Calling all TNs

Hi TN ladies

bak94 and sandlake - I am BRCA 1+ and was told that an oopherectomy was all I needed. Is it recommended that BRCA 1&2 + have a hysterectomy too??

journeyu-I miss spoke! The guidelines my doctor cited was for an oopherectomy including fallopian tubes by the age 35 if brca 1 and by 45 if brca 2. In my particular case he recommended a full hysterectomy because I am on tamoxifen and because of my age. Also, there have been very few cases where ovarian cancer shows up after ovaries have been removed so my mo wants everything out because of my strong family history. I wish I remember which guidlines they were:( My mo had his conference on ovarian cancer yesterday. I guess people come from all over to go to it. I will try to find a link to the guidlines!

Hi bak, there are two ways to do this

1 (the best) you send me a friend request.  I add you to the private site and then you delete me as a friend in the main site. Plus you do not befriend anyone else.  Only post in the new group.

2  you can add as friend and then go in and remove from news feed

OK - I think I have done it... just went to your profile and unfriended you.     Went back into my profile and I think it worked - woo hoo. 

Ok, so I don't want to unfriend anyone, I like getting the photos and stuff on my wall, so I just can only talk about what I want everyone on facebook to know? I just still don't understand why what is posted in the private group shows up on the wall, there has to be a setting to change that! What is posted to the private group should be able to stay there, like when you post a message to a friend it doesn't show up on the wall, only if you post on the wall. Ughhh, so much for me to learn! and I thought I was computer savvy!

bak - thanks for clearing that up! I was in a panic thinking I had to schedule a hysterectomy.

Hey there all.  Just wanted to pop in and say hello.  I have had 2 occurances of BC one on each side.  BOth were TPN and was tested to find out I was BRCA 1 positive.  I had a bi-lat mx in Nov with a bi-lat Diep in April and in Oct I will be having my ovaries & tubes removed along with the 2nd phase of my DIEP surgery.  I asked the OB/GYN and he stated there is no need to have a hysterectomy as it is only the tissue in the ovaries and tubes that are at risk.  I"m at no greater risk for my uterus.

Ladies I'm also not computer savvy when it comes to things like this.  I don't really like having my private details on FB cause anyone can hack into things now.  Why can't we just PM our phone numbers etc and do it that way. Annie

On my way home! Surgery went well and chemo starts in few weeks!! In some pain but got meds!! Just wanted everyone to know now I'm going to sleep.

I do Zumba two nights a week for an hour and then an hour long toning class two nights a week (but I am not super women) just trying to keep my regular schedule.  I started these workout classes 2 years ago and I have made some really good friends, it is more fun than work, really it's my therapy mental and physical.  The onco said that the more exercise I do the more energy I will have and she is correct I feel so much better after a class.  The ironic thing is that I did drastically change my life 2 years ago (for the better) working out and eating right and then I got cancer:(  Doesn't make sense.  I am now half way done with chemo and plan on doing my classes as long as I can.  Unfortunaly, I think when I have my double mx I will have to slow down but only for a short time then back at it!!!!!

Brower1 - you put me to shame with your exercising. I'm more like below....

hoppy-my mo suggested I remove everything, even before he put me on tamoxifen. He said there are cases where the tubes and ovaries have been removed and somehow ovarian cancer still showed up. I initially just wanted ovaries and tubes out because of quicker recovery but all my docs convinced me otherwise. So many different opinions!! Since I seem to be a cancer making factory I just want them to take it all! Also, I am 45 and I don't know if that makes a difference from being younger or older than that:)

Journey-sorry to cause panic! Every case is different. I would go with what your doc says, but I would ask the benefits and drawbacks of both. I would also make sure my doc was very familiar with brca and ovarian cancer. Ask for the percentage of women who have had their tubes and ovaries out and then got ovarian cancer, my doc told me but I can't remember! I do know it was a very low percentage, but something I did not want to take a chance on.

Yes please Kathrynn.  I only know that you can have friends in the group and not in your main friend list.  Also you can go to friends and tick do not show in your news feed.

Any more help would be appreciated 

Our group is secret 

Hello bak94

I just wanted to say that I hope all goes well when you have your surgery. I hope after that all will go well and that you will be able to get on with your life relatively from hospital visits.

Wishing you all the best.

Sylvia

Bak, I am much less worried about any cancer stuff showing up on my page now that I am hopefully finished with active treatment. My big fear was that I would lose clients because they thought I would not be able to complete my work on time due to treatments. That's so funny - I'm pretty much an open book at work but it's my poor daughter who hears me rant and talk about hot flashes.  We work outside together a lot and it has been a very hot summer.