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Topic: I Did It...No Further Conventional Treatment

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Jul 19, 2013 12:31PM

GlobalGirlyGirl wrote:

Yesterday was the day I told my MO that I'm not doing anything more. He was not mad but "saddened." He tried to convince me for about an hour.  He still thinks he can "chip away" at me with the Tamoxifen. He will be monitoring me every couple of months. I am his first breast cancer patient to turn down everything.

It was hard to do, and I cried like a baby last night. I'm not a crier. I hate how all these decisions have to be made so quickly. Dang, I spent more time deciding on the height of my granite backsplash. Smile  It is what it is.

My gut feeling says no more, so I'm listening to it.  I'm going alternative and not looking back. 

Onward and upward!

bipolarwithatwistofcancer.com "Sometimes life's hell. But hey! Whatever gets the marshmallows toasty." ~J. Andrew Helt Dx 5/21/2013, DCIS, Grade 2, ER+/PR+, HER2- Dx 5/21/2013, IDC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/17/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Jul 21, 2013 03:30PM NattyOnFrostyLake wrote:

GlobalGirlyGirl,

Unless your doctor is extremely inexperienced, he has had many breast cancer patients walk away after surgery.

They estimate 5%. Consider that (a) he may be lying to you or (b) the non adjuvant-taking patients just never came back to him. He may have wrongly assumed they went to another onc rather than a to naturopath who is following them.

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Jul 21, 2013 03:48PM Mardibra wrote:

5% is many?

IDC and DCIS. Lumpectomy/AND 10/21/11. Chemo 12/1 - 3/15. UMX 4/13/2012. Rads completed 7/3/12. DIEP reconstruction to begin Jan 2013. Dx 8/31/2011, IDC, 3cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2-
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Jul 21, 2013 04:11PM dogsandjogs wrote:

I told my onc I was quitting Aromasin and that my internist would do my blood tests and therefore I wouldn't be back. He left me a message that he wanted to discuss the matter further. I never called back. I bet a lot of doctors don't report the patients that leave for good.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Jul 21, 2013 04:14PM Lily55 wrote:

Five percent of thousands is many.......on this horrid journey we do need to trust ourselves too, after all we have lived with our bodies all our lives.......

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jul 21, 2013 04:14PM dogsandjogs wrote:

The onc would not discuss anything on the phone; I had to make an appointment. This really rubbed me the wrong way - why should I pay for another office visit?

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Jul 21, 2013 04:17PM chef127 wrote:

congratulations on making the hardest decision on how YOU will treat your body.

Do the Onco's really think that the only fight for BC is the harsh chemo and eradication of our estrogene? I really find that hard to believe, unless they don't really understand the human body. They are taught how to fight cancer in a pharma funded med school. A few chemo regimens to throw around. I turned down one (ACT) and they came up with another (CMF). There is no progress. Don't hold your breath for advancement.

Let the fight begin.

xox

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/3/2012 Breast
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Jul 21, 2013 04:44PM Lily55 wrote:

Cancer is not an illness, its an imbalance in our bodies that allows cells to grow when they should have received a stop signal, so do you focus on the out of control cells or their environment? I have yet to find a natural hormone balancer ....... Is DIM classified as a phytoestrogen?

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jul 21, 2013 09:18PM digger wrote:

Well if Natty says 5%, then it must be so.  Otherwise, not sure where this very precise statistic came from....

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Jul 21, 2013 09:53PM Mardibra wrote:

Chef - yes, that's exactly what onc's think! And, they have plenty of data to back it up. Alternatives? No data, really. So until there is science to prove alternatives work, your not going to get an onc "bless it". For the record, I don't buy into the big Parma conspiracy theories.

IDC and DCIS. Lumpectomy/AND 10/21/11. Chemo 12/1 - 3/15. UMX 4/13/2012. Rads completed 7/3/12. DIEP reconstruction to begin Jan 2013. Dx 8/31/2011, IDC, 3cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2-
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Jul 21, 2013 09:56PM Mardibra wrote:

Another point...

