natural girls
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FAIRY....how are your hormones being tested....blood, saliva, urine? I get so many different answers on which process is most reliable. Patti
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Hi!
Yes, via blood draws not saliva. I did do the saliva route once, but I did them myself via a test I got online from a lab, and the results were pretty similar.L
ox
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Fairy, that's really strange about your progesterone level but as your Dr said, hormones do fluctuate during the month. Bummer though, because you may very well be at a good level but just caught it at the wrong time of the month. Will you re-test just out of curiosity? Is saliva testing for progesterone more accurate?
Terri
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Lorraine -
COngrats on your Estrogen numbers! It has to be very validating!
Beth
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If we're not on Progesterone every day of the month, how in the world can you ever get a meaningful reading and handle on this, unless maybe you do multiple tests within the same month?
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anomdenet wrote:
Now, runswith, honey, I don't want to sound stupid but did they give you a before rads xray and a post rads xray? So they had a baseline xray to compare?
************
It was weird. Rad onc did not mention this until we were all finished with rads - (didn't bother to look????), but she says she's seeing this lung spot on the CT scan that was done for mapping the radiation fields. That scan was done at the beginning of Dec, but she's just mentioning it now - after I thought I was all done!
She checked it against a PET scan I had during the summer and she said it wasn't there back then. So, IF it's cancer, that would mean it was growing while I was on chemo...
Hmmmph.
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I emailed the doc to ask about fluctuation etc, here is her response, she is going on a leave for a while so I will be seeing another doc on Monday.
Yes when the periods cease it is hard to know exactly when to take the
progesterone and it is sort of an art form and there are no hard rules - but you
are in a stage where it would be okay to start using the cream 3 weeks on and then
1 week off - but watch to see if acne worsens, if so go back to 2 on and 2 off -
also look at how you feel on vs off the progesterone and how sleep and mood are.
And discuss this with Dr. Garilli.
>
> I try to educate my clients when to draw their hormone in relation to the hormone
useage, and it looks like you drew the hormones when we would expect your
progesterone to be at it's lowest, so then the labs makes sense and that is why
your progesterone looks so low, and we did get useful information, is that I have
not over medicated or you have not used two much, because over time the
progesterone can start to become elevated and build up in the fat tissues as
storage and the levels can be high even when you are not taking the cream, and
that is why I have ladies take 1 week off each month to prevent that, many doctors
say use the progesterone everyday ( and that is okay too, just not my style) So
we know we have not loaded your fat stores with excess progesterone, so that is
good information.
>
> What you want to do in the future, is to plan the hormone lab draw when you think
your hormones are at their highest -so while and after you have been taking them
for 1 to 2 weeks so you know how high the hormone are at their peak.
>
> Having low hormones is not dangerous - but having too high of Estrogens or
testosterone can be. Progesterone is not considered dangerous if it is found to
be high, but we are aiming for balance, finding the sweet spot.
>
> You are at the most difficult stage because I think is a bit too early to say your
are post-menopausal (has is been over 12 months since you last period or
spotting?) - which you are approaching, so your body is going through transition
right now. So hang in there and see what Dr. Garillli recommends.
>
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Runs, thanks for the Yoga links! Very cool, will check into them later and have already emailed to a friend who does a class weekly but was looking for something to do at home as well.
Fairy, hello dear! My memory is rusty with my low estrogen and all (lol) but I thought in Dr. Lee's book it said we were not to test hormones with blood? No wait, maybe that was you weren't supposed to TAKE hormones in your blood or in your digestive tract?
In any case, WAY TO FRIGGIN GO GIRL on the 2.40 ratio!!!! I am retesting in April. My last one was almost 2.0, so I am hoping this next one does a jump like yours! Also, I think it is good your Doc has found you are not getting too much progesterone, that is good to know. So maybe good it happened this way anyway!
Oil pulling. Wow. There is just no end to the stuff we are finding here!!!! Swishing 1 TBSP for 20 min. Can you use just any oil?
