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  • fairy49
    fairy49 Member Posts: 536
    edited February 2010

    well.......I am PO'd right now!!!Yell was supposed to go to my naturopathic MD this morning to get estriol, she called me an hour before my appointment to say that she wasn't sure if I still wanted to come down because she couldn't give me a prescription for estriol because it was against regulations as I have had BC..........she is afraid to go against protocol.......you guys I am so friggin frustrated, that is the 2nd naturopath that won't do it.  Get this, she also told me she TOTALLY agrees with the whole hormone balance issue, she KNOWS estriol and progesterone are protective but she still can't do it.  Sorry had to vent!!!

    L

    ox

  • Nan
    Nan Member Posts: 49
    edited February 2010

    Dear LiveForever,

    Before you have surgery please read this article from Life Extension, and discuss this with your surgeon. I know I keep posting this, but I feel it is very important.

    http://www.lef.org/magazine/mag2009/dec2009_Preventing-Surgery-Induced-Cancer-Metastasis_01.htm

  • Nan
    Nan Member Posts: 49
    edited February 2010

    Dear fairy49,

    You do know that you can purchase estriol and progesterone from Life Extension. You really must find an antiaging specialist who practices what they preach, and in CA....there are many. Check out Dr. Uzzi Reiss. This whole "protocol" issue is total BS!! So is the protocol for BC...as the chemotherapy drugs are used for every type of cancer.

    My daughter Lori is on BHRT and she was dx with TNBC, but her doctor knows the importance of having hormonal balance.

  • Yazmin
    Yazmin Member Posts: 218
    edited February 2010

    Anondenet, you wrote: "...I have noticed that when people take a bad turn, others abandon them because they don't know what to say....."

    ...And Efflorescing, you echoed: ".....Yes, Anon, I have yet to hear from a dear friend whom my daughter told I have been diagnosed with BC. Twice..."

    I have been abandoned by a dear friend as soon as I was diagnosed, and I was actually attacked/ostracized at work after diagnosis.

    This is a  phenomenon I did not know at all in my life before breast cancer.

    Now tell me: Do all those people tend to try and come back when they see that you are not only surviving, but also thriving? Or do they tend to be too ashamed of themselves to ever come back? I feel very strongly about this issue. 

  • makingway
    makingway Member Posts: 465
    edited February 2010
    Fairy- How frustrating! Who's body is it anyway?? I hate these doctors with their 'God' complex. PM me, I can give you a number for someone I saw who might help.
  • Yazmin
    Yazmin Member Posts: 218
    edited February 2010

    Fairy: I know this is frustrating. Hope your other problem has been solved, at least.

  • ananda8
    ananda8 Member Posts: 1,418
    edited February 2010

    I would like to make a couple of comments but I am no expert on natural products or remedies.  Several pages back there was a note that walnuts are inflammatory.  This may be true.  However, I eat walnuts every day because the reduce the chance of colon cancer and breast cancer.

    http://www.sciencedaily.com/releases/2009/04/090421154325.htm

    I have read from several source about the need to balance Omega 3 and Omega 6.  This may not be true.  Western diets have too much Omega 6.  This link explains that we evolved with a ration of Omega 6 - Omega 3 of 1/1.  Our western diet gives us as much as 17/1.  There appears to be no reason to supplement with Omega 6.

    http://www.ncbi.nlm.nih.gov/pubmed/12442909

  • makingway
    makingway Member Posts: 465
    edited February 2010
    Yazmin-Anom, Effor...I am dealing with this 'phenomenon'  also. I am asking myself; is there any value in having people like that in my life. Really, what's the benefit? Not becoming isolated would be the only benefit. It's distressing to see the lack of consideration of our so called friends and family. A friend of mine and I had made tentative plans to get together. I didn't hear from her for over a month. I was kinda hurt. I talked to this friend and told her I was upset that she hadn't called.  She explained to me that she suffers from depression and tends to isolates herself. Because of that conversation we are still friends. It clarified for me that she has her own 'issues' to deal with. Not everybody is justified in behaving this way. I say to those who are inconsiderate, "take a hike"!  I think the weak hearted need to be around whoever's on top-it makes them feel better about themselves.
  • Yazmin
    Yazmin Member Posts: 218
    edited February 2010
    Indeed, makingway: I was completely taken by surprise by this "phenomenon" as I  had no idea it even existed!
  • AnneW
    AnneW Member Posts: 612
    edited February 2010

    Fairy, I hope you get your Estriol soon. When I used it, it was my oncologist who prescribed it for me! He felt it was safer than pharmaceutical estradiol preparations. And, he sanctions my FemRing, which I use now. If I had been higher than Stage 1, he might not have.

