Trying to decide lumpectomy or mastectomy

LoveBig

I was diagnosed with IDC last Thursday. I have a appointment this morning at 8 with my breast surgeon to go over pathology and discuss surgery. He called yesterday and told me he would do either a mastectomy or lumpectomy it was up to me. I am 46 I have had 6 biopsies and have a family history. I am so very tired of biopsies and waiting. I am afraid and anxious. I want a mastectomy and really I am not interested in reconstruction right now. But my husband is worried I will regret a mastectomy and he is honest he doesn't know how he will feel seeing me without breasts. I got really mad at him. I am considering recon delayed though. But only because what if I can't be comfortable with out my breasts because of him being uncomfortable. Right now I just want them gone and to get through this I don't even know yet if I have to do chemo or radiation. The cancer is 1.8 cm on scans, ER+PR+HER2- surgeon says it can be bigger they won't know until after surgery. Just too many unknowns for me

VL22

kmath - so sorry you have to go through this. I had 3 tumors removed via lumpectomy, one which was a surprise, and then told they have to go back in for clean margins. I immediately doubted my lumpectomy decision, but a conversation with my BS made me confident in my choice. You have the added burden of family history. Talk with your surgeon and be honest and if you have trust in him or her I think you can have more confidence in your decision. Also, maybe consider a second opinion. Your health, mental and physical, is what is most important. As far as the husband thing, that is pressure you don't need

MinusTwo

KMath - You didn't say how old you are, but off the top I'd agree with you about BMX after the previous worry of 6 biopsies. You have to weigh the continual worry & testing against the lack of feeling. Sorry your husband is turning this into something about & for him rather than your health and well being.

Lula73

it sounds like it's a very emotional time for you right now – which I know is an understatement. I'm so sorry that you're having to go through this. I totally get it just wanting to have the mastectomy and not have to continue on this hypervigilant path if you just have a lumpectomy. And I totally get wanting a bilateral mastectomy– for all that the "experts "talk about 'you can just do A unilateral mastectomy and the long-term outcomes are the same' they sure do a lot of hypervigilant mammos and MRIs on that remaining breast. And to have that hypervigilance stress taken off your plate by going ahead with both is a huge relief for so many of us.

On your husband- Remember that this is hit your husband all at once just like it has you and he's probably feeling very helpless and he's trying his best to communicate honestly with you. That is huge on so many levels. Understanding that this is happening to you but it's also happening to him – he's feeling helpless to help the woman he loves more than anything in the world. I think it took a lot of courage for him to talk about the impact for him and to express his concern and worry. It doesn't mean he doesn't love you anyway you are. But we do know that men are very visual and he's worried about that hat about how that will affect your relationship. And that's valid not just from his standpoint but from yours too. The casualness and ease with which you all move around each other now will likely change – you may end up feeling very self-conscious and he's worried likely about how to handle that. There's just a lot to it. My advice here is to do whatever it takes to keep that honest communication flowing between you.

On whether or not to do the reconstruction – we all feel differently about reconstruction and we all choose to do it or not do it for different reasons. I've been dealing with health issues since I was three. I have so many surgical scars at this point that they just don't bother me anymore. But with this diagnosis and subsequent mastectomy I was not willing to let BC have that much more of me especially when there are some excellent natural tissue recon options out there. Mastectomy is a big surgery. I also didn't see the need to have two big surgeries by delaying recon ( keeping in mind that some women need to have delayed recon due to their treatment protocols ). So I did bilateral skin and nipple sparing mastectomy with immediate recon (The procedure I had was called a DIEP flap). So I went into surgery with breasts and came back out with new and improved breasts. But unlike implants my breasts are soft and warm and move with me just like my old ones did. other than my new breasts being a little perkier, you really can't tell a difference between these and the old ones.They will age with me and I don't have to have them replaced in 10 or 15 years. And since they're not made of breast tissue with the mammary glands and ducts and everything, there's no difference in potential for recurrence compared to mastectomy with no recon or implant recon. this type of recon can also be done delayed but in my opinionit is much easier to do at time of mastectomy. As with most things, a picture is worth 1000 words. Before you make your decision I encourage you to explore the different recon options that are available and look at before and after pictures not just of reconstruction but of what you can expect if you don't do any reconstruction at all. For many the idea of going flat is pleasing but the reality of it is anything but. It's important to know what you can expect the outcome to look like and feel like before hand.

This is all I have to offer for now, but if you have any questions you'd like to ask me directly feel free to do so on this thread or p.m. me. I've listed A link below to an excellent website to see what good looks like with a natural tissue reconstruction option complete with before and after pictures. Many of the women in the photo gallery did do delayed recon so you can see what that looks like as well as those who did immediate recon like me. sending you hugs, hope, & encourage!

www.breastcenter.com

sunnyjay

kmath71: I had a diagnosis of IDC with my tumor measuring 2 cm. At first, my surgeon said we could do lumpectomy. But he ordered an MRI and chest xray to make sure there wasn't anything more. Well, MRI showed DCIS of 2 cm in the same left breast. The right didn't show anything.

