MIDDLE-AGED WOMEN 40-60ish

Thank you elimar and mommy4....Julia is out of surgery now. It lasted over 10 hours. The doctors think they got it all...now we just hope and pray that God gave her a miracle. She had the HIPEC treatment where they put heated chemo directly into the abdominal cavity. It has lengthened people's lives for several years. We're hoping and praying for more!

Hi all - just trying to catch up. I haven't been here for a couple of days and there is so much going on.

Welcome to any newbies that have joined us. You will find great support and friendship here.

LCBarb - I pray that Julia is recovering well and that a miracle has been granted.

My week so far - My scans from last week are still showing shrinkage of all tumors - YAY!

Tested positive for BRCA2 - a non-truncating variant. BOO! Not sure what it all means yet. I think what saddens me the most is that my siblings (5 sisters/2 brothers) are now also possibly affected by all of this crap on a more personal level. 

Spent yesterday at hospital with my son (18 yrs) as he was getting all of his wisdom teeth yanked. He did well and has no swelling.

Today might just turn into a pj day! 

O so sorry about the mp. Meece guessed it right away.  It was a picture of lips.  I know it was to easy, but darn photo bucket was miss behaving that morning and wouldn't let me do any uploading. 

Eli from my understanding on the BRCA gene in men, it does up their chances of male breast cancer. Not as high as a womans risk.  But in the whole picture of things, it rasises it abit more as far as male B/C goes. My Onc explained that just by me having the gene and our family history, my bros chances are increased from the average population at 2% up to 4%. It can be from the fathers side as well.  Since we dont know alot of my dads family history, but tons of my moms, we kinda think thats where it is coming from.  We don't tell my mom this because she has always had a hard time with my sissy having it then me having it.  She was just beside herself in the doctors office that day.  I do know that they have talked to me about having my daughter tested, but never really bring up my son.  So when we go to this genetic counsler, Im gonna ask them about him and why are they not putting him in this group.  It could be because of his age right now, so I will see.

Barb Im keeping Julia in my prayers. 

Barb I hope Julia is doing well.  Will continue to pray for her.

barcso so happy your tumors are shrinking that is always good news.

Lisa Marie the TE's will get better I just had my BMX on March 26th.  I had my first fill on April 23rd.  They were bothering me until about one week before my fill.  Then will the fill my right TE was sore for a week.  Now I don't even know they are there.

Lisamarie.. Tissue expander becomes much more "comfortable" I sometimes forget about it.. Getting it switched out on May 11.. wooohoooo

Thanks for posting the abbreviations elimar!

LCBARB:: I will be praying for Julie too! At the same time I was dealing with my DX, I found out a friend of mine has peritoneal cancer....she's in her 50's though.

She starts her chemo on May 4th so we've been corresponding by email.

I had my 2nd opinion from a new MO yesterday (fist MO said no chemo due to the small size. This MO says she takes the entire pathology into consideration, including the HER2+ STATUS and the multi FOCI with the possibility that my biopsy might have reduced the size of the measure of the tumor.

She's checking with the pathologist ..but sounds more inclined to offering herceptin alone as the minimum. I feel much more confident in the new MO.

Hey Paula - I had BRCA done because of my relatively young age at diagnosis (48) and my father's Ashkenazi Jew background. It came back negative, but the counselor was very focused on my daughter. I have no siblings, so no concern there. However, since I now have a history of BC, and my mother-in-law had BC, as well as her sister having BC AND ovarian CA, they were more concerned about what a positive BRCA would mean for my daughter. That said, she is 13 now, and they wouldn't even test her until age 18. With the negative BRCA, but with history on both sides, they likely will recommend that she start screening mammos at an earlier age.  

An interesting side note is that there is somewhat of a connection between melanoma and BRCA (1 or 2 - can't remember right now). My father died of melanoma and every one of his family members has had some form of skin cancer. So, that plus the Ashkenazi connection was another reason for me to be tested.  

