a sacrifice. I would not do it differently if I had the chance. You noted you had small breasts, so it may not apply for you.

cupcakez

wallycat, did you have reconstruction done? I do have small breasts and want to keep my nipple and sensation and keep as much of my own breast as possible. I'm scared of change and I'm scared to wake up and see nothing there to be perfectly honest.

Denise-G

I had a single MX 5 year ago.  EVERY TIME I am sitting in the mammogram waiting room waiting for results I think to myself, "No breast is worth this incredible anxiety."   

I chose single MX because I could not see cutting off a healthy breast.  However, at that time, I did not know my mom and sister would be diagnosed within 3 years of my diagnosis.  Nor did I know I would have a gene mutation called Chek 2 1100 delc.  Because of that, my MO wants me to have the other breast removed, which I need to do within the next year since I am high risk.

It is a terribly difficult decision.  Sending you all the best to make the best decision for you.

cupcakez

Thank you Denise. I'm sorry to hear about your mom and sis. I'm an only child and my mom doesn't have BC, not sure about relatives. This is really tough on the head. It really messes with you. I'm feeling so overwhelmed and consumed by this that I've decided I'm taking the rest of the week off haha....will not think about BC at all this weekend and just clean the heck out of my house and go out with friends and have some wine. ))

Thanks for your input. You're right, though. Constantly having to worry about the other breast will eventually drive me insane........

wallycat

Cupcakez, I did not have reconstruction. For me, personally, after meeting with a plastic surgeon, it totally freaked me out on what they would require to accomplish it. Nipple sparring was never discussed with me; if i had known it was viable, I might have rethought the whole thing. At the time, the plastic surgeon did not mention it. I know leaving the nipples/skin area from the breast can increase risk of recurrence, but i have also read that there is zero increased risk....who knows.

I was a D cup and I honestly thought I would freak out waking up with nothing there. I specifically asked my surgeon not to leave "dog ears" (extra skin in case I changed my mind). "Make me look like a 10 year old boy," I said to him. He did. It was very anticlimactic. I didn't freak out. I didn't feel that different in my body. I actually enjoyed not getting stares from guys as I crossed a room. Most of my clothes still fit well enough that I did not have to replace a lot of stuff. I go out flat. I have never bought a prosthesis. I am comfortable talking about it and touching my chest in front of perfect strangers if "illness and cancer" come up in a conversation.

As I type this, if I felt sure that leaving my nipples would not have increased my risk AND they would remain having sensation, I would possibly keep them but I would ask for taught skin and no reconstruction. That's just me. Like my war wound from this horrid disease.

I had a neighbor who was small breasted before cancer and she was ELATED to have the recon done and went much bigger. She had complications, infections, initial issues, but she loves them. She showed me; she let me see and touch them to give me an idea of what it would be like. We ran into each other after my surgery healed. Funnily enough, at our same oncologists office and we dragged each other to the bathroom. I showed her mine; she showed me hers. She could not accept that I did not reconstruct and I could not understand why she would want to carry that extra weight that was not her own body (no nipple sparing for her). Maybe because i had huge boobs my whole life, letting it go just seemed easier in some sense. She had said that she was going to "get something out of this cancer" and maybe because she was on the verge of a divorce or mid-life, she wanted the bigger boobs.

If you aren't sure, you can ask the doc to save some of the skin and have corrective surgery if you opt out of recon.

I do miss my nipples. My chest looks naked without them. But waking up flat (or more concave) was not as strikingly shocking as I would have thought. I spent a week looking at ballerinas and models who tend to be naturally flatter....and I felt empowered.

MinusTwo

cupcakez - Honestly, I really miss the sexual sensation I got from my breasts. That said, I am glad they are gone. I was not able to do nipple sparing mastectomy because they couldn't get clean margins. But NEVER AGAIN do I have to go for mammos & call backs & ultrasounds. Never again to do I have to worry what's next. Well, of course you know that's bogus because breast cancer is not something that can ever be cured. But still.... I knew I would not be able to deal with only one breast left. And I knew that I did not want to go flat. So BMX with tissue expanders and eventually implants has been very satisfactory for me. It's a hard decision.

dtad

cupcakez...Hi there. We all know how difficult these decisions are. Just wanted to let you know I had a BMX with the right being prophylactic. My main reason was difficulty in screening due to dense breasts. My ILC was not picked up on mammo or ultrasound. Only on preoperative MRI for IDC. I also did it for symmetry. Hope this helps. Good luck and keep us posted.

