Chat Now!   Member Gallery    Member Articles    Games   Member Groups   Member Blogs   Health News    Bored?

Author Topic: considering prophylactic masectomy for fear of breast cancer--advice?  (Read 382 times)

0 Members and 1 Guest are viewing this topic.

Offline Jenin

  • Jr. Member
  • **
  • Posts: 71
  • Country: us
  • Rec's: 1
  • Gender: Female
  • Mood: Scared
    Scared
  • Personal text
    • Poke This Member
It's been a while since I posted as I have been doing better with the HA and generalized symptoms.  However, I could use some advice.  Here is the background.  I am a 30 year old woman, and BRCA 2 positive (for those unfamiliar, this means my risk of breast cancer throughout my lifetime is approx. 60%).  Oddly, I do not have a strong family history of breast cancer (both mother's and father's sisters, as well as maternal great-grandmother had BC, no one under 50--although both aunts were around 50 when diagnosed).  While my doctors agree that there may be other factors we don't know  of that influence penetrance of the gene, they said I could not jump to that conclusion about my family esp. because there are not that many women in it, which might account for the low number of women in my family with breast cancer.  (the gene comes from my mom's side so my dad's sister's cancer was most like sporadic [non-genetic] BC). 

Now, I am terrified, absolutely terrified, of breast cancer.  I have read a lot about it and am aware that a lot of common myths aren't true--for instance, all we have to do is catch it early and you're fine; mammograms save lives, etc.  It's now known that many forms of the disease are simply very aggressive from the get-go and are more or less destined to kill, regardless of the point at which you catch them.  I have a mammogram and MRI every six months because of my high risk factor.  When I am due for one of those, I am anxious for weeks before and usually in full-blown panic for 24 hours prior. 

My fear and anxiety is so great that I am considering a prophylactic mastectomy so I basically don't have to worry anymore.  However, I don't know if this is overreacting/reasonable.  I do plan to have children and of course would like to breast feed, but on the other hand am not at that point in my life now, and am not sure if I am willing to wait just for that.  I also do care about my appearance--of course I would have reconstruction but I'm also aware it might not be the same and also is sort of traumatizing to have your body parts removed.  I am sure that would be psychologically difficult for me. I would like some advice from others about whether what I am considering is reasonable, or not.  Thank you so much for any help.
Bookmark and Share
Jenin

Offline ShawnW

  • Hero Member
  • *****
  • Posts: 676
  • Country: 00
  • Rec's: 29
  • Gender: Male
  • Personal text
    • Poke This Member
It's hard for me to say as a man...but if docs told me that I had a 60% of getting cancer...I would take a hard look at getting the mastectomy.
Bookmark and Share
My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline bpadilla49

  • Hero Member
  • *****
  • Posts: 567
  • Rec's: 5
  • Gender: Female
  • Personal text
    • Poke This Member
I would do it. I don't have a strong family history of ANY type of cancer, but I've often worried about breast cancer. If it can save you worry and stress, why not do it? It just might save your life - in more ways then one! It could possibly save you from breast cancer and a heart attack from worrying! Go for it!

I'm a doula, and as far as breastfeeding goes - I'm supposed to tell you it's the most rewarding experience of your life, and you're going to absolutely LOVE it.....but I'll be honest with you - I nursed my son for 1 month and my daughter for 3 months. It was alright. There was added stress and pressure in my opinion - the fact that I was the only one able to feed them meant I was always getting up in the middle of the night. Also, when I switched from breastmilk to formula, my children slept longer (formula has more fat, so it stays in the stomach longer, making them feel fuller longer) so I got more sleep, my husband and others were able to bond with them through feeding, ect.

It's a rough decision, but think of it this way - when you DO have children, nobody will be able to make you feel guilty for NOT nursing and giving your children formula! (believe me, when you become a mom, this WILL be an issue should you decide to breastfeed and then stop.)
Bookmark and Share

Offline soaringfalcon

  • Hero Member
  • *****
  • Posts: 595
  • Rec's: 12
  • Gender: Female
  • Personal text
    • Poke This Member
I've always said if I was positive for that marker, I would have the surgery.  There are still many, many way to be close to your child without breastfeeding.

The only thing I would urge is talk through all of this with a therapist so you have clarity and also to help you deal with your anxiety.

