Hello everyone.  I'm new to this site.  I was just surfing the web trying to find some support.   My older sister is a survivor and she had the genetic testing done.  Turns out I am brca 2 positive.  4 out of 7 of us in my family have this gene plus some kind of  “unknown significant” mutation. 

I chose to have a hysterectomy and bilateral mastectomies.  I actually had them both done at the same time.  (It wasn't that bad and glad I did them both at once.)  I did the reconstruction as well.  The expander's weren't very fun.  I just had my implants put in July 20th and I'm still having a lot pain.  My plastic surgeon just basically said it was the general surgeon who must have either hit a nerve or there's a lot of scar tissue there. It's only been 7 weeks so he said give it some time.  Not sure who's at fault or if it's normal to still have so much pain.  Was wondering if anyone out there has or had the same experience.  My pectoral muscles constantly hurt as well as the sides under my arm pits.   I'm slowly trying to get back into exercising but it's so painful.  I can lie on my sides in bed for about 10-15 minutes then I have to go back to my back.  It hurts to even lie on the floor or go down on my hands and knees.  Any suggestions?  Is this “normal?”  Will I ever feel good ever again?  I get so depressed because I can't do the things I use to do.  I don't regret my decision but I'm struggling with so many emotions.  I need some support, my sisters have been great but they have their own problems.  I can't find any support groups here in North Dakota.  They are all for cancer survivor and I'm just a previvor. Any help would be greatly appreciated.

I'm also struggling with “Hot Flashes” as being brca 2 positive, not sure what to do for them.  My younger sister had a hysterectomy and she's positive as well.  She tried Effexor but had bad side effects from it and no relief.  I'm scared to try anything but need some relief.  Any suggestions?

You all must think I'm a basket case but I have no clue what to do or where to turn to at this point.  I'm just tired of all the pain and need some help.  Any advice would be great!

Dizz

Hi from another BRAC2 sister. First, I'm so glad you did this before you found any cancer. I wish I had that chance. Can you imaging having this and ALSO going through, chemo, radiation, complications etc…? Let me tell you, it was, and still is, no fun.

Your story sounds a lot like mine. You can read my story on my blog: http://www.caringbridge.org/visit/dianneduffy . I had the same problem with the surgeons and pain. I have found that even if surgeons are really good surgeons, most are not that great at aftercare. From my experience, I have found that you have to keep working on it no matter how much it hurts. Just a little at a time. I ended up working out with my father-in-law who had shoulder surgery around the same time. Keep at it.

As for the hot flashes…I find that they do decrease after awhile. I was put on Cymbalta initially, because it also helped with the pain, but it shouldn't be mixed with Tamoxifen (I was on Arimidex at first). If you are on Tamoxifen, the best help is Effexor. It may be that your sister was given too high a dose. I had a lot of problems on a high dose but found that a very low dose worked well enough.

The best thing about your situation is that you have sisters to lean on who are going through this too. Talk to them. I have no sisters or even aunts to talk to. In fact I'm the only girl in my family except for my mom, who doesn't understand. My gene came from my dad, an only child. Every woman on his side died from either breast or ovarian cancer. My odds are not that great, but there have been a lot of medical advances since my grandmother's day.

I will pray for you and hope that you get some relief soon. Best wishes.

Dianne Duffy 

I will reply in the context of your letter:

dizz said:

Hello everyone.  I'm new to this site. Welcome!  I was just surfing the web trying to find some support.   My older sister is a survivor and she had the genetic testing done.  Turns out I am brca 2 positive.  4 out of 7 of us in my family have this gene plus some kind of  “unknown significant” mutation. So sorry to hear.

I chose to have a hysterectomy and bilateral mastectomies.  I actually had them both done at the same time.  (It wasn't that bad and glad I did them both at once.)  I did the reconstruction as well. Brave girl & very wise decision. The expander's weren't very fun.  I just had my implants put in July 20th and I'm still having a lot pain.  My plastic surgeon just basically said it was the general surgeon who must have either hit a nerve or there's a lot of scar tissue there. It's only been 7 weeks so he said give it some time.  Not sure who's at fault or if it's normal to still have so much pain.  Was wondering if anyone out there has or had the same experience. I didn't have your type of surgery, however, recall having to call my surgeon & begging for more pain meds. He was not happy about me taking them & pretty much said to go with over the counter stuff which just didn't cut it for me. I can tell you that 3 1/2 yrs later, I still have “rain pain”, meaning every time it rains or just prior, I have pain. You are NOT alone. My pectoral muscles constantly hurt as well as the sides under my arm pits.   I'm slowly trying to get back into exercising but it's so painful.  I can lie on my sides in bed for about 10-15 minutes then I have to go back to my back.  It hurts to even lie on the floor or go down on my hands and knees.  Any suggestions?  Is this “normal?”  Will I ever feel good ever again? YES, you WILL feel GREAT again, you had MAJOR, SERIOUS SURGERY! Give yourself a break!  I get so depressed because I can't do the things I use to do.  I don't regret my decision but I'm struggling with so many emotions. Additionally, the emotional stuff is due to the hysterectomy. BOOM, you were thrown into that mentalpause whole hormonal spin. I need some support, my sisters have been great but they have their own problems.  I can't find any support groups here in North Dakota.  They are all for cancer survivor and I'm just a previvor. Any help would be greatly appreciated.

