TRIPLE POSITIVE GROUP
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Oh Jennifer why did u google anything---At the beginning--)K now too_ I don't google we all know it doesn't have to be right. Wait I did google my Drs. to make sure I knew where they were trained and all were trained in good places--I didn't want a Dr. that bought his license in some craxy tiny island. and 5 yrs later I came here and during that time I was a clean slate of nothing in my brain. It worked for me and not much is in my brain now either it's still working. And whatever they find now will be better cuz of sll the chemo and stuff so please don't put a lot of worry in that and as far as the reg. opersstion goes there was hardly an inch of pain. I was totally surprised at that.
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Weight gain during chemo. I was similar to Tonlee although I had no issues with steroids… actually the steriods kept the fluid down. I would gain as much as 5lbs in two days up to 8lbs each treatment. Eventually the fluid retention didn't go away so my onc did put me on a small amount of diuretic after chemo. My taste changed didn't start to happen till tx 3 and it wasn't too bad. Just pepper and nuts tasted bitter. I pretty much kept my same eating habits but I know I was pretty lucky about that. I still wonder if sucking on ice also helped minimize the taste changes.
Jennt28 have you tried another pharmacy. I know I will only buy the Teva brand of Anastrozole. It's from Israel. The other brand is from India. I try to stay away from drugs manufactured in India. I get my script from Costco (actually cheaper than going through my insurance). They have to order the Teva brand because they don't stock in the store. Takes 1-2 business days.
Jennifer404 I did neo adjuvant. I will never know if all the chemo/herceptin treatment I did worked. That is the great thing about neo adjuvant. Don't second guess this. If you do dr. google you really need to understand how it works. Remember that web pages that get the most visits is one criteria that gets them to the top of the list. That means older pages that have been around longer have more visits. You would be surprised how much dated material flows to the top. Also there is a lot of mis-information out there. I know there are lots of alternative treatment websites out there that can sound very convincing… until of course you come across the coffee enema treatment (I'm not joking about that either). I've been using google since 2000. I believe google celebrated 16 years last month.
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Speaking of mis-information...I wasn't going to mention it, but it really bugs me.
On the 20th I was asked to speak to a group of minority women (mentioned this before).
I had a ten minute speech ready to go, with a little fun thrown in at the end (What NOT to say to someone with BC..lol)...but ended up not using it and going on the fly.
Why?
Because the speakers before me, primarily from the MEDICAL PROFESSION (also minorities), spewed so much disinformation I about choked to death.
For instance, one of the nurses got up and said, "Black women get the most aggressive type of breast cancer. Triple negative."
(There were 4 other BC survivors sitting at my table, all black, NONE of them triple negative...all under 40!)
The theme was basically...there is a sort of conspiracy to keep black women from getting mammos....or BRAC testing, and to make them hate their naturally curvy bodies, etc.
The entire event slanted toward these themes.
So when I got up there at the end, I introduced myself and said, "I'm a skinny white girl from the suburbs. So I can't really speak to the minority experience. However, I can speak to the female experience of getting a BC diagnosis..." And then I went on....
The most frightening part of this for me is...several places right now that offer mammos around here have sent out letters indicating that those with Obamacare will not be authorized diagnostic imaging until 50. (This was mentioned by one of the nurses as well.)
Anyway, not a single woman with BC at that activity was 50.
BC research and making decisions is hard enough. No wonder black women die in greater numbers with this disease than other groups. If that is the kind of misinformation they get.....wow.
When I left...I just felt horrible for not getting up there and correcting so much of what the "nurses" said. But I would then have become part of the conspiracy......
Very frustrating.
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Tonlee don't get me started. One an interview the other day I said the word isn't getting out. The in-house recruiter on the other end said something like what are you talking about there is an entire month dedicated to breast cancer, how can they not notice!
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Lago,
It was very disappointing. The nurse even told them to "eat brussel sprouts and spinach, it kills cancer."
I did what I could. I talked about dense breast tissue, and how it can hide BC from a mammo. That some states like Texas have passed laws which require doctors to tell women if they have dense breasts...so if they have any symptoms they can push for more than a mammo. And I threw in a quip about eating all the right things and still getting BC....
I also talked about the 98% statistic. Explained a tiny bit about the break down of stages. If black women are dying in greater rates (and I looked it up, they are) then they aren't finding it as a group in time. And partly because of that 98% stat. I mean, how serious can it be if 98% of women are fine 5 years later? IMO that stat has done far more damage than good. (And they can just eat a spinach salad and it will go away!)
