Mastectomy next week, facing decisions re MRI & implants

Blue1002

Hi! I'm new here and I'm facing some decisions. First of all thanks to everyone who posts here and the moderators for this forum. I've been clicking and reading all morning and it's really so helpful. Thank you all for sharing your experiences. If this post is in the wrong place I apologize & hopefully someone will point me in the right direction!

I have mucinous carcinoma in my left breast (dx 11/9), and nothing so far in my right breast -- mammogram followed by biopsy for a questionable cyst, it is benign. No lymph node involvement that they can tell so far.

I'm scheduled for surgery 12/10 -- which is really fast, and I'm grateful for that! It's good that things are moving fast. But also... it's a little overwhelming!

I'm planning to get a mastectomy on the left side -- my tumor is about 4 cm and my boobs are small (A cup) so given the size of the tumor relative to breast size, a lumpectomy would leave a big dent -- we also discussed the possibility of reconstruction with tissue from somewhere else in my body with the oncology surgeon and plastic surgeon but that didn't sound like a great option for me so I am going for a mastectomy.

I have two lines of questioning. Again, maybe I should make separate threads for these but what the heck I'll spill it all here and any thoughts/opinions welcome.

1. MRI before surgery on the right breast to rule anything out.

I was pretty content with my surgery plan until I talked to a family friend medical oncologist at another hospital who said in my case she would recommend an MRI before surgery to rule out any cancer in the right breast.

Talked to my surgeon, who is against pre-surgical MRIs and says she will not order one. Now, my surgeon seems great! She's at Sloan Kettering (I live in NYC), she's clearly a smart cookie, I have no doubt she's great surgeon. So she explained her reasoning and all the research and I get it. Intellectually, I understand the research and her reasoning. But emotionally... I just don't see how it hurts to do an MRI and check the other side. Yes, there can be false positives. Yes, that would delay my surgery... and I guess the specter of COVID is hovering over all this, maybe I should get in and get the surgery done as quickly as I can in case COVID rates go up again a lot in NYC?

I should probably mention that my mom is a breast cancer survivor -- she had a different type of breast cancer. Detected in one breast, and then an MRI found cancer in the other breast. So, yeah. That's obviously on my mind. She had a double lumpectomy four years ago and she is doing great.

I see my surgeon at SK Monday. Got an appointment on Monday morning before that with a surgeon at another medical center for a second opinion. If she says, no you definitely don't need an MRI then I think I should stick with surgeon #1. If she says, I would strongly recommend an MRI, then I'll probably switch surgeons. If she's like, ehhh, judgment call, then I don't know.

I don't know if anyone has experience with/thoughts on pre-surgical MRIs to search for cancer in an (apparently) cancer-free breast?

God, I am blathering on so long. Great, now I'm THAT PERSON on a message board. If you are continuing to read, bless you and thank you.

2. My other question is about reconstruction. Like I said, I'm a lifelong member of the IBTC. (Itty Bitty Titty Committee) Since I'm getting a mastectomy, and planning on reconstruction and getting an implant, I figure why not go up a size or two? Maybe a full B or a C. This would of course require getting a cosmetic implant on the right side.

(It has taken me a lot to get to the point where I can think/type/say that out loud. When I was first diagnosed, I felt like I could just focus on the goal of health. To be healthy is all that matters, right? I never considered implants before because I just didn't want to mess around with otherwise healthy breasts. But since the left one has to go anyway... why not? I honestly feel a little guilty saying that. Especially on this message board where I know a lot of women are in a life-and-death struggle. And I'm talking about upgrading to a C cup? It just feels frivolous. And maybe wrong? But, if I'm honest with myself, that's what I want. And I realized if I'm going to have to go through this surgery, which I do, and it's going to suck, why shouldn't I get what I want? So, that's my thinking.)

I'm nervous about having an implant in my "healthy" breast... is that going to make screening harder? It's weird but I feel like if I got a double mastectomy that would be simpler in some ways. But that seems crazy, like why would I get my right breast removed if there's nothing wrong with it? And I wonder if the recovery from a double mastectomy is twice as hard as recovering from a single?

I also wonder what it's going to feel like. I've been reading on the reconstruction boards and they're super helpful, I will keep reading. One description I read is that it sorta feels like you have an internal bra on all the time -- like, you get used to it, but you're always going to feel it/be aware of it. I wonder if having an implant under the breast tissue on my right side will feel a lot different than having an implant after mastectomy on the left side? I guess one big difference is that I won't have feeling on the left side. (I should probably say that my tumor is right above my nipple on the left so they're definitely going to get rid of the nipple on the left.)