trinigirl50

Hi cupcake

I had a BMX for the same reason as most - did not find my tumour on either 3D mammograms or ultrasound scans, not palpable either. Couldn't bear the thought of having to do MRIs and scans and being anxious for the rest of my life (and this was before I understood about Lobular cancer being different from Ductal). I was 50 at the time. The recovery period from BMX was 2 weeks for me - I was back at work at one week (but I work from home). It was not difficult, particularly once the drains were removed. I also was small breasted, so lumpectomy was never on the table. I had Tissue Expanders, and yes I had issues (the chemo and the expanders did not like each other) but I got through it okay, had the exchange to silicone implants a year later (6 months after radiation). My new breasts do not feel real, but they look good. I had nipple sparing mast. I know it will take a while for them to soften up. I never was completely flat after BMX because they inflate the expanders slightly immediately during surgery. The exchange recovery time (expanders to silicone) was about a week for me. I actually started work 2 days after (again from home). The surgery was not ever really an issue for me. I look really great in clothes, and nearly normal naked (slightly lopsided - radiation shrunk my left breast a little, so its slightly higher) BUT they do NOT feel real. I am accustomed to them now but if sensation is a real concern for you then understand that BMX will affect it greatly. I personally have no regrets with my choice of BMX. Good luck.

Momine

I insisted on BMX, because I didn't trust the screening methods with ILC. My doctor did not want to do immediate recon, because I needed chemo etc, and he was afraid complications from the recon could delay treatment. By the time I was cleared to start recon, I had gotten used to being flat and decided against more surgery. Waking up flat didn't freak me. It was weird, yes, and it took a while to get used to it, but all in all, not that big a deal. For me, that is. As others have said, it is extremely personal and each person deals with it differently.

I had just turned 48 when I had my surgery. I had average B/C breasts, which only developed after I had my daughter. Before that I was more like an A- . My breasts sagged after the pregnancy, which bothered me a lot. To the point that I often slept in a bra, so I wouldn't have to feel them against my ribcage. They also hurt a lot. So maybe that is why it was relatively easy for me to get rid of them.

Theoretically I would be glad to have a small replacement pair. But having looked at a lot of recon pictures (on PS sites), I am fairly convinced that I would not be happy with the results.

cupcakez

Thank you everyone for your thoughts...I change my mind thousand times a day. I wonder what's worse... one deformed breast or just one breast. Can I live with having a deformed breast? Can I live without having nipples and being flat? Do I get rid of them both and have peace of mind? I cannot imagine having to go through this again. I'm single. I haven't dated in a while. How would a man react to me??? I don't know how to feel about reconstruction. I don't want to lose sensation, and it sounds like a really long process until you get the implants in. I'm so glad you ladies are happy with the choices you've made. That really gives me hope ))

Wallycat, your post really gave me strength. I'm not a shy person by any means. I'm quite open and friendly, but I'm having a hard time talking to my friends about it, let alone strangers. It feels so strange hearing the "C" word come out of my mouth. I had to tell just one person at work, and I broke down. I hope to be where you are soon. I hope this doesn't change me completely.

I have to make up my mind soon. I hate this so much!!!

TY ladies <333

Momine

Cupcakez, for what its worth, I have seen many stories here over the years of women finding new loves. Women with one breast, no breasts, deformed breasts and so on. Again, it is personal thing and a matter of personality more than it is about what parts you have or don't have.

In my own case, I decided that part of my life was over when my daughter was born. My stomach was destroyed by the pregnancy and has unsightly saggy skin. Combined with the soft, saggy boobs, I realized I would not be able to face a new man. But I am apparently a weirdo So for me, losing the breasts didn't really change anything in that area of my life.

Lily55

ILC is more likely to recur in the other breast apparently so part of my thinking was that IF it did that is an easier place to deal with then mets elsewhere.......originally I wanted double MX but am very glad The surgeon refused, I paid for a reduction on my remaining side so it looks forward and not down, and I am someone who truly hates my lack of symmetry and was traumatised by the whole experience. That may partly be due to the fact I am still waiting for recon and have to battle for it still. A recon breast is not a breast but more natural and less inconvenient than prosthesis, which I hate.

