Need help from all of you brave women!!! Questions to ask

TV1156
TV1156 Member Posts: 14
edited June 2014 in Alternative Medicine

I was diagnosed on 2/21/1 with stage 2 invasive ducal carcinoma of the left breast, estrogen and progesterone positive, HER2 negative and BRCA 2 positive. I had a double mastectomy on 4/12/13. Today I'm meeting with my oncologist to find out the results of the sentinel biopsy for the 3 lymph nodes that were removed. When this started I swore I would go the alternative route but after seeing the success that my younger sister had 2 years with the same diagnosis I'm starting to have second thoughts.



Anyone have any positive results with the alternative option?



What's the best way to talk to my dr about my desire to try alternative therapy before opting for the traditional route?



Anyone hear of any clinical trials at memorial sloan kettering that are worth asking about?



Thank you ladies for any and all advice.

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Comments

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    What alternative route are you interested in most?

    I HIGHLY recommend joining the Cancercured and breastcancerthinktank groups on yahoo....I have learned so much.  There are doctors and women just like you and me who have done tons of research!

  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    I think you ought to think through carefully why you want to go alternative and discuss those concerns with your onc. What kind of treatment did your sister have?

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    I think she needs to think carefully on BOTH alternative and conventional routes...I have known people who have done well on both sides!  It is a very personal decision.  I have decided to go alternative after much research and self reflection.  I did do surgery.

    TV1156, if you would like to have a private conversation, you can PM me!  Lots to think about and consider...don't rush.

  • madpeacock
    madpeacock Member Posts: 369
    edited April 2013

    It is a personal decision, but you have to educate yourself first. I also suggest breastcancerchoices.org. LOTS of good info on making decisions about conventional therapy, how alternatives can work with it or alone, and nutritional/supplemental therapies that can improve your overall health, making hopefully keeping the BC away easier. That said, obviously there are no guarantees either way, but the fact that you HAVE choices makes it important to learn everything you can about them. 

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    Well said, Peacock!  I also can vouche for breastcancerchoices.org

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

    Not sure i would trust a site that sells supplements.  They would likely say anything to sell more product.  

  • madpeacock
    madpeacock Member Posts: 369
    edited April 2013

    Mardibra - I take everything I read with a grain of unprocessed celtic sea salt... Tongue Out The same type of info can be found on other sites that don't sell supplements, so I believe there is truth in it. I just particularly like this one (and recommend it) because all of the info is in one place and not scattered across multiple sites.  

  • pupmom
    pupmom Member Posts: 5,068
    edited April 2013

    Good point Mardibra. I also don't understand the militancy of some alternative folks. They disparage the medical community and FDA, while also demanding their promotion of therapies that are not proven to be safe and effective for the general public. Everybody can pull some anecdotal evidence out of a hat, but for me to feel secure in treatment choices, I need science based evidence, i.e. sound clinical trials. Joe, nobody cares what you take for your cancer, as long as it is legal, as Mardibra says, but please don't try to promote unproven or even dangerous treatments down the throats of vulnerable women.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    mardibra...Not sure I would trust my oncologist who sells chemo at $20,000 a patient...and, they get a kickbackSmile

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    Again....show me a study that proves chemo works.

    I have seen testimonials that it works and I have seen testimonials that alternative works....everything is a testimonial.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    yorkie...and, I don't understand the militancy of SOME, (not all) of the conventional folks who are so blinded...

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    I find it humorous that some people just blindly trust the FDA who promotes (and makes huge profits off of) aspartame, GMOs etc etc

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

    that site also claims that root canals can cause breat cancer.  we have had this discussion before...where is the proof of that.  i have done a lot of research on that topic and have found nothing.

  • pupmom
    pupmom Member Posts: 5,068
    edited April 2013

    What are we blinded by, Joe? If an alternative treatment is subjected to clinical trial, and proven to be effective, I'm all for it. I just need science based evidence. Btw, I never had chemo due to a low Oncotype Score. This is despite having 2 positive nodes. If my oncologist were into ordering chemo for profit, she certainly could have done so in my case and I would have been none the wiser. (In fact, several women on this board have even argued with me that I should have demanded chemo due to the node issue.) But, instead, my onc went by the latest science based evidence that with a low grade tumor and low Oncotype Score I would not benefit from chemo. That is not the behavior of somebody in it for the money. So, I respectfully disagree with your premise that there is a conspiracy by the medical profession and big Pharma to push chemo on patients for profit.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    Nobody knows what causes cancer...hello.

