I'd love your thoughts, no really, I would

NvrGvsUp- we all have to learn from scratch with these docs. I researched almost nonstop for 2 weeks straight after meeting with the breast surgeon locally.

To answer your questions:I had my hysterectomy during my stage 2 recon. (DIEP flap with NOLA is typically a 2-3 stage process depending on if you want/need nipple recon or tattoos.) stage 1 = MX + tissue harvest and transfer, stage 2 = revisions like lift, reduction, fat grafting, scar revision to any of the scars that need it and/or nipple recon, stage 3 = nipple recon/tattoos. Stage 2 & 3 are optional but most do the stage 2 - Its a much shorter surgery than stage 1 and much easier/quicker to recover from.

No you do not lose any core muscles when you do a DIEP flap recon. And you can do sit-ups and crunches after-just not right after. A lot of people get DIEP and TRAM flap confused. It's TRAM flap where they use the core muscles and leave you with a weakened core and the inability to do sit-ups/crunches. There are some women whose dr did take a little bit of muscle and that would technically be called a modified or hybrid TRAM flap. In most cases it should not be necessary to take any muscle if you've opted for DIEP - a lot comes down to the surgeon's skill. Those Frankenstein looking pics you've seen go back to skill too. There's one doc in particular that I cringe every time someone posts his name on the boards as a recommendation off a google search no less (they have no experience with him).

I am a HUGE researcher and here's what I found: when it comes to skill, number of natural tissue recons done per year, infection rate, failure rate, aesthetic outcomes focused on the whole woman not just her breasts - the 3 top places for natural tissue recon are NOLA (The Center for Restorative Breast Surgery), Charleston (dr Craige & Dr Massey) and PRMA. I had mine at NOLA and would recommend it to anyone who wanted this type of recon. The docs there are part surgeon/part artist (really). I've had numerous surgeries at various hospitals in multiple states-some local hospitals, some big teaching hospitals- starting when i was 3 so I've got a lot of hospital stay/surgery experience. Ive never had overall care anywhere like I did there. It was worth traveling for and women even travel to them from the UK and Canada to have their recon. The docs there even fix other dr's botched jobs and the end result is nothing short of amazing.

There is FB page just for women who went to or are looking into going to NOLA or Charleston. It was created because the experience & way they do their recon is different than other places. If you’d like to be added to the group as you’re investigating and ask some others about their experience with either group/or with the procedure itself,I can add you. The membership is by member addition only and can’t be found by searching for it. Just let me know if you’d like to be added.

Here's the link to their website complete with the different procedures they do and before and after pics. The pics where you see a football shaped “flap" on the breast is where someone did not have skin or nipple sparing mx and they grafted the skin to create a breast. The pics without it are the skin/nipple sparing ones where they basically use your tummy tissue to “stuff" your own breast skin after removing the breast tissue. Feel free to PM me with any questions about flap recon, BMX, NOLA, etc.

www.breastcenter.com

I told my PS repeatedly that I wanted to stay the same. He specifically asked if I'd like to be bigger or smaller and my reply was that I'd rather not have surgery at all and remain the same. But of course - that isn't an option.

He told me that they would weigh the amount of tissue that was removed and he would use implants that weighed the same amount. My implants weigh more. I was more pissy early on when I had a bunch of swelling and thought they looked like man boobs. My BS agrees that they seem a little wide for my frame, but the PS stands by his choice.

I've considered swapping them out, but there are no guarantees. Do I really want to go through another surgery? What if I'm actually less happy in the end? And so I wait. And meanwhile become more accustomed to how they look and feel. They are replacement fake boobs, not accessories. They will never be the original equipment - not that the originals were all that at 50 years old and 3 pregnancies later!

I don't think there's anything you can do about how good your skin or tissue is. The things that affect it the most are probably smoking and radiation. Otherwise, it's kind of the luck of the draw as to how stretchy, pliable, oxygenated it is.

The warranties on implants cover "unexpected failures" for the most part. They are expected to just sit there and do their job for at least 10 years. I was told that most implants these days will actually last for probably 15-20 years and maybe more.

I don't have much info on the MRI's. Personally, I don't mind the MRI that much. I worry about a recurrence that no one can feel around my reconstructed breasts since that's all that's recommended to me - follow up with BS every 6 months. I see my MO every 3 months as well but don't think he knows what he's even doing with a breast exam.

I had a mammogram in November to assess a lump behind my nipple. It turned out to be probable fat necrosis but scary. I didn't think they could even do mammograms with implants!

RE: Your BS and Tamoxifen -- Your medical oncologist (MO) will be in charge of your hormonal therapy, not your BS. Your BS was probably just telling you that you will probably do Tamoxifen because many people do. I chose to take the AI because it is somewhat more effective than Tamoxifen, and I usually don't get many side effects from drugs. If I developed serious joint pain on Aromasin, I would still have options. I could take another aromatase inhibitor (like Arimidex or Femara) or I could switch to Tamoxifen.

RE: Staging -- Many women do retain their initial staging, but staging isn't perfect. Certainly, different scans showed my tumor as different sizes. The ultrasound said that my tumor was 3.9 cm.; the MRI showed that it was 5 cm. and had a satellite tumor nearby! My MO viewed the MRI as more accurate. My tumor was close to my skin, and it measured 5 cm. with a ruler!

Best wishes!

