Erica

Shrink,

That's the great news--no mets!! If you had rads in the axillary area, it was very likely meant to destroy any cancer cells that might have been lurking in remaining nodes. My m-i-l was diagnosed with bc in the late 1950s, when she was 30 years old. She didn't have any nodes removed but had heavy radiation to the axilla. Like you, she developed lymphedema. But she also lived 52 more years after her diagnosis! She recently passed away, but not from breast cancer.

Barbara

Summer,

Microinvasion means that it's no longer DCIS, but that some cells have invaded into the breast tissue. You would need to remove all the DCIS and do pathology on it to determine whether there was any microinvasion. But even when the DCIS is carefully examined (pathologists make up slides of the tissue that's been removed from the breast), a pathologist never examines every single bit of the what's removed. So, it's possible that a microinvasion could be missed. This is why surgeons like to perform a sentinel node biopsy when there's extensive and/or high grade DCIS--to make sure that nothing has spread to the lymph nodes.

I had extensive high grade DCIS in my left breast and had a mastectomy and SNB. No invasion was found in the eleven slides that were examined and the sentinel node was clear, which reinforced the likelihood that no microinvasion was missed. There don't seem to be any 100% guarantees when dealing with this.

Hope this helps.

Barbara 

Since you won't be needing radiation, I wonder why your PS recommended a lat flap, rather than simply an implant. Often a lat flap is recommended when the skin and chest muscles have been affected by radiation. Apparently, your doctor feels the best symmetry can be achieved by transferring tissue to cover the implant.

Since you're still debating whether or not to have reconstruction, you might want to take a look at my non-profit website, BreastFree.org, which is for women like you, who are in the middle of the decision-making process. The site includes Personal Stories and Photographs, so you know what to expect.

For excellent information about reconstruction options, including personal stories and photos, check out breastreconstruction.org.

Barbara 

Barbe,

Good luck with your surgery. I love your answer to your friends. I do think wearing breast forms allows my friends to kind of "forget" I don't have real ones. It seems that many women, by artful dressing, are able to look lovely without any breast forms. Since I've never been good with scarves and tend to wear simple tees with no vests or sweaters (too prone to hot flashes!), I've found wearing small, light breast forms is a good solution for me.

Given your inclination not to have reconstruction, it's certainly worth trying that route. You'll have the quickest possible recovery from the mastectomy surgery and if you change your mind later on, you can have delayed reconstruction.

You might find my non-profit website, BreastFree.org, helpful at this juncture. Many women from this forum contributed their personal stories. And there are photos to help you know what to anticipate after surgery, as well as a section on preparing for surgery and one on living "form-free"--that is, going flat.

Barbara

Serina,

Although it's not medically necessary for your other breast to be removed, it might give you more peace of mind--less worry about a second cancer in the other breast. That's one reason some of us have opted for bilateral mastectomies. Another reason would apply in your case--since you're big-breasted, you might feel off-balance with no prosthesis and would have to match your large breast with a large breast form (prosthesis). From reading many posts on this site and from feedback on my own non-profit website, BreastFree.org, it's my impression that, in general, women who wear smaller, lighter breast forms find them more comfortable than women who wear large forms. Of course, with bilaterals, you could also take GryffinSong's route and not wear anything!

I had a bilateral mastectomy and wear breast forms. Over time, I've accumulated different forms, some unweighted, some silicone, some not. I can exercise, swim, and wear tight-fitting clothes comfortably and I look totally natural in clothes. This is also true for women with single mastectomies, but those with larger breasts seem to report that it's a bit more challenging to find comfortable solutions.

Hope this helps. 

Barbara

If it's just a local recurrence, it's not really "worse", just awful to go through again. And also, if you had a lumpectomy and radiation before, you will probably need a mastectomy now (with or without reconstruction), since you can't re-radiate your breast.

I'm guessing that the way the calcifications looked led your radiation doctor to say it's cancer. If the calcifications are clustered in a certain way, it's more likely to be cancer, though still by no means certain--you'd need a biopsy to be sure. When new calcifications appear in an already-treated breast, I don't think they can say for sure whether it's a new primary or a recurrence of the prior DCIS. As Bobby said, if it's still contained in your breast, it's totally treatable.

