Exchange City

lilah: I must be insensitve, too--I never had any problems drinking cold stuff--proof is the quadruple sized margarita I had on the 4th--no problems at all!

Kristinka- Regarding your comment to Robyn about the safety of NSM's.  You said your doctor says there are not good studies that prove NSM prevents BC recurrence as well as traditional MX.  Just wondering if your BS is trained in NSM, because my BS says quite the opposite and there is current research to back her up.

Also, those with DCIS are excellent candidates for NSM, unless their cancer is close to the nipple, because DCIS is contained within the milk ducts. The ducts feed into the nipple so once the ducts are gone there is no way for those cells to spread to the nipple in the future.  BC starts in breast tissue, not in the nipple.  Also, during MX, the BS will scrape the cells within the nipple and biopsy them right then and there.  If any cancer cells are detected the nipple would be removed at that time.

For those interested in learning more here is a link from an article in March of this year-

http://www.medscape.com/viewarticle/717914 

And here's another one as well- 

http://www.ncbi.nlm.nih.gov/pubmed/19483564?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed 

 

If anyone is considering a NSM, please consult with an experienced BS who performs this procedure.  My first surgeon, who I found out later was not even trained in NSM, tried to talk me out of it saying I was not a good candidate.  I decided to get a second opinion from a qualified surgeon, who said I was an excellent candidate, had the procedure done in March and am extremely pleased with the results.  I certainly would not have chosen vanity over health if I thought it was more risky but current research supports my decision.   

Robynkk, please PM our member whippetmom.  She lives in SoCal and is compiling a list of surgeons who perform NSM in your area. 

I looked through your other posts on other threads and see you have questions regarding genetic testing, having daughters tested, etc.  I'm BRCA2 with 2 daughters and a granddaughter.  I strongly urge you to look for a comprehensive BC center since you're near a large metro area.  After my aunt was diagnosed with Stage IV in '08, I was bumped into a higher risk group.  I talked to my OB/GYN about it and she took a brief family history, and decided I should get tested.  I had a complete BRACAnalysis through Myriad Labs and was fortunate that my insurance covered the cost.  In my situation, Myriad did gene-specific tests at no charge for 3 of my relatives: my sister who was already a BC survivor, and my 2 adult daughters to look for the same mutation.  This is a short version of the test and looks only for a specific mutation.  My sister was positive but my daughters were negative and therefore cannot pass this mutation to their children. 

At that point I was referred into a high risk BC screening clinic at MD Anderson, and from there found my BS and PS, who work together and coordinated all aspects of my NSM.  All of my caregivers are at the same place and the communication coordination among them has given me a lot of comfort and saved me a lot of time. 

Please let us know how you are doing.

Betty

TSmith - We're on a similiar schedule.  I had my pre-op yesterday and my surgery is 7-23.  I was surprised to learn that he's reserved a room for me (23 hours).  From what I've read on here, many women are in and out in a few hours.  I live 2.5 hours away and had a lot of problems with the anethesia the last time, so maybe he's just taking precautions. 

 The recovery time is a lot easier than what you've already been through (so I've been told).  You're almost DONE.  And yes, getting these TE's out will be a welcome relief.  Maybe I can get some sleep!   

 A funny story ... after my appt. I went shopping and tried on some pretty summer dresses that were on sale.  Haven't done that since my surgery in Feb.  Well, couldn't get those dresses over my foobs.  They really are immovable.  Giggled to myself in the dressing room.  The salesperson asked me, "Can I help you?"  What could I say?  I just laughed and said, "No, thank you."  LOL.  Yippee squishy very soon.  Congratulations on the almost end of your journey.

Betty thank you for the information, I will PM whippetmom.  I do kind of feel out on my own here with this BS, she just wrote down the names of 2 local PS's she works with and 2 oncologists and told me to call them all, see them, look at photos and make a decision (after this next scheduled MRI).  It would be really nice to find a team that I am comfortable with and don't have to drive all around making appointments with all of these people that I really don't even know work well together? 

