Profilatic mascetomy

Hi Ladies - I haven't been on this site for a little while so read with interests the posts in this thread. I too live in South Australia in a rural region.

My mother was diagnosed with BC at 36 and then again at 48. I was aged 12 and 24 respectively. This was 25 years ago and she is now nearly 73 and totally cancer free.  

What I saw her go through when I was 24 embedded in my psyche that "if I was ever faced with the decision, I would get rid of them both".

As Mum was young at first diagnosis, we three girls had to have mammograms from aged 30.

In March 2010 (I was 45) I had a mammogram which found DCIS in my LB. I immediately informed my specialist that I would like to "get rid of them both".  It was a decision that I did not waver from, had a lumpectomy immediately to "give me time to make my decision" and then had the bilateral mastectomy in July 2010 with immediate recon with expanders.  I did have complications with infections however in Feb 2011 had the exchange surgery and to this day the weight off my shoulders has been immense (figuratively and literally LOL).

I had genetic testing at the time and did NOT have a faulty gene - this did not change my attitude about my decision.  My Mum was then tested and she DOES have the BRCA 2 gene. SO my 2 sisters then were tested - 1 does have gene the other does not. The sister with the gene has had prophylactic mastectomy last year and the sister that does not have the gene has just lost 30kg so she is able to have the same surgery.  The entire experience has been life changing for us all.

Sorry this post is so long, but wanted to paint the picture both as a daughter of a mother with BC, as a survivor myself and also as a mother myself.  I did not want my daughter & son to experience the trauma that I saw my mother go through nor have them live each day with not knowing if it was going to come back or myself be on a constant roller coaster of wondering. For the last 24 years I had looked at them and asked "I wonder when you are going to get me".

I certainly will not say that I don't miss my boobs, but the relief in knowing that I have done what I can to eliminate my risk is overwhelming.

At the end of the day we can only make decisions which are right for us and it really is something that until you are in it, you cannot definitively know how you will feel but you make the decisions based the best information and what is right for you.

Good luck

Leanne :-)

Feel free to add me as a contact to chat privately or read my story also - I am also a BCNA Community Liaison.

HI Belinda, I saw your post and just wanted to say hi, and welcome.  Also to let you know that there is a Triple Negative group in the network if you want to connect in with others with a similar diagnosis.  You can find it here: http://www.bcna.org.au/group/16948. 

Hi Little Red,

The mastectomy recovery was the worst part of the whole process. I was only in hospital for 3 nights but my drains were in for 3 weeks which is not the norm. I had a local anasthesetic pump to the site as well as morphine on the push of a button but the morphine made me feel worse than the pain so I went off that. I could move my arms and had exercises to do every day from then physio, but you are not supposed to raise them over you shoulders until the drains are out. I had help to bath and wash my hair but I wasn't allowed to shower with the drains in. Once they were out I started to do the extra exercises and was pretty much back to normal in a couple of weeks. I had the second op, expanders replaced with implants, nipple reconstruction and my ovaries removed, about 8 months later (had to have chemo in between). This was nothing like the first op, I was in hospital for 3 nights again but the pain was controlled by panadol and recovery time was a lot quicker. I was back to normal after the drains were removed (2 weeks this time).

Most people don't have the drains in anywhere near as long as me and my surgeons said there was not really any explanation for it just that every person's body heals differently. So it is probably safe to say that your recovery time will be much quicker than mine.

I had the tattooing done about 2 months ago (about 3 months after 2nd op). This was relatively pain and hassle free.

My plastic surgeon is very happy with the  overall results and I must say that the results are much better than I had expected and well worth all the hassle. It is now about 1 year and 2 weeks since my bilateral mastectomy and first stage reconstruction and I feel very happy with my decision and have never looked back. 

I hope this has answered at least some of your questions and happy to answer anymore you may have. 

Chal

Hi Chal,

I am on a waiting list for the exact same thing, bilateral - expanders - implants - nipple reconstruction and tattoos..I was told this was the best thing to eliminate it coming back as much as possible but that doesnt make me feel that much better about the whole process.

Can you tell me what the mastectomy recovery was like? how long till you could move your arms? and was the pain manageable? Do you have any tips for recovery? they say because i will have expanders and drains in they will keep me in hospital at least till the drains come out..how long were you in for? Did you need help showering and stuff for a few day?

sorry lots of questions..

L

Hi Melanie - i have not actually posted in this thread but have similar stories to all the other ladies (have a look at my blog).

I had DCIS in 2010 at 45 but due to family history had always "said" that if I was in the position I would just "get rid of them".  My mum had bc at 36 then again at 48 and is still with us at 72!

I had spent the past 24 yrs (since Mum's last bc) looking at my boobs most days and saying "I wonder when you b*** will get me".  I was not a great lover of my boobs - saw them more as timebombs.

So when I was diagnosed that is the decision I made immediately - many thought I had made a very quick decision but as a very close friend said - you made that decision 24 years ago!!!

I had a lumpectomy initially to give me time to plan my next course of action. I could have had radiotherapy and then been monitored every 6 months for the rest of my life. That was in April 2010. I chose to have the bilateral mastectomy in July 2010 when my daughter could drive and husband was a little quieter on the farm.   Pathology on removed breasts found more DCIS in my left boob which had not shown up in any scans or tests. I had some complications post surgery but have never regretted my decision even once.

I do look at my boobs and miss the feeling, size, and not a great lover of the scars - BUT i know they are not going to do me any harm - now or ever!

I know that at 45 my children were older and I didn't have to think about breastfeeding.  I do know that when I did have the opportunity to breastfeed my children, fed one no problems and then the other just didn't gel. She was bottle fed and is now 18 - beautiful, intelligent and showing no sign of ill effects from bottle feeding :-)

I am not meaning to dimiss the breast feeding lightly, but at the end of the day it is your own peace of mind which is the most important now and only you can really make that decision.

Trust that your decision is the best one for you at the time you make it.

Look forward to following your journey.

Bye Leanne :-)