Bioidentical hormones..is anyone taking after breast cancer?
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Good morning girls,
I just got my blood test results from my MO. I'm in the mist of trying to decifer the numbers. It appears my estrdiol level is <10. as low as you can go. There is no prog. level noted. Is that a seperate test, isn't it part of the whole picture? Off to a HRT dr.
She also gave me a oncotype score of 28, WITHOUT THE TEST. The CA27.29 test result was 28.1. Not the same thing. I feel duped. Don't know why she would tell me this? She added to my confusion, and mistrust.
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Circles: Wonderful...that is so good to know, because we are having the vitamin infusions down here in Fl and thought we would have to stop them when we went back to NC. I will definitely look into this when we get there in June. My boyfriend who has MS is getting chelation therapy as well, trying to do a metals detox so he can go off his weekly injections.
I wonder if they do thermography? I am going to alternate that with mammograms going forward because thermography supposedly picks up small developing tumors before they can be seen on a mammo. I'm going to have one done here in Fl before we leave in late May, then I'll do my regular mammo at Pardee Hosp in Hendersonville NC which is where we live. It was there that my suspicious area popped up on the mammo last year.
chef127: How do you get an oncotype score without a test? Mine was 13, but I requested the test, even though I wasn't having chemo because I wanted all the facts for my own reference. If I were you I would question my Dr. about that, just out of curiosity. I had a circulating tumor cell test run and it was negative..zero cancer cells..probably different from the one you had.
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Kaara, you better make an appointment well in advance. Took me 2 months to get in and I am not even a first time patient. Yes they do thermograms, chelation, ect. It's a wonderful place!
Chef, my Onocologist also spit a number out without the onco tests. He said I was a 33 as he pushed for chemo. I'll bet it is much lower. Are they going to do an Onco test for you?
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Kaara,
She suggested the oncotype test for my own peace of mind because I refused the chemo and when I called her for the results she said 28. NOT MY ONCO score. I went yesterday, and asked for the oncotype results and did not get one. I should not jump to conclusions about WHY she said THAT. She is only in her office on Thurs. so I will call her tommorow.
At this point I feel lied to. I really like her, but now?????
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Those onco tests are done in California in a special lab...all samples are sent there and take about two weeks to analyze. I would insist on having my test sent to the proper facility for analysis. It's expensive and sometimes insurance doesn't want to pay, but mine was covered by Medicare. Getting a reliable score is important, because you know how vigilant you must be in how you proceed after surgery...even if you are doing alternative treatments. For example if my score had been much higher, or if I had circulating tumor cells, I would be taking more aggressive steps to insure that the bc did not recurr, such as taking Mistletoe injections from Germany.
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This is all fascinating. In Dec 2009 I went to BodyLogic for an evaluation and had the saliva test done which showed that I was EXTREMELY estrogen dominant and had almost no progesterone. He started me on a P cream and I felt great. I was also diagnosed with autoimmune thyroid disease at the same time with sky-high antibodies. So, I have estrogen issues and immune system issues, obviously. I went on a gluten-free diet.
My mammogram in fall 2009 was clean. I missed my 2010 mammo because of surgery and finally had it in 2011 - about 18 months after the 2009 mammo. I went from clean to a 1.7 cm invasive tumor - while I was on progesterone. And I am strongly ER/PR (88/81) positive. Hmmm.
I have an appointment with my BodyLogic doc at the end of Feb and am retesting saliva for E, P, T, and cortisol as well as thyroid studies. It will be interesting to see where I stand with all of this and get his thoughts. I had emailed him after I was diagnosed and he told me to stop the P.
I eat a very clean diet with no processed foods and try to get as much organic as possible. I also try for "clean" meats/fish with no additives, hormones, etc.
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I am confused also,cause Dr John Lee had a book out a few yrs back saying progesterone would protect from bc well then how does that work if you have PR+ receptors? i can only speak from exp. I had a lump form right after my first son was born and I was too scared to talk to my dr so asked my husband at time's relative,I called her dr and he said have a mast right away. I didnt wanna do it so I went on to take birth contrl pills for 30 yrs or so if you count my teen yrs then drs said that caused cancer and stopped those. Then 5 yrs ago my dr suggested bio id estrogen,progest,& test to keep my bones strong and now I have IDC so I am so done with hormones. Not very scientific study of one person but the lump turned into lobular carcinoma in situ and the LCIS after 10 yr turned into IDC so now I gotta have surg on Feb 13th cause I cant ignore Invasive cancer and I can ignore my well meaning friends who say use herbs or go to Germany. To me its no time to play...I want proven therapies...studies clearly show with surg & prpr treatment early cancer can be overcome 80-90% of the time. Hope we all prove its very true and go on to live healthy for a long time.