I should probably post the above on the reconstruction board, right? Sorry to be blathering on so much. If you've read all this I appreciate it, and if you have any thoughts on any of the above I'd really love to hear them.

Thanks again for all the love, support and information on these message boards.

hnsquared

Blue1002....first off let me say I am so sorry you have joined the club no one wants to be part of. This first part from diagnosis to getting started is so hard....all the unknowns and hard decisions. The ladies on this board are amazing and so knowledgeable, you are in good hands. I’m newer to this and I’m sure others that will respond will be more knowledgeable but I wanted to respond.

I’m going backwards but please don’t ever apologize for the decisions you are making regarding reconstruction. It’s a personal decision and we all have to do what we need to in order to feel good and move forward from this. It is very common for a woman choosing a unilateral mastectomy to have work done n the natural breast to match...it may be an implant, reduction, lift,etc There is nothing wrong with that.

I had a bilateral with direct to implant reconstruction and I will say that right after surgery the implants felt weird. I was very aware of them and they felt heavy even though they were about the size of my natural breasts. Since nerves are severed during the mastectomy I had “zingers” or quick shocks as the nerves looked for places to go and some weird nerve feelings in my reconstructed breasts in general. For the first few weeks I was sure I’d never get used to them. I would say for me at 5 weeks out I turned a corner and I noticed them less. I also started physical therapy at that time which was amazing for helping them to feel integrated to my body. I’m 11 weeks out now and I barely notice them. I don’t have an internal bra feeling at this point. I never had implants before so I don’t know what the difference will be in how they feel. I’m doing radiation now and just hoping I get through it and don’t have any major issues with my radiated breast....I’ve grown to like them😃.

As for the mri....I did have one before surgery but my circumstances were a little different. They initially did a 3D mammogram on my right(healthy) breast before I met with the breast surgeon. It was clear. When I met with her during the manual exam she felt a suspicious lymph node. She biopsied it at that time and when the results came back + they scheduled the mri for both breasts. After the positive node I had numerous scans to see if it had spread. The other thing that might have played into the mri is my maternal aunt and her daughter both had breast cancer. Because if that family history they wanted genetic testing done prior to moving forward. Turned out I have the PALB2 genetic mutation that increases your risk of breast cancer so at that time I made the decision to do a bilateral mastectomy. We just wanted to have all the information before moving forward. Due to the lymph node I did chemo first. So there were different factors that played into me having the MRI.

I don’t know if any of that was helpful. I initially just wanted it out, but my team said my cancer wasn’t aggressive and they wanted to have all the information before deciding....especially with the + node and genetic mutation. Once I started treatment and had a plan it got easier...I know that sounds crazy but it is true. It’s so hard in the beginning. I’m sending you big virtual hugs 🤗

Moderators

Blue1002 w, sorry you've had to join this club, but glad you found us.

You ask excellent questions. We are glad you are getting a second opinion Monday. Given the history of your mom, we understand your strong interest in getting an MRI on the other side.

You may find some helpful information here: https://www.breastcancer.org/symptoms/testing/type...

Please keep us posted on what you hear Monday.

As for reconstruction: Take a look at this page: https://www.breastcancer.org/treatment/surgery/rec...

Screening of a healthy breast with an implant

If you had an implant placed in your healthy breast to achieve balance with your reconstructed breast, this will change how that breast is screened for cancer. Mammography X-rays can't pass through silicone or saline implants well enough to show all of the breast tissue around the implant. So you can expect the technician to take extra views of the breast. These are called "implant displacement views," in which the technician is able to push the implant back against the chest wall and pull more of the breast tissue forward. This makes more of the tissue viewable on the mammogram. Make sure that the technician is experienced at performing mammograms on breasts that have implants.

We're all here for you

Blue1002

hnsquared & moderators, thanks so much for your replies! It really helps to hear from others.

hnsquared it's encouraging to hear that you feel good with your implants & good to know you "turned a corner"... good luck with radiation!

LillyIsHere

I had MRI before surgery. Unfortunately, it didn't catch all cancer spots and I had 2 false positive. I am glad I decided BMX, otherwise I would never have known I had cancer in the nodes and the "healthy breast".

