Help me decide please

I TOLD my surgeon I wanted bmx. If he hadn’t agreed, I’d have looked elsewhere. Your body, your decision. I wasn’t interested in recon nipples or any of that. Just get them off.

I had 4 rounds of a/c, 1 taxotere. Wasn’t easy but got through it.

I had chemo first, then surgery 7 years ago this week, then rads.

If your dr won’t listen to you, find another.

Ditto to everything MinusTwo said.

And to her third point, you should immediately get yourself set up with an appointment with a Medical Oncologist.

Often patients don't see an MO until after surgery, but if there is any reason to consider chemo prior to surgery, as there is in your case, it's the MO would is responsible for this recommendation and explaining it to you. Surgeons do surgery. MOs determine the entire treatment regimen. The decision on any treatment is yours, so ultimately you can decide if you want surgery first or chemo first, but you should get the recommendation of the MO and discuss the pros and cons, and your concerns, with him or her.

Hi I had surgery first because we didn't think I was going to need chemo. My MRI showed a suspicious node so it was biopsied before my surgery and came back negative. 3 nodes were removed during my bilateral mastectomy and 1 came back with a micrometastases on the outside of it so chemo was recommended. I started chemo 3 weeks after my surgery. I was also back at work half days 3 weeks after my surgery and began working full 8 hour days 6 weeks after my surgery. I worked through my 4 TC treatments. I missed the day of my treatment and sometimes the 4th day after due to SEs. My mom had breast cancer last year in both breasts and opted to do lumpectomies and radiation. We have the same MO. My MO suggested a bilateral before my genetic testing was even done. My mother and I have a mutation on the BRCA2 gene but it is not the known mutation. I had hoped to spare my breasts but I decided to give myself the best chance of not having a recurrence and decided to go ahead with a nipple sparing bilateral mastectomy. After speaking with my BS and PS I opted to only do a skin sparing mastectomy. I didn't want to leave any breast tissue behind and I'm OCD so the thought that my nipples may not point in the same direction or be at the same height caused my change of heart. I have BCBS insurance through my employer. They didn't give me any trouble approving the authorizations for everything I've had done as part of my treatment.

My mom is post menopausal so she started taking Letrozole before her lumpectomy surgeries. It shrank her tumors a good bit before her surgeries.

I hope some or all of this info helps.

@scatteredenergy

My care team originally recommended a lumpectomy and radiation for DCIS in my right breast. That is the normal recommendation on paper without taking specific patients and special factors in account. The treatment plan changed due to the extent of my calcifications and the small size of my breasts. Half of my right breast was involved, so they recommended that I have a mastectomy.

My genetics tests came back negative for known genetic mutations for cancer, except possibly gastric.

Like yours, my cancer was ER and PR + but HER-.

The calcifications started very near my nipple. I was told Immediately that they probably could not save my nipple, when the original plan was a lumpectomy. This leads me to believe that they can make a final decision in surgery.

I chose a double due to my MRI showing “enhancements” in the left breast. The enhancements are not cancer, not even pre-cancer but areas of concern. I thought that the risk of my left breast going rogue and the low rate of recurrence after double mastectomy pretty well justified my choice. Additionally, a double mastectomy also meant that I would not need adjuvant treatments like an oophorectomy or pharmaceutical-induced menopause.

Fortunately my husband’s job offers a benefit that grants a second opinion. Grand Rounds collects your medical records and hires experts in the field to review them and generate a second opinion. Happily, the breast surgeon who gave the second opinion agreed that a double mastectomy was a good and reasonable choice for me.

I had a third opinion with a doc at a cancer center and I didn’t think he read my records. He was way back on lumpectomy and radiation. I also contacted Dr. Tomkovich and Dr. Littrup, who are pioneers in treating breast cancer with cryoablation. I was not a candidate.

I let my team know my choice and we moved forward. My doc didn’t mind that at all and said nothing about my decision.

If money is an issue, you may wish to talk to your insurance or to the social worker at your hospital.

I have read that many women “needlessly” have doubles when a single would do. Sounds like insurance propaganda to me, just like the recommendation to have a first mammograms at 50 is.

Someone on these boards wrote something I found very useful. Our care teams are specialists in surgery, oncology, radiation, etc. You are a specialist in you. Educate yourself on your diagnosis and your body, decide what treatments and course you want to pursue

Apologies if this is too long. I wanted to know where you and I were similar and different.

I was very concerned at first about keeping my nipples. Then I found out that with a BMX and Implants I wouldn't be able to feel them anyway! That was news to me.

One had to go because the cancer was too close. That one was clear on pathology. The other one, the "good" one, had ALH on pathology, so I'm happy to lose it.

One of the deciding factors for me was that nipples are sometimes hard to match, and they often seem to be put on in the wrong place and they look weird.

I have a friend who is very displeased with her nipple placement, so I know I made the right choice for myself knowing what upsets me.

ScatteredEnergy, with implant reconstruction, all the breast tissue is removed and the PS puts in a piece of silicone. So think of it like this. You take out all the natural stuff (including the nerves and blood vessels) and you put in the equivalent of a soft ball. Therefore no nipple sensations, since all those ducts and nerves that lead up to the nipple are gone.

The best you get after implant reconstruction is skin sensation, which some women get but others don't. There also can be phantom feelings - for the first couple of years after my surgery, when I got cold I could "feel" my nipple harden... except I no longer had a nipple. So when you read about someone who's had implant reconstruction proclaiming that she has retained "full nipple sensation", it's probably all in her mind, in that our minds are used to certain conditions leading to certain physical feelings, and it can take a long time before our minds figure out that those feelings aren't happening anymore.

It may be possible to regain somewhat more sensation with some methods of autologous reconstruction but it's not a sure thing and many women have similar results to those who have implant reconstruction.

Scattered - and as above, it's very hard to keep them symmetrical. You often get one pointing up & out while the other is visably lower and pointing in. 3D tattoos are amazing.