I'm not really worried about the feeling/sensation with the NSM.  After my implants were originally put in 25 years ago I lost all sensation in my left nipple anyway so......that's okay.  Looking forward to working with a trusted team of experienced dr's doing NSM.  I will also check and see on Thursday how far away the cancer is from the nipple since that makes a difference.  Again, sooo glad to have found you all, thank you so much.

Robyn

 I posted this info in the bra thread but am posting here again in case this info helps someone with the same situation. 

As many of you know, i have my foobs too close together to wear a bra (confortablely). So, with the great help of whippetmon, I purchased this "v" bra that helps to keep the foobs separate and at the same time keeps them from migrating to the armpit (a problem i also had with my TE).

I'm coping the link here in case someone else has the same problem. There are pictures in the picture forum as well..

http://www.makemeheal.com/mmh/product.do?id=35231

She also found this Wacoal bra that helps to keep the foobs separate.

http://www.herroom.com/Wacoal-65115-Body-by-Wacoal-Seamless-Underwire-Bra.shtml

I'm planning to wear the "v" bra at night and the Wacoal bra to come to work. For as long as it takes.

THANKS WHIPPETMON!!

pd. Sorry the short message, now that i'm working again it's hard to keep up with this site a

I have been away on vacation and am so behind but wanted to say hi to everyone.

Deborah, a belated happy birthday to you. I hope it was wonderful. Thank you for posting pictures of the gifts. My family has been following this whole adventure with me and they feel like they know you too. We are all so thankful for what you have done for me. 

Congratulations Val on being done - what a wonderful feeling that must be. You are not a wimp. I will be exactly the same way. I would love to have a little tattoo somewhere hidden to kind of sum up the fight but I'm thinking the foobs are the only place I'm going to be able to make it through and that is going to be hard for me.Can't wait to see pictures.

Brenda, so sorry your exchange was postponed. It is better to be well and safe before another surgery. Aug. 5 will be here before you know it. I hope you figure out what is causing the rash.

Good luck to everyone with upcoming surgeries and good healing to all who have just been thru.

Melissa

jkz, sorry about your delay. I hope everything clears up and you are rescheduled soon. It will be here before you know it. Hang in there.

Brenda, I honestly think my rash was from being in the pool with the chlorine and chemicals and then being in the sun! It happens to me every year. Though when I was in Mexico not a bump in sight.. My doctor did prescribe me a steriod that I have to take for a week. I am scheduled again on July 26. It does look like its clearing up.. Everyone pray for me.

Brenda, My son went to the doctor about a week ago with a horrible rash that the doctor said was a virus and not contagious. He got a predizone and it cleared up is 2 days.. I am taking the same thing but the oral dose.  I had to take 6 pills the first day and one less each day for the following 5.. So I am crossing my fingers hoping it goes away and stays away.. He told me to stay out of the pool and the sun. So I am following his orders...

Just finished my nightly fill of ice cream and have th familiar shivers!  

Well, I am five days out from my exchange and had my first bout of the "post partem" boo-hoos tonight.  I have been trying not to be hyper critical in these early days after surgery and just heal and enjoy the new softness.  But yesterday and today I have been scoping out the new girls and beginning to worry that my lat d/rad breast is too flat compared to prophy side.  Plus tomorrow is my post op with my PS so I am a little anxious about that.  Well, anyway, I decided to ask my dh to help me take some photos to post on the forum.  I was so disappointed with the photos--I got all teary because the pictures looked a lot worse than what saw with my eyes. Ick.  So I won't be posting this week. I was looking forward to feedback from you guys, but that will have to come later.  I know this is reconstruction, not augmentation, but the reality some times smacks you in the face.  deekaay

Thanks for your information, Whitedove.  I assure you that my BS, who is in his 40s, is at the cutting edge of surgical techniques and he practices at a large university hospital in a major metropolitan area.  He does the procedure for prophylactic MX and he explained to me exactly how he goes about it.  He wants to wait until there are more complete studies out before recommending it to BC patients.  It was definitely an issue I thought long and hard about.  We as patients have to realize that there is a real professional debate over NSM, which is a great thing and will lead to better knowledge about BC treatment.