Chef - do you really believe that you understand the human body and it's mechanics better than trained doctors do?

IDC and DCIS. Lumpectomy/AND 10/21/11. Chemo 12/1 - 3/15. UMX 4/13/2012. Rads completed 7/3/12. DIEP reconstruction to begin Jan 2013. Dx 8/31/2011, IDC, 3cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2-
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Jul 22, 2013 02:46AM beacon800 wrote:

GlobalGirly, have you requested they do an Oncotype DX on your tumor?  This test tells how agressive the tumor is and how likely to recur(it's done on the tumor, not on you, so it's not an additional procedure on your body).  It's normally done in cases where chemo is borderline (stage 1 tumors over a certain size or some other types).  It tells those borderline cases if they need chemo or not.  They may not have done it on yours as they considered chemo a foregone conclusion.

If you know the oncotype dx score (lower is better) you have a idea how likely the thing is to come back.  If you know it's a higher score, you might rethink your decision about skipping chemo.  Anyhow it's worth asking your onc about this cause it might be useful info.

LCIS, PLCIS. Dx 7/24/2009, LCIS, Stage 0, 0/0 nodes, ER+/PR+, HER2-
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Jul 22, 2013 05:00AM - edited Jul 22, 2013 05:02AM by Racy

Just interested to know: for those who refuse conventional medication, it is usual for the onc to continue to oversee the case, as GlobalGirlyGirl has said her onc will do?

Dx 2010, ILC, 2cm, Stage IIA, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Jul 22, 2013 06:49AM chef127 wrote:

I never made a statement of FACT about Onco's or pharma. Or myself. Just ???????????? The Oncos are bound to the standard of care. Its concidered unethical and they face the risk of losing thier licence if they send you home without the SOC tx. That is all they're taught in med school, and the only thing insurance co's will cover. My way or the highway.

If the chemo works It was worth all the poison injected into your system. Maybe.  Some are left w permenant damage and other health issues, and after a few years we recur or get mets. More chemo. Is it chemo or enviorment, lifestyle, diet, genetics, etc,etc,etc. NO one has the answer. It's the Luck of the draw. A crap shoot either way...and thats a FACT.

I love and respect my MO. She respects my choices. but doesn't see my logic. She does watch me carefully inspite of my choices, even tho I'm not very profitable as a patient.

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/3/2012 Breast
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Jul 22, 2013 07:51AM NattyOnFrostyLake wrote:

It's so awkward when people feel they have to come here to defend their conventional treatment. Good for you! We wish you the best Smile

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Jul 22, 2013 09:23AM Dianarose wrote:

We all make choices that we feel are best for us. We are all trying to achieve the same goal. Until there is a cure there is no right or wrong choice. The outcome for everyone is different regardless of choice. I feel no need to defend my choices to anyone. They are mine. We all have our eye on the same prize which is to keep on living. If something is working for one it does not mean it will have the same results on someone else. Chemo did not work for me, so on to plan B. I am just thankful for choices.

6/10/13 mets to ovary now. Now mets. To peritoneal stage IV Dx 3/22/2012, ILC, Both breasts, 1cm, Stage IV, metastasized to bone/other, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 5/30/2012 CMF Radiation Therapy 12/2/2012 3DCRT: Breast, Lymph nodes Hormonal Therapy 8/9/2013 Aromasin (exemestane) Targeted Therapy
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Jul 22, 2013 09:30AM digger wrote:

So many differences in this particular forum would be avoided if posters just began with "in my opinion"  instead of stating, in bold "IT"S A FACT."  

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Jul 22, 2013 10:05AM jojo68 wrote:

I don't think anyone said anything was a FACT....Even if they had said it was their opinion, it still would have been attacked.