OH Vivre, last appt with my Osteopath I asked about NAC. She had totally heard of it. She feels that because I am taking a "Detox Complete" formula that I don't need additional Cyctine. (There were different types of cyctines but she went on about how it is doing the same thing). Anyway, it made me look educated I guess to ask .LOL. Thanks for the info!
No more info on the PREVENTION CONVENTION lately?
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Fairy, what Spring says about Dr. Lee is still the prevailing thinking. Dr. Formby has written at length about this to other groups. Nice what your doc says about hormone balance being an art and going by how you feel. And she does know that can P can build up. Most docs don't know that.
http://www.virginiahopkinstestkits.com/salivavsblood.html#absorb
Excerpts from above URL:
What a Serum Blood Test Measures
"Serum Blood" tests are what your doctor sends you to the lab for. They measure hormone concentrations in to the serum or plasma part of the blood. Plasma is the watery, non-cellular portion of the blood from which cellular components such as red blood cells and white blood cells, are excluded. Serum is the essentially the same as plasma except that fibrinogen has been removed. Serum and plasma, being watery, contain water-soluble (hydrophilic) substances such as water-soluble vitamins, carbohydrates, and proteins. Serum and plasma do not contain fat-soluble (lipophilic) substances. For the purposes of this discussion, serum and plasma are interchangeable and I will refer to them as serum. Sex hormones such as progesterone, estrogen and testosterone are fat-soluble steroids similar to cholesterol. When you have a serum cholesterol measurement, you are measuring cholesterol bound to protein, which makes it water-soluble. (Recall that serum cholesterol is described as HDL or LDL cholesterol, referring to the proteins to which it is bound.)
How Progesterone Travels in Blood
The ovary-produced progesterone found in serum is also largely protein-bound. Protein-bound progesterone is not readily bioavailable to receptors in target tissues throughout the body. It is on its way to the liver to be excreted in bile. Only 2 to 5 percent of serum progesterone is "free" or non-protein-bound. This is the progesterone available to target tissues and to saliva. Thus, progesterone measured by serum levels is mostly a measure of progesterone that is not going to be used by the body. A serum test can be used to compare one woman's progesterone production to that of another woman, or to test how much progesterone is being made by a woman's ovaries.
When progesterone is given intravenously, 80 percent of it is taken up by red blood cell membranes that are fatty in nature and therefore available to fat-soluble progesterone molecules. Less than 20 percent will be found in serum. It is obvious that serum levels would not detect the great majority of the progesterone added to whole blood.
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I have been reading for a few days and I will never make it through this thread! So I just gonna spill my guts here and ask for reactions.
I had two tumors. #1 was 1.5 cm with good margins except for only 1mm anterior. This tumor is grade 2, ER 100%, HER2+. This tumor had vascular invasion.
#2 was 1.3 cm with good margins. Grade 3, ER 100% but HER2 negative. Both my surgeon and my radiation oncologist say:
Either increase the margin or do a mastectomy. With a mastectomy I do not have to do radiation. Herceptin for HER2, (it is such a "gift" to us bc women) other chemo for the grade 3, and hormone blockers for the ER 100%.
I went to a naturopath yesterday. He did not look at my pathology report. He wanted to take detailed history, send in lots and lots of blood work and go from there. I asked him why not do saliva for hormone balance and he said that the blood report is better. At least from the lab he sends to. I said that I was rubbing some ProGest on to increase my progesterone and he emphatically said not do that. Could overdose on the stuff or something I guess. After he gets my levels then he will decide? I did not ask him if he EVER recommends the cream...
I dunno I felt funny about it.
Today I went to the radiation oncologist. While she gave me the standard protocol recommendation, she clearly said that my chances of living longer are enhanced by doing the protocol. I asked lots of questions but now I have more:
If the mastectomy choice only addresses recurrence at the site, then what's the big deal? Why not wait and see if it is needed? If the worry about mets is from the HER2 then why the herceptin? The tumor has been removed, what is it that the herceptin will get? This is the tumor with the narrow margin. Does HER2 make the need for surgery more pressing?
