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  • PatMom
    PatMom Member Posts: 322
    edited May 2009

    makingway, CAM is an acronym for Complimentary and Alternative Medicine.  That would include diet and supplements and acupuncture and meditation and basically anything that helps you achieve wellness that isn't part of "mainstream" medicine.

    One of these days I'll remember to run spell check before posting!

  • vivre
    vivre Member Posts: 881
    edited May 2009

    Making Way-CAM is complementary alternative medicine, which is what we are all about her.We hope that some of the things that we discuss will be helpful to you. If you feel you have a pinched nerve, have you seen a chiropractor or massage therapist? They can do wonders. I had a lot of pain under my arm from the SNB a year later. The massage therapist was able to find the spot without me even showing her. She massage the area, and broke up the inflammation and the soreness went away.

    Stacey-could you explain how to do the hyperlink a little better? It still does not compute to me. I just stick to cut and paste, but is this kind of link easier?

  • mandy1313
    mandy1313 Member Posts: 978
    edited May 2009

    Hi.

    I see that a big discussion on the pros and cons of lymph node dissection has occured on this forum.  While any of us can give some information based on our experiences, I feel that it is wrong to act as if we are right and others are wrong. The reason I say this is because doctors themselves are only now beginning to re think axillary dissections and whether information from lymph nodes is needed and if so to what extent it is needed.  

    My original surgeon did an excisional biopsy that showed IDC.  After that she wanted to do a sentinal node biopsy which made sense to me and I was found to have an encapsulated cancer in one of the two lymph nodes.  She then wanted to do a full axillary dissection and the onc at my cancer center wanted it too (university of pennsylvania).   I then went to consult on chemo and a number of other things at Dana Farber Cancer Institute....one of the country's premier cancer centers.  The oncologist, surgeon, and radiation oncologist raised the possibility with me of not having an axillary dissection and  that it was possible to treat me fully without taking further lymph nodes---that they had other ways of staging cancer....KI67; oncotypes (yes even for positive node women), etc.  Naturally I wanted to avoid the morbidity that is related to lymph node removal so I read like a maniac and consulted with a doctor at MD Anderson in Texas.  He also felt that lymph node dissection would not change my treatment and could injure me.  All of the doctors I saw, including my penn oncologist, agree that within the next 20 years we probably  will not be doing lymph node dissections.  Axillary dissections have been used for over 100 years to stage cancer but now we have other tools that they did not have 100 years ago.  The doctors at my original cancer center agreed to do the re-excision without taking more lymph nodes.  

    Howver, based on my experience at three major cancer centers, I would say there is alot of room for discussion about whether taking lymph nodes is necessary or not. That is why I began by saying that I did not think that any of us should be didactic and insist that you should take the nodes or you should not take the nodes.     I don't think that any of us can presume to be more knowledgable about this then the very doctors doing the studies.  While we want to help our sisters on this thread, we should be careful to just explain our position and to give the reasons for the position; not to insist that we are right when the medical professionals I saw did not do "right or wrong" and merely discussed options. I was grateful that I was informed about the option not to have an axillary dissection and I chose not to have it. That was the right decision for me, but it might not be for someone else. 

    Best to all

    Mandy

  • vivre
    vivre Member Posts: 881
    edited May 2009

    Well said Mandy

  • AllieM22
    AllieM22 Member Posts: 188
    edited May 2009

    Thanks Mandy--good comment. Lots to read from everyone on this but I have to agree that not doing a SNB seems, to me, very foolish. It is critical to treatment to know whether cancer has spread to the lymph system b/c it is indicative if it has spread elsewhere in the body. I think at the time I was more anxious about how many nodes the surgeon would take than the lumpectomy itself! Luckily he only took 3 and they were clear. As Mandy mentioned, I would now have a discussion with the surgeon over how many more to take if they did come back as cancerous but I think I would want all the cancer they could identify out of my body. But I would want to discuss all the options with the drs. What is so hard about cancer is that largely there aren't easy, good choices--the treatments can have unwelcome side effects of their own and it's really hard to choose between two things, neither of which you want!

    On the comment on radiation--without wanting to incite anyone--I would caution anyone who is thinking about skipping radiation to look at studies on your own. There are many that show the positive effects of radiation on cancer--both recurrence and metastasis. You may be against the thought of it and the effects on the body but it has been shown to work, at least for some types of individuals...again everyone has to make their own decisions and what they can live with.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
    edited May 2009

    I agree.  Well said, Mandy.  