On the up side..lol, they had great entertainment! Some really talented people.....loved that part
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You all are right about the surgery. I am a bit surprised about my sudden anxiety about the surgery. Fear of the unknown. My onc as usual has said nothing to make me feel reassured about the whole thing. That is what made me really start thinking about it. I have decided that after surgery I am gonna have to reevaluate our relationship. We might have to break up. Right now...I just need to trust my surgeons. And I do.
Just thought I would at least get an ultrasound or something to see if I was responding to chemo...but, I barely even got a breast exam. I kept asking, but,my onc said that as long as the tumor was softening it was working and that I was getting standard care:/ Hhmmmpph
On another note, a couple if survivors here in town and I were discussing how great it would be to have a local support group that really concentrates on living a healthy lifestyle after all of this...and we have decided to form one. You know, meet up for yoga one month, meditation the next, fun cooking classes the next...and so on. But, we need a name...any ideas from you creative ladies?0 -
Tonlee I have read a bit on why black women, although get breast cancer at slightly less rate than white women, seem to die at higher rates. There are several including having more aggressive disease and not getting quality care! Also some of those women are on certain heart medications that if they do eat leafy greens will weaken the medication they are taking.
Also note that in Conneticuit the law is if your breasts are of a certain density insurance must pay for an US too.
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Tonlee and Lago-
On the topic of misinformation. I was just going to say that since my diagnosis I have been begging all if my friends, coworkers, and clients to get mammos. Some ha e gone to their drs and have been told by ALL of them that it is unnecessary to do so before the age of 40. This is three different drs here..two are women. I was so angry. I told them to go back and lie and say it ran in there family if they had to. They must demand this.
There have been 4 acquaintances here that are under the age of 32 that have been diagnosed in the last 4 months. So frustrating.
On the other hand, those are the people that I know that are freaked out by my diagnosis and are being proactive about their health. Many others that I know...are not. The center across from my work gives free mammograms (for certain economic ranges...not hard to qualify) regardless of age. I tell everyone!!! No one goes..
No one goes...before I was diagnosed
I heard the stats...I heard the 98%
That is not why I did not go to get a mammogram though.
I really believed that it was a disease that I would not have to worry about til I was older. If drs recommend a mammogram at 40 then...well that should be the earliest I have to even think about it right?0 -
Sol- thank you. I don't understand either. I guess I shouldn't go around winking at anyone when the hair starts to go and I'm in my turban? Oh, but the stares I get now, I'm not thinking they are stares of invitation.
TonLee- I am a nurse, and didn't know that dense breast tissue increased my risk. So the information isn't being put out there. This frustrates me! Maybe I should have been more attentive and started researching after my first year of mammo, US, and MRI. I didn't, because I didn't take it serious. I thought, hey, I'm only 41, no worries, right? No family history at that time, I felt good.
Lago- regarding weight gain- Is this common? I lost 4-5 lbs with my first treatment. I was hoping to maintain. Or stay within a 10 lb range. And fluid retention came after last treatment sooner?0 -
jenn404 i wasn't given an u/s or mri or anything during neo adjuvant chemo. I have met many women who have tho. I was told the same thing...as long as they could feel the tumor responding. I asked for an u/s several times. I believe they are inaccurate in that i still had something show-up when i had my pre-surgical u/s for the wire localization. It was scar tissue because i had a complete response
ms tori i lost about 12lbs on chemo, which is a lot for me cause i started at 123lbs -5'2" - i was just so sick i couldn't eat. Have since gained it all back plus about 4 lbs!
to all the single ladies you are gorgeous inside and out, the right guy will look past all this crap and see you as the beautiful warrior that you are -
thanks for the well wishes everyone. I am meeting with the surgical team and the nurse today so they can assess what is going on with me. Do you think they filled me too much? i think i am at 160 or 180 cc's. I am going to ask them to remove some saline to see if that relieves some pressure. No fever, nurse just checked me. On a good note (the only one this week) I only have 1 drain left out of 4 so that was a relief....
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AHH so ticked cancer HAS NO AGE the mamao & docs & insurance companies & the government need to CHANGE THIS!!!
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Ms Tori most women do gain during chemo but a few lose. Be careful not to lose too much. I got the fluid retention after the 1st treatment right after I stopped the steroids. It just got worse as I continued.
Jennifer404 it is not standard nor recommended you get mammos before 40 unless there is a family history or you feel a lump/changes in your breast. Part of the reason is your breasts are so dense the mammos are hard to read. Other part is it is really less common to get breast cancer the younger you are. You should be getting yearly physical exams on your breasts at that age.