Beesie

Blue, welcome!

MRI before surgery... my breast surgeon always does them for those having a lumpectomy or single mastectomy. He wants to know as much as possible prior to operating, and doesn't want to have to go in twice. I'd had a surgical biopsy, and was left with cancer in the margins, which led to a MX recommendation. I was reluctant to have the MX but was convinced when the MRI showed a much larger area of DCIS than had been seen on the mammogram. The MRI also showed my other breast to be clear, which helped me decide to have a UMX. So the MRI was very useful for me. That said, whether someone gets a pre-surgery MRI or not really seems to be up to the surgeon. I've seen studies that suggest that it doesn't reduce the number of surgeries required later which I guess is why it's not standard practice.

Adding an implant on the good side? I did that. I was a barely B and went to a full B, so I had the smallest possible implant added. It wasn't much of a difference, but I felt that it improved my body proportions. Since the surgery and MX is happening, there is nothing wrong with making lemonade out of the lemons. Or in your case, maybe making grapefruits out of lemons! ;-)

The implant in my good breast from the start was not apparent to me at all; after the UMX, one breast was natural and one breast was not and the added implant didn't change that, either in appearance or feel or movement. As for screening, yes, it can sometimes be more difficult to screen with an implant, but for me mammograms have always included two sets of pictures, one with the implant in place and one with the implant pushed aside. In my case, prior to my UMX surgery I did have a biopsy on my 'good' breast to check out some calcifications that turned out to be benign. Interestingly, it turned out that with the implant actually made imaging of these calcs easier, because it pushes the breast tissue forward - I remember seeing that noted on my first mammogram report after I had the implant added.

If you are uncertain of the UMX vs. BMX decision, take a read here:

Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX https://community.breastcancer.org/forum/91/topics...

Hope that helps!

peggysmom

Blue100: sorry you are going thru this- but am glad you found this forum there are some really lovely supportive people here and hope it helps make this whilrwind time a bit easier.

First, you are very brave to share- and you are not blathering, so please don't apologize!

1. Re: MRI or not MRI. Second opinions never hurt even without the discussion of MRI.

Should start by saying the most technically skilled breast surgeon I know hates MRI. Why? Like your surgeon, he feels it finds "too much", leads to unnecessary biopsies, and delays treatment. That's his opinion he is also older surgeon and trained in a time when breast MRI was not routinely available. Other equally skilled breast surgeons love breast MRI and nearly always get pre-op MRI if a woman has really extensive DCIS, or with any lobular pathology (like lobular cancer, LCIS or ALH because it tends to be bilateral).

If you are happy with your current surgeon, confident in her skills and what she is offering you, have you tried to explain to her why you'd like and MRI for your peace of mind, mom's history, etc.? If so, and she still discounts your desire for MRI then maybe you would prefer a different surgeon who takes your needs/wants into account. Again, a second opinion is never a bad idea- but if you have good rapport with this surgeon keep an open mind to her POV too.

2. Please don't feel guilty that you are making the best of the situation by considering implants larger than your current size. There is nothing vain about that! Lemons --> Lemonade!!

I'm actually in a similar situation. I'm at increased risk for cancer down the line with my "good breast" and keep going back and forth about the best decision to move forward, mastectomy on a perfectly good breast? same worries abour recovery and getting back to work etc. Won't allow anyone to make me feel vain because am insisting on keeping my nipples. That is my dealbreaker. We all understand here and are/were in the same boat so please no apologies! It's not frivolous that you want to increase your cup size or that I want to keep my nipples.

Implants do not in general get in the way of screening for breast cancer. As another poster mentioned, there are special ways to position your breast for a mammoram (by the way- you would only be getting a unilateral/one-sided mammogram of the right breast though if you choose to keep your native right breast and add an implant. If you got a right mastectmy too you would no longer get any mammograms to screen for cancer since there would be no breast tissue left on either side).

Good luck with everything and with your second opinion. Let us know how it goes!

Rah2464

Blue I hope you are successful in getting your MRI. That was standard of care with my surgeon. She wanted to know what was happening in both breasts. I have a sister who upon diagnosis of IDC in once breast was imaged and they found ILC in the other. I was also small chested and chose to "augment" just a bit. I was an A+ and am now a full B. I also chose to remove both breasts even though my right breast was clear. Just a personal choice because I wanted to hopefully reduce my risk.