Best of luck to you, whatever you decided and continued good health.
Bookmark and Share

Offline kcg13

  • Hero Member
  • *****
  • Posts: 654
  • Country: us
  • Rec's: 7
  • Gender: Female
  • Mood: Thoughtful
    Thoughtful
  • My mind ... both a blessing AND a curse ...
    • Poke This Member
Jenin - you said you are positive for the BRCA2 gene - have you spoken to a genetic counselor?  Your ob/gyn?  A prophylactic masectomy will not guarantee that you will not develop cancer from that gene.  If you have spoken to a genetic counselor, what did he/she say?  And what made you decide to be tested for the gene? 
Bookmark and Share
Our thoughts dictate our emotions .... in other words, how you think is what you will feel.

Offline etethorpe

  • Full Member
  • ***
  • Posts: 167
  • Rec's: 4
  • Gender: Female
  • Personal text
    • Poke This Member
Hi Jenin - I am sorry to hear you are facing one of the most difficult decisions of your life.  Thoughts of this are probably consuming you 24 hours a day.  It certainly would not be out of the norm to have a mastectomy, it seems a good number of women chose to do this.  I know I would and while doctors say it's up to you I think they generally give a push towards the surgery.  Not to be crude or anything like that but having a mastectomy, while very traumatizing and a life changing event, isn't the end of your life.  Sometimes it is a medical necessity. Your are not at all overreacting or being unreasonable to consider this, not at all!!

Have you checked out breastcancer.org?  One of the forums there is specifically for people such as yourself, those at a high risk of breast cancer but not diagnosed with it.  There you will be able to talk this over with others, many around your age, who have the exact same questions and concerns as you do.  And there are plenty of people there who have been through this and have had the surgery that can help you.  You also need to consider the possibility of having your ovaries removed as your chances of oc are increased, but you probably already know this. And please talk to a doctor/oncologist who specializes in breast cancer to help steer your in the right direction.

Bookmark and Share

Offline SheWhoShallRemainNameless

  • Newbie
  • *
  • Posts: 29
  • Rec's: 0
  • Gender: Female
  • Personal text
    • Poke This Member
     I'm maybe not the best person to ask, as I'm not particularly attached to my breasts (emotionally. physically, they're pretty attached to me). However, I've also always said that if my odds were that high I'd do it. I think it's a perfectly reasonable thing to do. This is one of those things that's not really anxiety, it's a legitimate fear.
      These days, reconstructive surgery (if you went that route) is pretty much indistinguishable from natural. I've also seen some really beautiful tattoos done on mastectomy patients. I agree with the other people who suggest a therapist.
In my humble opinion, I'd say getting the surgery would probably make you anxious than getting a bunch of tests every six months. But your mileage may vary.
Bookmark and Share

Offline Sunlover

  • Hero Member
  • *****
  • Posts: 1441
  • Country: us
  • Rec's: 18
  • Gender: Female
    • Poke This Member
Well...  I wouldn't race into it.   If you want to breastfeed children I'd wait until all the children you had were weened.  After that I would then think about it.  It's not an unreasonable thing for what you want to do. 
(Didn't Angelina Jolie have a mastectomy after being tested?  She had an 87% chance or something like that, and I recall thinking, "I'd have done it too!" - she's going to be 40 I think)
Bookmark and Share

Offline Jenin

  • Jr. Member
  • **
  • Posts: 71
  • Country: us
  • Rec's: 1
  • Gender: Female
  • Mood: Scared
    Scared
  • Personal text
    • Poke This Member
Thanks all for the advice and thoughts.  It's truly helpful to hear various opinions in helping me make a decision and everyone is so kind and helpful.  KCG13, I did speak to a genetic counselor when I got tested.  I decided to get tested because my aunt and mother both tested positive for the mutation -- my aunt had breast cancer some years back.   The genetic counselor said that for now they just recommend the screening, but I have read so much about how studies are showing that the general wisdom on mammograms is just false--so many of the breast cancers are aggressive from the start and no matter when you catch them are "destined to kill" (to quote an article from Peggy Orenstein last year).  I know a prophylactic mastectomy doesn't entirely eliminate the chance of BC, but in my case it would bring it down from about 60% (throughout my lifetime) to 1%--pretty substantial difference.

Bookmark and Share
Jenin

Tags:
 

Related Topics

  Subject / Started by Replies Last post
11 Replies
2032 Views
Last post October 24, 2007, 10:19:13 PM
by theunrealme
2 Replies
644 Views
Last post November 26, 2011, 11:49:26 PM
by Itzomi
16 Replies
1473 Views
Last post January 30, 2012, 06:37:37 AM
by reece
2 Replies
282 Views
Last post October 17, 2012, 01:12:28 PM
by CrazyRNstudent
1 Replies
168 Views
Last post April 25, 2014, 11:41:27 AM
by mhmommy

anything