I find the statistic that freaks most women out is when I tell them that family history only accounts for 5% or may 10% of those diagnosed… that gets them to make their mammo appointment. I had no idea either it was so small.
BTW it sounds like I've given a new meaning to "Blind Date"
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Rozem- that makes me feel better. I am just ready to get this over...I hope you feel better. Glad you got those drains out. Let us know when you find out something. I meet with the plastic surgeon today for my pre op visit...hoping he will agree to less than 800cc that he thinks I need.
Ang-what would it take for us to change that? I mean really...no really...lol...what do we need to do? Write letters? Organize a march? Who do we call? What would be the correct age? 30 for a baseline?0 -
lago that was the most surprising stat to me too - i can't tell you how many people have said "so did you have a family history" to me after diagnosis. They want to try to understand "why" and this is a way of doing that. When i say no and give that 10% stat they are truly surprised (and running as quickly as possible to their mammo)
i have lectured everyone around me (all under 50) to ask for a mammo and u/s because of the breast density issue
here in canada the Canadian Cancer Society recommended screening guidelines are mammos starting at 50 - some doctors follow others start earlier -its all over the board. When i am past all this physical stuff my new goal is to educate canadian women to ignore current guidelines and ask to be screened (they cannot refuse you if you ask)
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Lago-hmmm, you make a good point. But, does it not seen that more and more younger women are being diagnosed? Or is it just that more and more women are being diagnosed in general? Wish there was another way of detection that was not invasive besides a mammogram that would work on dense breasts.
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When I was in Texas for reconstruction I read an article in the local paper about a couple non-profits hoping to start up and be established before Obamacare kicks in full force. They want to offer mammos to women between the age of 40-50 whose insurance will likely not cover due to new guidelines, or to those on Obamacare that can't get one because of the projected age change. (from 40 to 50)
It really wouldn't have made a difference in my case. The mammo never showed my tumor...and before all was said and done, I had like 4 Mammos.
The 98% stat was just one of the reasons I justified skipping a mammo at 40. I thought, well, pffft, if the "Cure" rate is that high, why expose myself to radiaiton every single year? Why not just go every 5? Plus I'm young and fit, with no family history...blah blah blah. I understand not everyone thinks that way.....but the fact that stat isn't even ACCURATE just flies all over me. Then there are studies out that say mammos are more harm than good....here is a slide show of a study I ran across....
I'm a little ashamed at my ignorance pre-BC. But if I'm being honest, I don't think a Mammo is even a good test for younger women with dense breasts.
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Mammo should have made some difference but my tissue was dense and to be honest I feel the radiologists at that place must have been blind… I did have a scare 4 years prior but no follow up. Just more mammos. My last mammo I came in with bloody nipple discharge so I would have had one in that case anyway.
I know the ACS is fighting to keep mammos starting at 40.
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People often ask how Obamacare will affect Mammos...the Wall St Journal did a great piece on it back in 09....and from what I've read in the Health Care Law, it is dead on.
No mammos under 50, and none over 75. (Of course these guidelines are made by bureaucrats, not docs....but bureaucrats are the ones who wrote the policy (I have a degree to be one of the bureaucrats! lol)....they basically say it takes 1,900 mammos in women 40-50 to catch a single incidence of BC. And that the price is too high for that one life.
http://online.wsj.com/article/SB10001424052748704204304574543721253688720.html
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My mom just turned 75, has dense breast tissue and a 1st degree relative (me) diagnosed. I wonder since she has a 1st degree relative, no considered high risk she will be able to get one.
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Lago,
I've read parts of Obamacare but went back and looked at it, and it seems to me (tho I am no expert) that most of the new guidelines set forth by this committee for mammos in 2009, has been changed back to the NCI standards. The way I read it, all women over 40 are covered...they can't even be charged a co-pay by their insurance company. And of course for those already on gov healthcare, it is free.
I must be missing something ...or maybe there is just confusion since the law passed originally with the limitations on who gets mammos, then was amended later.
I dunno.
I'm learning as I go!
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Emotionally speaking, we all tend to add some degree of hope rather than just logic when we look at numbers.
In that same way, that is why the dramatics of the presentation of the info from the Denver presentation are a little over the top.
But objectively, I have to agree with the Denver presentation Tonlee posted.
