Young, active & Brac1 +

purelove5

Hi all,

 I am new to this forum stuff. I come from a family with strong history of breast cancer. My Mom had it 3 times & had reconstructive mastectomy her 3 go-round. I have lost an Aunt, & cousins & more up the family chain to breast cancer. I found out the beginning of last year that I was BRAC1 positive. I have been seeing doctors & had my first MRI 6 months ago. They found a benign cyst so I will be going next month for another MRI. Being that I am at 87% chance of having breast cancer I am going to have a reconstructive mastectomy with implants(possibly by the end of the year). I am TERRIFIED.I don't like going to doctors or surgery or taking medicine. My hugest concern is that I am only 23 years old & I am super active. I work out alot, surf, run, yoga, bike! I am scared this could all be taken from me for the rest of my life. What if I don't get my strength back or can't be as active or can't jump on my surf board!  My Mom is 54 & for her age & what she has been through she has done great. Has anyone has issues with this after surgery....not having your strength back?! Also, with just having breast implants I am super scared of having something foreign in my body. Does it feel weird? Do your breast at least look somewhat normal?! Thanks so much! I hope I can find some peace & answers to all my questions. I feel like the doctors sometimes only tell you so much & most of the time I'm having an anxiety attack because I don't like being there.*

vmudrow

Hi purelove5 - Sorry you are going through all of this at such a young age.  I am 50 and decided to have masectomies (no cancer, but precancerous cells, and strong family history, negative for BRAC).  The surgery was not bad for me, hospital for one night, pain pills for three days and then tylenol.  I play tennis, bike, hike, gym, etc. and I am able to do everything except (from my plastic surgeon - push ups, bench presses or flys).  It does feel a little weird, but I am getting more and more used to it.  It has been almost a year since my original surgery, and 6 months since my exchange to silicone implants.  Hang in there and keep us posted.  Let me know if you have any questions.  Hugs, Valerie

purelove5

Valerie, Thank you! I am soo worried about not being able to do push ups or swim! Did you have the latissimus surgery where they used the muscle from your back? My doctor said I shouldn't do that because it would feel weird doing exercises or may interfere. I am just doing the removal with expanders then the implants later.

vmudrow

purelove5 - No I had the tissue expanders with silicone implants latter.  My surgeon said I didn't have enough fat to do a tummy tuck (good thing?) plus she said that does weaken the muscles if cut the stomach muscles or the back muscles.  The plastic surgeon just doesn't want me to do any exercises that are specifically targeted for the pec muscles (he says he sees implants moving toward armpits if the pec muscle it built up)  - anything else is fine.  I went water skiing with the expanders in and bike rides.  It's just hard after both surgery to not be able to do much (I could ride the spin bike) for 4-6 weeks.

purelove5

My mom had the one where they use the stomach fat. Most of her issues is just from having cancer so many times with so many surgeries on top of it so its hard to compare it to what I will go through. Were you able to spare the nipple & areola? Is the outer appearance a lot different? I also don't want mine to look too fake but not sure how big or little to go. When I was 16 I had DD & very perky fake looking boobs(which was very uncomfortable & annoying, I hated it). I am about 10 lbs ligther & it all disappeared from my boobs putting me at a comfortable D. They are saggy now. I hope I am not asking too many questions but I haven't had anyone to talk to that has gone through the same thing other than my Mom but her situation is different. Thank you soooo much for all this info! I go next month for my 6 month MRI & will kinda determine how soon I should have my surgery. I am getting married next year(depending on my surgery situation) too so it has been tough to decide if I will have enough time to get the surgery done before & be back to my normal self. *

