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Topic: My choice--refusing 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: Jan 24, 2017 10:34AM - edited Jan 27, 2017 10:00PM by Monetswaterlillies

Monetswaterlillies wrote:

Hi everyone,

My post won't be too popular but I'm entitled to feel the way I do--to fight cancer or not. Im 50 and recently dx with IDC. Clinical staging is in the works but regardless of the results, I just don't care to treat it. I have my reasons, and would like to talk with others who feel similar feelings.

Thanks so much, everyone.


Dx 1/20/2017, IDC, Right, Grade 1, ER+/PR+, HER2-
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Mar 9, 2019 03:42PM santabarbarian wrote:

JoE777 I had the same thought

pCR after neoadjuvant chemo Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Mar 9, 2019 09:58PM april1964 wrote:

Steve Jobs didn’t have pancreatic cancer. He had Neuroendocrine Cancer of the pancreas... completely different type of cancer that is very rare. Aretha Franklin had the same thing.


oncotype 18 Dx IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 10, 2019 06:26AM edwards750 wrote:

Okay April. My point was he didn’t seek conventional treatment initially. His call of course but probably cost him his life.

Diane

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Mar 10, 2019 07:16AM april1964 wrote:

I agree with you, Diane...he made a colossal mistake.



oncotype 18 Dx IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 10, 2019 08:37AM JoE777 wrote:

Go to types of pancreatic cancer and you'll find Two types. Job'cancer falls into one of those. It's like explaining I have breast cancer in my spine for those who think it's just bone cancer

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/4/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Mar 12, 2019 09:01AM - edited Mar 12, 2019 09:03AM by bluepearl

People makes choices and that's it. Whether they make them on good informational sources or not, usually doesn't matter. If they are making the decision for someone else...different matter....and if they are submitting it as a "cure", different matter. My cousin chose the natural way and died. My girlfriend chose the natural way and is still alive 13 years later. A grade 1, hormone positive tumour with no nodes pretty much has a good diagnosis regardless. I wouldn't say the same of someone who had a stage 3 triple negative...but their choice. With triple negative, it is likely you will revisit the disease in greater likelihood if you don't treat it than if you do conventional treatments.... Good luck to all! It is a crappy disease.

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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Mar 13, 2019 05:49AM dtad wrote:

blue pearl...totally agree!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 13, 2019 06:59AM Jons_girl wrote:

does anyone here take black cohosh on a regular basis? This study was very interesting!! I’d love to reduce my estrogen/progesterone dominance! And black cohosh seems to do that if I’m reading the study correctly there are other studies too I believe I saw

Brand new 2019 stud

https://www.ncbi.nlm.nih.gov/m/pubmed/30858726/

Here is another study from 2018:

https://www.ncbi.nlm.nih.gov/m/pubmed/29403307/?i=2&from=/30858726/related

Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 13, 2019 06:00PM Salamandra wrote:

HI Jons_girl,

That's really interesting. I know that tests on cells are only the first step and they need to do actual impact on disease to really understand the impact and recommend dosing. But it makes me curious about trying it.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 13, 2019 10:40PM Jons_girl wrote:

yes it makes me very curious too! It sure seems like it affects cancer. And I think women take it during menopause for less hormone issues.


Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 15, 2019 06:48PM momkidsgrandkids38 wrote:

Hello all, I'm new to the form and I am considering alternative medicine. I was diagnosed in September 2018 with reoccurrence of stage 4 metastatic TNBC. I accepted the conventional method and started oral chemo (xeloda). In March 2019 I did my routine PET and CT scan, results came back increased disease activity, so of course the chemo wasn't working.

This journey started for me in 2016, I was initially diagnosed with IDC stage 2 TNBC, 2CM left breast. I've had a lumpectomy, lymph node dissection twice, bilateral mastectomy, and radiation. Intial treatments were chemo (AC/TAXOL) and radiation 5 days for 5 unfortunately it was no effective.

Here I am now March of 2018 I have a spot in my lower right lung I have lesion in my right chest area and the xeloda isn't working. My oncologist took me off the xeloda and wants to start intravenous chemo with immunotherapy. I am choosing against conventional medication all together. I am 46 years old. I have allowed them to subject my body with all of this poison why not allow my body to have a winning shot at infusing nutritional things. I have found a hospital over in Mexico and i will begin a different method of treatments. I am comfortable with my decision I have researched it, spoken to my God, and shared with my family my friends. My new journey begins March 20th I hope to keep you all abreast of my success and I wish you all the best in each of your individual journeys as well.


Madeline

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Mar 16, 2019 10:16AM - edited Mar 16, 2019 06:36PM by Marymc86

All the best to you, Madeline. I think I'd choose the same. Good luck

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/24/2018
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Mar 16, 2019 11:17AM Salamandra wrote:

momkidsgrandkids38, sorry you have to deal with this and wishing you all the best!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 16, 2019 01:55PM mastergardener wrote:

Hi, I am new to this site. Just had a lumpectomy. I wonder if there are other sites as suggested by Radgal for women who only want a lumpectomy or no treatment at all. I am stage 1, grade 1 invasive ductal cancer. Many thanks.

