MIDDLE-AGED WOMEN 40-60ish
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For NNBBFL, any anyone postmenopausal taking Tamoxifen:
Hot Off the Presses...Last week the Journal of the National Cancer Instutite reported findings from two big studies (ATAC and BIG) that indicated that CYP2D6 liver enzyme is not predictive as far as effectiveness in the postmanopausal women studied. Tamox. benefitted ALL metabolizers, extensive, intermediate, and poor.
I am not sure what premenopausal woman, still making a lot more estrogen, can draw from this.
Have to give credit to my scientific husband, who forwards me articles I would need a subscription for. It's his way of showing that he cares.
p.s. Sherryc, From what you wrote below, this article is for you too.
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Welcome to the newbies!
Today is one year from diagnosis for me....I'm grateful for another year of life!
I'm also praying for 15 year old Julia today...the daughter of my friend. She is having her surgery today for her peritoneal cancer. The doctors told her parents that she is only the 2nd documented case of this cancer in a teenager. Her surgery will last for at least 10 hours. They are trying to remove all of the cancer (ovary, intestine, liver, abdominal lining) and are washing her abdomen with chemo for two hours after the actual surgery to try to kill any remaining cells that were missed. We're praying for a miracle...that's what the doctors say she needs. The longest known survivor for this cancer is 10 years out and that's rare.
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I was not on this weekend and had to read several pages. Now I can't remember what I read.
Diana-do get a second or third opinion.
I went to the endocrinologist last week and he ran all my adrenal and hormone test. Six months ago I was pre menopausal and no where close to being in menopause this time I was post menopausal. Can't believe I went from one extreme to the other in 6 months. I told DH my birthdays have never bothered me but something about being post menopausal does. IDK, anyway I see my MO on Friday so will bring it up to him. I was off my tamox for 6 weeks while I had my BMX and just started back on it a week ago. I had so many SE's the first time around but so far this time my SE's have been pretty minimal. So I think I shouldn't rock the boat for awhile. My BMX was 6 weeks ago and I feel great, I don't even notice the TE's anymore.
Janis and I think Lisa can't believe what bad experience you had in the hospital. I had such a great experience. The hospital put a new call system in and it is through the phone system and all the nurses and aids carry cordless phones and at the beginning of the shift they write their name and numbers on the white board in the room. So every time I needed them I called they answered and even if they were with someone else I never knew it they were so attentive. Never once used the old call system.
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LC-Barb, I was wondering what was happening with her. It would be so incredible if this worked for her, and so encouraging for the others young ones that get this rare cancer.
Congrats on getting thru' your first year, which is the usually thehardest for a good number of us.
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Lory, I had neoadjuvant chemo as well. Although the main tumor responded well to the chemo, I did not have a 100% path response. At the time of surgery, there were still live cancer cells in 7 nodes, as well as in the breast.
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Momine- from things I have read I think the difference in how well it will respond is if it is ILC or IDC. We happen to have the smart ass cancer. All of them suck though.
I usually only drink decaf, but I had to make a pot of high test coffee to come out of my Xanax coma this morning. Now I know not to take it the night before work or take it right after supper.
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Hi all. I have a question out there for any BRCA+ moms out there. If there are any who have daughters that have been tested or thinking about getting tested, I could really use your imput. I really need to know what to expect from a genetic counsler. Thanks!
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iI am a little niaeve of all these abreviations, DX etc and BMX etccan anyone put me straight as to what those abbreviations mean. i had a lumpectomy after they found grade 3 Breast cancer, HER+ and my biggest fear is it RETURNING. I am om Tamox for 5 years, 4.5 of those to go with this treatment, mamogram this month, 6 months after radio therapy and my boob is quite sore, which is common after radaiation, am not looking forward to the mamagram as that machine pressed down on the boob and already sore when you touch it, but would appreciate knowing about DX and BMX if somebody could help me with that.
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Midnight -- check out the abbreviations for newbies forum. It will answer all your questions. DX stands for diagnosis and bmx is bilateral mastectomy.
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Woah, woah, woah! I know somebody asked me about the Abbreviations for Newbies, and if I could post a link to it, so I did! Right here, at the top of the page, underneath the opening post. Around here, all a Newbie has to do is ask for something and poof! there it is. That's just how accomodating I am, so all you Newbies BETTER USE THAT LINK!
