natural girls
Comments
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Spring,
Thank you for this info on ovaries. And actually that makes so much sense and I am goin to study up on it also, as, i was not BRCA positive more as it being a possible variant. Being thru chemo, not even a month yet, my body and endocrine system feels so out of whack and the thought of doin anymore to my body is just too much. The balance is not there as i am certain hormones are so off and menopause is now here as well.
You also sound like you have a great doctor!!!!!I I am wondering if a endocronolgist is the way to go for the time being? Thank you again for the ovary info, i am goin to really consider not doin the surgery as it is something i just do not want to add to my system right now. Having a bilateral mx was enough and had some adrenal issues prior to my diagnosis and need to nuture and honor my body and with some TLC!!!
Healthy Thoughts,
Donna
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Donna--I second what Spring has said about the ovaries. Personally I think, and from what I've read, that we should keep all our 'parts' unless they are actually diseased. Or, if someone is BRCA positive, then it makes sense to remove the ovaries as the detection there is not good and the odds are high. I think drs are coming around but it's amazing how many still recommend complete hysterectomies since they assume women don't 'need' those parts any more if they are done with childbirth...there was a really interesting article on this in More magazine a while back.
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Donna, I agree with what Springtime and Allie said. I've also read that even after menopause, the ovaries continue to put out smaller amts. of hormones that may be protective against heart disease, stroke, and alzheimer's, and in some cases, removing them can cause sexual problems.
And if you are ER/PR- and BRCA -, what benefit would there be to removing them?
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Hi,
I love reading this thread I will start tamox this week but still believe I can impact by my diet. I eat a lot of homegrown vegetables fruits, beef but a lot of junk too which I am giving up and finding I am doing OK. I have a question on herb teas. I make my own in the summer using balsam, mint, honey or turbino sugar or lemon balm or lemon verbena. Does anyone know if any of these are not good for you as far as the BC goes? I make concentrates in ice cube trays then fill a glass with cubes add water and enjoy.
I am also a black tea lover but am drinking more green as I read it is better than the black does anyone know why?
Thanks
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Thanks again..Allie and Rose.. as Spring..says.. have to get educated and agree on all that has been said.I wonder if calling my Gene counselor should be called as she said that BRCA Gene 1 in my case was not necessarily a issue as it was labled as an insignificant variant. Why is it, DRS are so anxiious to have everything removed!!!They have no care to what havoc this will cause on our boides. I truly need to find a good holistic DR of sorts that can assist in the aftermath of all that has occured to my body and get some natural tests done etc?!!
Not sure Carollynn..i had been told the antioxidants in green tea was a good reason. The quality of the tea is impt too.. bags versus leaves? Also white tea was also recommended as well and has some impt qualities. More here will know more!!!
Great thread and appreciate the feedback!!!
Donna
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One more thought on ovaries.
I read that women who have their ovaries out at 45 or younger actually have increased mortality. This really made me stop and think. Increased mortality?? Those little ovaries are doing something... we might not understand it, but they have a function!!
However, I know it is scary to "keep parts" that could also be hit by cancer. And it is a personal decision. I had bilateral mastectomy to get rid of as much breast tissue as possible. I figure some women think the same about ovaries. (And if I was BRCA+, out they would come, for sure). It's just that the only function my breast tissue was doing was creating more estrogen!!! And I found the ovaries actually had a function. True about bones, heart, and cognitive.
I am still working, I felt I already have chemo brain, I don't need more "cognitive issues"!!!
Anyway. All personal decisions.
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Spring...totally makes sense!!!! I think there is a role for everything in our endocrine system especially. IF they said my BRCA Gene 1 had a insignificant variant found, I do not have a mutation.. and gene counsleor did concur that. I may have to further investigate that, i would assume if i had a mutation, it would state that period?! Thank you and appreciate your wisdom! Plus I am triple negative and there is no estrogen based thing goin for me?!!0
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Spring, have you asked your new doc her thoughts on you having your ovaries removal? It'd be interesting to get her insight into this, since she has no vested ($$) interest in you doing so.
Glad to hear that you like her!
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Haven't been able to post much because I have been so busy. It is good to see that everyone is still hangin out supporting natural living.
I just ran across this new bill in congress that will effect everything we eat. It is bad enough that Monsanto controls most of our food production with their monopoly of GMO seeds. Now our corner farm stand is in danger of extinction. This bill will effect everything from the Amish eggs many of us buy to the local farmers markets, to our supplements. It is an effort for more government control of our food supply, that will drive out the little farms and entrepeneurs in favor of big business and the FDA(which is mostly funded by big pharma). Please take the time to read through this and write your congressman/woman to tell them enough is enough:
http://aahf.nonprofitsoapbox.com/index.php?option=com_content&task=view&id=825&Itemid=
This bill could very well be the end of free choice to a more natural lifestyle.
