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  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    I am very familiar with the Lignans study...we could all go crazy with study after study after study!  conflicting evidence on many things....lignans, tamoxifen and so on....I am sure you are making the best decision for you!  I can respect that completely!  Kiss

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2013

    joellelee - Just wanted to clarify and I am not passing judgement on her work or theories, Dr. Budwig did not win the Nobel Prize, she was nominated according to her own info.  Nobel nominations are sealed for 50 years, so not sure how she knows this, and thousands are nominated for each prize.

  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    Sorry..."top European Cancer Research Scientist, biochemist etc. and a 7 time Nobel Prize
    nominee, and the leading authority on fats and oils. "...she was very well respected.  I was confusing her with Linus Pauling who won two Nobel prizes for his work in Vtamin C therapy.

  • april485
    april485 Member Posts: 3,257
    edited March 2013

    Yikes! I came here expecting to see a discussion on the merits of tamoxifen as that is what I will likely be prescribed. Why such contention about this drug? I know some people try to use natural estrogen blockers, but the studies show Tamoxifen to be very well tolerated by MOST and very effective. This is a life and death situation for many people. Tamoxifen has 30 years of studies, many of them by high caliber researchers, not just the drug companies.

    I just wish that everyone could just do their own thing based on their OWN research and comfort level. Please, I am confused enough and scared enough without this kind of thing.

    Momine, thanks for the information and you too Timothy and Selena Wolf. I appreciate the link to those studies.

    Joelle, I wish you the best with your tx whatever you decide to do.

  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    April...Sorry for all of the contention.  I am scared of Tamoxifen as well!  Which is why I began this thread!  Just wanted to trade info.  DIM is now being studied by The National Cancer Institute!  Very promising if a conventional institute is studyin a supplement!

  • luckypenny
    luckypenny Member Posts: 150
    edited March 2013

    Joellelee

    YOu don't appear confused at all or contemplating any decision.    It seems you have your mind made up.  That is totally fine.  You do whatever treatment makes the most sense to you.   Since you think conventional treatment wont work for you( as evidenced by  almost 200 posts detailing your opinion)  and not an option for you, why are you  spending so much energy trying desperately to convince others of your opinion?  What are you gaining by this? 

    It feels like you are trying to engage others into an argument  , then retreating and crying victim , when people diagree  with you.   Its exhausting.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    Joellelee ... if what you wanted to do was discuss tamoxifen and trade information about the pro's and con's of taking it, then that's what a few of us were trying to do.  However, discussion usually entails the give- and take of information, not the complete- and utter rejection of anyone's opinion but your own.  Yeah, we got that you were scared of tamoxifen.  Loud and clear!  And you posted the source that concerned you.  A few of us looked at your source, read through the material, and tried to discuss that, perhaps, that source wasn't the most reliable and that you should, maybe, be widening your research before rejecting tamoxifen out-of-hand based on a questionable source.  A few links were provided for you to peruse.  At no time was anyone trying to tell you that your decision was wrong; we were only (trying!) to point out that more research may be a good idea.

    Unfortunately, every time you responded, you shot yourself in the foot and revealed your agenda.  You had no intention of taking tamoxifen (which is entirely your right) and, moreover, you wanted everyone posting to agree not only with your decision, but your reasons for doing so.  That's okay too.  However, when you started inferring that those of us who made different decisions and used different sources were destined to a early, horrible death (by either tamoxifen or chemotherapy), you crossed a line.

    There are a lot of new women to the boards who are struggling with the fear of a new diagnosis and information-overload.  The tactics you chose to take in putting your point across were upsetting for those in the process of designing their treatment programmes and comtemplating tamoxifen.  Yes, you are entitled to your opinion.  Yes, you are entitled to make choices regarding what you are prepared to do.  But, geez, woman!  Don't scared the bejayzus out of people with your claims that conventional treatment is going to kill each and every one of us!  Learn to tread more gently.

  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    I am sooo glad you can read my mind and my agenda on Tamoxifen.Cool

    You accuse me of arguing my case...I feel you all are arguing your case as well with feet firmly dug into the ground...I sense the hypocracy.