Hope you're feeling better each day Lisamarie! 

barsco even though I have already had the testing done and am BRCA+ I, had BC in each breast, I went ahead and put my info in just to see what it says.  I came up with 21%.  I put in both my kids and it came back a 6%.  I am even more confused then I was before I spoke with her doctor.  Mind you Her background isn't a good one in the family area, so I am abit concered with the 6%.  Its not like I'm wanting this (BC) for my kids, I just want a better chance for both of them when it comes to early detection.  I know science has come along ways.  Its just that from one month they say this, then the next month someone else says no this is the way to do.  Example last year I heard that a gal who had an Aunt with BC needs to have a mammo done 10 years sooner then when the Aunt was diagnosed.  Well my sissy had it 2 times in her early 30's.  They say in their 20's a mammo is not a good tool.  What then would you do if it were your daughter.  Here is a breif family run down.  My granny- 50yrs , my auntie-70yrs, my sissy-32, 34yrs, me 43,44yrs  What do you girls think?  Am I being a bit over the top on this or should I just let it go for awhile? 

My primary doc called today and said she preferred to get me into Beth Israel. She was working on it this afternoon. She said she would do the chemo despite the onco score because of the nodes. I don't have a problem with that, but I want the right chemo. I will be glad to get another opinion and get a plan and move forward. I was really out of sorts today so I did some retail therapy at Marshalls.

Paula66- I want to have the BRCA testing too. I have 2 sisters and 4 kids and 5 granddaughters. Did your insurance pay for the test?

Dianarose & Lisamarie - have you tried the amazing Orange Essence Dried Plums - formerly called "prunes" - VERY tasty. They always help me with travel or pain-med-related constipation...

Dianarose - I'm with everyone who wants you to have a second opinion from a medical oncologist, hopefully one who has some experience with ILC and chemo. Is Beth Israel a good venue for that?

My doctors pushed me to have BRCA testing because I was 45 at diagnosis - it was covered by my insurance, and I came back negative. This wasn't surprising because it's kind of the wrong kind of cancer for BRCA, and I don't have the right gene pool or family history. I still think there may be some genetic link that they don't know about, due to my lack of known risk factors. Or possibly they're going to find out about a new risk factor, such as drinking a lot of Pepsi in one's 20's, or chewing Orbit peppermint gum for years, or excessive amounts of chocolate during pregnancy...

I sympathize with you gibby, I am a very active person. I walk on a regular basis , I work out on my bow flex weight machine regularly,kayak, hike and do aerobics. I have had some drawbacks because of my very unpredictable past year but I was getting back on track when I found out I had bc, I was diagnosed with IDC. I just found out that I will be having an expander put in at the same time of my mastectomy. But the surgery and following treatments will put me even farther behind. I miss being so active and cant wait to be back to normal again, feeling like myself. 

When I got my Genetic testing done, they said that if I was positive, my sisters should be tested.  He did say that my brother could be tested for 'his daughters' chances of carrying the gene.  I was negative for the 2 known genes, but was told to keep up with genetic breakthroughs as there is bc and ovarian cancer in my Dad's family. 

My mom was dx with bc about 16yrs ago. She tested negative for any mutations. I have now tested positive for a mutation found since then. So they are definitely finding new and different mutations as they continue to research. We are testing Dad just to be sure it didn't come from his side. There is also a possiblity of mom having some banked DNA that they might be able to test.

One thing to keep in mind if/when you or your children get tested is insurance descrimination. In the states GINA prohibits discrimination based on genetic information in relation to health insurance and employment, but the law does not cover life insurance, disability insurance, and long-term care insurance. Canada has yet to pass such a law.

LCBarb - Praying for Julia's continued recovery. Glad that they were able to get the pain under control and that she will be getting out of ICU. I hope that they were able to get rid of any stray cells with the HIPEC.

Hoping everyone has a great day!