He said he could still do lumpectomy if I wanted but wasn't sure if he could get clear margins due to the size of my breast. I'm in between a B & C cup. So I opted for a single mastectomy with recon. So glad I chose UMX. There was a tiny spread into one of the sentinel nodes so I had to go back for AND. I have no family history and genetic testing was negative for BRCA.

I know you've had all kinds of biopsies so maybe ask to get a MRI. The radiologist that did my initial biopsy saw something "worrisome" in the lymph node but biopsy showed it was benign.

ready2bedone

Hi KMath71 -

My pre-op diagnosis was very close to yours. I chose BMX over lumpectomy because a lumpectomy meant a certainty of radiation and possibly chemo, as well as uneven breasts. I also was concerned they would find more areas once they got in there - and they did. With my BMX, I ended up without needing chemo or radiation (I feel incredibly lucky!), and I have a new set of matching perky boobs! Mine were quite sad sacks after nursing 3 babies and losing a lot of weight several times. I chose to have immediate reconstruction and my PS put the tissue expanders under my skin instead of the chest muscle, so I woke up my normal size! I was pleasantly surprised. I didn't want to have another surgery later for reconstruction because I thought it would be much more painful to have to expand the skin from totally flat chest with more scar tissue. Instead I had skin sparing mastectomy and didn't have to be stretched at all. So you might want to talk to a PS too about all your options, what reconstruction would be like for you if you delay vs immediate, etc.

Ultimately, this is YOUR body and your decision. As much as your husband wants to feel comfortable with how you look, this is just as much a medical decision about your physical and emotional health as it is a cosmetic one. If he had testicular cancer, the same would be true in his case. As much as you might weigh in on how you think it might look if he had one or both removed, that would be pretty low down the list of reasons influencing potentially life or death medical decisions and it would be ultimately his decision about whether ot not he wanted any kind of reconstruction.

Lula73

since there is a family history, have you had the genetic testing done? That would likely help you make your decision too

IllinoisNancy

Hi,

I'm going to give my opinion since I think I made the wrong one in 2006. I had a lumpectomy and SNB followed by 34 radiation treatments and Tamoxifen for five years. In late 2010 cancer came back to the same breast so I had dose dense chemo for five months followed by a double mast and immediate reconstruction using lat flap and silicone. It was followed up with Arimidex for five years and then it came back again. This time it came back to the skin and the Lat Flap. I had to have all the skin on left side along with both implants and lat flap removed. I had to have skin grafs taken off my thighs to cover my breast. A biopsy showed that the ILC had spread to the skin of my stomach too. After consulting with the University of Iowa, they said it is probably in my skin on back and elsewhere too. Now I'm on Ibrance and Femara.

If I had it all to do again, I would of had a double mast. with NO reconstruction. It never felt nor looked normal. Having no breasts is much more comfortable for me. Along with that, the latest genetic test shows I have the ATM mutation which not only causes breast cancer but is also bad when mixed with any form of radiation. I think my cancer spread because of radiation treatments.

Good luck with your treatments.....the good news is I'm still alive and enjoying life everyday:)

LoveBig

thank you all. My younger sister had breast and ovarian cancer. Cowdens syndrome is in our family I tested negative. Went for my appointment this morning I am scheduled for a skin sparing double mastectomy Friday July 10th. I feel relief that it is scheduled, if I choose to do recon at a later time I can. I have to put myself first, my mental and physical health. I want to be feeling good for a bit.

The husband was a different man today, more open and understanding. I think he is afraid for me and for us. So am I just have to take it a day at a time

MinusTwo

Glad you've made your decision. Just remember - men want to fix things. He can't fix this. Women support their men and make everything better. You can't do that this time either. Please update us after your surgery.

Lula73

KMath- sounds like you're on the right path for you. Just like you're having ups & downs, so will your husband. As we approached my surgery date, when we got the genetic testing results and as we approached the 2nd surgery date (that got postponed) my husband was so touchy and grumpy - and he says I'm the one that's touchy and grumpy if I say anything to him. It all goes back to he can't fix it and he's feeling frustrated and helpless. If you can remember that and make allowances for it as you recognize it happening, you two will come out the other side of this stronger than before. Wishing you luck!