    Could be a combo of many things.  infections, such as root canals, can open the doors for cancer and many other illnesses.  FDA makes crazy claims as well...and, I don't feel that site is saying that root canals solely cause cancer anyways.  that being said, I had a HUGE abscess in my tooth that was on my breastcancer line from my tooth to the breast...2 years before my diagnosis.  I had this abscess for 5 years...who knows.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    Mardibra, if you are SO against alternatives, then why do you peruse the alternative forums? Of course, it is a free country...but, I wonder if it has your curiosity peaked???

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    I never said it is all a conspiracy for profit...is it a huge profit???  OF COURSE!  Which surprises me that more of you don't raise an eyebrow...of course, not every onc is out to get their kickback...they know what is taught, generally, in medical school which is standard of care.  Big Pharma/FDA are the ones who fund the studies, in general, that are taught and supported in med school.  Alternative clinics do not have the huge huge amount of money and conveniences to fund such studies that FDA/big pharma fund.  also, there are many alternative practitioners that are not money hungry as well...I have a friend who has had great success with Dr. Gonzalez in NYC...she cannot always afford his supplements and/or visits...he waives the fees for her continuously...definitely doesn';t sound like a snake artist to me.

    Also, the OP had asked for some info from us alternative ladies on the alternative site....why are you arguing here?  if she wanted info from the conventional minded, she would have asked on your thread!  The disclaimer at the top of the alternative threads do say to not pass judgement on alternatives, which is what you both are trying to do...I am trying to give her the info she requested!

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    I have better ways to spend my valuable time, as I am sure the both of you do as well....If the OP wants anymore info, she is invited to PM me...Kiss

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

    im not arguing...just stating opinion and fact.  im not juding...do whatever you like.  but, do it with all the facts.

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

    "big supplement" makes plenty of $$ too...and NO regulation.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    @TV1156...I Privated messaged you...Kiss

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

    Why PM? Something to hide?

  • TV1156
    TV1156 Member Posts: 14
    edited April 2013

    Thanks everyone for your suggestions. I'm going to continue to do my research and talk to a few different medical oncologists. My pathology report came back positive for the most part. They removed 27 nodes and 1 showed cancer. Has anyone had a similar situation? What type of chemo did you do? I'm still very new to all of this so please excuse me ignorance if I use incorrect terminology etc... Thanks again everyone. :). Have a great day.

  • pupmom
    pupmom Member Posts: 5,068
    edited April 2013

    TV, depending on your age and if you are Her+, you might want to get the Oncotype DX test. It indicates if chemo will benefit you, based on your tumor's characteristics. Even with a low Oncotype score, if you are under 50, chemo is often recommended for node positive. If you are Her+ chemo will be recommended regardless. Best wishes!

  • TV1156
    TV1156 Member Posts: 14
    edited April 2013

    Hi yorkiemom,



    I'll be 44 in August. I'm HER2 negative. I keep hearing of women who underwent chemo without losing their hair. I'm trying to find out what type that is. This is all so confusing and overwhelming for someone who doesn't even like to take aspirin. Thanks

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    TV...Check into IPT chemo...much easier on the system...If you are interested in some of these alternatives, then PM me...otherwise you can ask about chemo on the 'non-alternative' threads here...this is just for alternatives on this thread...xxoo

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    @TV....If you are seriously interested in alternatives/complimentary treatments, you would get better responses, very informed responses from those Yahoo groups I posted!  many docs and many women who have put their cancers into remission for 10-20 years there using treatments such as IPT chemo/laetrile/iodine protocol/Hyperthermia and many more supplements and treatment modalities!  good luck in your decision!xxoo

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

    My last warning to you all - your not looking for a cure or treatment for strep throat.  We are dealing with CANCER!  Not something to be fooled around with unless you have a death wish.  So, choose what you like but please take care.

  • jojo68
    jojo68 Member Posts: 881
    edited April 2013

    Mardibra...you need to get off of your high horse...WTH is your problem?  Seriously....and, get off of the alternative threads if this all gets under your skin.

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

    I don't have a problem. But it seems that you do!



    Blessings

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