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ugh.......just have to vent a little, I was reading on the IDC board, under the Negative Nodes, Mets, Numbers? thread and I wish someone with more knowledge that I could go onto that thread a set them straight a bit, they are scaring the living c..p out of each other!! Any volunteers!!!??? I know this happens, but............
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Hi, Lorraine ~ I just read that thread, but decided not to jump in. I honestly think there are so many factors that can come into play re. reoccurences, including how accurately you're dx'd from the get-go. I've heard it said that a good number (forget the percentage) of Stage I and II women are actually Stage 4 @ dx, but that microsopic mets already there are missed. I also believe from my own experience that where you're treated and the skill of your BS factors in. In my case, had it not been for a screwy pathology, I would have had just my lumpectomy that missed 3 other lesions in my breast, which were never seen on my first MRI. And I read just today a link someone posted on another thread to a research article out of the UK, suggesting that bc cells can hang out in our bodies and not become active bc until something triggers them years on down the road. So, who really knows?!?!?
I just thank God for this thread, and for the pro-active, non-pharmaceutical things we can do and share to hopefully put ourselves in a class of survivors not included in most of those stats! Deanna
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i thought i had to be the only one who didn't completely embrace dr. susan love, because she is touted to be "the expert" and has such a following. but even before my surgery and treatment i read her book--which, for an expert and so-called guiding light, i think it's criminal she hasn't updated it since 2005--and found it to be much less than helpful. extremely pessimistic and negative in so many ways. i regretted buying and reading it. you can get the same and even better info at most reputable sites online.
rgiuff: i'm triple negative and was encouraged by my med onc to have an oopherectomy if i test positive for BRCA. from what i understand, we are just as much at risk for ovarian cancer as our ER/PR+ sisters. here's a link that addresses it:
http://hormonenegative.blogspot.com/2009/01/surgery-for-women-with-brca-gene-can.html
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Morning fabulous ladies!! Thanks for the input! that thread just sort of threw me yesterday, especially when some were saying they were undertreated as Stage 1, and one gal was sorry she didn't do chemo even though she was stage 1, grade 1 etc, I guess I just have a different mind set. I have always thought Dr. Love was a little "off", not sure why, just one of those gut feelings. Well, I am off to have a pelvic ultra sound this morning, checking an existing ovarian cyst, see what the little bugger is up to! Hope its gone!!
L
ox
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I want to join the chorus of those with little love for the Dr. Love. I know she is doing this army of woman thing, but I want to know, why did she wait so long! I saw her on the talk circuit touting her new drive and I got kind of ticked. After all the money, she and others have been raising for years, for the elusive "race for the cure", she was FINALLY coming to the realization that maybe we should be spending more time looking at common denominators with patients, and figuring out the causes, and stressing "walk for prevention". I hate the whole "bc is just a crap shoot" and "we don't really know what causes bc" mentally. It just says to me, there is no hope. Well, there is hope and there is a CURE. It is called education! We need to spread the word that women need to be proactive BEFORE they get bc. That is why I am so excited about our new website. I know you are all going to love it because it is not just for us thrivers, it is for everyone.
One last comment on Dr. Love. She sure pushes a lot of products on her site and has sure made a lot of money. She now runs a whole bc industry. That alone leaves me the most suspect.
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Fairy, Vivre and other thrivers,
I went to that thread you mentioned. They seem to be operating under the logic that "more treatment leads to more survival. "
They are operating under generalities which don't exist and have worked themselves into a panic. The women on that thread don't even know the difference between recurrence and survival!
The only way to talk to these people is to sit them down individually and address each question they SHOULD BE ASKING. This takes about an hour. They need to write down the exchange as well as tape it. The information and real questions need a couple of weeks to sink in. The reason they need to write the dialogue down is TO LEARN REASONING from the available facts.
Women on our board have excellent reasoning skills and question the information they are given and go back and forth trying to make sense of the facts vs what we were told.
(BTW, Thanks, Dierdre, for getting that doc to admit what we were told is "theoretical"!)
Even if a person is a common-sense reasoner in the rest of her life, she tends to suspend asking questions when an onc speaks. Most of us ask more questions when we buy a refrigerator than when we make cancer decisions.
anom
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I am still new to this but agree that we make decisions in a hurry without enough information, part of the issue is so much information but once you start to read and digest I find it easier to seperate, the other is the rush once you are diagnosed to start treatment surgery etc. I said no to chemo as though my onc score was a 21 I am stage 1 and feel confident about rads and tamox. I will continue to learn and can always stop if I feel the treatment is not right for me. I am also walking more, I had a hip replacement in October just could not get any relief but am beginning to feel better and doing more in the garden and yard. Taking care of myself for the first time in a long time, too bad I had to be diagnosed with cancer to start. Hope others start before being diagnosed.