Barbara

BreastFree.org

Margaret,

Thank you very much for your kind words about BreastFree. Like you, I found it very hard to sort out all the conflicting advice I got before my bilateral surgery. My inclination was against recon, but I did consult a plastic surgeon and even scheduled bilateral lat flaps (I'd had previous radiation) before deciding not to have reconstruction.

I would imagine that the fact that your foob looks so good must make it tougher to contemplate getting rid of it. But I hope your PS will honor your decision and I especially hope that removing the implant will remove all your pain and discomfort.

You are so right that all this has been a huge learning experience. If you do have your implant removed, you'll start on a new path of learning what works best for you. For me, at least, that was a process of trial and error. My husband and I laugh about the many "breasts" I have hanging around the house. (Two pairs were acquired with insurance; most of the others are various less-expensive non-silicone options.) In all of this, reconstruction or not, a sense of humor is certainly helpful!

Barbara

Dawn,

If the pain has been bothering you for a few months, it's definitely a good idea to have it checked out when you see your oncologist. Hopefully, it will be completely unrelated to cancer, and knowing that will make you feel a lot better. 

It's amazing how something a doctor says can stay with us. I know it's true that there are no guarantees, but it probably wasn't helpful for your doc to emphasize that. As you know, many women do just fine and never develop mets. 

Please let us know how it goes when you have your checkup.

Barbara

Hi River,

Don't be too panicked--to my knowledge, there haven't been many studies about this and the one I know about was small and "suggested" that parabens can act like estrogens when absorbed into the body. But the study, as I said, was small and not conclusive. However, when I read about it, shortly after I was diagnosed, I decided I might as well avoid parabens if I could. I'm not paranoid about it, but I've been able to find some good products that don't have parabens and are very gentle on my skin (I have rosacea). I use Cetaphil Moisturizer as a general moisturizer for my face and body. I use Cetaphil 15 SPF face lotion during the day--it has Parsol 1789, which protects against all the dangerous rays. I've also tried the Jergens that Mamhop mentioned and liked it. For shampoo, I found that most Dove shampoos and conditioners don't contain parabens, so I use them. My Dove deodorant doesn't have parabens.

I just looked up Parabens on Wikipedia. That site refers to the study I mentioned and says:

One scientific study reports that parabens were found in samples of breast tumors. The validity of this study's conclusions have been debated in the scientific literature. Nevertheless, this study has fueled the belief that parabens in underarm deodorants or other cosmetics migrated into the breast tissue and contributed to the development of the tumors. However, no causal link with cancer has ever been proven and so far there is no scientific evidence to support any link with any form of cancer. A recent review of the available data has concluded "it is biologically implausible that parabens could increase the risk of any estrogen-mediated endpoint, including effects on the male reproductive tract or breast cancer" . . . In addition, the American Cancer Society has concluded that there is no good scientific evidence to support a claim that use of cosmetics such as antiperspirants increase an individual's risk of developing breast cancer.

So, please don't worry too much about this. Maybe ask your oncologist. But, if you decide to try to avoid parabens, there are options out there.

Barbara

AnnP,

Your story is really interesting--glad the underwire bras work for you (I'm still nervous about using them because I had radiation on one side). Over time (two years since bilaterals), I've come to feel that the bra is often more important than the prosthesis and it sounds as if your experience reflects that. 

Regarding your mom's breast forms, that's a great story! My m-i-l had bilaterals and, while she never gave me hand-me-down breast forms, if she found a bra she really liked, she'd buy an "extra" for me to try. Sadly, she just passed away at age 82, not from breast cancer, though--she was a 52-year bc survivor!

FYI, Amoena has now changed all the names of their forms. I believe the one you describe, with the white back, is now called the Individual, which comes in both asymmetrical and symmetrical shapes. In the asymmetrical, Amoena has just introduced the Individual with Comfort+, a new technology to minimize perspiration behind the form. I suspect they'll also come out with Comfort+ in the Individual symmetrical soon. So next time you need new forms, that might be something to look into.

Kathi,

Breast forms are usually under warranty for two years, so you shouldn't have to worry about making them last--if they break down, they would have to be replaced by the manufacturer.

Barbara

BreastFree.org