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Mar 16, 2019 07:37PM Jons_girl wrote:

master gardener welcome. I’m not seeing the post your referencing. Radgal?

I was same stage and grade as you. I also had lumpectomy. 2017. IDC


Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 17, 2019 06:19AM edwards750 wrote:

I’m so sorry Madeline. I don’t blame you either for your decision to go the alternative route. Good grief it’s not like the conventional methods were working. BC is such an insidious disease. Damned if you do and damned if you don’t. There is zero chance I would continue with those poisonous infusions that corrupt your body and by the way didn’t work the first go around.

Good luck with your new plan. I am praying it works for you.

Diane

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Mar 18, 2019 08:01AM spratt5 wrote:

Just recently diagnosed with BC. Meet with a surgeon on Wednesday. I feel strongly against not having chemo, radiation, hormone treatments, or any conventional drugs for treatment. I just want to get rid of the cancer tumor(s) with a lumpectomy or mastectomy. I know my body and the long term side effects associated with these conventional treatments will have a permanent impact on my body. The quality of life that I will have with just surgery and alternative treatments will be much higher than living with the long term side effects of being treated with these conventional drugs and treatments. Has anyone here been in or is currently in my shoes and can share their experience or give advice? Thanks in advance

Dx 3/2019, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (IHC)
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Mar 18, 2019 08:16AM - edited Mar 18, 2019 08:19AM by Jons_girl

spratt5

Yes I only had surgery. No rad. No med. chemo for my tumor wasn't needed because of low grade and low stage and low proliferation/growth rate.

My stage and grade are different than yrs but I’m doing well so far

Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 18, 2019 08:24AM spratt5 wrote:

Thank you Jonsgirl for sharing your experience. How are you doing now? Are you using alternative treatment, diets, etc. at this time to decrease your chances of cancer?

Dx 3/2019, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (IHC)
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Mar 18, 2019 09:01AM - edited Mar 18, 2019 09:05AM by santabarbarian

spratt,

The thing we all must weigh is our chance of recurrence or death vs our chance of long term problems from the chemo (or any medical treatment). There are more-gnarly and less-gnarly chemos; as well, more and less gnarly cancers.... There are different formulations (brand name & generics) of the various hormone drugs. So "chemo" is a lot of possible courses of action for any given person.

I made it very clear to my MO that I did *not* want him to save my life only to leave me with heart problems or other chronic health nightmares. I wanted to live my normal life on the other side of chemo. I am athletic and would hate to be chair bound or a chronic user of medical services. He picked a different chemo than the "beaten track" for TNBC because he listened to me and my vision of things.

I did a ton of complimentary efforts to boost my immune system, help the chemo work, and reduce my SEs--- and they were apparently very effective. I lost my hair but it grew back rapidly. Chemo was no picnic, but I have had no lingering pain or other side effects. Never lost a fingernail, never threw up. No neuropathy. Basically I had a one-week yucky flu 6 times, with 2 week breaks between each bad week, and some no-fun anemia by the end that has now resolved. I was a challenging patient who asked a lot of questions, made demands, and challenged conventions. I kept my level 1 & 2 nodes by being an informed consumer! I am so glad I did this. I am also glad I did chemo. It took me from the 30th percentile to the 90th percentile of being around and cancer free in 5 years.

The grade 3, Stage 2B cancer I was diagnosed with has very poor survival stats, and a somewhat poor rate of complete cure from chemo, too... but I knew that surgery alone (even MX) would not have gotten rid of it and I would be likely to die rapidly... The chemo he suggested was my shot to live AND keep my breast, and is not associated with horrid long term SEs. So that convinced me it was my best option. I took rads, too, even after getting a pCR, because it took me from 85% likely to live a long life, never bothered again by cancer, to 95%. But if it had been 85% to 87%, I might have skipped it...

I think it's perfectly valid to say "no" to therapies, but it's important to look at specific recommendations, and the specific stats for them, as you decide.

pCR after neoadjuvant chemo Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Mar 18, 2019 09:13AM Moderators wrote:

Dear spratt5,

Welcome to the BCO community. We are glad that you reached out to our members and it looks like you have already received some support and responses to your question. Let us know if there is anything we can offer to help you find your way around the boards and connect with others.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 18, 2019 11:27AM Jons_girl wrote:

Spratt5:

I am doing well so far. I will be 2 yr post cancer this may. I was living a relatively healthy life prior to cancer. No drinking, no smoking, no drugs. I was eating pretty much plant based diet. We live on a farm so lots of exercise here and fresh air/sun (when it is out). Since my cancer dx I have been adding in some intermittant fasting. And trying to eat mostly unrefined whole plant foods. Also I believe I was low in magnesium....have been spraying magnesium oil on my feet before going to bed and sleep very very well! It is amazing stuff. Not saying magnesium has anything to do with my cancer...but it is something that helps me sleep. =)

When I got cancer I was very surprised....because I WAS healthy and in great shape. But really the environment and stress and who knows what else can play into getting cancer. Nobody really knows why people get cancer. So we just do the best we can to live as clean and healthy lives post cancer as we can. At least that is my philosophy.