(Just kidding about the yell.) 0 -
I have to say I miss seeing some of you in your avatars, now that many are guarding their privacy more. I do think it is a good thing tho', which you probably have guessed since I have been a pink doggy for years now.
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Congrats on one year and I will say my prayers for sweet Julia.
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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!
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Thankyou for that i have found those abbreviations. i knew some of them, but some i didn't, now i know and know where to look. (((( COOL ))))) thank you lovely ladies.
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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!
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Did I miss the MP reveal?
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barcso, Shrinkage is a wonderful word. Can't hear enough of that one. Yay for you!
You really have to look at the BRCA info. as a trade-off for your siblings. Yes, a little fear might now be their constant companion, however, what if one of their lives is saved becasue they now know they have to be ultra vigilant? If they want to each get tested, that is now up to them. I think if they have daughters, they might want to
I am always unclear on how the BRCA affects boys. Are they just as likely as a woman to get B/C then, or more than the average male, but less than a woman? Is the gene passed just as easily through fathers as it is though moms? Barsco, what do you know about this? Anybody?
My poor sons turned chipmunk when they had their wisdom teeth out. Both had a problem with impaction on their lower ones and cutting was involved. Yow.
p.s. Reesie, you did not miss it. I don't think Paula66 actually told us. There were only a few guesses.
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http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
This article talks about the BRAC gene in males.
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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.
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Dianarose I hope u get all this worjked out soon enough so u can find a piece of mind . I am always thinking of u .
NNYBBR i dont know if that is right ur post is a ways back , I actually live on Long island .. MY town eastport is on east end towards the Hamptons . I do love florida .. welcome sorry on such yucky terms
I had such a bad day yesterday , i am having troubles with pooping and pain meds .. so I am off the damm things today pain and all. I threw up all over last night .. anyway went to BS yesterday and my pathology results turned out good news . My left breaast and nodes clear . my right breast nodes clear but the breast was very active sge said with Lcis and ADH and that i made the right decision . now its time to heal and get my life and my self back .. if that is possible . The TE's are totally uncomfortable and painful , I hatew it . I almost feel like backing out of reconstruction all together .. looks arent everything ..
anyway if I missed stuff I am sorry ..Julie I hope all went well with u hugs .. I am sorry I dont know anything about Braca.. LUv and hugs ladies 0 -
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.
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Lisamarie- don't give up on the TE's just yet. I hate them too, but once the swelling gets better it is much more tolerable. You have come this far and you can do this too. I am 3 weeks out and 95% better as far as the TE's are concerned. After all this crap we deserve to look good.
The only meds I take are Xanax at night to help with the muscle spasms and sleep. Glad you path report was good. Hang in there. I have been eating oatmeal every morning to help with the whole poop thing.
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Lisamarie.. Tissue expander becomes much more "comfortable" I sometimes forget about it.. Getting it switched out on May 11.. wooohoooo
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Thanks, Dianarose, for the BRCA article. Not too much info. about men tho'. Here is a BRCA Risk Calculator link I just found, men and women
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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.0 -
Hang in there Lisamarie. The TE do get better. Once you are further into the healing process it will change. I was having the same issues as well. At the start I was so uncomfortable I wanted to scream. Ad I started to heal I noticed a huge difference.
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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!
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I have done a bit of searching on BRCA - found the following in relation to males.
Men with harmful BRCA1 mutations also have an increased risk of breast cancer and, possibly, of pancreatic cancer, testicular cancer, and early-onset prostate cancer. However, male breast cancer, pancreatic cancer, and prostate cancer appear to be more strongly associated with BRCA2 gene mutations (2-4).
I believe the melanoma risk is associated with BRCA 2 also.
Eli - the risk calculator gave me a 10% risk - wonder how accurate it is?
My sisters and I have all certainly been vigilant with mammos etc since mom's dx (15 yrs ago). Now with the BRCA 2 mut found, it looks like the brothers will need to be on top of things also. It is likely that the mutation came from my mom, but having dad's blood tested just to be sure as mom has passed away.
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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?
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Paula, I don't think you are being over the top. The risk calculator is a tool, not a definitive answer. Given the family history and your BRCA mutation status your daughter should be made aware of being at higher risk, and she should discuss this with her doctor, around the age of 18 to 20 yrs old. She and her doctor can look at all the specifics of her situation and determine what would be the best way and best time to start monitoring. It may be that mammos, MRIs or a combination of the 2, or some new test that comes along in the next few years may be the best way for her to be monitored. Or him, if your child/children are boys.
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