  • Munchy
    Munchy Member Posts: 59
    edited May 2009

    When I was first diagnosed, at least one of my lymph nodes was cancerous (my armpit lit up like a Christmas tree on the CAT scan).  Along with a very aggressive cancer type, I went with chemo first, along with a totally revamped diet and tons of supplements.  Since the lymph nodes were definitely involved, they wanted to to a complete axillary disection, but I pushed for a sentinal node procedure (since my original tumor had all but disappeared by that time.  The surgeon ended up taking 3 nodes (I was furious), and they were all clean!  Either the chemo or the eating plan/supplements had taken care of it.  I was so upset, but it was too late.  Now I have lymphedema in my right arm, hand and torso.

    Would I do it again?  I don't really know.  I personally know 3 people who have died from breast cancer.   One of these people refused to do part of the suggested treatment (radiation).  Would she have lived?  I'm trying real hard not to second guess this whole thing.  On the whole, I guess I'm happy that I fought this thing with every weapon available to me.  It's a personal decision.

  • Munchy
    Munchy Member Posts: 59
    edited May 2009

    oops, I meant they took 2 nodes... typo

  • FloridaLady
    FloridaLady Member Posts: 158
    edited May 2009

    Mandy,

    Yes, we hope this discussion will educate many because we all have had different journeys with our disease.  We are not telling anyone what to do...we are saying do your research.   We are discussing what research says to do? or not to do?  I respect anomdenet and her opinion. Again you brought up lymph dissection and not mapping. There is no proof that for early disease there is benefit for this procedure.  A lot of trial info posted in this area online. I see you have early disease and hormone positive. Both consider not to be aggressive disease.  It would make complete sense that it would have no value to your treatment plan.  That is why I was addressing the more aggressive diseases and the possible need for this procedure.

    Our discussion is to make other think about and researching treatment options by fully understand their disease and it's known pathology profile for recurrences.  Not all breast cancer have the same risk factor, recurrences rates or treatment options.  This also goes for CAM treatments.  Many show benefits for hormone positive disease you really have to do your research for the more aggressive disease. Research basal tumors the most aggressive of all tumor found. Ladies with this disease ( and me) are fighting this monster. We have no short cuts.We are fighting for months and maybe a few years of survival not just recurrence.

      Please ladies research lymph node mapping that is the current procedure most clinic do now.  Yes, if you have a lot of node involvement you will have them taken out...that is the whole point.

    Flalady

  • anondenet
    anondenet Member Posts: 261
    edited May 2009

     <</p>

    Mandee

    I will not apologize for documenting the evidence. If you can't handle it, that's your problem. It seems to be okay with you if the doctors report the identical evidence but when I report that evidence you think it's arrogant.

    There seems to be a prejudice at work, touting this wonderful cancer center, and this team of doctors. All they were doing is READING what I posted and passing it on to you. Somehow the doctors were able to veneer the exact same facts and get your approval.

    When are women going to stop resenting other women who are not deferential and speak the facts?

    <</p>

  • Alyad
    Alyad Member Posts: 174
    edited May 2009

    I agree wholeheartedly with Mandi's post- I do not think she was asking that anyone apologize or telling anyone that anything they presented was wrong, fact or theory. I also haven't seen anything that suggested that someone not have a sentinel node biopsy. The controversy seems to be whether knowing there is one node positive- should they go in and look for others- ie do a full ANLD. As it stands now- doing a SNB at the same time as surgery-they find cancer on the frozen section/touch prep- standard procedure is to keep digging and do the ALND. I think it might be a good practice to have the SNB done separately before surgery.

     Then we would have more time to do research all our options before commiting to a potentially life quality altering procedure. Also if you knew you had a positive node (or multiples)- and may or may not have rads- that can influenence reconstruction decisions.

    I had a smallish tumor 1.7cm, no sign of spread- I had every reason to hope that my SNB was negative. It came back as a false negative during my masectomy with TRAM reconstruction, when I woke up after surgery and ws told that, i was elated. So I just had the SNB, no futher dissection. The next day final pathology came back and turns out there was a 2.4mm spot of cancer. I was devastated. They had recommenended chemo for me even before the node due to my age (35) and a high Ki67 rate.I was terrified by the thought of chemo and I wanted to just have surgery and take tamoxifen and be done with any other treatment. The positive node convinced me to do chemo, and I'll probably do rads as well. At this point, I want to do everything I can to fight this- but as soon as it's through I'm making some major changes to my diet, and going through a major detox.

    I have to admit now, I am glad I had the false negative SNB bc it saved me from having the ANLD. I did a ton of research both before and after and was told plainly by my docs that its only value was diagnostic, not theraputic.