I meant to say that it is the decision about the hysterectomy that I think doesn't need to be rushed. That decision can be almost as confusing and complicated as the cancer surgery. If you have been examined and there is no evidence of cancer there, I wouldn't go there just yet. Hysterectomy has been a notorious moneymaker. I read recently (don't know where) that many doctors don't even think a woman's sexuality is important if they are over 50! WTF! Most of them probably aren't even aware of the difference I described. I certainly wasn't. My hysterectomy had nothing to do with cancer. My big concern at the time, and the decision I made were based on the use (or not use) of mesh and the use (or not use) of the morcellator for robotic surgery....VERY BIG controversial subject even if you are not concerned about sexuality. If I were you, I would not get the hysterectomy now any more than I would have a kidney removed just in case it becomes cancerous in the future.

Sorry about the bold type - it happened when I cut and pasted and I can't seem to change it. It makes it look as if I'm shouting.

I had a BMX and have gone "flat" with no prostheses. But I am divorced and single and older and personally don't care. I do think even if I were younger and/or "with someone" I would go the same route.

I had a paracervical (regional) block for my BMX and did not require pain meds at all, which meant I felt almost normal immediately after waking up. No groggy nausea in the hospital at all.

Tamoxifen will be given since you are premenopausal but if you have ovaries removed you will probably go on an aromatase inhibitor.

I am not sure why the surgeon is so sure of treatment since surgical pathology generally is key, and you will probably have an Oncotype test to tell you what your risks are for recurrence as well as whether chemo would be of any benefit or not.

Of maybe the biopsy pathology was somehow definitive or you have already had an Oncotype.

Your cancer so far looks better than it could be, shall we say...maybe stop reading and researching until you have the pathology from surgery.

Your BRCA makes for more decisions than some of us have to deal with, so sympathies!

I'd have to say that it sounds as if this PS is quite busy and therefore perhaps doesn't have time to do anything beyond what is quick and easy.

I'm all for the expertise of major university settings, but I do wonder if you don't become just more of a "number" there.

My understanding is that nipples generally only have to be removed if the cancer is in close proximity. The only instance that makes sense for saving them but relocating them would be for someone with a large breast who wants to go smaller, as they do with breast reductions.

But here's a thought about infection - breasts are not sterile. A nipple is a conduit to the outside world. Those ducts that allow breast milk to be expressed are present.

I had an infection on the cancer side 5 weeks after surgery. I had to be hospitalized for IV antibiotics for 3 days and then went home on 2 weeks more of oral ones. It was scary because there was the threat of losing the implant.

But was that really because I had nipple sparing? Because I had an incision under the breast? The other side was fine ...

Greetings. I'd like to know if any of you on tchp had your last (sixth)dose aborted because your onc thought you were experiencing s toxic reaction? Throughout the tchp I have severe diarrhea skin changes excoriated skin on private area. Severe mucostis which made eating and drinking difficult. And LED to dehydration..the need for potassium infusion. Throughput treatment I had three blood transfuions and one platelet transfusion. I would like to have had the last treatment maybe after a delay or at a reduced dose. Have any of you experienced a disruption or abortion of one or more treatment s when. On tchp? I so wished I could have discussed whether there was a way around the side effects so that I could have completed the last dose?how critical do u think missing the last dose is? Breast tumor down from 4cm to about 1 cm. Next is a lumpectomy and herceptin for one year and radiation. Thoughts and reactions being sought. Thanks! Michela riccio

Well that stinks. I personally would be “thanks but no thanks”. I would go with a different PS, even if I ended up with the same surgery. I wouldn’t be able to handle that kind of non interest. You do have to see them for at least a year. I do know that DTI over the Pec has not been around long but no one from my team said it was controversial. I’m outside Chicago. I did have to switch hospitals for my surgery but my BS had surgical privileges at the new hospital and didn’t mind the move. This new hospital had some special machine that tested blood flow in tissue. It also uses ultra sound to insert iv’s which was awesome for me. I have hard to find veins-so no poking around. I also had a pectoral block for surgery and did not need pain meds like Norcol. I did use a nerve blocker-Gabapentin, Ibuprofen and Valium along with an antibiotic and a wound Vac. My BS (is a breast surgical oncologist) and PS are both women. They are both young and very well informed on current treatment methods being done at Sloan and MD Anderson. I know this because they referenced studies from both while we discussed my treatment plan I couldn’t do nipple sparing because my tumor was directly under my nipple and as my MO said “the team talked about you at our meeting and you can’t keep it. It’s gotta go”. My PS is not technically a part of my hospital team and had no say in whether I kept it or not. My team consist of My Medical Oncologist, Radiologist, Radiology Oncologist and my Sugical Oncologist. They all talk to each other, sometimes calling each other while I’m there at my appointment. These are extremely busy people but I never feel like I’m not being included and I wish the same for you and everyone going through this. It’s hard enough without feeling dismissed by someone your trusting with your life and your appearance.

NvrGvsUp, your visit to the PS sounds horrible. What a self-important jerk! Time to cut your losses and move on. You're about to embark on a long-term relationship with your PS and you need to have fill confidence in them.

My original PS butchered me. That's the only way to say it. She did a one-step mini recon that was supposed to give me small breasts. Everything that could go wrong did go wrong and now I'm left with terrible scars and no breasts. Her remedy is "I'll just slap some implants in there. It'll be great." Except that I don't want implants. I totally lost faith in her.

I went to a second PS to discuss my flap options, since i dont wany implants. He wanted to do a lat flap plus implant. Excuse me? Did you not just hear me say "no implants?" When I pointed out that many who have a lat flap are left with chronic pain and muscle weakness he claimed that he had never heard that. Idiot. I know of one of his patients who has exactly those complications, three years post-op! Bye, Felicia.

At this point my only hope is the doctors at NOLA. They feel sure that they can do a DIEP flap. I know several ladies who have had their flap surgeries with them and are quite satisfied with the results.