I know that is the usual course but my dr. thinks that I should keep taking it as studies are still out on how long I would be cancer free after the 5 years....He wants to do everything possible to keep it from coming back indefinately...what did your dr. tell you? I don't want to take it at all as I feel bad enough already!....if you want to email me directly,please feel free....my e mail... josi 2591@sbcglobal.net......I found out they are doing research at city of hope hospital in california....seems that the ingredient in mushrooms do the same  as the aromatase inhibiters....just without the side effect! Of course it wouldn't work as well to block the estrogen from feeding the cancer..but if I can't take the drugs, then it would be better than nothing...I am hoping that there is a breakthrough soon! Are you taking the drugs yet? ...if you don't mind me asking.....I would lie to hear about your experience if you feel like sharing..if you don't, I understand though..

thank you! I read your story and it was really inspiring.Thank you for sharing! I am lucky that I didn't have to go through the chemo. Are you off the aromatase inhibiters now? I wish you the best of luck and hope you never have to go through any of this again! How did the reconstruction turn out? Did you get a tummy tuck out of it too? Did the aromatase inhibitors get easier to take with time? what about hot flashes? bone pain?

thank you! I read your story and it was really inspiring.Thank you for sharing! I am lucky that I didn't have to go through the chemo. Are you off the aromatase inhibiters now? I wish you the best of luck and hope you never have to go through any of this again! How did the reconstruction turn out? Did you get a tummy tuck out of it too? Did the aromatase inhibitors get easier to take with time? what about hot flashes? bone pain?

Dear Jody,

Sorry I haven't replied to you sooner.

First of all, I was disturbed by the first two responses I got. I was and am still trying to be nice here because the first one I guess is being answered by a person who is operating this site.  I have appreciated very much all I have read and learned here and her replies to me in the past.  I don't want to be 'blocked' from this site.  But this reply given to me is  far from satisfying ...

yes, she said she agrees with me, that more should be done..but then says this issue has been addressed before and refers me to a link.

I have gone there several time...But this link brings me to a person who 'wrote' this article on April 20,2007 and if this isn't 'out-dated' in my opinion..I don't know what is...

Whatever he placed in that article...he is speaking about 2002-2004 and then there is a place that refers to something a Tara Paker-Pope wrote that was printed in the Wall Street Journal 4/19 D3..I could not find what 'year' that was published..and she is far from  any authority...she  'writes' health columns taking bits and pieces from here and there. Sorry I am making this  such a 'long' story...

BUT THIS IS EXACTLY WHAT I AM EXPLODING ABOUT! (that is besides the second reply which I won't even touch because too many questions were left unanswered here and this person is giving an 'excuse' that the medical profession just loves to confirm...that if you are going to get Breast Cancer you will get it with or without taking HRT and etc etc. not at all a reply I will accept..but thank you anyways.) 

so in short:

1. in reply to the 'second' reply here. I am specifically referring to Estrogen Positive Receptive Breast Cancer.

Again, let me stress, I am not saying that 'everyone' that is 'fed' that 'poison' of HRT pills/ creams / patches gets  Estrogen Positive Receptive Cancer...what I am saying is, and let me try again to be very clear about it: That it is a crime that the medical profession is still prescribing this with giving women the 'same' parroted 'sales pitch' : "You should weigh the benefits of having a comfortable life now (with no or reduced sweating and not having sleepless nights) with the 'possible' risks of breast cancer and or strokes later."  (and if they 'really' want to sell this product..they throw in that there is a chance the woman will not have so many wrinkles..which is the clincher for the woman to race to the nearest pharmacy to take the entire prescription in one day!)

Again, I am saying, the doctors should 'feed' this medication to themself if they are female...to their wives if they are males...to their own moms...to their own sisters and to their own daughters...but it is a CRIME to place any woman with having to have these risks. ESTROGEN POSITIVE RECEPTIVE 'feeds' and 'thrives' upon ESTROGEN. This medication has 'estrogen'.