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I agree with you carollynn. There is so much information. It made my head swim at first. I had no idea how ignorant I was about managing my own health. This thread has helped me beyond words. I'm enjoying doing the research now. DH finds me quite boring with it all, but I feel empowered. I'm comfortable with treatments I did, procedures I refused and supliments I take. I am taking better care of my self and yes, it's sad I had to sacrifice so much to have my eyes opened.
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Ddlat, yes if you test + for BRCA, then you are right, higher risk of getting Ovarian Cancer. Are you having the test done?
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rguiff, yes, i'm having the test done, even though my damn insurance company doesn't pay for it and it's $3000 cash. grrrr
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ddlatt--that's interesting b/c my insurance co also wouldn't cover (which blows my mind as the test has got to be less expensive than ovarian cancer, right??). I opted not to have the test b/c the risk % was so low--somewhere I think between 3 and 5%. I was wondering though if that was the right decision....do you have a family history that made you want to take it or are you just being cautious?
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Looking at my BRCA gene test that was done prior to my BC surfgery.. I DO NOT have a mutation on either 1 or 2 gene.. BUT a Uncertain Significance with BRCA Gene 1 with no mutation. NOW how vague is this??
Just still need to educateon hormone therapy as i am triple negative and truly miss my bio identical hormone therapy and just do not feel balanced. IT is all such a journey still and not sure where to start and to locate the right DR. who is sensitive to a BC patient etc.
Thanks for such a great thread!
Donna
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ddlat: my insurance wasn't going to pay for oncotyping for me. The company said they would do their best to get me reimbursed. I had a couple of letters from the diagnostic company and then no bill. ..the insurance company picked it up. I never had to do a thing. Maybe you will be lucky with your BRCA test and get it covered.
Have a nice day all.
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allieM22, my mother and grandmother both had BC and died when it spread to the bone. i'm fortunate that i found my birth family (i'm adopted) and got this information.
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Ladies, you may want to know that *if* your insurance company does not pay at all for BRCA testing, there may be a university/research hospital in your area that has an agreement where they can do BRCA for "research purposes". That's how I got mine done.
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Wow, ddlatt--that's great you could get that info--so important to know family history, as we are all finding out.
Luck--that's interesting info--thanks.
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Preservatives in Meat Linked to Dementia and Cancer
According to a study published last week in the Journal of Alzheimer's Disease, sodium nitrite, which is a very common additive added to meat and fish to destroy toxins, reacts with proteins in the meat, damaging human DNA cells. The study links the preservatives to dementia diseases such as Alzheimer's and Parkinson's. The ingredient, which has also been linked to cancer, can be avoided by reading ingredient labels on meats like cold-cuts, hot dogs, and sausages. Sodium nitrite is a synthetic ingredient not allowed in organic foods.http://www.news.com.au/perthnow/story/0,21598,25739262-5017320,00.html
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Top 12 Food Additives to Remove From Your Diet
Thanks to MSN Health & Fitness contributor Jean Weiss, a list of the most medically questionable and harmful additives in everyday foods has been compiled:
1. Sodium nitrite
2. BHA & BHT
3. Propyl gallate
4. Monosodium glutamate
5. Trans fats
6. Aspartame
7. Acesulfame-K
8. Food colorings (Blue & , Red , Green , Yellow )
9. Olestra
10. Potassium bromate
11. White sugar
12. Sodium chloride0 -
Environmental Working Group Releases 2009 Sunscreen Consumer Guide
Does your sunscreen work? Surprisingly, 3 of 5 brand-name sunscreens either don't protect skin from sun damage or contain hazardous chemicals - or both. An Environmental Working Group investigation of 1,590 sunscreens rates the season's best and worst.0 -
simvog--great list. Yes, more and more reasons to eat "real" food, not anything processed. Think about how many people eat lunch meat of all kinds?
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Ok this is what I love about lists like these--the last item sodium chloride is just salt, so adding that as something to completely avoid is silly. Obviously you need to watch your salt intake but I feel it doesn't belong on a list like this.
While I was at it (looking up terms on the internet ) I looked up iodised salt (the salt in most salt shakers rather than unrefined sea salt)--this is what I found out; just thought I would pass it along! I always wondered what the difference was.
Iodised salt is table salt mixed with a minute amount of 1 of 4 Iodine containing salts of Hydriodic acid or Iodic acid: potassium iodate orpotassium iodide, and sodium iodate or sodium iodide. It is used to prevent and remedy iodine deficiency. Worldwide, iodine deficiency affects about two billion people and is the leading preventable cause of mental retardation.[1] It also causes thyroid gland problems, specifically endemic goiter. In many countries, iodine deficiency is a major public health problem that can be cheaply addressed by iodisation of salt.
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