mdg

I can understand how scared you are and yes, you are so young.  I want to tell you that I consider myself young (45 - which I am sure sounds old to you!) but I too am active.  I teach aerobics and have a 4 year old son.  I am a bikini wearing mama and love to be really physically active.  Getting BC was a complete shock..I have no family history at all.  I had a BLMX on Jan 27th and am in the middle of chemo.  I am ready to teach aerobics, but my medical oncologist won't let me until after chemo (boo!) though I continue to workout 5 days a week.  Anyway...I had reconstruction done with tissue expanders and I will get my implants in June.  I feel great really.  The tissue expanders are ugly (so time your surgery in the winter months where they are covered up!) but look ok in most clothes for now.  I have worked with a physical therapist to make sure I did not lose any range of motion through this.  I can tell you I have NO pain or tightness even with the tissue expanders at this point.  I guess I just want to give you hope that all will be OK.  I am the kind of person that doesn't even like to take motrin for a headache so going through this was scary for me!  I can tell you the BLMX was not as bad as I thought at all.  It kind of felt like a bad workout feeling.  I was off pain meds on 5 days.  I got drains out within a week and that was delayed because of a snowstorm...I could have had them out in 5 days.  I did the fills...I have one more to go.  My best advice is to stretch (whatever stretches your plastic surgeon gives you) because it gets tight, but like I said, I did PT exercises and stretches daily since surgery and have ZERO tightness anymore.  You can do this.  I am blogging my journey....if you want to hear how it was after surgery, it's on there.  Good luck!

vmudrow

purelove5 - Yes I was able to have nipple/skin sparing surgery and would highly recommend it.  I was very small before, barely an A cup, so I decided to go bigger, I look like a B or small C, but my bra size is 32DD - that's because the implants are wide and you need a bra wide enough to fit, but really I look much smaller.  I didn't want to go too big because they would just be in the way playing tennis etc.  I didn't lose any range of motion and didn't have to do any stretching exercises. 

purelove5

Thank you Thank you!! This has helped sooo much! I have been freaking out(still am)! I know everyones body is different but I am hoping mine bounces back like you guys are saying! I don't know what I would do without my "active" life! If you could give me some more information on how they look or if you can feel the implant? A lot or any scarring? I never imagined having implants...it just freaks me out. I am thinking about going a little bit smaller than I am...probably a C. I am a size 0 waist & have been a DD...to a D now & it isn't fun. I think a C will be comfortable but not too drastic of a change from what I am now & won't look fake. *

vmudrow

My scars are kind of under the breast, so not too bad.  I am getting used to the implants, they are soft - so unlike the tissue expanders.  If you PM Timtam or whippetmom or lilah there is a picture forum (on a different site) where people have posted their pictures.  You would be able to get a better idea of how they might look.  There are some under nipple/skin sparing.  My are there, under the name Valerie. 

purelove5

I'm not sure what you are saying I need to do to get to the other site or forum? Do I look for those people? Sorry...very new to the forum thing..*

beacon800

Yes, you can send those members a private message and they can give you access to a forum where you can see photos of recon in process. You will learn a lot from that. Btw, I did BMX, no recon, and it was no problem. I know recon is more work, so you'll need to do your research. I am active and it does not hinder me at all. Very glad I did it and it's over. Big relief!

vmudrow

purelove - look for Exchanage City under topics and then look for Lilah or MBJ, click on their name - PM them (send them a private message), tell them your situation and they gain give you the passwords to the site. 

Anonymous

purelove - I wanted to pop in and let you know I'm sorry you have to be making such difficult desicions...I DO encourage you to look into the nipple sparing mastectomy (NSM).  If you are a candidate for this particular surgery, it is a wonderful option for such a crappy situation I underwent NSM in December, had tissue expanders (TE) and just got my implants the end of March.  My incisions are in the bottom crease of my breast and will be almost nonexistant when its all said and done, the natural droop of the breast will "hide" them pretty good :-)  It does take a bit to get used to the implants, I went from an A cup to a C, and am still trying to get used to them , but it's definitley not bad! 

I was 36 years old at the time of BMX surgery and bounced back pretty well.  I still went to the gym 4 days a week (after 5 weeks off)  with TE's, albeit I had to alter the weights/endurance a bit!  I am cleared for the gym on Monday (3 weeks post-exchange) to ride the bike.  Then at 6 weeks post-exchange I am cleared for all activity, as long as I listen to my body!  It is a long road to recovery, but it sounds like you are healthy & young, and would hopefully bounce back ok.  I suggest getting PT if your PS recommends to avoid other issues.  I do have a winged scapula from surgery and will be doing PT when I am cleared for arm movements.