1. I sit here by the computer..googling and googling and googling..and all I am able to come up with are with 'thoughts'  or studies or whatever that were done in years past...all I can come up with is with one article saying that 'maybe' there is a connection..another article coming up with saying ...there is no proven connection...and the list goes on and on but all these articles that appear are not from 2009....and now I am so 'tired out' already from all the vast amount of material i have gone thru...that if i recall there is nothing i found even from the last half of 2008.

ok girls...I hope I haven't 'insulted' anyone...I am just so frustrated with this whole situation.

i am 'new' to all this. I was diagnosed with this in July..had the lumpectomy in Aug. ..then 'suggested' that I go for  this test Oncotype Dx test that gives the Oncologist a suggested adjuvant treatment course to follow according to 'which ' of the 3 levels the results from this test fall into

(a small sampling from the tissue that was removed is tested...which supposedly will possibly give statistically the recurrence rate.This is different from and is  'not' the Braca 1 or 2 gene test)

My luck, I got a score of 26..which is the 3rd level. That is the first number in that level. According to this test, the 'suggested' adjuvant treatment is 'chemo, then radiation, then the pills for 5 years.

Although my cancer was 1cm...although it had not gone into the lymph node...I could not take a chance of not following this test's 'suggestion' of taking chemo..first 'because'  my pathology report showed that my cancer was 'only' 30 percent 'positive' receptive..which meant that the radiation would take care of 'locally' where the mass was removed..the pills would 'attack' the 'positive' receptive cancer in my body...if there is any...but if there is 'also' any 'negative' ones..the pills will do nothing..

(which is another issue..i wonder how many women are told this information and or even now what percentage their receptors were positive and or negative)

ok enough...if you have gotten this far in the reading...maybe you can understand why i am so aggitated. Maybe I am just an impatient person. But I find it very frustrating that here it is 2009 and all I am hearing is the month of October is when people are 'walking' on behalf of Breast Cancer. But is anyone 'screaming out' that this slowness in research is not acceptable at all! That the 'answers' are not coming quick enough. Plus there doesn't seem to be any present day (2009) information about this HRT medication and its effects upon Breast Cancer. Why?

Bubby

bubby,        I completely agree with you! I am so frustrated and angry that the doctors lied to me and talked me into taking that stuff.She said the was zero risks! If the surgery and radiation wasn't enough , now I have to take the femara and that is too much! I don't want to get the cancer back though! We must do what we have to do to beat this. We have to take one day at a time and get through it. In the meantime we must still research and try to do all we can to get healthy. We also have to spread the word about these hormones! Also pray for a cure soon...for all cancers..thanks for your reply....jodi

dear Jodi,

I am not a doctor although if you talk to my husband he will tell you that his wife 'plays' doctor without a license....so what I am saying...please discuss with your oncologist and then make your own decision.

My understanding is that the pills we are prescribed after radiation is to 'search out' if there are any cells floating around in our bodies that are 'estrogen POSITIVE receptive...wth  the hopes that this medication will stop them or contain them or whatever (i have read so much..my head is exploding already and I don't recall exactly  all so I may be saying it not totally right..)

what I do remember and my understanding is..is that these pills along with arimidex (which is the 'only' pill...armimidex...that any of the women i have talked to have been prescribed ...I know nothing about the pill you are prescribed..maybe google it and then google arimidex and READ AND READ AND READ...maybe one wouldn't have the side effects you are having...also arimidex I believe is the one that has been the longest in distrubtion on the market which of course doesn't make it better or the best but something to consider)

Maybe just switching to Arimidex or another type would be ok or better for you to 'digest'. Also I recall that you mentioned that you were told you would have to take it for a life time. I am under the impression that after 5 years these medications are no longer prescribed. (although i am thinking...why not? it sounds reasonable to me that they should be taken for a life time...but that is just it...the medical field is throwing out 'directions' as if they 'know'...not making it clear to us that nothing is for sure and they are still in the 'experimental' stages...which is far from comforting..but at least they should make it clear to us)

To come to think of it, how can it be determined how long these pills should be administered when I believe that they have not been out more than 5 or a little more years. So another question... arises here...

Also, I suggest that you ask your oncologist to tell you ...have her /he write it down. What percentage from the tissue they removed was the receptors estrogen POSITIVE.

Then I would ask this oncologist that you want to be given the oncotype dx test to determine what your score is and what the suggested adjuvant  (after care) treatment should be...this is what this test will tell you. (but you have to keep in mind that it is 'only' a suggested ..and in any case, no matter what score /level/ group you fall into..all 3 groups 'suggest' to take radiation and the pills)

Although you have already had radiation..and are taking the pills...it would maybe be 'interesting' to know at least what percentage the estrogen receptors were in that mass that was removed. 