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum
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Jul 22, 2013 10:06AM jojo68 wrote:

GlobalGirl...GOOD FOR YOU!  It takes a brave heart to stand up for what you feel is right for YOU!  I declined all conventional as well after surgery and am now on supps and Dr. Wong's herbal protocol.

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum
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Jul 22, 2013 11:01AM chef127 wrote:

I did say any and all txs are a CRAP SHOOT thats a FACT. I never try to defend my choice, nor do I disagree with conv choices. What ever gets you through the dx and gives you confidence that you are doing the right thing. It angers me that the med practitioners don't give me a choice, b/c they don't have any choices.

Diana, I'm so very sorry that the chemo failed you. You know that. My heart really breaks when I hear about recur and mets after the fact. I hear it way too often. BC seems to be here to stay...I hope I'm wrong!

love and peace to ALL of us fighting this reality....xox

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/3/2012 Breast
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Jul 22, 2013 06:47PM Mardibra wrote:

Statistically, its not a crap shoot - there is a proven advantage.  Personally, it is.  Until there is a cure, that will remain true.  Im not defending any treatment options including my own.  Im just pointing out that "they say 5%" is a made up number.  Choose whatever treatment plan you like.  But, dont claim statistics that are not true.

Chef - my onc visits are pretty uneventful....refills on Tamoxifen, how are you feeling, any pain, symptoms, etc.  I assume if I had any symptoms, my onc would order scans and then take it from there.  When your not taking chemo or Tamoxifen what would you onc do?  Seriously, wouldnt a PCP be able to provide the same care?

IDC and DCIS. Lumpectomy/AND 10/21/11. Chemo 12/1 - 3/15. UMX 4/13/2012. Rads completed 7/3/12. DIEP reconstruction to begin Jan 2013. Dx 8/31/2011, IDC, 3cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2-
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Jul 22, 2013 06:58PM dogsandjogs wrote:

No, I don't see my onc since I quit Aromasin. My internist orders bloodwork so I really don't need the onc. One less bill, and one less hour spent in a waiting room.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Jul 22, 2013 07:28PM GlobalGirlyGirl wrote:

Thanks for the support, ladies. :-)

beacon800 - No. I'm pretty sure it was a foregone conclusion based on the size: 4.2 cm.

Mardibra - I'm not sure why you're posting here. Granted this is a public board, but I posted this on the Alternative Medicine Forum. I come here for support and to learn from like-minded people. Honestly, your condescending attitude toward chef127 is getting on my frickin' nerves.  

We all have cancer. We all are doing the best we can and what is right for us based on the information we're given. May we all find success with the treatment we choose.

bipolarwithatwistofcancer.com "Sometimes life's hell. But hey! Whatever gets the marshmallows toasty." ~J. Andrew Helt Dx 5/21/2013, DCIS, Grade 2, ER+/PR+, HER2- Dx 5/21/2013, IDC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/17/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Jul 22, 2013 07:28PM chef127 wrote:

My onco is there to check me for the real possibility of a recurrance, in which a MX would be in order, or if there is a new primary, Cut it out. If she finds mets I want to know. Will I treat mets with chemo? IDK..proberbly not. My oncodx score is a 28. Chances are the cancer will be back. She is the one who orders scans and does a really thorough breast exam and checks my blood work.  My pcp never feels my breasts. Not his thing. My onco understands my issue with chemo, but she still keeps a careful eye on me.Love that girl. and she gives good BExam.

I have other health issues and I don't want to add to the heavy load I'm carrying. My heart is strong and blood work is kicking ass. Leave them alone. For me, QOL is already compromised. I choose a gentler Tx to fight the BC.

I know the woman who choose to throw the kitchen sink and then some more at the CA have to be tough cookies. So am I. I also have a lot to live for, and I'm fighting too!

peace and love

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/3/2012 Breast
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Jul 22, 2013 07:46PM Mardibra wrote:

Global - why do you assume im not into alternatives?  Sorry if im getting on your "fricken nerves" but you can feel free to ignore me.  And take a valium...your getting upset over nothing.