The bias i do see with it is that it fails to at least raise the question of the statistical likelihood that a percentage of breast cancers are also caused by the radiation received with mammograms -- especially cumulatively, with mammograms starting at younger ages. We already know that radiation is carcinogenic. I think it is a significant blind spot for professionals, who don't want to scare women away from having mammograms entirely since mammograms are less expensive than other types of detection, and the equipment and the training and use of them by medical providers is already in place.
Patients with breast cancer are often mystified as to why they have it when they practiced good diet and exercise, etc. Especially, those who were at low risk for recurrence and who have recurrence wonder.
I don't wonder.
A.A.
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Tonlee that's what I initially thought too but I wasn't sure because all I could find in a quick search was it that insurance wasn't required to cover 40-50… I'm also just still a bit wiped out right now so I probably missed it.
AA I think when they said young age it was teens and younger when a woman is still developing. Not women in their 30's or 40's
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Lago,
It gets sticky when a law has ammendments that aren't necessarily readily seen...lol.
We'll get it figured out!
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Kay,
Thanks, good info.
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There is no such thing as Obamacare. It's Called the Affordable Care Act and it does not in any way shape or form PREVENT any one from getting any kind of medical care. It provides MINIMUM standards of care in many vital areas including women's health care. There is no ONE insurance plan that everyone is required to adhere to. Each complying state will set up Exchanges where individuals can CHOOSE their own policies and pay for them themselves. And for all of us here...unlike now...we can never be denied health insurance because we have a pre existing condition.
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Just wanted to share. I was just in my local fabric store picking things up for Halloween costumes for the kids and while I was in line I could feel the lady behind me staring, I turned and smiled at her and she reached out and hugged me and told me that she had gone through chemo 9 years ago...and had two different types of cancer...in each breast...one more aggressive than the other...she had 15 lymph odes removed...3 were positive and she had a lumpectomy with unclear margins and then a bmx then rads and she is still going strong and cancer free today. I didnt ask any specifics that she did not offer. She was lovely. She hugged me about nine times. Everyone in the store was crying. So good to hear stories like that. I love to read stories like that on our threads:)
I would have NEVER assumed she had ever been through this.
Oh yes...she said her husband would never let her wear anything on her head while at home because she had such a lovely "noodle". Just made me laugh.0 -
Jennifer404 this spring I saw a woman in a restaurant. Her hair was coming back all black and grey just like mine did. After dinner I went up to her and said "I had your same hair cut last spring." I think she had ovarian cancer. She was so happy that I talked to her. I told her my hair came in exactly the same way, texture and color even though I never had black hair. I think it really helped her seeing me look so good and healthy.
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Jennifer404-- amazing some people just have that heart of gold thanks for sharing with us. I have had things at times go that way and others I think don't know what to say and just look at you and act like I was not even there.
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Ashla,
Obamacare cuts $384 billion from Medicare over the next 10 years (when a record # of baby boomers will be on it and coming onto it), according to the Congressional Budget Office (CBO), and uses these “savings” from Medicare to fund other entitlement expansions mandated by Obamacare.
The $384 billion is down from original estimates in 2010 of $443 million because the Obama administration has postponed the law’s mandated cuts to Medicare Advantage, and also because Congress has instituted “doc fixes” that have kept Medicare spending higher than what is specified in current law.
We're told Medicare benefits will not change – in theory. However, providers who get paid less from Medicare in the future may be less inclined to accept Medicare patients, thereby reducing access. The Independent Payment Advisory Board, created by Obamacare, will likely cut provider payments even more to keep the growth in Medicare spending under a benchmark. Again, reducing access to care.
Kind of hard to get your "minimums" met when you can't find a doc to take your insurance.
As wealthy a country as we may be, we do not have unlimited resources. Cutting $384 billion from Medicare will affect their services, albeit indirectly at first. There is no getting around it.Which is why, imo, these bureaucratic panels that look at studies and come up with recommendations to save money in gov. covered healthcare are so dangerous. Obamacare, establishes a commission of 15 bureaucrats, appointed by the president, who will determine how to limit Medicare spending.
While "some" people may benefit from Obamacare, others will be negatively impacted and their choice of services will be affected. (Medicare is case in point.)
Gov. isn't efficient, though I hate admitting that.
I have no confidence it will magically become so with health care.
But we can certainly agree to disagree.
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Jennifer, thank you for that post! That made my day! I want to be that woman someday, someone who can bring others comfort. Right now, I'm just needy.
And your surgery will be fine. I still am surprised at how little pain I'm in even though I itch like crazy from stitches!
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