ChiSandy

Not to be a contrarian, but...Contralateral recurrence risk low for DCIS patients (from the latest Journal of Clinical Oncology)

I don't know how much of the evidence in that article can be extrapolated to Stage IA Luminal A bc, but I suspect (logically) quite a bit of it. There is plenty of justification for UMX, most importantly, multifocal widely scattered tumors, small dense breast, fear of radiation (though some need radiation even after a MX). And if UMX is chosen, it's entirely logical and reasonable to want symmetry—which is not a given, because reconstruction can't always match the opposite, healthy breast—as well as avoid the postural and musculoskeletal problems of biomechanical imbalance caused by keeping the normal breast and removing but not reconstructing the cancerous one. My BFF had large, high-grade diffuse multifocal DCIS (ER/PR-, so no hormonal treatment) in one breast; both breasts were small & dense (she didn't even own a bra) and she had no interest in dating at 70 after being widowed 15 yrs—her late husband was the love of her life. So she chose BMX with no reconstruction, and her pathology revealed ADH in the other breast but that she needed no further treatment whatsoever. She was lucky.

But if none of the above factors are present, and the instinct is “lop 'em both off, I want peace of mind, and avoid mammograms & radiation," peace of mind is most often an illusory construct. Once you are diagnosed, some disquietude is lifelong, regardless of how mild and early the diagnosis and thorough the treatment. These pages are full of women who thought they achieved peace of mind by throwing everything in the arsenal at their cancers and still got recurrence. And the type and extent of surgery has no effect on the likelihood of distant mets, because that depends on the status of cells already “seeded" to distant sites before initial diagnosis and (based on tumor biology) the likelihood those mets will remain dormant for life vs. “waking up" and beginning to divide.

I chose lumpectomy + radiation & anti-estrogen therapy (AI). My tumor was IDC, Stage 1A Luminal A with clear margins, in a “convenient" location in a very large & fatty breast. With the protocol I chose, recurrence chance was 6% over 15 years (remember, I was already 64). UMX would have reduced that to 3% (on the ground that cells could be left behind on the chest wall or in the skin), and BMX would not have changed anything but contralateral recurrence, lowering my recurrence risk to 2% (again, it is never really zero). BUT overall survival (i.e., length of remaining life expectancy) was exactly the same in all three scenarios. Ipsilateral, non-metastatic recurrence is pretty rare, even with lumpectomy + rads. Contralateral is even rarer. If I do get a recurrence, sadly, the odds are it would be distant (metastasis), which is the most common type of recurrence. And it will almost certainly be because the micromets already disseminated before diagnosis & surgery had evolved to no longer be estrogen-dependent (and chemo would not have killed them unless they were already fast-growing ab initio). And most certainly, I will have no regrets (except for not accomplishing enough in my life while I had the time).

Everyone has her own philosophy, priorities, and must make her own treatment decisions. But it is not legitimate to opine that one's choice is right for anyone other than oneself.

MinusTwo

And on the other side... I had DCIS with lots of calcifications. For 40 years (yup - forty) I was called back after every single mammogram, every single year because my breasts were so dense. I started mammos well before I was 30. You all can imagine the roller coaster of emotions of a call back EVERY YEAR.

Enough was enough. I had BMX and they did find stuff in the "good" breast too. I couldn't have nipple sparing so the BS could get clean margins & clear SLN - three on each side to be sure. I had TE's placed and exchange surgery after 7 months. Fast forward two years - oops, a micro met must have escaped? Or maybe was already seeded in a lymph node? Or who the hell knows. So now I needed ALND surgery - but oops, it's now changed to IDC and, oops, it's HER2+. After neo-adjuvant chemo. surgery, more chemo, rads, Herceptin for year - it's taken me a good 2 years to build my strength back up, and my mental endurance.

Not for one darn minute am I ever sorry I did BMX. Best decision I ever made. Yes, I miss the sexual feelings, but I'm so glad they are GONE!!!

Lula73

MinusTwo

Lula - will you please post the link to the scientific study this data came from. Thanks.

Lula73

Minustwo- here you go! There are other stats they looked at that are listed on the link that are quite interesting as well:

https://uihc.org/health-library/women-breast-cance...

MinusTwo

Thanks. I'll try to read it all this weekend.

HeartdesiresLife

Thank you very much to the contributors of this thread, it has provided me with invaluable long term insight! I go in for the 2nd biopsy tomorrow morning due to MRI findings of a mass on the opposite breast and 1 intermediate level of metastasis concern lymph node on the left. Other than the fear of the unknown, of course the other great fear is build-up of evidence for poorer prognosis.

I was feeling rather optimistic just two days ago and now back to increased anxiety. But definitely not as despondent as when I received BI-RADS 5 report after the call back mammogram/ultrasound.

Breast cancer is quite an enigmatic and draining puzzle but I guess the main message is not to dwell on the fears and to make the most of each day! Once again I deeply thank the contributors of this forum for the pragmatic reminders that we can work through the disappointments and enjoy the mini-triumphs.