    I do want to state that for someone with a more advanced cancer- ie larger tumor- more clinically irregular nodes (ie palpable, showed up on scans, etc- that I think ALND is still warranted.) But I think eveyrone should have the right to make that decision for themselves. As Mandi stated, the docs themselves and the research is in a state of flux about whether its really necessary.

     The docs of course wanted me to do the ALND but I refused. For me- had I had it and they found more-radiation would have been automatic. I felt like having radiation seemed like less of a risk than having a full ALND. I know radiation has long term side effects too- but the thought of worrying about LE scared me more. It's also worth adding my TRAM blood supply had to be hooked up in my armpit which is not the norm and my PS would have to be brought back in to help to make sure the blood supply wasn't compromised. I already had nerve damage down the back of my arm from that procedure and was told if if I had the ANLD, my chances of LE were high.

    so that's my two cents. I don't think anyone is trying to attack anyone else, it seems like are a couple different issues being discussed- I think someone who has early stage ER+ BC like me is going to have a totally different point of view  than someone who has more advanced stage and TN. I can't begin to walk in someone elses shoes- I think this really is a decision everyone needs to make for themselves- I think if it were to become standard to have the SNB as a separate procedure it would be a good step.

    I went ahead and had immediate reconstruction, had I known rads was a possibility I might have delayed it.

  • PatMom
    PatMom Member Posts: 322
    edited May 2009

    Anom, I find your information about SNB and ANLD being strictly diagnostic and not treatment to be fascinating.  However, at this point in time for me, it is strictly an intellectual exercise since my surgery decisions are in the past. 

    This would make a very interesting topic in the surgery forum, or the lymphedema forum either of which is more likely to include women who are still at the point of making decisions about the type of surgery they will have. 

    Most of the women here have already made those decisions, and can't go back and change history.  We are trying to make the best decisions for ourselves going forward with the things that are in our control now.

    Some of what you seem to be hearing as dismissing your information may simply be an acknowledgment that we can't go back and make a different decision now about our own surgeries.  Perhaps presenting it to an audience that is still in the process of making those decisions will be more effective  and satisfying for you.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
    edited May 2009

    Anom, I think everyone here has been open to what you are saying, just open to both sides.  No one said you were arrogant.  it does matter to me that some doctors out there are in some cases not doing the full dissection.  And if its a "wonderful cancer center" that means something too.  if anything, Mandi was supporting your argument.  Not sure what you want out of this.  Not sure why you are so angry.

  • anondenet
    anondenet Member Posts: 261
    edited May 2009

    Member,

    Au contraire, I couldn't be happier, just sitting here waiting for the documentation for all those assertions you put forth. :)

    Not sure why you're characterizing my personality rather than focusing on the issue. 

  • Grace61
    Grace61 Member Posts: 23
    edited May 2009

    Hi Everyone,

    StaceyR ~ Thanks. A few simple steps produced wonderful results.
    If only BC issues could be solved as easily...... I am reading everything that has been posted and searching on my own as well. I will discuss this matter with my surgeon as I find it difficult to believe that she has no knowledge of it. I will honestly say that the thought of having my nodes removed has bothered me tremendously from the start but I lacked the data to put voice to feelings. I now know that I can have a discussion with my surgeon about the pros and cons sooner rather than later thanks to all of you.
    I have delayed my surgery for over a month since my dx trying to make the right choices and educate myself which has not been a popular choice. I am happy for the dialogue that is taking place and I thank everyone for taking the time to respond.
    I also want to add that everything I learn is passed on to my friends and family none of which have a dx.
    I am the first in my circle so this forum has had a profoud effect in improving the lifestyles and practices of quite a few families.
    Thank you from all of us......

    As Always,
    Grace

    "A friend is a person with whom I may be sincere. Before him I may think aloud."
    Ralph Waldo Emerson

  • havehope
    havehope Member Posts: 77
    edited May 2009

    I read someplace that DIM is good for pre-menopausal women only. Is this true?  I think it even said that once you reach menopause you have to stop taking the supplement. Wonder if anybody else heard about this?

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2009

    simvog ~  I'd be interested in where that info' came from.  Do you recall if it was an article specifically talking about DIM & bc, or just DIM in general?  DIM is used for reasons other than balancing estrogen post-bc, and in some of those other situations, it might not be necessary or appropriate to use it when estrogen levels are already low.  So, what you read would make sense to me in that context.   Deanna

  • fairy49
    fairy49 Member Posts: 536
    edited May 2009

    Maybe this may help........