I did pre pec direct to implant. I did experience a heightened nerve response I think because we stretched those tissues very tight to hold the larger size implant. I don't know if it would been easier to have expanders put in to more gently move that tissue or not, something to perhaps consider.

Blue1002

Thank you to everyone who responded here! It's just nice to have this suport and know I'm not alone.

I had surgery on Dec. 10 and feel like I should fill in the rest of the story here just for closure and in case anyone down the road is in a similar situation and reads this thread.

I ended up going for a second opinion to talk to another surgeon about the MRI... and I absolutely fell in love with that surgeon and ended up switching to her. Surgeon #1 was EXTREMELY technically excellent - I'm sure she is a great surgeon. But I'd ask her a question and get, "well research shows that...." She was totally opposed to an MRI because research showed it wasn't really necessary. Surgeon #2 (who actually trained at Sloan Kettering) would answer the same question by telling me about the research and THEN telling me what she might do in my situation. Like, y'know, an actual human. She totally understood why I wanted an MRI.

It came down to the question of whether an MRI would change my decision about surgery. My concern was really, ok say my right breast is cancer free now, I don't want to have to worry for the rest of my life and have biopsies all the time. Surgeon #2 pulled up my mammogram slides on her phone (really glad I brought those to the consultation!). She showed me the cancerous breast and the non-cancerous one. They looked exactly alike - she said they looked alike to her. Basically, mammograms don't really work on my breasts. This also explains how I went from "nothing" to a 3.5 cm tumor in a year. So no matter what, I'd end up probably with MRIs or at least VERY enhanced screening on the right side for the rest of my life, and biopsies yadda yadda.

So that sealed it. I said I wanted a BMX. Surgeon #1 had indicated her disapproval -- since I was cancer free and my genetic screen was negative, she said research showed a bilateral was not necessary. Surgeon 2 said that, given the difficulty with screening my breasts plus my family history (mother, aunt both with BC, several other relatives with different types of cancer), she would probably opt for a BMX herself.

So the MRI turned out to be a moot point. No matter what the MRI showed I would want to get a BMX. So, I didn't need to get an MRI which also meant I didn't need to delay surgery. (Surgeon #2 had a cancellation on the same day my surgery had originally been scheduled so.... that just seemed like a sign from above, right?!)

I'm two weeks post op and frankly, the recovery is pretty rough. I'm in a lot of pain which seems like not necessarily par for the course. BUT I have no regrets. There were no signs of lymph node involvement going into the surgery but a routine sentinel node biopsy showed 3 lymph nodes with cancer (15 removed in total). I'm sure that's not "evidence" (per Surgeon #1) supporting BMX but to me that extra cancer in my body makes me glad I opted for the bilateral just for peace of mind.

In my opinion (not that anyone asked lol) the official literature/research on bilateral versus uni really over-weights survival versus quality of life. Yes, survival rates may be the same (for uni vs bi with no evidence of cancer in one breast) BUT the literature really discounts the burden of enhanced screening every year (or six months) for the "healthy" breast following a cancer dx in one breast. For some women that may be no big deal; for me it was. So I'm happy with my decision. Actually the fact that I have no regrets even though I'm in a lot of pain right now probably means I really have no regrets.

I'll be starting chemo in a few weeks once I heal from surgery.

Beesie thank you so much for "making grapefruit out of lemons". I think of that, like, several times a week and smile!

Beesie

Blue, thanks for much for this update. I'm sorry that you are still experiencing pain two weeks post-op, but I'm so glad that your second opinion went well and gave you clarity and confidence about what to do.

I couldn't agree more about the attitude towards a BMX. It's not the right decision for everyone, and anyone who is making the decision should understand the pros and cons - that's very important; I've seen too many people jump into the decision without fully understanding the implications. But it is much more than a just a medical decision. What too many in the medical community don't understand is that for some people, even if the medical need is not there, a BMX is exactly the right decision. It could be because of future risk (and we are all higher risk to be diagnosed with a new primary after we've had breast cancer previously) or because of concerns about being uneven (particularly for those who are not planning to have reconstruction or those who would like to reconstruct to a smaller or larger size), or because of concerns about screening (especially if routine screening failed to find the current cancer). I'm a research junkie and I love digging into the studies to understand the findings, but to me that is just one factor among many when we are making our surgery and treatment decisions.