I am just thinking out loud...because the way I understand...only estrogen positive receptors are these pills any good for.

As Ms. Harnel said, no one is omnipotent...and I for sure know this and I do readily admit this...but many times I wonder if our medical profession realizes this for themselves...

Point is, whatever I have said above is all to be taken with a grain of salt...I am simply a lay person...who is thinking out loud.

This is all very confusing to me...and as you may have noted very frustrating. I hadn't realized that Breast Cancer research was at the 'stage' i am finding it out to be at...

So if you screams...wherever you are..that is 'me' screaming out of frustration over all this.

P.S. maybe people are just better off to accept and follow their physicians directions. at least, I think most people do just that anyways..it sure is much less stressful than to go to Mr. Google. Also, then, if it doesnt' go right...one can 'blame' someone else instead of themself. My husband always says I stay married so I have someone to 'blame'. He probably has a point there...lol

Hi  bubby,  I haven't started the femara yet. supposed to start on wed. .....they found a cancerous tumor in the biopsy ,in situ and invasive stage one.estrogen positive....when they did further surgery to get any remaining cancer cells around the biopsy and in nodes under arm, they found no other cancer...I had the oncho type dx test ( so I didn't have chemo) and my score was only 6. My doctor wants me to take the meds forever because he has no idea what my odds are when I stop taking it...if there is another stray cell somewhere it could start growing when I stop the meds......He is a very good onchologist but I don't think anything is for sure at this point. He is just trying to help me live my life as long as possible..of course, in the end it will have to be up to me...I will get the cat scan, bone scan, bone density, another mammagram on the other breast  and bloodwork again on nov. the 19th. to see how I stand at this point..I am hopeful that they won't find anything else.

dear Jodi,

Oh sorry..i thought you were saying that it was the 'femara' that was making you 'feel bd already'. So, i understand that you already had the radiation? is that correct? whatever...even if you had the radiation or didn't...why? do you feel so badly already? Excuse me for asking...not really asking for a reply to this question, but most probably it is coming from something else...another health problem...Please make sure you mention it to your oncologist which I assume you did. Whatever is making you feel badly already...maybe go back to that doctor and medication has to be readjusted or whatever...but i have not heard from the many women I spoke to any negative side effects from the radiation (except some get a but burnt..but cream takes care of this) or the pills. I mean 'outwardly' that they could feel...then and i have no idea what the radiation or the pills do to our insides that will show up later.

I am just curious as to why your oncologist 'selected' femara instead of arimidex. Please, can you ask him.  I am going to ask my oncologist why she selected Armidex...maybe one is less $ than the other? The Arimidex runs about $300 a month...thru my Rite Source and a little over at Costco. I can't recall now...maybe I am the one who said i wanted Arimidex before she said anything...and maybe only because that is what I heard from all my  people and specifically that a woman in post menapause would not be given tamoxfen... I don't recall now..but i will ask her. Meanwhile, I am curious to hear what 'your' oncologist will say as to why this was 'his' selected choice femara. also ask him to tell you what percentage of the receptors were positive  from the tissue they removed. Maybe re verify  with him what I understand; that the pills will only be for the 'positive' receptors...any 'negative receptors that are 'also' estrogen  cancerous cells....the pills will not do anything for. ok dear..good luck.

hi,    I am sorry but I don't think I answered you. I don't know why I already feel bad but I haven't felt good for a long time even before I knew about the breast cancer. I am on various medications for different things so I don't know what is causing what anymore. I have alot of anxiety so doesn't help. The dr.just picked femara as that is what he had samples of but he said it didn't matter as long as it was and aromatase inhibitor....they are all pretty much the same I guess..so we will see how what this one does to me and if I can't tolorate that then he will try something else. ......not tomoxicin as I am post menapause. My cancer as it turned out, was removed with the biopsy.there was no cancer in the surgery that followed. The margins were clear as well as the nodes. The problem was that the tumor was out of the duct so it was called invasive so there was no way to tell if any cancer cells got out into the lympth system.It was stage 1, estrogen receptive (positive)..estrogen negative just means that it was not estrogen receptive.  it is not another kind of cancer.

 there are other kinds of breast cancers but I have been negative for them.I have had many years of premarin.....but it was the estrodiol patch that caused my cancer to go from calcifications to stage 1 invasive cancer. My gyn. dr. said there was zero risks so I trusted her...the biggest mistake in my life!    anyway, too late to cry about spilled milk. I just have to deal with it....It is taking its toll on me. It seems like it has changed who I am. It is going to take a while for me to get back on track I think. hopefully, one of the aromatase inhibitors will work for me so if there was any cancer left, it won' t be able to feed on any estrogen.........I hope everyone the best of luck..this is surely the biggist challenge in our lives...who would of thought that this would happen..just hoping for a cure soon...hang in there and thanks for listening.......when I figure out how to paste them on this site, I would like to sheare my reborn babies that I make.They are collectors dolls but even up close you can't tell them from real without touching them....I am an artist and they really help my stress..I am hoping to make another soon.

