Lumpectomy or Mastectomy?

Hello, I just joined also and I felt the need to chirp in. In my opinion bi lateral mastectomy because chances are very high for this type of breast cancer, lobular. I did a stomach tram flap from my own fat. You can have a nice breast job. I hear many complaints about lumpectomy because of deformation on one side was harder to fit into cloths, bras. I also had amazing flower tattoos put on for my nipples. I still felt beautiful with what I had to work with. I was age 42. Way too young. I am dealing with Mets to liver eight years later. Always keep an eye on its spread. :9 Positive Vibes and well wishes. Your fellow Breast Cancer sister.

I was diagnosed at stage 3, and they had to shrink the tumor before operating. During initial testing they all swore that the other breast was fine. I wasn't so sure, because ILC is sneaky and can be hard to detect.

My gut told me to lop both off while I was at it. But, to be clear, I had no chance of a lumpectomy in the diagnosed breast. A single mastectomy was a given from the get-go. I was unhappy with my breasts anyway, because they had grown when I had my daughter and had gotten soft from breast-feeding. So the idea of having to match a remaining breast I didn't like anyway, either with a prosthesis or recon was not appealing.

Then they tried to assure me by telling me what the follow-up on the remaining breast would be like. Basically imaging every 3 months, with biopsies of anything suspicious. I have needle phobia and my breasts were always painful, making mammos excruciating. Not appealing.

So I insisted on BMX. I had to fire the first surgeon, because he thought I was just hysterical and refused to do it. The second surgeon understood that it was partly esthetic and partly because I wanted to skip the surveillance.

The path report showed extensive LCIS in the "good" breast. They hadn't seen it on ultrasound, mammo or MRI. Suffice to say that I have no regrets about my choice of surgery.

Still, it IS a major surgery. Also, I have chosen to skip recon. But even if I wanted it, it would be a challenge. I do not have enough tissue for autologous and implants would likely fail, at least on the radiated side. In other words, recon is not necessarily the breeze it is often presented as.

In your shoes, I would get a couple of opinions and see a PS or 2 even, if you think you will want recon. Look at pictures of recon on PS sites. Skip the ones that say "nipple&skin-sparing" because you are not a candidate for those.

Dilly:

I'm so sorry that you find yourself here but glad you found us. This place is the best for support/advice/understanding.

I'm an ILC-er as well. Chose BMX because (1) 3D mammo missed my tumor completely when I was pointing it out (and had missed for the previous however many years it was there) so I could not leave myself to mammos in the future or begging for MRIs due to dense breast tissue (2) I was tiny (AA cup) and the 3 PSs I talked to all recommended BMX (of course this was cosmetic advice only) (3) I just couldn't see doing UMX -- which was called for after they found another suspicious area on the pre-surgery MRI -- and having an implant placed in the healthy breast to even it up with the unhealthy. What if it wasn't healthy and I just placed an implant there? Idk. (4) I wanted to avoid left-side radiation if possible (and BMX does not mean you 100% won't have radiation but less likely) (5) Reading about ILC being contralateral. (possibly -- MOs seems to differ on this although my current feels it's higher risk for appearing in the other breast)

However, my mom was ILC and did a lump/radiation/chemo (she's TN) and is doing fine 10 years later.

I did not want more surgery. And no lie -- it's more. I had immediate reconstruction with tissue expanders and implant exchange 6 months later. I think the major issues I encountered were more recon related than BMX. But I really like my implants (after about 3 months to "settle") and am glad I did recon.

Big negative is that you'll lose a lot of sensation. Nipples, breasts. It depends upon the person but I don't think I've read of anyone who had no loss. I had nipple/skin sparing but the nips are just window dressing now. No feeling really. But they look pretty good. I try not to think about that too much because I did what I felt I had to do.

Ask any and all questions. We're here for you. {hugs}

Dilly, looks like I'm in the minority but I had a lumpectomy & wouldn't change that decision. (I had an MRI before surgery, understanding that ILC often appears in both breasts, but both my BS & RO were confident that my other breast was cancer-free. I also knew I'd be taking an AI which would hopefully starve any remaining cancerous cells. Like yours, my cancer was in an upper, outer quadrant (10:00 on my right breast). It also turned out to be larger than the mammograms had indicated. My tumor was barely Stage 2 (2.1 cm), my margins were clear & there was no node involvement, so I was able to begin brachytherapy less than 2 weeks after my surgery. Radiation (APBI with the SAVI) took only 5 days & recovery was amazingly easy. I was travelling, going to the gym & back to my normal life less than 2 months after the original biopsy.