    Thanks to everyone who tried to answer my concerns on my post, I appreciate it...I will not be positing on this link anymore...XXOO

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    Believe you me, mind reading was NOT necessary. 

  • luckypenny
    luckypenny Member Posts: 150
    edited March 2013

    Yep , no mind reading necessary.  Your last post on the Team ILC thread confirms it.   Whew! 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2013

    Joellelee - why no comment on the LifeMath figures? They do show an obvious benefit from chemo/hormone tx in your case.

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited March 2013

    Lifemath is a computer program that somebody programmed with their opinions and used "relative risk statistics". Only bad oncs use this so they don't have to talk to their patients. My onc says run from any doc that tries to push this on patients because it's all theoretical.  

  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    Agree, Nattygroves...

    Suzie, I will answer your question as you are asking me on two different threads....really don't know why the answer is all that important to you???  Really, what does it matter to you if you are confident in your own decisions?  I consider my new natural hormone therapy just as effective or even more effective than Tamoxifen....so, if I use Tamoxifen inserted in your graph, it actually has a much higher survival rate for me.  Only a 3% difference if I do chemo....not nearly enough benefit for me considering the life shattering consequences down the road, in my opinion.  Now, please don't bash me for my natural hormone therapy for which I am sure you don't know much about.Smile

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited March 2013

    Joellelee....stop the madness here!!!!!....more than your "concerns" about tamoxifen, I feel you are enjoying being so confrontational.....many women here have given their

    opinions honestly and sincerely......please go about your business with your natural hormone therapy, and, I think I speak for everyone when I say we all wish you the best of luck......we are all mature intelligent women here who have gone to great lengths in our decision making.....leave it at that please!!!!!!!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2013

    My onc never mentioned LifeMath, but seeing I can't speak to him, it is a useful tool to calculate possible recurrence. I'm sure the computer programmers put a lot more effort into it than you think NattyPatty - being one myself, there is no way they would make stuff up. Incidentally - it was spot on with the recurrence rate my onc gave me.

    Joellelee - I think your onc or you may be mistaken - 7 positive nodes is very serious.

  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    Suzie...When I type into your math thingy with tamoxifen/hormone therapy with chemo and then without chemo..there is only a 3% difference....so, I don't know what you are basing 'very serious' on...are you basing it on if I do nothing?  Because, even if I do absolutely nothing, I still have a 50% survival rate...

    @Scottie!!!  I am answering Suzie because she keeps asking me this question.  I had already said I was finished...ON MY OWN POST FOR GOODNESS SAKES!  ...but, then trying to be nice, I decided to answer her question.  Do me a favor, Miss Scottie and head on over to the alternative thread where you will see your 'friends' here berating us girls over there the same way you seem to feel I am berating you all here.  For the love of God, what is all of the fuss about????  If you are all so confident in your decisions, why are your feathers ruffled?  Scottie, if you don't like the madness then get off the darn thread!  Yikes...everyone needs to grow up!  Again...just answering a question I kept getting asked....so, I will leave MY post again.  Unreal.

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited March 2013

    Suzie, so sorry to hear your current doc is using Lifemath. You must be scared. I'm sure you can find a doc who doesn't use a theoretical program. Are you near a city? Hang in there.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2013

    He doesn't use LifeMath at all for your information and he is one of the top oncologists in this country. The 23% risk of recurrence I was given is quoted in many many studies.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2013

    J - I guessed your age as being 45 and then 50 - both of those ages with your diagnosis showed an improvement of survival of 18% and 15% when adding chemo to the hormone therapy.

    A 50% chance of survival without treatment sure wouldn't help me sleep at night.

  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    Thanks for looking out for me, Suzie!!!!Smile

    Geeze, if the cancer doesn't kill us, the stress here sure will!!!  Lighten up, peeps!!!!!Surprised

  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited March 2013

    Suze, so sorry your doc is giving you inflated figures. You need to get the studies yourself and get the absolute risk numbers. Bring them here okay? Then maybe find a new doc.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2013

    That 23% was halved to 11.5% risk of recurrence after treatment and is common knowledge.

    Women who have early stage bc ie node neg stage 1 even grade 1 and who didn't even need chemo, shouldn't advise others who are at a much higher risk to go with alternatives.