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Last two posts are iteresting because I was put on progestrone in March of 2011 for the first time because my saliva and blood tests (also done at Body Logic) showed that I had none in my body. I felt good as well, but then less than 9 months later I get bc...IDC..early stage. I stopped the progestrone. Is it possible that progestrone can cause small ductal cancers that might be harmless to grow into invasive ones? I had been taking premarin only for twenty years prior and birth control 20 years prior to that, so it's anybody's guess!
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LiwoG Read the interview with Formby. He says the same thing my onc said. Need clinical trials. Yes there were a couple of people he knew who won the battle with high dose progesterone. No way to know why it worked or what other aspects of their particular physiologies made it work. My onc said he has treated certain patients with high dose estrogen and that has also been shown to work sometimes.
madpeacock According to my onc - you are a grade two which is moderate growth same as me - it took about 7 years for my tumor to grow which was 2.5 cm. I would guess that it took your tumor at least 3 to 4 years to get to 1.7 cm. Also the tumor when very small may not be visible on mammo and until it's large enough would escape mammo and self exam. I would not discount, however, that progesterone may have exacerbated the situation but who knows.
LaylaI have gone around and around with this subject. I was on Climara patch for about 3 1/2 years prior to be diagnosed (estrogen and progesterone). If it took 7 years for the tumor to reach the size it was when we found it then it predates my taking hormones. But, the contraindications on the package clearly stated that it could cause cancer and it was known that if there was already a cancer or a precurser to cancer it was gasoline on a flame. Well, since I didn't know I already had a small cancer growing and none was ever deteced on my annual mammograms I went blithely ahead and used the patch with my gyno's (a woman) blessing).
But I am done with all the research and banging my head against the prevailing protocols. I had my breasts cut off, I did chemo and I may or may not have to do rads (will know soon) and then I will begin Armidex. Believe me, I struggled very hard trying to find a way NOT to take Armidex. I could take a chance and dose myself with this or that but it would be darts at a dart board and I don't have that great an aim.
You have a very good prognosis with 1 cm stage 1 grade 1 and zero nodes. I expect to see you live for 100 years and never see bc again!
.Kathy
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Went to my MO's office again today and low and behold my ONCODX test report was there. Yes the score was 28, same as the ca 27.29 from the blood test. Never make assumptions. sorry Doc.
MY BAD.
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chef, I hate the whole cancer thing. but you are so much more than a number!
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chatsworthgirl - Like you said, who knows.... All I can do is deal and move on.0
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Circles,
This whole trip is so routine for the Dr, nurses,and staff they come off as a bit callous. Its like being at the bakery with a number, NEXT. I'll have 2 neopolians. (I wish)
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I filled out a request form at BodyLogic yesterday. There is a office about 20 miles from me. I got a phone call from an office in Cambridge Mass.400 Miles away. They were referred from the NJ office because they do not accept Medicare patients in NJ. Well I knew this is not covered by MC but for legal reasons, if your a medicare RECIPIENT you are automaticaly disqualified. WTF. Do I really need to go out of state for bios.
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chef127: My BodyLogic just had me sign a paper that I would not bill Medicare for my services because they have opted out of Medicare. Same with my naturopathic doctor.
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I learned something today, Chef. Your number is not your reoccurance score. I got mine today. My number is 22 but my reoccurance rate is only 14%. I don't need chemo (yay) so I think my supplements and vitamin C infusions will do the job. Your Onco will also have your %.
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True...my onco score is 13 but my recurrence rate is 9%. I had a vitamin infusion today that included a lot of vitamins and minerals as well as what they called a push at the end of DMSO, Glutathione, and other antioxidants. It's for cancer patients...expensive...but worth it if it works.
I am going to try the tamoxifen, but am going to start on a half dose and work up to see how I handle it...not what the MO suggested, but I make my own rules for my body:)
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Yes circles,
BC recurrance 28
Distant recur 19% WITH 5 years of tamox...................................................................... OK
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I keep thinking of how each Doctor scared the crap out of me when I said I didn't want chemo. You know, I was never offered Onco, or even informed of it. (I had done my own research) Instead I was belittled, insinuated I was making stupid choices, they knew best, yadda yadda. The Onocologist was the worst offender. He had a chemo plan for me the second I walked in, which he informed me of and wanted to start immediatly, saying my life was on the line. He refused to run a chemo sensitivity tests, saying they don't work, and when I asked for Onco he balked and tried to dismiss it saying it was expensive. He went as far as to predict a high score anyways based on my path report. He expected it would be high, with a 33% reoccurance rate which chemo would reduce the risk to half. But I insisted I wanted the damn test first. He acted like I was wasting valuable time and he really pushed chemo hard. I won that day. I won in a big way...
Is this really "Standard Of Care" and an honor of "First Do No Harm"? No. This is greed. He knew the real "risk" of Onco was to lose thousands of dollars. This is a crime, it is outrages and it needs to stop. I wish the insurance companies would mandate Onco for all BC patients.
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I got a call from my RO yesterday trying to once again talk me into having the whole breast radiation. When she said she couldn't do the five day external beam which I felt was appropriate for my early stage bc, she pushed for WBR. Once again I told her that my mind was made up and if something went wrong it was my responsibility completely. She seemed genuinely concerned, so I wasn't upset.