In clothes I am very self conscious about the lack of tissue above where my breast was as its noticeably different from my "good" sid

cupcakez

momine, when I mentioned this to a friend of mine, she said, "If you met the right man and he had one testicle, would you love him any less?" I tried convincing her it's not the same but I guess it kinda is. I don't know....I guess that's the least of my worries. Who knows. I couldn't find someone special with two breasts. I might have better luck with one o.O

Lily, I'm really concerned about symmetry as well but since I'm small to begin with, maybe it won't be too noticeable. The thought of not having a nipple really freaks me out more than anything else. Not sure why.... I'm leaning towards a lumpectomy. Since I don't like any of my options, I'll just pick the least invasive one is my thinking. But it's not 100% yet. I have a consult with PS soon.

I guess this topic has been discussed many many times on this board. It was interesting to read everyone's opinions. I feel a little better about it. Seeing other members' pictures has been really helpful.

mellee

I had small breasts (barely an A cup), so lumpectomy wasn't an attractive option for me. It really would have been a partial mastectomy considering the size of my breasts. I knew I wouldn't be happy with the result (basically being left with half a boob). Plus, I wanted to avoid radiation if possible (partially for cosmetic reasons, but mainly for the many potential long-term side effects and risks). To me, radiation is more invasive than surgery. No contest!

I decided on a BMX for symmetry and also because I never wanted to worry about the other breast. I had very dense breasts and mammogram didn't pick up the palpable lump. It was also an opportunity for me to go up to a B cup. I've never minded having small breasts, but I figured, hell, if I get to pick them now, why not go up a size?

I had a nipple-sparing BMX with the incisions in the inframammary fold, so the scars aren't visible. I did immediate reconstruction: direct to implants. I didn't want to deal with the discomfort of tissue expanders, not to mention the trauma of a second surgery. Unfortunately, I tested positive for 2 lymph nodes, so I had an ALND added to the surgery and ended up under anesthesia for 10.5 hours. The recovery from ALND was much more difficult than the mastectomy part.

I ended up having some wound healing complications, so the road has been bumpy, but I can honestly say that my breasts look 10 times better than they did before and also very natural (I've been getting insane compliments from doctors and nurses at my exams, which is hilarious for a lifelong flat-chested girl). That said, you will lose sensation. They will never feel the same as your real breasts, and that is a loss. But you get used to it surprisingly quickly.

Recovery really varies based on the individual. I basically slept for 2 weeks straight, and was pretty fatigued for another few weeks. However, I talked to a friend of my mother's who had a UMX and went windsurfing a week later. Honestly, I have no idea how she did that, but I guess it's possible!

cupcakez

mellee it's awesome you're happy with the end result. You absolutely deserve it after everything you went through. I'm really on the fence about reconstruction surgery. I have low pain tolerance. I'm not sure how I'll be able to handle more procedures.... honestly I just want to have the surgery done, preferably a lumpectomy and do nothing else. Is this horrible thinking? Are the side effects from radiation and tamoxifen worth enduring? I don't know. I have some time to consider all options available to me.

Thanks for sharing your journey. I appreciate it )

wallycat

Cupcakez, lumpectomy and rads is what I was told I should have done. So, I don't know why you think that would be horrible thinking. It is considered "standard of care." Everyone has different opinions and so, you need to do what you need to do to get through this.

Some studies show tamoxifen is less effective for ILC, so you may want to discuss if you should start with an AI right away.

And remember that after the lumpectomy, if you decide you want the BMX, there is no reason you could not go forward with that. I had a lumpectomy initially so they could figure out what I had (nothing except an MRI picked up my cancer). I had the BMX a month or 2 later.

cupcakez

wallycat, I meant doing surgery and nothing else, no rads or hormone therapy. I'm looking into alternative options too. Just looking at everything that's out there....

Annette_U

Hello everyone! have not checked in for some time- but YES! keep your nipples. Sounds like you have a low grade- but keep in mind ILC creeps around. They found it all over my left breast but nothing in the right. I should have kept my nipples- I asked but being a stage III - Doc did not want to risk it. Turned out they were clean so could have. I hate my fake boobs - not comfy. For me a double was the right choice, I would not have liked having one breast and not the other. Now for some - they can reconstruct with body fat from another area so you may want to ask about that. Good luck with your decision, please don't dwell - just make a decision that will put your mind at ease ( or at least livable ease)...... Momine - love your post, I chuckled, My hubby loves me with rubber boobs! he is a leg man anyway.

hlya

Hi, Wallycat, any improvement on the reconstruction technology lately? I was freaked out as well years ago, but still hoping someday there would have a big improvement.