33 and considering Bi lateral mastectomy??

Nicki6

Hello,

I was diagnosed with BC at beginning of July since then I have had two attempts to remove tumour and then the margins. Having been told on Friday that they cannot get clear margins advised to have mastectomy am now considering having both removed. There is no evidence of BC in my left side but the thought of going through all of this again in 10 years time doesnt bear thinking about.

My mum had BC 6 years ago at 52 and had mastectomy and wishes she had both removed as after reconstruction is very lopsided.

Does removing both mean no more risk??

 I am meeting with oncologist tommorow and then back to see surgeon on Friday to talk further.

 Would apprecaite if anyone has been through anything similar as only being 33 and having a 2 year old and 4 year daughters want to get it all sorted now!!

 Thanks

Nicki6

lexislove

Hi NIKI..

I was 30 diagnosed with a 2 year old so I understand completely where you are coming from. I chose to just have a single mastectomy myself...but many woman decide to remove both.

By removing the "healthy" breast you significantly reduce the chance of a breast cancer developing in it. Nothing is 100% as you know...surgeons can NOT remove all of the breast tissue. By having a prophylatic mastectomy...your chances of getting a breast cancer is like 2% or less. Have you had the gene test BRCA 1/2 done? If a woman is either one or the other...then doctors recommend a double mastectomy because their risk of developing breast cancer is really high...like 80% life time risk. Usually, with young woman they run these tests, I just got my results last week and I'm negative for both genes...there for my onc says removing both is not necessary. He said I have a 20-30% lifetime risk of developing BC in my healthy breast. or...... 70-80% I won't. ALSO....my BC was estrogen driven (ER+) so I am on anti estrogen pills for 5 years since treatment. Those pills as well as prevent a recurrence of my BC, reduce the chances of developing a NEW breast cancer by 50%....so thats my rational for saving my healthy breast. If I was TN,triple negative, I would remove both. There was a study that just came out that woman diagnosed TN had double the risk of developing breast cancer in their other breast...So you can see ...there are other factors to take into play. But...if you anxiety is so high about BC then the stress isn't worth it so removal of both is fine.

Take time to think about it. there is no rush, I know you want to be done with everything ect...

I'm having my implant exchange surgery in Novemeber and at that time...will be having a lift/reduction on my healthy breast to match my implant side.

Sorry you had to be here...but there is a lot of info and the ladies are wonderful. Good luck with everything!

Nicki6

Hi Lexixlove,

Thanks so much for your repsonse.

I ahve since seen the oncologist who has explained my pathology report further and also within the DCIS there was more cancer cells so I have now decided to have them both removed. Also found that I am HER2 positive too so herceptin for me as well as Tamoxifen. They have siad they will do the BRCA test.

I just cant get my head round that if it isnt showing up on mamograms or ultrasound nobody can tell if its in the other side.

Since I made my decision I feel so much more settled, I know whats happeneing and when so three weeks to go we are having a little family holiday the week before so I can spend some quality time with the kids then it will be all systems go with chemo starting 2/3 weeks after my op.

Because they are unsure if I will be having radiotherapy yet my reconstruction wont be done till next year so off to buy matsectomy bras tommorow.

 Thanks again for your respose it really does make a difference

 XX

yasminv1

Nicki6 - Good luck to you. I had a tough time deciding on whether or not to take my healthy breast. I finally decided on a bilat mx and have had no regrets. Take Care!

meganandrileysmom

Nicki6- 

Good luck.  I have 2 girls almost the same age as yours.  I am having a bilateral mx in September.

It took me 3 months to make the decision (after a lumpectomy and a re-excision).  I am nervous about the actual surgery and about how hard it will in the short term on my kids to not have me at 100%, but I am sure it is the right thing in the long run.  I am glad you were able to make a decision-- just reaching a decision is a relief isn't it?

Take care.  Wishing you the best.

Shannon 

Estepp

Nicki,, I was 40 and it totally FREAK ME OUT! I was so in love with my breasts..:(.. but I knew, that if I got cancer this young...well... you understand. My BS did too.

I had a mast and have implants now.. I look pretty good. If I had not have had to have rads.. I would look  GREAT!.. My dh thinks I look really really good. So does everyone else...

I made the choice to do bi-lat.. for my future... and I made the right choice for me.

I removed a 100% healthy breast at the time. But.. could I live with the fear it would get cancer in it too.. NO WAY.

You made the right choice for you!

Gods Love.. Laura

ChrisBern

Hi,

I'm a 32 years old male diagnosed with BC in November 2008. I have a 3 years old daughter and a 1 year old son. Since I'm BRCA 2, I had last May a nipple sparing bilateral mastectomy. I have had no regrets and I think my new chest looks good.

I wish you all the best

Christian

Nicki6

Thank you all so much for your comments, I know I have made the right decsision but as Sept 7th gets closer reality is starting to hit.