Chef - thanks for the info.

IDC and DCIS. Lumpectomy/AND 10/21/11. Chemo 12/1 - 3/15. UMX 4/13/2012. Rads completed 7/3/12. DIEP reconstruction to begin Jan 2013. Dx 8/31/2011, IDC, 3cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2-
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Jul 22, 2013 07:53PM GlobalGirlyGirl wrote:

Mardibra - I guess condescension is your way of making yourself feel smart.  Congratulations, genius. And I prefer Percocet. If you have any of those, feel free to share. Tongue Out

bipolarwithatwistofcancer.com "Sometimes life's hell. But hey! Whatever gets the marshmallows toasty." ~J. Andrew Helt Dx 5/21/2013, DCIS, Grade 2, ER+/PR+, HER2- Dx 5/21/2013, IDC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/17/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Jul 22, 2013 07:59PM chef127 wrote:

Hey,

I'll have a perc too. I need a vacation!.........xox

Mardibra, Is that YOUR gorgeous Blue Eye.

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/3/2012 Breast
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Jul 22, 2013 08:50PM Mardibra wrote:

Hate percs...make me queasy. So no drugs to hand out. And yes, that is my blue eye.

IDC and DCIS. Lumpectomy/AND 10/21/11. Chemo 12/1 - 3/15. UMX 4/13/2012. Rads completed 7/3/12. DIEP reconstruction to begin Jan 2013. Dx 8/31/2011, IDC, 3cm, Stage IIIA, Grade 2, 7/10 nodes, ER+/PR+, HER2-
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Jul 23, 2013 01:32AM - edited Jul 23, 2013 01:50AM by jojo68

No offense, Matdibra but I don't really think that's your blue eye...I've seen other people on other forums using the exact same avatar!!! BUT, hey! ' don't get upset over that, its nothing!'...lol
And, I think I might have just choked on my melatonin (yes, I prefer percs as well..lol) when I read you might be into alternatives...split personality perhaps??//
Globalgirl..you crack me up! Xxoo Also, sometimes when we ignore the 'elephant in the room' they might just thomp on back to their side of the jungle...if ya get my drift. p>

2012 Stage 3 Lobular Er+/Pr+/her-/Grade 2 7 nodes +/2014 marrow mets/2018 Mets to Bones/ovaries and peritoneum
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Jul 23, 2013 05:33AM Lily55 wrote:

We have enough hassle lets not fight here, we are all different.......

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Jul 23, 2013 01:35PM GlobalGirlyGirl wrote:

Lily55 - We're all different, definitely. What I don't like are the conventional people coming on the alternative forum finding "fault" with our choices and opinions.

Mardibra - You stated,  "Statistically it's not a crap shoot - there is a proven advantage." Actually, there isn't an advantage considering there has been no comparison.  Until a specific conventional protocol is tested against a specific alternative protocol, a "proven advantage" is non-existent.

Bottom line, this was a hard decision for me - which is why I posted it on this forum. I didn't even post it on the Complementary Medicine forum. We don't get much support in the medical community. My oncologist was "saddened." My nurse navigator treats me a little different now. It's a terribly difficult place to be. My emotions have been all over the place with this. From relief that I made a decision to crying uncontrollably because I feel alone finding what will work for me.

It really would be "easier" for me to say yes to everything, trust that the treatments will work, hope for the best, and pray that the side effects will be minimal. BTW, I'm not saying that chemo and rads are easy. I, like others here on the alternative forum, are taking the "road less traveled," which by definition can become quite lonely.

This is where I'm coming from, and I apologize if I was harsh.

bipolarwithatwistofcancer.com "Sometimes life's hell. But hey! Whatever gets the marshmallows toasty." ~J. Andrew Helt Dx 5/21/2013, DCIS, Grade 2, ER+/PR+, HER2- Dx 5/21/2013, IDC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 6/17/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel

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