I'm getting my prescription for tamoxifen today, so will see how it goes. I hate taking drugs.
Circles: My MO looked surprised when I asked for the oncotype and suggested that why would I want it if I wasn't going to do chemo, but seemed to understand when I gave my reasoning that I wanted all the facts in front of me for future reference. Good thing you did your own research!
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My Onco showed a 22 score with a 14% reoccurance rate. Hmmm.
You know, we are so frightened by cancer diagnosis anyways, it's not hard to frighten us further into treatments we don't really need. I'm truely grateful I insisted on Onco.
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My BS did the Onco after I had surgery. He felt it was necessary and I had no problems with insurance paying. I am paying my 10% but Onco lab will setup a payment for anyone and charge no interest. My score was 12 with 8% recurrence. Having the test gave me more peace of mind and assured I would not have to have chemo. Had it been 18 or higher my BS would have suggested chemo. I like him--even if he does make me think of a hummingbird---always talking fast and walking and standing. Hope all have a good weekend.
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I was not able to get an oncoltype test unless I paid for it myself because I was node positive. It would seem to me that getting the test whether or not you are node positive would be of benefit in determining treatment since recurrence can happen whether node positive or negative. So what if you are node positive but have a low oncotype score? I assume that's possible.
I will be 70 this month. I am waiting for the onc and the radiology onc to let me know what their meeting with all the other oncs have come up with in regard to my getting radiation under my arm. I have no breasts now so my onc said if would be underarm only. However, he said initially that he didn't think I would need it and reiterated that after the meeting with the radiology onc.
I really don't want to have radiation and risk the side effect of lymphedema for the rest of my life. Per the research my age and stage mean that my risk of local recurrence is around 2% at five years and goes lower as time goes by.
Any input would be welcome.
Kathy
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Kathy: I'm over 70 and didn't have an mx or rads. I had a lumpectomy and SNB and got clear margins and nodes. Rads were recommended but after careful research and consideration, I felt that for me, I would rather tackle a recurrence with diet and supplements rather than damage my body further. It's a huge committment and expensive, because insurance doesn't pay if you want to do it the natural way. As a compromise with my MO I agreed to try tamoxifen and I started it this week, so we'll see if there are any SE's.
These are all personal choices that only the individual can make based on their level of comfort with risk, and how they feel about doing radiation. I personally had an aversion to it, so a small risk for me, was worth taking.
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You know, my better judgement is to not go back on the bio identicals. I'm doing ok without them. I'm not doing any estrogen blockers either. Talked with Life Extensions today and they admit not enough is known and there could be risks in bios after BC. Now if I were miserable without them, the risks may be worthwhile, but I'm not miserable. So maybe I shouldn't chance it.
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Circles: I tend to agree with you...there just isn't enough information to make a good judgment call. Right now I'm having hot flashes that I can handle...hopefully they won't get worse with this tamox I've started, but so far so good. I think Life Extension gave you good advice.
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I was using bioidentical Sotto Pelle estrogen and testosterone pellets when I was diagnosed. These tiny pellots are inserted into the fatty area of your hip about 4 times a year. The body absorbs them as needed, bypassing the liver. I felt so, so wonderful while on the pellets. I was a new woman. Honestly, I grieved more over having to stop my pellet therapy than I did the initial cancer dx. It has been a year since my last pellet insertion. My dx. date was April 28. I had DCIS, high grade, comedonecrosis, multi focal so we decided a UMX was the way to go. I am on tamoxifen. I spoke with a onc. at Baylor in Houston who is a hormone specialist and he said he would not get too upset about me going back on testosterone IF I was taking tamoxifen to cover any conversion to estrogen. I'm considering it. Testosterone gives a lot of quality of life benefits. It is a big decision.
Anyone use pellet therapy? Testosterone after diagnosis? Thanks!
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The use of testosterone is still very much an individualized decision. I was a participant in the 2004 trial for use of low-dose testosterone for early stage bc survivors with no evidence of disease. I have used it periodically over the years since then. My medical provider is willing to monitor my testosterone and estrogen levels for me when I do.
A.A.
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Hi
Chatsworth
How did they come to the decision that your age and stage would give you a 2% recurrance and go lower as time goes by. I am 76, double mastectomy, oncotype test of 1 which gives me a3% recurrance.
Kaara
I took Tamoxifen some 15 years ago and never had any side effects except now I have cancer again, but as far as side effects during the time I took it, I had none. This time I am taking Arimidex. ( although I don't take it half the time because I really do not want to take it)
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Has anyone heard about hormone pellets?
Is anyone taking testosterone? my DH sent me a link for an article.....is it okay if I post it here? it talks about the tertosterone pellets...and the benefits for post-menopausal women, even survivors.....it addresses many of the issues that I deal with....would love any feedback...
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