I'm also struggling with “Hot Flashes” as being brca 2 positive, not sure what to do for them.  My younger sister had a hysterectomy and she's positive as well.  She tried Effexor but had bad side effects from it and no relief.  I'm scared to try anything but need some relief.  Any suggestions? I find staying away from caffeinated things helps. A FAN works wonders……lol  Embrace it all with humor!

You all must think I'm a basket case but I have no clue what to do or where to turn to at this point.  I'm just tired of all the pain and need some help.  Any advice would be great! You are so not a basket case & not alone as well. As soon as you can get back into the groove, this will be a mere flashback in time for you. Hang in there!

Dizz

I keep going back to my favorite site for herbal info & look what I found!

http://nccam.nih.gov/health/chasteberry/

“Chasteberry may affect certain hormone levels. Women who are pregnant, or taking birth control pills or who have a hormone-sensitive condition (such as breast cancer) should not use chasteberry. “

Thank you everyone for the support and information.  It's so great to not feel so alone anymore.  I appreciate everyone's advice and words of encouragement.   I  just started to exercise again.  It's pretty painful but I'm very determined to get back into shape and not let this pain beat me.  I'm taking it slow but that's not like me.  I use to be so in shape and feel so good.  I know I can't do the things I use to and that's what's hard for me at this point.  I KNOW it takes time to heal but I just hope I heal…….

I've recently heard some things about my general surgeon.  I'm shocked to say the least as he has the best bedside manner of any doctor I've every met!!  I guess he's a great surgeon, but not so much with masectomies.  (Just my luck!)  I guess scar tissue is a big issue and thus that could be the pain I'm experiencing now.  Not sure if I should go back to him now or not????  Can they do anything about scar tissue?  Anybody know?  My sister thinks I should go back to him and find out what I can.  I might just have to give that a try.  This pain is horrible at times and I can't see living the rest of my life with it…….

On a different note….I was just contacted from my genetists nurse and they are having a breast seminar soon and my genetic counselor wants to present my family.  Not sure what's all involved in that yet or if I have the courage to go up in front of hundreds of people and tell my story.   It's still really emotional for me. (Maybe if I was a better speaker and not so shy…)  I know this a great opportunity though to inform the public about the brca 2 gene.  Guess I will have to see what all is involved in it first.

Again, thank you all for all your support.  It has helped me!!!

Dizz

Thank you to Dizz for sharing and to everyone else for responding!  It's nice to hear what to expect from women who have actually went through this.

I had my mastectomy on August 12th and I was concerned with the amount of pain I was still having too.  I was just starting to feel pretty good and then they started expanding…  I got sucked right back down to where I was before.

I am tired of pain too!  I want to go back to work, but can't yet.  Before my surgery I thought I was Wonder Woman and fully expected to go back in two weeks.  WOW was I wrong. 

Can I ask how old you are?   I'm 27 and they said that because I'm younger, I'd be having more pain than someone older than me. 

Good luck to you Dizz, and everyone else who is going through this with me!  Even though this surgery is turning out to be a bitch, I still feel VERY FORTUNATE to have this as an option!!!  My poor mom had breast cancer twice before she was 40 and until this year, I figured that would be my fate as well. 

Laura

Dizz - 

Me again. I have also found that general surgeons usually could care less if you have to deal with scar tissue. The real one to treat the scar tissue is the plastic surgeon. That's their business. The more you massage the area, the less scar tissue you will have. Just be kind to yourself. I wish I had known that when I first began.

As for the speaking engagement… Wow! What a privilege! We need to get the word out. I wish had an opportunity to speak about this. I would jump at it. Just write down what you want to say, then read it to the dog (he won't care if you flub up). You can do it!

Best wishes and keep at it,

Dianne Duffy