Well, if anyone can help with this, show me articles (and help me understand them,
) I would appreciate it. You are such a neat bunch of women. Thanks for being there.Susie
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Fairy, It does make sense that the time you took the test could make a difference. If you are perimeno, your progesterone levels will still be going up and down. My hormone doc believes that the urine and saliva tests are more reliable. She says they give different stats, so she will prescibe one or the other, depending on what she is looking for for each person. She does not like the blood tests.
Runswith-do you think that spot could have been CAUSED by rads? Maybe you should get on the NAC and try to chelate all that radiation. I just got back from my therm, and in just 3 months, on iodine the hot areas from the rads went down a lot. I started on 3 doses of NAC a day, but I had to ease off because I was detoxing so fast. I think I have a lot of toxins from the amalgams. So now I am doing the NAC in smaller amts, plus the oil pulling. I am determined to get all this junk out of me!
Springtime, How is your detox going? Are you on iodine too? As for the prevention convention, I was gone all day so I could not talk to the hotel rep, but I think I am going to have it at another venue because they seem to be more on board. It is a brand new, eco friendly hotel. I am just negotiating a good price. But the dates are set for March 12-14 so get your plane ticket if you do not want to drive all the way. I have most of the speakers on board, and I am meeting with the comedy club next week. I have someone to teach some yoga and zumba too(and maybe even some bellydancing, lol) . It is going to be a blast! I am thinking the hotel and lunch, and seminar space is going to be less than $100 per day, and the comedy show will be about $30. Everyone will have to have dinner on their own. The rooms have mini fridges if anyone wants to keep healthy snacks. If you share a room with more than one other person, the price will go down.
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Hi, Susie ~ Sorry you have reason to be here, but glad you've found us. You've asked for a lot of input, so let me try to address at least one or two of your concerns. First, the 1mm anterior margin is concerning enough that I would absolutely not advocate taking a wait & see approach. If any stray microscopic cells exist beyond that 1mm margin, the fear would be a recurrence in your chest wall, which is not an easy recurrence to treat.
Also, in view of the vascular invasion noted for tumor #1, a mastectomy would address not only a local recurrance but also prevent bc cells that are already on the move from traveling to other parts of your body.
As you know, prior to the advent of Herceptin, many women did not survive Her+ bc. If I was in your situation, I would absolutely get a second opinion from another facility/medical team. I think you really need a team that can help you understand your risk factors. But I would personally want very aggressive treatment now, in combination with natural/holistic things to address strengthening my body and potential SE's, in the hope that it you will get it all the first time.
The other thing you might want to do if you haven't already, is post at least one of your questions in the Her+ forum, where the women will have first hand experience to share. Also, I've noticed that when someone asks multiple questions in a post, it's kind of hard for anyone to tackle, so maybe ask one question at a time -- even if that means multiple posts. Good luck, and please keep us posted on what you find out and decide to do. Deanna
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Lorraine...Congrats on our 2:16 ratio!! What DIM are you taking? I had my estrogen levels and ratio retested about 3 weeks ago and go to my doctor next week for the results. My last two ratios weren't so great-0.54 in Sept.(2-Hydroxyestrone was 111, 16alpha-Hydroxyestrone 206...UGH) and even worse in April-ratio 0.18 (2-H was 106, 16-H was 598). I'm now taking 4 DIM a day and hoping that it is much improved. My doctor prefers the blood test too.
Vivre...The prevention convention sounds great! Keep the info coming.
Li
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Susie, I echo what Deanna said. I personally would be medically aggressive with those stats as well. 1 mm from the interior and vascular invasion. Even with negative nodes, it can travel through the blood (the vascular invasion). I did the medical route and I didn't get into all this other stuff until I was done with chemo and going through rads. like I had a chance to breathe. You have the advantage of being here right now, so that is good. It does not have to be an either / or. This is my take anyway. Bless you in the journey!