Hello everyone.

I'd be very careful with the chemotherapy for breast cancer.My mom had breast cancer almost 5 years ago. A type of chemotherapy she had has given her Leukemia! So be sure to have your doctors inform you of ANY risks! My mom was NEVER told the risks!!

dear ms Hamel

Thank you so very much for your reply and the link. This link I could get to...and i found it very informative...(do you think i liked it because i m biased and it seemed for the most part they were confirming my suspicions.

Believe me, i do not  want to hold any position that comes near to being omnipotenet...in fact, upon hearing that I had breast cancer ...I had a 'talk' with G-d and said...My advice to YOU  is to allow me first to finish up with all the projects i have started...to be able to clean off all  the piles of papers that have accumulated...and for sure G-d YOU don't want me to come up there to begin to push YOU to do this and push YOU do to that...to turn the T.V off ...to dim the light in the bathroom...to shTut down the radio...and to make a 180 degree turn about to straighten out this country and this world. I really don't think G-d it will be pleasant for YOU  'if' YOU  take me , just yet." ( he is allowing me time on earth)

so that was discussion and G-d agreed...I am here on earth still...so all joking aside..i truly don't want to come across as  a person who believes they are omnipotent and I apologize if that is how I sound.

With all due respect...i did pick up within your words or someone's words that x amount of HRT pills/ patches/ creams are 'still' being sold with prescriptions of course. I am not any authority on how these numbers came about...or who is throwing them out...but it seems to me that he question should be asked..ARE THESE  NEW PRESCRIPTIONS OR RENEWED PRESECRIPTION? AND WHY? ARE THESE WOMEN 'STILL' TAKING THIS MEDICATION...IS IT BECAUSE their doctor didn't have the decency to 'explain' to them the risks...that have previously come to the fore front severa; uears bacl?

i have a quesion for you and i  do mean it nicely: How can you compare apples with apples  as you did with a person can have a car with saying that not everyone will be dying in a car accident ...just as a person with ESTROGNE POSITIVE RECEPTIVE  CANCER WILL NOT GET THIS PARTICULAR  BREAST CANCER BY TAKING HRT MEDICATION. With all due respects I think this is not an apples to apples comparison .

You even got me to concede...but i have been thinking this over.  I could say similarly...everyone who touches papers in an office will not get a paper cut (as I did yesterday)

Such examples can be thrown out left and right...I am not talking about  driving or even sitting in a car..I am not even speaking about picking up papers and ending up with a deep paper cut.

I AM SPEAKING ABOUT 'FOR EXAMPLE' A PERSON SMOKING POT DAY IN AND DAY OUT....taking it INTO HIS/HER BODY.

WHAT HAPPENS...TRUE MANY AREN'T AFFECTED AT ALL..BUT  TAKE IT JUST FOR THE MOMENTS (to have a comfortable / enjoyable life)...on the other hand, proven or not proven...it can and has turned people in the worst case scenerio into a vegetable...(our frieds) and  who knows what other effects/ DEFFECTS 'smoking pot' that some say can help a person medicinally

Let me try once more and then I am finished.

1 i am speaking about Breast Cancer that is called Estrogen Positive Receptive. I am also speaking about this case that is in the very early stages..in fact most probably didn't even enter the lymp node 1 and is very small...1 cm or less. I am speaking about a cancer that thrives and feeds upon ESTROGEN.

2 when I first was diagnosed..i was in shock...no one in my family has ever had this and etc etc..i have progress rapidly by hearing my doctors talk and reading material that they gave me..and reading material on the inter net..i have 'progressed' to the stage were I am EXPLODING HERE...