Kristinka, I want to ensure I understood your situation so as I and others potentially considering NSM are properly informed about the fact that of nipple sparing mastectomy is safe with the correct patient profile. NSM is on the vanguard of oncological/ breast reconstructive surgeries, but that does not mean it is unsafe or that we NSM gals are ticking time bombs waiting for our cancer to return! NOTHING COULD BE FARTHER FROM THE TRUTH.

From what I gathered from your situation, your doctors differed in opinion about NSM for YOU. Does that negate the safety of the issue debated for all? Or does speak to a  process, one that all doctors go through when considering a new procedure, method or concept for a certain diagnostic picture. Some diagnoses do not make for good candidates such as in the situation where it is a question as to whether it is DCIS or atypia. NSM is a viable procedure for the right candidates. This should be clear for others so they may seek more information about this possible option and have it be determined by practitioners trained and skilled in the procedure. Many small invasive ductal carcinomas located far enough away from the NAC can be eligible.

It is a natural tendency for BC patients to stand behind only for what they themselves experienced and promote a single perspective. It is a great service to share all experiences that are positive with Nipple Sparing MX, so that potential beneficiaries who may be eligible won't prematurely shut down the possibility of considering this viable, safe and well-researched procedure.  

Thank you for sharing your insights and for allowing me to share my experience too. I am glad about your good results from your procedure. Best wishes.

With me having a prophy BMx, i had the choice of NSM or not. Given my high risk was due to past radiation and family history though,it was not really advisable, even though my BS is exparienced in this procedure. He said it WAS totally my decision and if i chose it he would go with it for me.

I asked about the remaining risk if i decided to keep my nipples and he said that because  nipples are breast tissue,essentially leaving them behind would be leaving breat tissue behind and therefore would leave me with a slightly increased risk,as opposed to if he took the nipples.

I said i wanted to reduce my risk as much as humanly possible,so therefore he said that to do that,it would realistically mean taking them off. He did say that the difference in risk would only be very small,but you would still be leaving some risk.

 For ME this was not an option. I wanted to know that (God forbid) if BC arose in my lifetime,that i'd done EVERYTHING within my power to try and prevent it.

I didn't know you could spare the areola  only though and still take the nipples. I am wonderin g whether the areola is still classed as breast tissue or just skin?

There is no one right answer in this stupid F&&king BC stuff.  It would be a lot easier it there were. 

We MUST question and ponder.  If it had not been for personal stories from BC women, I might have had chemo that would not have benefitted me at all.  My oncologist insisted that I should not have the OncotypeDX test and go ahead with the chemo just to be sure.  Luckily, other women told me about and I researched the OncotypeDX test and finally begged the onco into ordering it and voila...score of 0. 

It was not recommended and I did not "need" to prophy MX the other side...but I chose to because I wanted to.  I also chose to have a Hysty/ooph.  The now ex-onco also seriously pushed Tamox and refused to order the CYP2D6 test which..again...I learned about here.  I had to get another doc to order it and sure enough, I am missing one of the alleles on the gene.  I had already decided not to take Tamox based on my research and arguments on both sides by others here on these threads.  Many on these threads have docs who do not rely on the CYP2D6 test.  But, I decided from all I learned that it mattered to me....maybe just as an excuse and some kind of vindication for a decision I wanted to make anyway. 

So, all I'm saying is....I like hearing both sides...and in this stuff there are always at least two opinions.  I also like hearing it from people who have done their homework and feel adamantly about why they chose what they chose.  None of us get a guarantee...no matter what we choose.

The choices we ultimately make don't always seem rational to someone else.  Look at me....I chose to hack off a perfectly good breast but then balked at Tamox or an AI which most women take.  I decided that I am going to believe that surgery and complete change in diet and supplements cured me.  Many do not agree with the natural aromatase inhibitor supplement path I am on.

Having an oncologist you believe you can trust with your life helps a lot.  I quickly learned that I did not have that.  So, for others in the same boat...it helps to hear all the sides.

I believe everyone should research until their brain hurts to be sure that whatever decision they make is the one they can live with.  And then...let newbies know what you did and why so they know what to further research to make their decisions.  And then...LIVE.