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Well boy oh boy am I ever glad that I got brave enough to post my dilemma. I am so surprised to hear your recommendations. And I am so appreciative of how generous you are with your time and knowledge.
I think that a second opinion is a good idea. It is my understanding that Cancer Centers of America is a good place to go. I am in Colorado Springs, so I could go either to Phoenix or Chicago...
Have any of you ever gone to one of their institutions?
Susie
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Susie, I have not been but I would love to hear what it is like there. I have heard they may be the best thing around for an integrative approach right now... Let us know what you find out...
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Hi Susie: You might get some answers by emailing the breast cancer support at www.willow.org
This is a Canadian organization, but there is an email for assistance and questions.
Good luck!
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Susie, there was a thread here within the past month about Treatment Centers of America. One of the gals who posts here went to one for a thorough follow up evaluation before moving abroad, and she spoke very highly of her experience. You might try using the search box (to upper right) to find that thread. There were some negative comments as well, but mostly regarding undisclosed costs for treatment, as I recall. And Phoenix would be a nice warm getaway for you at this time of year if you can swing it.
Just as an aside, I used to live in Colorado Springs. Have you lived there a long time? Deanna
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She has quite a few free practices posted for specific purposes - better sleep, fertility (Crunchy!), rebuilding your core - etc.
Ooh, thank you, Pill! I will have to check that out!
Fairy, that is great about the ratio -- so weird about the progesterone!!
Susie, I can't speak to the chemo side of things, but I agree with the others that I'd go for a wider margin (with a reexcision -- I personally probably wouldn't do a mastectomy unless it was VERY strongly recommended by at least two specialists).
About the Eat Right for your Type... I am O-negative, and his recommendations don't fit me at all. I have never been a big meat-eater, and in fact I don't even eat chicken or fish but maybe once a week if that. (Even when I cooked an organic chicken curry tonight, I couldn't bring myself to eat the chicken... it just didn't appeal to me at all... I ended up feeding it to our Poodles.) But give me broccoli or green smoothies all day long and I'm happy! Anyway, I think the Type guy probably has some interesting ideas, but I think they're based on his theories rather than research -- although I haven't read the book so I could be wrong.
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Mercola had an interesting article on DNA:
http://articles.mercola.com/sites/articles/archive/2010/01/23/Why-Your-DNA-Isnt-Your-Destiny.aspx
I feel there is just too much emphasis in the medical community on accepting the fact that some people are just going to have illnesses because of their genes. I was furious when I got dxd because no one in my family had ever had bc, and I was healthier than most of my relatives. I come from an Italian american family on one side where diabetes in rampant, and heart disease on the other from a diet that is rich in fattening and southern fried foods. I always figured that would be my fate. Since changing my lifestlye I am convinced that cancer is not a "crap shoot" as some would profess, based on our own genetics. We do have a lot of control over whether or not our cells are nutured so they can stay healthy and not morph into cancer. I know that doctors will tell me I have a low risk of heart disease and diabetes now because of my new lifestlye, so why don't they say the same about my risk of getting cancer? One of the reason's I refused that stupid oncotype test was because I just did not want to hear about what could be. I wanted to think about all the positive ways I could be proactive rather than worrying that I might have some suseptible gene.I also did not want them to start pushing chemo on me just because I might have a higher onco score. If this their mindset, then why don't they just cut the breasts off of all women, because as women, we might get breast cancer! We cannot control everything in our environment. It is a constant struggle to find foods that are healthy and not tainted with GMO's, hormones, and antibiotics. But I know one thing, my new regime saved me from diabetes, so it makes sense to me that it will save me from getting bc again.
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Deni: Thanks of the Iscador information. Did not know about that one.
