URGENT DECISION NEEDED! Mastectomy or (another) lumpectomy

Dear MichelleW,

Welcome to the BCO community. We are sorry for what you have been and are presently going through. Hopefully someone will come along soon to offer some shared experiences. Let us know via private message if you don't get any responses and we will help you to navigate your way around to find some connection, help and suggestions.

The Mods

I'm at that point of having to decide mastectomy, double mastectomy, or just lumpectomy on right with radiation. I keep going back and forth on it. My Braca came back negative yesterday (my mom and grandma both had bc). I'm hormone positive, her2 negative, so no chemo indicated. The radiation doctor said a lot of women regret going the mastectomy route so that's confused me. I was leaning towards bilateral mastectomy with immediate reconstruction....primarily because the stage 1 tumor on right breast is smack behind the nipple, so the nipple/areola has to go they tell me, it's retracted.

Are you happy with your decision?

Hi MichelleW, this is obviously a tough decision. I am currently trying to decide whether or not to do a mastectomy after my neoadjuvant chemo. Although the survival statistics are the same regardless of the decision for most people, there are a lot factors to weigh. I'm not saying that you would have the same considerations as I have, but perhaps my thought process will help you.

Here's what I'm considering:

My "Pros" for doing my BMX:

1. My mother had a single mastectomy 30 years ago and when cancer was found in the other breast a few years ago she opted for a mastectomy again instead of a lumpectomy. As it turned out, that was the right decision for her because they found a larger tumor in the breast that had not been found in the imaging. So, the "unseen" cancer is a real thing for me to consider. I have a 5.4 cm lobular cancer in my right breast (which is hard to see on mammograms and US) and a smaller tumor that has both lobular and ductal cancers in my left that was only seen via breast MRI. I also very likely have bone mets, so my situation is a bit different than yours. Due to the tumor size, I probably have to have a right mastectomy, but the left could be either.

2. I'm 51 and in relatively good health, so I feel like my body is strong enough for the surgery now. If I do a lumpectomy and I have reoccurence, will my body be able to support the surgery then? I have a friend who had chemo and radiation in her 20's for lymphoma and now she has BC that can't be operated on because the earlier treatments damaged her heart and lungs and she is no longer strong enough for surgery.

3. Sometimes a BMX means that you don't have to do radiation therapy. I don't know if this is applicable to me or not (yet), but considering that radiation is hard on the body as well, a BMX might be a better choice for some people.

4. Having a BMX means that I would not have to have painful mammograms (though other imaging is likely necessary in my case). If you have scan anxiety (which I don't), having a BMX might give you a better QOL.

My "Cons" for doing my BMX:

1. If I do a BMX, the recovery period will be longer (and I am still working) so this could possibly be damaging to my position at the company, and it might interfere with my ability to provide good service to clients (which is of HUGE importance to my view of a purpose-filled life of helping others grow their companies).

2. More surgery = more pain and maybe more problems with muscles and nerves later (and hopefully not lymphedema). A lumpectomy means that I don't have to consider having painful and possibly complicated reconstruction.

3. A lumpectomy means that I would not have to deal with clothes that don't fit like they used to if I decide to "go flat" or the emotional thoughts of what being flat would do to my perception of who I am and how it might affect my body image and sexuality. (Of course, if you do reconstruction, then you don't have to deal with that as much either, and some would say that body image is a small concern if you end up with a worse health outcome.)

4. A lumpectomy means I would not have to deal with a prosthesis every day if I decided not to do reconstruction. Mom told me that she has forgotten that she didn't put on her prosthesis a few times (and we had a good laugh), but I could see myself doing that and it would be embarrassing for me in a business setting.

5. If you are not thin or normal weight before the surgery, sometimes the BMX can leave you with excess skin/fat that is not very attractive.

I plan to rely on the recommendations of my doctors for whether a BMX will extend my life and if there is no clear answer there, then the decision will be made based on what I think will give me the best quality of life. No one can predict what will give me the best quality of life. Each person has to figure out what is most important to them and that is not always easy to do.

I wish you the best as you struggle through this process. I hope you have great surgery results with whatever option you choose. :-)

I had bmx 7 years ago, no recon. Don’t regret it for a second The drains were a nuisance pain was minimal. I am retired, but think I could have worked a desk type job after drains came out.

It’s a personal decision, don’t let anyone talk you into anything.

Michelle: My drains weren't in longer than 7-10 days. Recovery really wasn't bad. I took pain meds for less than a week. The real pain was the darn TEs as they were expanding. But that's another subject. I was 68 and would never have chosen to deal with a prosthesis or what might come back down the road - but that's just me. I put aside the possibility of recurrence and got on with reconstruction 6 months later and then my life with no chemo or rads.

Of course the docs did not test for HER2+ with DCIS then. The luck of the draw gifted me with a recurrence in the clavicle lymph node two years later and that one was IDC so ... chemo & rads. Still - I never regretted having the bilateral the first time around. It's been 9 years and its made my life sooooo much easier.