    I don't think it's so much of a "God complex" when it comes to prescribing, but more of a CYA in this litigious society of ours. As a health care provider myself, I know that every prescription I write, no matter how seemingly innocuous, could result in a law suit. That said, it just takes a few minutes to have a discussion about risks, benefits, and potential side effects, and to understand that not all patients are created equally. There are some who really do their homework, and I'll acknowledge when they know more about a subject than I do. It doesn't mean I'll give them every prescription they want, but it does mean we can have a conversation.

    I hope you'll find someone soon who will hear you and understand you.

    Anne

  • Luna5
    Luna5 Member Posts: 532
    edited February 2010

    Before having surgical removal of a primary tumor, read the article

    www.lef.org/magazine/mag2009/dec2009_Preventing-Surgery-Induced-Cancer-Metastasis_01.htm  

    I think it is good to take your time asking questions and deciding on your treatment.

    I felt rushed and fortunately am happy with the decisions I made.  But, if the article mentioned above had been available and I had taken the time to read it...I would have asked more questions and possibly decided to follow the supplement suggestions before surgery.  I don't know if the findings would apply to a BMX or not...but if I were facing a decision to only cut out the tumor itself, I would want to consider the above-mentioned report.

  • Luna5
    Luna5 Member Posts: 532
    edited February 2010

    Sorry, just read through some more posts and discovered that Nan suggested the same article.

  • ananda8
    ananda8 Member Posts: 1,418
    edited February 2010

    Luna 5,

    This quote if from your link.

    "To illustrate, a study published in the British Journal of Cancer in 2001 compared the survival of women with breast cancer who had their tumors removed surgically, to the survival of women with breast cancer who did not have surgery. As expected, the findings established that surgery substantially improved survival in the early years.

    However, further analysis of the data determined that women who had surgery had a spike in their risk of death at eight years that was not evident in the group who did not have surgery.8 In their interpretation of the results, the authors of the study stated: 'A reasonable hypothesis to explain the observed patterns of the hazard functions [risk of cancer death] is to assume that...primary tumor removal may result in sudden acceleration of metastatic process...' "

    What is missing is any indication of actual survival rates.  I would like to see the percentage of say 100 women without surgery who died in the early years compared to 100 women who had surgery, developed metastases and died in the later years. As it is the article tells me nothing accept that someone has a hypothesis of what this all means.

    The definition of hypothesis is as follows:  1 a : an assumption or concession made for the sake of argument b : an interpretation of a practical situation or condition taken as the ground for action
    2 : a tentative assumption made in order to draw out and test its logical or empirical consequences.

    A great deal of testing, experimentation and analysis will have to be completed before I would turn down surgery.  I think you made the right decision in having surgery.

  • Luna5
    Luna5 Member Posts: 532
    edited February 2010

    Fairy, sorry no one will give you estriol.  If I had some, I would give it to you! :)

    I'm no expert on hormones, but here's a question.  Is it possible that you have done such a great job of getting rid of estrogen with all your running and supplements and cruciferous veggies and DIM, etc. that you have caused your estriol to go lower than necessary? 

    I know all these changes we are all doing is to lower the estradiol, but does it lower estriol also?

    Is it one of those situations where lowering the "bad" estrogen also lowers the "good" one?

    Do we know what the optimum estriol level is?

    What levels of Estriol, Estradiol, Progesterone and Testosterone are we shooting for?

    I remember reading in Somers' book that her hormones are tested every couple of weeks and that she supplements progesterone and some kind of estrogen (don't remember which) as needed. 

  • Luna5
    Luna5 Member Posts: 532
    edited February 2010

    Notself    Oh, I am not saying for one minute that I would turn down surgery.  Not only did I choose a mastectomy, but I lopped off the other perfectly good side too.  It got back at me though by having every complication possible and causing 4 extra surgeries and now post exchange that same prophy side needs another surgery to lift it to match the cancer side.  In 9 1/2 months I have had 6 breast surgeries, 2 oral surgeries and a Hysty/Ooph...

    So, I definitely chose surgery and would again.

    I'm just saying that for an excision of just a tumor, I might want to consider the supplement protocol they suggest before and after the surgery.  I would at least research that aspect of it a bunch and may still have to sometime depending on what my future holds. 

  • ananda8
    ananda8 Member Posts: 1,418
    edited February 2010

    Oh, goodness, you have been through a lot.

    I have heard of this "take out the tumor and more cancer comes" before.  I did try to research it and found no real research has been done. 