And Vivre, you wrote: "........We do have a lot of control over whether or not our cells are nutured so they can stay healthy and not morph into cancer. I know that doctors will tell me I have a low risk of heart disease and diabetes now because of my new lifestlye, so why don't they say the same about my risk of getting cancer?......"
I guess we have to keep demanding answers from the medical community. I have those same questions, I don't understand why they think the way that they think, I sometimes believe that they don't think at all: they just go by what's in that thing they call the "litterature", and, heaven forbids, they won't step anywhere away from that, which means most of them won't even try and think about it.
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Susie..... I had four different consultations hoping to hear what I wanted which was no chemo. They all agreed pretty much on the same form of tx, just different choice of "cocktails". My second opinion was at a Cancer Treatment Ctr of America just south of Seattle. I was really impressed with the Center and was looking for a place that included integrative therapy with a holistic approach. I did not go with them because I found another facility closer to home that welcomed the alternative therapy alongside the chemo. The only thing I can say about the CTCA is it seems they typically try a more conservative approach of chemo. I ultimately chose a more aggressive chemo and with the help of supplements from the naturopath (approved by onco) and acupuncture I did really well and am really grateful I went that route. Consequently, the more aggressive chemo was over sooner than the conservative longer treatment, thus again very thankful to be finished with chemo sooner, then started the radiation. You will ultimately choose the right path for you for this time in your life, but it can be overwhelming coming to that decision. My very best wishes for you along this journey. Patti
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Did do the Blood DIET book even before my breast cancer DX and it was pretty good to follow, though i am a Type O and meat is really big for this blood type.. and i limit that alot and try to stay with the healthy stuff as i also have leaky gut! Got off of gluten and dairy a year before also as i had alot of adrenal and endcorine system was very off balanced. HAD been on bio hormones for several years but stopped working and now i know why!!!
Have had a third appt with my new MD who is into Intergrative Mediciine. ALL this time since chemo i was convinced i was needed for bio;s again and I AM FINE based on my saliva and blood test and will retest in about 6 weeks. My sleep issues and hot flashes and overall fatigue and just down to the bare minimum for sanity included. Would come home from teaching and just could not even explain my over the chart exhaustion and mental weariness.
IT is all adfrenal based and a pituatary (sp) gland that is very low and and alot of my meridan points seen are very stressed and overall off balanced . I have been also tested where my serotonin and dopamine levels are crashing. Have me started on a INTENSE detox system.. 90 drops total in a QT water daily and a fiber drink that tastes like something from a swamp!!! Supplementation to now take for three weeks to start rebuidling my neuro transmitters and improve my sleep ( and it has in three nights) and calm my system down .Taurine is one of the supplements taken daily, Then they will be phasing me in on something to balance my GABA recpetors....THEN.. next week they will be doin a ultra sound to see the extent of my fibromayagia anbd joint pain etc. AND then a test to see why my ureter (sp) is as weak as it is and have no idea what that could be and maybe from the chemo?? My kiidney is fine.
SO 7 mos of Dr's telling me,take a sleeping pill or lets try another anti- depressant as nothing was workinn for me and month by month I WAS crashing!!!SO the diagnosis of not goin on Bio hormones and thinking that is exactly what i needed again.. SHOCKED me!!!
Sorry so long but it is impt for anyone who thinks it is all hormonal issues after chemo or DX may NOT be, My hot flashes is actually from failing adrenals and all related to my endcorine system crashing!!!!!
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Wow Donna,that is so great that you finally found a doctor who is helping you. I am so happy for you. Let us know how your progress goes.
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Whew! Well yesterday was a very difficult day so I was glad that I could write to you for comments. I had been at the radiation oncologist's office. She told me to stay off the internet and she told me that I had two choices. Choice number 1 is to live a long and healthy life through Herceptin, chemo and hormone blockers. Choice number 2 is to take my chances.
My hubby and I left that appointment absolutely depressed and devastated.