We are here to support your journey! I am thankful we have this forum for support! Sending a hug yr way!


Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 7/5/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 18, 2019 02:36PM Salamandra wrote:

Hi Spratt5,

Some things to maybe keep in mind, although I did do the conventional treatment route.

Generally, if doctors know you are unwilling to have radiation, they will recommend mastectomy rather than lumpectomy. Lumpectomy with radiation is as good as mastectomy for survival and recurrence, but lumpectomy without radiation is not.

Doctors send tumors for genomic testing (oncotype or mammaprint) to see whether the statistical benefit of chemo is worth the risk. If you know for sure you don't want chemo, you don't have to approve the testing. On the other hand, if you tested and came out low, it might help with peace of mind and also placate the doctors about no chemo.

You have full power to consent or deny any treatments. Knowing this, it may be worthwhile to hear the doctors out on the treatments, and to seek second opinions. Permanent effects from radiation and hormone treatment are unlikely, and there are ways to minimize the risk. You might find a place that is able/willing to do very targeted intraoperative radiation during surgery, for example, or prone radiation, or proton radiation. You could work with a doctor on starting on low dose tamoxifen, and experimenting with going up only so far as you don't feel any side effects. If the doctor understands that no treatment at all is your default option, the right doctor will be willing to work with you on alternatives even if they do not meet the current 'standard of care'. Hearing the doctors out does NOT commit you to anything, you always retain your power. But it can be helpful for feeling as informed as possible.

It is really helpful to have an advocate there with you who can play the bad guy to the doctor, or step in when you need a moment, or ask questions you might not have thought of. If you have a friend who is supportive of your approach and that you trust to bring with you and be a good communicator, that seems like a good idea.

Be careful of quacks. A lot of people in the market for alternative treatment are in vulnerable places, and there are plenty of people ready to make a profit off of them. Bring your skeptical mind to alternative treatments as well.

It's always important to find doctors you feel rapport with, confidence in, and trust. But I think it may be even more so for the path you want to take. Seek out second opinions until you find someone you want to work with who will work with you on your terms.

Something to think about now might be whether you want to have your lymph nodes biopsied/removed or not. The purpose is usually to assess how aggressive the cancer is and whether it has spread to lymph nodes yet. If they find that it has, they are likely to recommend either removing all your lymph nodes to make sure to get those cancer cells out as well, or radiating the area. Both have proven equally effective in terms of preventing recurrence, and radiation seems to carry less risk. If you knew you were opposed to operation/radiation on your lymph nodes, you may not want the sentinel lymph node biopsy. On the other hand, if you knew you would prefer to remove the lymph nodes, you can ask them to remove all of them if any of them seem cancerous during the operation, so you only have one operation. But in that case, you want to make sure you understand the risks of axillary node dissection (what that procedure is called) and consent to it before you go under.

Best of luck!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 18, 2019 05:23PM Meow13 wrote:

I refused chemo 7 years ago, my oncodx score of 34 said chemo needed. Instead I chose 4 years AI drugs. Not willing to risk damage to maybekill a few cancer cells. I have been NED ever since. Sometimes you know how to treat better than anyone else.

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Mar 19, 2019 05:17AM dtad wrote:

Hi everyone...I only had a BMX with no other treatments. NED 4 years. So far so good! Its a very personal decision. My only advice would be do your homework!

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 19, 2019 05:24AM spratt5 wrote:

Thank you so much! I'm so happy that this resource is here for me and others who are or have been diagnosed with BC.

Dx 3/2019, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (IHC)
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Mar 19, 2019 01:14PM ssteger wrote:

Madeline, I wish you all the best.

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Mar 22, 2019 03:57AM spratt5 wrote:

Best wishes Madeline! Thank you for sharing your experience here. Please keep up posted on your journey <3

Dx 3/2019, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2- (IHC)
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Mar 23, 2019 08:25PM secondchancetoo wrote:

Spratt 5,

I have had breast cancer twice. The first time it was ER and PR +, the second essentially triple negative, ( very small PR+). I have had a mastectomy each time with no other treatment. I refused to meet with oncologists, because I knew that I had no interest in what they had on offer.

I am 7 years out from the first diagnosis, nearly 3 years from the second. I have no regrets. I have made peace with my decision regardless of the outcome. I always choose quality of life over quantity. I feel great, I do worry about any symptoms that present themselves, but, who doesn't after breast cancer has touched your life?

My best to you. I honestly believe that there are many of us treatment " refusers" out there, we are just not as vocal

Dx 12/13/2011, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/1/2012 Mastectomy: Left Surgery 4/15/2016 Mastectomy: Right Dx 4/20/2016, IDC, Right, 1cm, Stage IB, Grade 3, 0/2 nodes, ER-/PR+, HER2-
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Mar 23, 2019 08:30PM Meow13 wrote:

I took AI drugs because I didn't think they would affect my health. I don't think I would do it again, kind of wish I just did the surgery only.

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