Thanks again and hope you are all well

Nicki XX

jillyG

I am 33 as well, mom of a 4 yr old and 6 yr old, and was diagnosed in Nov.  I had one breast removed and the healthy breast will have a mastectomy at the same time as the reconstruction.  This was partially because i don't want to worry down the road on the other side, and partically for cosmetic reasons, i want them to be the same. 

LizzyGirl15

You have a lot of great questions for your breast surgeon and plastic surgeon. I have some additional ones for you to consider since I am 28 and my mother was diagnoised with breast cancer 2008.

1. What type of cancer do you have? Are you a canidate for hormone therapies?

2. Has the cancer spread to the lymph nodes? If so, which ones?

3. Are you considering radiation therapy?

4. Are you comfortable with have implants used for reconstruction? Are you aware that there is a 50% chance of them failing but there are things your plastic surgeon can do to fix it?

5. Do you have enough stomach tissue or butt tissue for reconstruction?

6. Can you get your insurance to pay for the gene testing so you will have a better understanding of the stats for reocurrance and ovarian cancer?

7. Have you done research on these surgeries? Would you be okay with having one normal breast and one artifical breast or it it more important to have the same thing on both sides?

8. Most importantly, what does your gut instinct say what to do?

HeatherLL

I am 34, mother of two & just had my nipple sparing/skin sparing bilateral mastec. w/ reconstruction last month.  I have a 4yr old and a 7yr old.  I'm BRCA1+ with strong fam. history.  I am SO very glad that both were done at the same time.  Recovery is so hard and not to mention the cost!  I wish you the best of luck & hope it all goes well.

forgot to add, I'm a previvor - no cancer here  

39mom2babies

Hi, I just turned 40.  I had a bilat mast a week ago with implant expanders.   I have 5 month and 19 month old children.  I dont regret the decision at all.  I woke up with 150 cc in each expander and teenager boobs.  I will begin the fills next week and then on to radiation.  I did chemo first. I am very happy I did it this way.

rebetata

Heather I too will have skin sparing Bi Mx. later this month. DId you have to pay for the surgery? How long were you in the hospital? I am 31 years old.

Rebecca

Kellysportsfan

I'm considering a billateral. Cancer is tubular and Stage1/Grade 1 but have strong family history. My sister was diagnosed with Stave IV. Am I nuts to wanta billateral?

yasminv1

Kellysportsfan,

I don't believe you are nuts. This is a very personal decision and there is no right or wrong. You just have to do what you feel is right for you.

I struggled with my decision at first. I finally went with my gut and decided on a bilat sking sparing mastectomy with immediate reconstruction. I have no regrets at all.

I am sorry your family has been affected so much by Breast Cancer. Stay strong.

Good Luck to you.

Kellysportsfan

Yasminv1,

I'm glad you have peace with your decision. How was the reconstruction?  

seizetheday

All of this is SUCH an individual choice but inform yourself so you know what YOUR choice is.  This was my thought process.  I was 44, stage 1 and had the option of lumpectomy.  I was small chested so I felt the results would probably not be good and I did not want dents.  I live in Florida where swim suits are the norm.  I have 2 aunts (one not blood relative) who had unilateral mastectomies and regretted it.  They said the worry and emotions of getting the mammograms consume them at times.  I was in la la land about being of risk, esp. at 44 (aunt not considered risk in most guidelines).  I had mammogram at 40 and was getting ready to schedule my next when I found my lump.  I am NOT good at making appointments and knew I'd have a hard time keeping the every 6 month mammogram for the other side.  I also wanted to avoid the radiation since my cancer was on my left near my heart.  I did not want to go through this (mastectomy) ever again (get it on the other side) and after actually going through it I am glad I thought about that.  One aunt had reconstruction but has had to have revisions as she has aged because they don't match well.  I wanted a matching pair as I had nice breasts to start out and did not want to be reminded of this every time I looked in the mirror.  I had a great plastic surgeon (bi-lateral w/tissue expanders) and my results are fantastic.  No, this is not like a "boob job", not that perfect (you lose nipples and natural projection), but results can be VERY good.  I have absolutely NO regrets and am so happy I made the decision I did.  But again, this is an individual decision.

peasmommy

I was diagnosed in June at age 31.  No family history.  Underwent 8 rounds of chemo before surgery.  Now have tissue expander in waiting to hear if radiation is recommended.  I plan on having my healthy breast removed also.  I am 2 1/2 weeks post op (skin sparing, tissue expander) and feeling better each day.  I'm glad I didn't do both at the same time because post op pain and restricted use of left arm has been difficult.  Tissue expander hurts a bit.  Also a single mom of a five year old girl, still trying to work as much as possible so as to not use all of my sick leave up.  Going in tomorrow for first post op expansion.  I'm only a B cup but can see already that I'm a bit lopsided.  Will be happy to have both symetrical.  My hope is to complete this process all at once and not put off the other surgery until later.  I want to be able to see the light at the end of the tunnel.