I wrote to this list and got mostly recommendations to be aggressive! I was surprised, but I have called the Cancer Treatment Centers of America to see if I can go there. They will call me on Mon or Tue to let me know. Maybe I really do have to do all of that medical stuff. I will believe it if that is what they say.
I called Linda last night after the shock and she got me so calmed down and feeling so strong that I had a good night's sleep! Thank you, Linda.
I will continue to try to read this thread, but it is sooooo long and hard to get through. I am at page 65 now. Is therre a way to jump to a particular page on a thread so that I don't have to keep clicking a couple pages at a time?
Susie
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Susie, my doctors told me to stay off the internet too. LOL. I am so glad I did not listen. I only wish I had done it sooner. I did not find the alternative ladies here until I was almost done with treatments. Keep doing your research and get another opinion. Knowledge is power. If you want to go to CTCA or the Block center in Chicago, I have plenty of empty bedroom space. Follow your heart. When you make the right decision, you will know it because you will feel such relief. It is oh so hard to get there, but you eventually will. We will all be here to support you, no matter what you choose.
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Susie, I'm so sorry you were told that. I was told similar things by the first two breast surgeons I saw. They both said when I explained how I wanted my course of treatment, "Well any doctor who would do THAT is a BAAAAD doctor... we only practice GOOD medicine here"... well guess what -- it turns out (based on my later biopsy) that they were wrong and I was right about the course of action I wanted!! If your doctor is going to bully you into a "standard of care" that has a great 5-year "survival" rate but a crappy long-term CURE and quality of life rate, I urge you to find another doctor!!
Even if a doctor is right and I am wrong, I expect them to EXPLAIN it to me... not BULLY and INTIMIDATE me with emotional manipulation rather than facts. Ya know?? Your oncologist was using emotional/intimidation tactics. NOT acceptable in my book.
As for this thread, don't feel like you have to read every page!! I think I started chiming in when it was up to page 60 or so, but I doubt I read each and every page. It's good to have all the info when you have a question (the "search" function will turn up all kinds of awesome information!) but you're welcome to just plop right in where you are and make yourself at home!!
Vivre, I find the whole "cancer is a crap shoot" beyond annoying, too. (and DANGEROUS!) I think we've discussed here recently the irony of them saying "here's what you can eat and do to prevent cancer," yet once we have cancer, it's "enh, diet doesn't make a difference; just eat sensibly and try to keep it under 2,000 calories a day" (yes, I actually heard a doctor tell a new cancer patient that with my own two ears). It's SO frustrating and irresponsible.
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Yaah, they had told me to "stay off the internet" as well (4 years ago).
Julia, when they say "cancer is a crap shoot", I have to give them the benefit of the doubt, for once: perhaps they mean it's a crap shoot in the sense that different people get "variously" aggressive cancers. Still, I am sure everybody knows by now that I am a big fan of diet and supplementation in the management/treatment of cancer.
If making one's body as strong as possible does not keep cancer at bay, I don't see why medicine alone would be able to achieve that feat.
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What ever you do , DO NOT stay off the internet! This is the to learn and knowledge is power. I agree with Vivre, when you find what is right for you, you feel a sense of peace. However, this is a scary journey, and I have had my peace disrupted many times. Then you research more.
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About staying off the internet... The social worker/psychologist in my rad onc's office actually handed me a full page list of websites they recommended as good ones to access for bc info. Since I was almost to the end of my active tx at that point, it was a moot issue for me. But it stood out in my mind as pro-active vs. either too lazy to separate the good from the bad, or too egotistical to think anyone else in the world knows as much as they do, which is the attitude too many docs have.
As far as cancer being a crap shoot, I'm with Yasmin on that statement being partly true. Until we completely understand the biology behind each type of bc, there will always be a "crap shoot" element. But it's based on an information gap -- not chance, which is what so many women sadly believe.
Donna, your new doc sounds great! So glad you found him. Please keep us posted on everything you find out. Deanna
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