I was prepared to have either a UMX or a BMX, but was glad my doctors didn't think it was necessary & I'm comfortable knowing that I may have to make that choice in the future. If that uncertainty would be difficult for you, though, you may want to take the mastectomy route. You're smart to consult multiple doctors if you're not sure what you want to do. Only you can determine which decision is best for you. Whatever you decide, best of luck to you.

Hi, I was diagnosed with stage 1A IDC in my right breast in the beginning of January. Three 3-D mammograms misses it, as they were busy watching calcification fields in the left! After I insisted I wanted DMX (yes I initially panicked), they biopsied and found DCIS in the left. MRI found yet another mass in the right that the mammograms and sonograms missed too. Though there is a history of colon and prostate cancers (and two breast cancers) in paternal aunts and uncles, the cancers developed in their late 60s, so I was told genetic testing wasn't warranted. I persisted and found out I have the CHEK2 gene mutation (1100delC) making my 10-yr cancer rate 25%, or double the norm. Now the second opinion group tells me the DICS is atypical hyperplasia (precancerous) but not yet tumor and the biopsy of the third mass came back clear, but they aren't sure. I'm very confused at this point - the last six weeks have been insane. Basically I have three groups of highly respected docs, one group saying definite BMX and two advocating breast conservation and hormone therapy with radiation. I keep going back and forth trying to decide. I'm told most don't recommend BMX unless the risk is at least 40%.

I chose a bilateral even though the breast MRI showed the left side as being clear. My onc told me ILC tends to be in both breast about 1/3 of the time. After surgery, my so called healthy breast revealed LCIS and a small amount of ILC as well. The left side was a ticking time bomb for me. I am so thankful I did the bilateral.

Dillydilly, glad you are doing OK after the surgery. I would urge you to ask for a referral for physical therapy with an LE-specialist. They do massage that help move the lymph fluid around, help with shoulder mobility etc. They can greatly help with full recovery and comfort.

This is very helpful to me. Thank you.

What is a DMX?

I had a BMX because of having ILC and for symmetry. My 'good' breast had no cancer but I do not regret my decision. I wouldn't want the worry. HOWEVER, had I been a candidate for an LX on the cancer side, I would not have had a BMX.

Hi Dilllydilly

My situation is almost identical to yours and I am faced with the lumpectomy v BMX right now. I have not had an MRI and surgeon said prob not necessary and seems to be trying to reassure me that my tumor is small and lumpectomy will be fine. I was all on board with this easier path but now I am having second thoughts and wondering if I should just dive in and do DMV. How did it all go for you? How are you feeling now? The node involvement scares me more than all the rest and that I won't know until after. What are your thoughts or advice?

I hope you are doing great!

Thanks

purple flower

Purpleflower ---It's very important to have the MRI before you decide on surgery. It doesn't matter has small your tumor is. ILC often does not show up on a mammogram and sometimes also not on ultrasound. The MRI is the best way to detect ILC and you need to know if it's in your other breast before you decide on treatment. There may also be more ILC in the breast with the cancer, but in a different section of the breast. Knowing that you just have the one small tumor should make you decision easier. At least it will be a little easier.

Hi ladies. OMG thank you so much for weighing in. I have sent note to insist on MRI next along w oncology consult. I am totally freaking out today. I know a few women w previous cancer and called them up and they ALL had in situ situations, had double mastecomies and are fine now. But as you know, this is already invasive. I feel like a ticking time bomb. should I insist on hormones to start also while I wait?? If I just suck it up and do double mast now are chances lower for recurrence and spread? I am miserable. not prepared for this or major surgery. and I am still fighting a bad cough which of course makes me think all had spread already and will postpone surgery if not clear. I am also very scared and sad about chemotherapy if that come too. I keep trying to find my "inner strength and determination" and while I find glimmers of it, my fear and sadness creeps in all day and night. Thanks for listening and advice.

PF

jessie123

My situation on paper sounds a lot like yours although I have not had it looked at pathologically. I would prefer lumpectomy but seems like almost everyone does that and then another surgery to clear margins and/or double mastectomy right after that. how are you feeling? now that you are this far along what is your follow up routine going to be to watch for more in same breast and in other one? I am scared that a recurrence is basically a given w lumpectomy just a matter of time. but clearly I would prefer that path. sad.