    If they are going to do research, the research will have to be done at the cellular level, then with mice for a long time before trials in humans.  I imagine that is because finding enough women to do a double blind study would be difficult.  Not many women would take the chance of death by foregoing surgery.  I'm not sure anyone would even fund such a study because of difficulty in controlling for cancer type and staging.  Just look at the staging differences on this thread.  At present all staging is done after surgery on the entire tumor.

    May you soon have six whole months without seeing a doctor.  And from now on may all your news be good news.

  • anondenet
    anondenet Member Posts: 261
    edited February 2010

    Our Patty is getting her scan today at 3 PM. Let's send her all our love and good thoughts.

  • seaotter
    seaotter Member Posts: 642
    edited February 2010

    Thanks sooooo much Kiss

    Patty

  • dlb823
    dlb823 Member Posts: 2,701
    edited February 2010

    Patty ~ Sending you all the positive energy I possibly can, along with prayers that everything is okay.  Big (((HUG))) to you.  I hope you can feel us surrounding you!    Deanna

  • hlth4513
    hlth4513 Member Posts: 161
    edited February 2010

    I'll be thinking of you, Patty!

    Beth

  • makingway
    makingway Member Posts: 465
    edited February 2010

    I'll be thinking of you Patty :)

  • Suzanne3131
    Suzanne3131 Member Posts: 2,000
    edited February 2010

    Saying a prayer for you, Patty, that your scan comes in clean and that you can finally feel some ease and comfort.  You have been through a lot.

  • PS73
    PS73 Member Posts: 171
    edited February 2010

    You have a lot of love and positive thoughts your way Patty!!  Thanks for the reminder Anom!

  • Yazmin
    Yazmin Member Posts: 218
    edited February 2010

    Good vibes being sent to Patty right now...

  • Merilee
    Merilee Member Posts: 734
    edited February 2010

    More positive light for Patty

  • Luna5
    Luna5 Member Posts: 532
    edited February 2010

    It is 2:57.  Prayer for Patty. 

  • fairy49
    fairy49 Member Posts: 536
    edited February 2010

    prayers for Patty!

  • geewhiz
    geewhiz Member Posts: 671
    edited February 2010

    Hi Ladies,

    I am a bit bleary eyed going through chemo right now. I am certain that this has been discussed ad nauseum on this forum, but there is so much to read through. I keep getting off into tangent threads. Then chemo fog makes me lose track of where I was!!!!

    Can anyone point me to some links, or tell me in a nutshell...after chemo and radiation --how to get hormones balanced? I am 43 with chemo induced amenorrhea a benign thyroid nodule that regular onc could care less about, but I think is a big part of the picture. 

    Thanks most sincerely!!!!!

    Patty, prayers and warm healing light to you right now.

  • seaotter
    seaotter Member Posts: 642
    edited February 2010

    Thanks all you absolutely wonderful ladies Kiss. As I was lying in the scan I did think of all of you! It went fine. I will feel better when I get the results. My tech was an older lady ( hell, she was my age!!!). I tried to read her after the scan but got nothing. I was watching to see if she was nicer after the scan than before because I'm sure if I was riddled with cancer she would be nicer. I could not read her at all. Oh, well just as well. I should find out the results by Friday.

    Right now I'm more worried about Meg (Ivorymom) than myself. I hope she doesn't mind but I copied what she wrote on the prayer thread. Here it is:

    Wonderful ladies, I am so grateful for the strength and grace you share daily.  You all have been a source of inspiration.  Earlier this month I "celebrated" my one-year cancerversary.  I then headed to my first post-BC routine MRI last week, expecting an all-clear.  Well, that didn't come.  There was a suspicious mass in my other/left breast, so I was rushed into US for a biopsy the same day.  I am still waiting for the report.  

    I was pretty upset that day, but since then, I've been pretty calm, all things considered.  If it's b9, of course I will be thrilled and relieved.  But if not, I know I have the inner strength and peace to get through it - again.  

    Thanks for including me in your prayers.  Blessings to you all.

    Please pray for her. I pm'd her but have not heard a thing.

    Love all you ladies sooooo much,

    Patty

  • dlb823
    dlb823 Member Posts: 2,701
    edited February 2010

    Patty ~  So glad your scan is done and behind you!  We all pray that everything will be totally clear.  And I'm still chuckling at your comment about your tech's age. 

    And thank you so much for sharing Meg's post.  I've noticed her absence, but figured she was just busy and doing well at moving on.  I had no idea she's been dealing with this scare.  Hopefully, the fact that she hasn't heard anything yet is good news.       Deanna

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