Hi Michelle,

Sorry you are going to through this. Part of the hardest part of all of this is making decisions. Until cancer most of the time you go to the doctor and do whatever they tell you to do. All of a sudden there is so much information thrown at you and all decisions are your own and it can be overwhelming!!

I had lumpectomy to start with. No clean margins. Then had "re-excision" to take some more. Still no clean margins.

Then they said it had to go. So had a single mastectomy.

I had very dense tissue.

I knew some people though who just said right off take them both.

I chose not to and to try to save as much of "me" as I could. It is all up to you. Best of luck to you whatever you chose.

Hi Michelle-

You've certainly been through a lot with that breast. I went through something similar 15 years ago in my right breast. I was very "lopsided" and that was the small breast. I was diagnosed with DCIS. Lumpectomy #1- no clean margins. Lumpectomy #2- no clean margins. At that point the breast was miss-shapen and even smaller. A mastectomy was recommended, which I was very comfortable with at that point. I just wanted it gone. (I was 57 at the time). I had a lat flap reconstruction with a small saline implant (silicone was not allowed at the time). The recovery was not easy but I was back to work in 6 weeks. I was on Arimidex for 5 years to lower the possibility of recurrence, or occurrence in the still existing breast. To this day, I never regretted my decision to have the MX, but almost immediately regretted not having a BMX. Every year another mammogram drama with the left breast. More lumpectomies on that side.

And then-and I feel like I always knew it would happen- I was diagnosed in March of this year/ 2019 with DCIS on the left side. There was absolutely no choice in my mind as to what to do. I had another MX about 2 weeks ago. I had reconstruction( direct to implant pre-pec) and am recovering well. I also had my implant (saline had been replaced with a texturized implant 5 years ago) replaced on the right side as it had been recalled! I just couldn't go through more breast drama, yearly mammograms, to say nothing of radiation and more Arimidex. I was a no brainer for me, but everyone is different. Weigh all of your options and I'm sure you'll come up with the right plan for you. Good luck with everything!

Seems the drains were in about 7-10 days. I told BS take them both, I’m not doing this again. Famous last words😂😂.

7 years later, I was back in his office, and so was the cancer. But I felt I’d done everything I could the first time. Chemo, surgery, rads. AIs. And did, am doing it all again

There are no guarantees, you have to do what you feel best for you. Because it IS all about YOU.

When he discharged me, I told him he was a nice guy, but I never wanted to see him again.

I was one of the people who breezed through a Mx. But my experience may not be typical. I had very little pain, no complications and no SE’s. My arm is stronger than before surgery as I worked hard at recovery. I did not have reconstruction and my prosthesis is just a part of my bra. Cannot forget it unless I go bra less. The scar took months to look it’s best, but is now very flat and straight. Ensure a good BS. Drains were the worst part, but they are very temporary. Just my two cents worth.

Michelle, I had a lumpectomy with dirty margins, then a re-excision with dirty margins. My breast surgeon was nervous the cancer could be elsewhere in the breast and recommended mastectomy. It made sense and I agreed. Then the pathology came back, and there was not one cell of cancer in the breast. I was devastated. Mastectomy was a bigger operation physically but, at least for me, a much bigger operation emotionally.

Having said that, I think my surgeon recommended the right thing. And I take comfort in knowing that there was no cancer - the breast was "clean." I won't always wonder if cancer was lurking somewhere. So I can completely understand what you're going through.

Marlame, no offense to your radiation oncologist, but I do wonder if he's trying to keep you as a patient when he talks about women regretting mastectomy. I've found the doctors all have their own viewpoint. Surgeons says lymphedema is caused by radiation, radiologists say it's the surgery that's the culprit. And what about the chemo? I take all of them with a grain of salt.

The mastectomy was one night in the hospital. I had my drains for only four-five days. Couldn't do serious exercise or swim for six weeks. Took a week off from work, then worked at home for the second week, and was back in the office by the third. If you don't need radiation, and can go with immediate reconstruction with the mastectomy, the whole process isn't really all that long. And I believe immediate reconstruction would probably lessen the emotional impact of losing a breast.

The truth is, there is no "correct" answer. I think all you can do is listen to the doctors, but also trust your heart and instincts. Get second opinions, including from plastic surgeons. You all sound like incredibly smart women.- wish you all the best. And I promise, no matter what the decision , it will someday be in the rearview mirror.

Same situation. Opted out of hrt as I've continue to have hot flashes aftwr 12 years. Arthritis and Fibromyalgia, so already have joint pains. Assume recurrence is from no hrt...just want to get them gone now.

Ratherbesailing: You were thinking the same thing I was, that the radiation doctor just wanted a patient. He does have good credentials but he just started with my medical group/hospital, so............ I have dense breasts for a 71 and it is the other clean side (for the moment) that has had more mammo recalls in the past. I do not want to go through the yearly mammo on that, so I'm still leaning towards BMX with recontruction. And lol, the side with the cancer is the peanut of the two and it the nipple is a gonner because of the location of the tumor! I'm a very glad I'm small in any event..never fixated on boobs.....well not til they're going to be gone!