I hope all goes well for you, these are hard choices re: what type of surgery you choose, but ask questions and know we are all here for you!

angelinac

Hi All, I am a 30 year old woman who tested pistive for BRCA1 recently, I had my first pelvic ultrasound yesterday and am going for an MRI in a couple of weeks as well. My Mom had and beat breast cancer and my maternal Aunt and Grandmother both died of breast cancer. All of them had breast cancer before menopause. The gentics center I went to said that I have a 68% chance of developing breast cancer and a 40% chance of developing ovarian cancer in the next 5-10 years. I am thinking in the next 5 years depending on how the MRI's and Ultrasounds go I may consider a masectomy and also removing my ovaries. I am recently separated from my husband and have one child. I am confortable with not having any more children unless a future spouse is insistent. I am curious what your percentages were before you considered a masectomy?

purelove5

Valerie-thank you! I sent Timtam a PM & just waiting for a reply. I will try the others as well.





Angelinac- As I am sure you saw...I am brac1. My Mom has survived BC 3 times. I have lost many family members to it. My doctor said that I am at 86% chance for BC & 40% OC. I had my 1st ovarian ultrasound May last year. They recommend I get my ovaries out by the time I am 35. But for now just do yearly ultrasounds(especially since im so young & want kids). My dr. Said I will need breast MRI's every year. I had my first 6 months ago that showed a benign cysts so I go back next month for another one & guess i will go from there as to what I should do. They have told me that you take 11 years from when your Mom has BC & that age is when you begin to be at higher risk. My Mom was 37 so my dr. said I should have my mastectomy before I am 26. I really just feel like a ticking time bomb. I hope this helps.

angelinac

Wow this helps so much. We have some in common so far. I haven't heard about the 11 year thing very interesting since that was last year for me.

purelove5

My Mom's oncologist is the one that told us about the 11 year thing & said I should really get tested & start being proactive because of our family history. He has pretty much saved my Mom's life a few times from this monster. My sister has yet to follow through with any of this & is 31!!!!! She has had a few ovary issues & her dr. Is telling her she should get hers out. My Mom's cousin got BC & passed from it when she was 31. My Aunt on my Dad's side had it twice & lost her life to it. Ovarian cancer is in our family too. The list is so long.....I run out of room on the family history section I have to fill out at the dr. Office. If you go to the bracnow.com site they do have a chart with the risk rate for BC & OC....the site is from myriad.com which is the company that does the(or did mine) gene testing. *

SarahsMom

Hi purelove, you sound like an amazing young lady, I love your zest for life!

I think having this surgery will just take your mind off  it  and allow you to live a full, long life.  Any discomfort or minor lifestyle changes you may have to make are a small trade off, in my mind.  I am high risk (not nearly as high as you, bless your heart!) but after almost 6 years of diagnostics, surgery, being in the 6 month diagnostic check club, a lot of my recent life has been spent on issues related to my breast.  That includes time spent thinking about it, worrying about checkups, feeling every twinge, pull and pain in there and having that feeling hit me that maybe something is "cooking."  I would say that now, I can push it out of m mind about 90% of the time, but that 10% is kind of a dark place. 

Anyhow, I applaud your efforts to be proactive and take control of your body and your life. Best of luck!  Aren't the ladies out here great? I see you're getting some awesome advice from the warriors!  :-)

Mamacma

Hi purelove~this is the first time I have been on since I had a BMX on 3/30. i had TE's put in immediately along with an Alloderm sling. I was a size C but I actually would like to be B because I do like to do tings like jog/run, go to the gym, hike, bike ride, and I think being smaller for me would be easier. At the initial surgery they were able to fill me halfway, and I will need probably only 3 fills before I switch to silicone implants. I am 42, active mom of three and I have to say I feel like this whole experience has been much better than I thought it would be. I am already able to go out for long walks, I do the physical therapy exercises, and I am getting around great. I did have the skin-sparing, but not nipple sparing because I had DCIS in my right breast and it was close enough to the nipple that I did not want to risk any recurrence. My surgeon did not recommend it either. I too have family history, and am BRCA1+. I do have scars across both breasts, they cannot be seen even when I wear low cut tops. It was really hard the day they took off the dressings, I sobbed for most of that evening, but each day gets so much better....it really does. It is so worth being around for a long life. Scars will fade. HANG IN THERE, BIG HUGS, YOU ARE STRONG and have so much in life to be hopeful for. This journey of figuring everything out is scary, but this website is a great resource too. I hope this helps... Hugs, mamacma

candiR

purelove-

I too am BRCA 1+ with a strong family history of breast cancer.  I had a prophylactic bilateral mastectomy with implants at the age of 21.  I am 22 now and am totally back to normal.  I had my exchange surgery in January.  I am very active, excercise, and live my life the way I did before the surgery.  You can and WILL be normal again.  The surgery was scary and painful, but you will get through it.  I can tell you that the peace of mind I have now was worth all the pain.  Plus, i LOVE my impants..it's not weird at all..I was a full C before the surgery and I upgraded a little to a small D

I do not regret my decision for a second, and now I can look back at last year as a positive experience..good luck with your decision, and please PM me if you have any questions...I am not shy so do not be afraid to ask ANYTHING...