    My husband was cured of Stage IV bowel cancer by our onc, so he'll do me. Joellalee should be the one looking for a new onc I reckon.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2013

    Joellelee... will you PLEASE just STOP.   I agree that you seem to - somehow - be getting off on being confrontational.  This is so not cool.  We have, all, recognized your right to your opinion and beliefs, so will you PLEASE quit coming back and stirring the pot with your comments.  You are making an awful lot of statements that have no basis in truth and are bordering on inflammatory.  "... the shattering consequences down the road ..." with regards to taking tamoxifen is akin to fear-mongering and is completely irresponsible.   Even if it's your own post - and you keep reiterating that - you still have to be accountable for what you are saying.  Scaring newly-diagnosed women to death is NOT providing information and support.  Opinions are always welcome if they are posed in a respectful and compassionate manner with an eye kept to the fact that many women are facing difficult decisions and do NOT need to be bombarded with statements saying, for example, that conventional treatment will absoluately kill you down the road and that you are shocked that those of us who do choose conventional treatment are willing to risk such an outcome  This is neither accurate nor kind... and the LOL's and the little smiley faces cannot disguise that.

    Kudos to you for feeling so confident in your treatment plan.  I think that's lovely and I wish you all the best.  Now, please, just be quiet and go away and follow your preferred treatment plan.  You are not making any friends with your combative and insensitive approach.

  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    Suzie...I think I mentioned previously I had the same response from two oncs and 2 rad docs...all agreed with the slow growth not needing chemo etc...They had seen some of the studies I had shown them.  No worries about me...instead of a new onc, I will be applying with Dr. Gonzalez...again, thanks for your concern.Wink

    Also, your statement about who should advise others....all of this should be taken with a grain of salt as nothing is perfect!  Not a problem helping each other with sharing info....and, absolutely nothing wrong with alternatives.  I advise, maybe, you should do some research in that arena....and, not research funded by the ACS or anyone with money to gain.

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2013

    I use complementary treatment such as magnesium drops. I also have done a lot of research into alternatives and I'm afraid it just doesn't stack up.

    http://www.ncbi.nlm.nih.gov/pubmed/22863642

  • Mardibra
    Mardibra Member Posts: 1,111
    edited March 2013

    Medicine is a business....plain and simple.  So who would not have money to gain?  Both alternative and mainstream medicine make money.  If mainstream medicine is involved in some great conspiracy to defraud the public then why wouldnt the same be true of alternative therapists?  There are scumbags in all professions and alternative and mainstream medicine is not different.

  • Sun44
    Sun44 Member Posts: 10
    edited March 2013

    I hopped into this forum to get more info on estrogen and what the hell I'm supposed to be eating and not eating with my breast cancer...is this the place I'm supposed to be? Seems like I walked into a hornets nest of another kind!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited March 2013

    J - Did you really have 7 positive nodes? I find it really hard to believe any oncologist would not recommend chemo in that case - given that it already has spread beyond the breast.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Sun, I just looked at the thread thinking a little of the same thing, that perhaps I would learn something about recurrence, etc. All I see is arguing.



    From what I can tell, Joelllele started this thread, she is correct.



    I am thinking there are plenty of other threads that address the tamoxifen issue and the complementary approach in conjunction with, or separately.



    Rather than just read pages of arguing, lets seek those threads out.

  • jojo68
    jojo68 Member Posts: 881
    edited March 2013

    The only reason I am continuing to post on this thread is people are continuing to ask me questions. If I didn't answer, I might be bashed and when I do answer I'm bashed.

    Actually, there are many alternative docs who don't try to rake you over the coals. Dr. Gonzalez is known for treating patients without accepting a dime. I thought I was in the right catagory...holistic...now I see I need to just hide and sequester myself to the alternative forums...

    Why, Suzie, do u seem so obsessed

    with my nodes and recommended treatment? I don't get it. They all said that ILC is slow growing and will not gobble up chemo enough to benefit. Doesn't matter if it was in 7 nodes...had no extension into surrounding tissue...took all nodes out. Everyone had circulating cancer cells...ILC may not eat the chemo enough for it to reach the stem cells. They stressed hormone therapy.

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