3 That doesn't mean tha i feel omnipoten...to the contrary...i am totally bewilder/frustrated that i can't seem to get any consices of opinions...that 'i' am giving the decision to make as to how to be treated . HUH????  And I just for the life of me don't know where everyone is getting their statistics...i am shocked that i can't get any updated information..by that i mean to find anything printed/ published within the past 6 months on ESTROGEN POSITIVE RECEPTIVE BEGINNGING / NOT IN LYMPH NODES...NOTHING IS OUT THERE THAT I COULD FIND

I am talking to women who DO HAVE OR HAD ESTROGEN POSITIVE RECEPTIVE  BREAST CANCER..AND NOT ONE OF THESE WOMAN...disagrees with my beliefs that we got it from the HRT medication..and more than likely when indiscrimately...prescription were given to not only take the pills but also the premarian cream at the same time.

Point is...the  'statistics' are not apples to apples when it is thrown out that many people took the HRT medication and are not with ESTROGEN POSTIVE RECEPTIVE Breast Cancer (their lives aren't over either...so they just may be unlucky to discover it later)...My statistics are coming from let's call it the 'small' group...who HAVE HAD OR HAVE ESTRGOEN POSITIVE RECEPTIVE BREAST CANCER...in the 'early' stages...and very small in size. and it shows me that 100 percent of these woman and i am repeating to try to get my point across agree with me...THESE ARE WOMAN WHO ALREADY HAVE HAD OR HAVE ESTROGEN POSITIVE RECEPTIVE CANCER...that it more than likely arose from he HRT medication.

OK so that is that...just had my 3rd chemo..a few hours ago..i guess i am doing fine if I can  come here and vent...thank you so much for this site..it has helped me tremendously...

My next step is radiation...so let me go upstairs to read what the cancer institute has put out..the doctor's girl downloaded it for me...let's see what 'questions' i will have on this...thanks again

dear Ms Hamel...

thank you for your understanding letter...i really don't mean to come across as Miss Know it All...i am just so frustrated with all of this...hope i reach another stage where i will become complacent or at least at peace with myself about all this.. also i was re reading my letter to you...and smiling to myself...i hope you realize that I am not totally illiterate..i have very bad eyes...and I write so much... and type very quickly..that i am too lazy to go back to spell chck etc so i am glad you were able to get thru the jibble jabble above.

to get to the point now: the second time i went in for the results of my blood work...they give me neupegeon sp? shots for keeping up the white blood count.

the first time it was above the normal rang.

the last time it as in the normal range. so it feel

now I am taking the chemo for the 3rd time  yesterday...and they had told me i didn't have to come to get the 5shot this week...i was thinking about this...that maybe they had said it becasue my 'beloved' husband piped up with interjecting that it was an inconveniece to drive down there on Saturday mornings...so she siad...you don't have to take it on Saturday..you can take 4 shots this week.

With all the swin flu...i did take the yearly flu shot...but the swine flue is first of all free...and is being horded by the govt to pass out to the young with the cut of age of 65...i am 69...and they are saying i think that if on chemo..not a good idea to take anyways..to be honest with you..i am not so anxious to be 'first' in line with this new ijection...mainly they are giving the nasal method which is a 'live' virus...and i am not so sure that i want to take a 'live' virus..you have to be 'healthy'...etc

so why did i degress to this? oh yes...so I was searching my husband pdr from 2008 and is speficially says that neupogen should NOT be given 24 hours before chemo treaments and definitely no early than 24 after chemo was admisitered.

so i walk in today and i ask...do you realize it is not 24 hours since i had the chemo yesterda? so she says to me..well, you can wait another 4 hours...but we usually give it 18 hours after (that is not true...the first and s econd time i come in earlier for that shot)

so here again..she is giving me the decision to make...(thank G-d I had vented all my frustrations here...because other wise i would have screamed out loud)..what is this business that the patients are suppose to make decisions on how to be treated..isn't there a set guidline that is given..i mean specially how often these injections should be given..WHY DO I HAVE TO MAKE DECICISIONS..

maybe in the past i have been fortunate where i didn't go to too many doctors...but i don't recall ever having to make what i determine to be big decision as to how to handle treatments...

The patient is confused enough..we did not go to medical school...we did not go to after trainings..we don't have the experiences...

whattttttttttttt is exactly going on that 'I" have to come up with this schedule of when these shots should be administered..and she is giving me the choice..ONLY AFTER I QUESTIONED?

OK GRIPE 1 FOR TODAY..SORRY..