    DIM and Women

    For women, estrogen is a good thing when metabolized correctly.  It improves  mood, memory, assists with overall function, and lowers the risk of breast and uterine cancer, all of which are associated with estrogen dominance, as mentioned above.  Furthermore, properly metabolized estrogen can also produce beneficial effects from testosterone which helps support moods, as well as libido and energy.

    In menstruating women, estrogen may not be metabolized due to many different factors, such as stress, diet, poor liver function, obesity, xenoestrogens from environmental chemicals, and pesticide residues in food.  DIM's conversion of unhealthy estrogen metabolites into the beneficial forms will not only help protect against hormone related cancers, it can also help with the symptoms associated with hormonal imbalance, including PMS,  as suggested by Dr. Zeligs.

    In premenopausal women, the first age-related hormonal imbalance involves a decreased production of progesterone.  This reduction in progesterone output during the second half of the menstrual cycle, can cause irregular periods and contribute to premenstrual mood disorders.  The "good estrogen" metabolites stimulate increased progesterone production from ovarian cells.  Hormonal imbalances in premenopausal women can also be attributed to the same factors as menstruating women listed above.

    Another cause of hormone imbalance in menstruating and premenopausal women is birth control pills.  Taking DIM can have a balancing effect benefiting disorders and symptoms associated with estrogen-progesterone imbalance, including but not limited to:

    In Menopausal women with prolonged exposure to Hormone Replacement Therapy (HRT), DIM can help decrease estrogen-related breast cancer and other estrogen related disorders.

    It was once believed that women who are menopausal/postmenopausal have low levels of estrogen.  However, this may no longer be the case.  While it may be true that women in this phase of life are no longer producing as much estrogen as they did in prior years, many are still remaining estrogen dominant due to the long term use of hormone replacement therapies, exposure to environmental estrogens, obesity, poor liver function, and declining progesterone production.

    DIM supplementation is an effective means to insure positive estrogen metabolism, especially for those who are or have used long term HRT, as it can provide a margin of safety while reducing the negative consequences of "bad" estrogen metabolites.

    DIM is generally recommended for those who are menstruating (early thirties), premenopausal (mid-thirties on) with high estrogen levels.  Menopausal women using HRT, as mentioned above can also use DIM to help counter balance the negative effects associated with this type of hormone therapy.

    Menopausal women who are not using HRT can use Myomin which is a Chinese herbal formula that can help reduce excess estrogen, as well.  This product is not as strong of a metabolizer as DIM and is often suggested for those who are menopausal to post-menopausal because they are not producing as much natural estrogen.

    Myomin and DIM can also be used safely by women in their twenties and thirties.  Because DIM has actions that differ from Myomin, many women who are not menopausal choose to take them both for a more aggressive approach. 

     
  • Annaswe
    Annaswe Member Posts: 5
    edited May 2009

    Please, can anyone explain what DIM is? I´m not so familier with English My daughter has Endometriosis and the doctor said she must take birth control pills but she really hates that. Me having BC I hate it too.

    Thanks,

    Anna

  • Springtime
    Springtime Member Posts: 3,372
    edited May 2009

    Warning...

    I find this fascinating, and wanted to pass on. I was inquiring to several online shops asking if their DIM had soy or not. The following I just wanted to share, as perhaps, a study in how rude can you be???

    -----------------

    Me: Comment: Does your product, DIM (Di-Indole Methane), have any ingredients from Soy or derived from Soy?

    -----------------

    Response:  the ingredients in our products are CLEARLY stated on our website. please just read them. all products list their ingredients. no, there is no soy in DIM. please go to www.youngagain.org and read Wacky Price Foundation under W. soy is good food and soy allergies almost unknown.
    best,
    roger

    -----------------------

    Me: Thanks Roger,

    Just checking. I am asking for a group of women with breast cancer (er+) and we must be very careful not to take soy.

    ------------------------ get this!!!--------------

     hi beverly,
    this is ridiculous. you're completely and totally
    misinformed. you cannot eat FAT. please do
    yourself a big favor and go find robert kradjian's
    book "Save Yourself from Breast Cancer" at the
    library. asian women who eat lots of soy foods
    have the lowest breast cancer rates in the world.
    live in the real world beverly.
    best,
    roger  youngagain.com

    ----------------------------------

    Just thought I would share. Good GRIEF!!!

    Spring.

  • EWB
    EWB Member Posts: 592
    edited May 2009

    ummm, where did the fat come from? Yes, asians have lower rates but because the research suggests that it's because they eat soy rich diets from early on. Changing to soy later in life may help but not the same.  Never mind the we already HAVE bc.... Any way, Mr Roger was not answering the rather simple question

  • Springtime
    Springtime Member Posts: 3,372
    edited May 2009

    The product actually does not have soy, but he's so RUDE!! I'll find another source. ugh!!!!