-Candice

purelove5

Thank you all ladies! This has helped me so much! I have been so stressed, scared, & lonely this week dealing with the doctors office & insurance company trying to get my MRI scheduled to find out about my benign cyst. It is sooo hard when you are young. People(dr. office & insurance) I talk to always say i'm too young for this or why am I getting an MRI? I just got my insurance to approve coverage for my first MRI I had 6 months ago & round 2 is not looking any easier. I keep asking myself all these "what if's" & I know that is not good & I can't worry myself like that. I think/hope I will find some relief after this MRI. Wish I could blink & it all be over with. I feel so bad too cause I am not sitting here with breast cancer. I am sitting here with a great opportunity to save myself from it & its all so emotionally draining.

 Candice- I am so glad to hear from you. This is so hard being so young. I admire you & hope I am just as strong. I am sooo scared & don't want this surgery at all. I am terrified of doctors & surgery. *

 

candiR

I am glad that I can give you advice and maybe some strength to make the decision.  I'm not going to lie, last year was one of the hardest years of my life, but you can do it.  I've been through it all, MRIs, ultrasounds, biopsies, tests, doctors, surgery...but I am here now on the other side, and it has all been worth it..

-Candice

angelinac

purelove5, Yes that company did my testing too but a quick q. I had a mouthwash testing, I hear others had mouth swab or blood testing. What kind did you have with Myriad? 

purelove5

Angelinac,

 I had the blood test. *

beacon800

purelove5, I am sure you are doing the right thing with the BMX and later ovary surgery.  There is a presentation given by Allison Kurian who is in genetic oncology at Stanford.  It has some good slides on BRCA+ people.  It is on breast cancer connections website.  Hopefully this link will work: 

http://www.bcconnections.org/images/bcc/flyers/genetics%20and%20breast%20cancer%20presentation_allison%20kurian_april%2019%202011_bcc.pdf

There is a slide there that fascinated me, where it shows the survival probabilities for different treatment modalities for BRCA+ people.  Doing what you are doing turns out to be the most effective thing.  Check it out, it was interesting, at least to me.

angelinac

purelove5, Wow. I wonder if this makes a difference at all? Have you ever heard of the mouthwash genetic testing I had done? Thanks for responding, Angelina

Towny

pure love!!!

I would do it with no looking back.. If I had known than what I know now I would of had my breasts removed before the cancer!!! You will heal You are young and healthy why wait for the cancer to come and you will no longer be healthy!!! Go girl.. be brave .. I know women who have done this and they never looked back!!! Many different ages too!!!

You will live a life with less worry too.... Going for tests and worrying all the time if it coming is no life!!! Good luck and God Bless you!!! Everyone please check out areyoudense.org!!! D.E.N.S.E. NY we are trying to get laws passed about telling women about the density of their breasts!! this is very important for young women as well as everyone else!!!

purelove5

Hey all,

This past month I had my MRI for the cyst they found in my previous MRI 6 months ago. The doctor said there was no change in it & we discussed my next plan of action...surgery. I am going to start the insurance stuff very soon....as it has been very difficult dealing with them. My plan is to have the surgery after summer, probably closer to October. It has still been difficult accepting this all but after hearing from you guys & asking my doctor a lot more questions about life after the surgery. He felt very confident that I will bounce right back. Thank you all for your words it has truly helped me tremendously!!

Angelina- I haven't heard of the mouth wash test. I am not sure if it would make a differences or not. I would maybe do some research on it. One way could be better than the other but to me I would guess genes are genes.

*

vmudrow

purelove5 - are you going to have the cyst removed or masectomy?

purelove5

The doctor said I don't need to have it removed. I am going to have the masectomy around October.

*

vmudrow

I think you will do great with the surgery.  It wasn't that bad for me - 1 day in hospital, 3 days of pain pills then just tylenol.  Keep us updataed!!