  • dlb823
    dlb823 Member Posts: 2,701
    edited May 2009

    OMG, Spring  -  And to think he's dispensing advice!  What a rude, antogonistic jerk!  I'm speechless at how he worded his 2nd email to you!!!!!!!!!!!!         Deanna

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 263
    edited May 2009

    Did you respond?

  • althea
    althea Member Posts: 506
    edited May 2009

    springtime, I hope you write back and let that roger know he's lost you as a customer and untold others because of the way he responded to you!  What a jerk!  Not only do we need to be concerned about soy as bc patients, we also need to be concerned about the way it dominates our food supply and the way so much of it grown in the USA is genetically modified. Wander up and down any grocery store aisle and see the labelling is purposely deceitful and then the list of ingredients on the back is in small print and often in a color combination very difficult to decipher.  THAT's the real world. 

    Methinks this roger doth protest too much.  I'd be suspicious the product's soy-free status. If there's really no soy in there, why did your inquiry strike such a nerve?  I'm looking at my bottle of coQ10 and it's not obvious on the ingredient list that there's any soy, yet underneath the list of ingredients, it says:  Contains soy.  

    It must be in the gelcap.  The 'other ingredients' are:  medium chain triglycerides,  phosphatidycholine, beeswax, rosmarinic acid, and ascorbyl palmitate.  Softgel consists of gelatin, glycerin and water. 

    My guess is the gelatin is derived from soybeans.  ....and if there's so few allergies to the point of being 'almost unknown', why would there be a requirement for labels to reveal that a product contains soy?   ...grill him some more springtime! 

  • Rosemary44
    Rosemary44 Member Posts: 272
    edited May 2009

    Spring,

    I do hope you give Roger a piece of our collective minds.  If you're not up to it, I'm available. 

    By the way, Asians enjoy more green tea then they eat soy.  So how do they research people who enjoy, amongst other anti-tumor foods such as rice (which has been found to have anti-tumor ingredients), tea, vegetables, and a little soy and then they give all the credit to soy?  

    Anna,

    DIM comes from vegetables.  Cruciferous vegetables:  broccoli, kale, cauliflower, etc.

    http://www.deliciousorganics.com/recipes/broccoliandcauliflower.htm

    One more thing, does Asia have Monsanto soy?  I'll bet not.  But we do.  I'll go further, the soy they use in research more than likely does not come from a Round-up farm.  Can we say the same?  What's in our soy?

  • althea
    althea Member Posts: 506
    edited May 2009

    Curiosity made me take a quick look at the rude guy's website.  Boy howdy, nothing like a field of poppies in full bloom to grace the home page of 'natural health'. 

  • Springtime
    Springtime Member Posts: 3,372
    edited May 2009

    Well, I waited a bit to write back, I was just so taken aback initially!! Here's what I said:

    ------------------------

    More complicated than you think.

    Rude rude rude.

    -------------------------

    And I blocked him from my email.

    I am just astounded that an online seller would be so rude to a potential customer!!! I guess it takes all kinds!!!!  I decided that best thing I could do was to say very little to him and share my experience with all of YOU!!! 

    Hopefully, this was the right thing to do!!! I still can't believe it!!! But now it makes me laugh and shake my head!!! unreal....

    Spring.

  • vivre
    vivre Member Posts: 881
    edited May 2009

    Althea-LOL, I just picture Dorothy in the land of Oz, spaced out on opium every time I see a field of poppies. What was that webdesigner thinking?

    Rosemary-Love your comment, monsanto soy! LOL That is so true. I still the reason our soy is toxic is because it is the most sprayed crop in the country.

    Did I ever post the article about soy lecithin? The stuff was actually a waste product that accumulated at the bottom of silos until they figured out that they could sell it. So now we have the junk in everything, and since it is from the bottom of the barrel, the toxic residue is concentrated. YUCK!! I wish they would get the crap out of my chocolate!

    Grace-good to see you are taking the time to make a decision you are confortable with. I sure wish I was as proactive as you are. Maybe then I would not have spent all this time kicking myself for all my over treatment. We had good insurance so I am sure that had NOTHING to do with putting me through all those expensive treatments. Yeah right.

  • vivre
    vivre Member Posts: 881
    edited May 2009

    Go to fullsize image

    I'm not sure if this image worked,  I have never been able to figure out how to post pictures, but I thought I would send you all a bouquet of lilacs. I have a row of them under my window and when I open the windows, the smell comes all through the house. I love it! Wish we had scratch and sniff!