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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 01:34PM - edited Jan 28, 2017 01:00AM 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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Sep 23, 2018 03:01PM Apple2020 wrote:

Please count me in fine you find recent information regarding more "Alternative Medicines", I will do more research as well!

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Sep 23, 2018 06:52PM hrscience wrote:

that's where I am right now...just completed third surgery in 7 weeks! initial lumpectomy followed by 2 re-excisions to completely remove tumor and create clear margins. Told I was cancer free, but would still need to meet with oncologist. Oncologist was very helpful in going over my case; however recommended both chemo and radiation. NO!!!!!!! I chose quality of life over quantity of days...it's HOW you live, not how many days, in my opinion. Cannot endure side effects and treatment for nearly a year. Any feedback?

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Sep 24, 2018 08:16AM helenlouise wrote:

Hrscience, I decided to take the traditional treatment path and I am almost 10 months in from when I felt the lump and started my second round with cancer. The truth is I was not sick at all but after IV chemo, bilateral mastectomy, radiation and more chemo (oral) I am feeling the wear and tear of it all. I have struggled at times to find the quality of life. I know I will live with the effects of treatment for the rest of my life. I can appreciate your decision and wish you well. I have decided that if the effects of the oral chemo become debilitating I will cease treatment. I really want my life back, even if not for a long long time. Good luck to you.
2013 DCIS treatment lumpectomy x2 plus radiation. 2018 new IDC treatment Neo adjuvant chemotherapy. Surgery July 18. Radiation August through to October 2018. Xeloda till April 2019. Skin mets April 2019. Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 2/28/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 8/28/2018 Xeloda (capecitabine) Radiation Therapy 8/28/2018 Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL)
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Sep 24, 2018 11:02AM JoE777 wrote:

grscience, I'm not sure that any doctor can declare you cancer free at this stage of DX. That's why chemo and radiation. I'm assuming that your pathology report identified the type, stage and grade. My own journey was very easy the first round-lumpectomy, 16 rads, femara for 5 years. I stopped femara after 2 years. 5 years out I'm metastatic to lungs and back. Except for oral femara, kisqali, and radiation to the lower back for pain(easiest thing I ever did with no side effects) the disease is deceasing. I can now walk and resume many activities instead of bedridden and in a pain fog. My husband and I have discussed from the beginning that I will not persue treatment at the cost of quality, but short term discomfort has been a fair trade for restored life. You have nothing to lose to attempt treatment. You can stop anytime. I hope you'll give yourself time to think after this horrible shock before you make your final decision. That being said, every woman has to make a decision they're comfortable with and meets their criteria for quality. I wish you peace and comfort. Jo
Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 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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Sep 24, 2018 01:31PM - edited Sep 24, 2018 01:32PM by PurpleHair

Hi Monetswaterlillies, I love and support you on your journey. Your choice is honorable. Stay in your heart center and enjoy every moment of life. Cancer does not define us. We are so much more than a clump of mutated cells in our body. You can view my posts "Miracle 6 months after diagnosis".

I was diagnosed stage 2b with very aggressive (fast growing) cancer and I never once considered chemo because I just knew I could self heal. I honor other's choices because we all have different perspectives and unique journeys. The secret to my healing is self love. A very powerful spiritual practice. I also use natural therapies and am a big fan of ChrisBeatCancer.com

Anyway, 6 months after my diagnosis instead of metastasis and a doubling in size of my tumor like four different oncologists told me would happen. My tumor disappeared and my armpit lymph node shrunk by 30%. So I call it my miracle. Because I did a lot of energy work and visualization to release resistance to allowing healing to occur. There is so much resistance and negative emotions in the human body that is so deep. Very few people truly love themselves unconditionally. We all seem to feel we are not enough and have something to prove to the outside world. The reality is we are LOVE in action. We need do nothing but be who we are. Infinite and powerful. My love, encouragement and blessings to you on your healing journey.

Dx 3/8/2018, IDC, Left, 1cm, Stage IIB, Grade 3
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Sep 25, 2018 12:55PM PurpleHair wrote:

Thank you keri339, your story is wonderful news. I posted "Miracle 6 months of diagnosis". My tumor went away naturally too and the key was self love. Which is the last line of your post. Love yourself. Love all of yourself. It's a brave journey to our own hearts that brings about a transformation. A deep deep appreciation for life, and stepping into our power as divine souls embracing all of ourselves in sickness or health. The tumor disappearing is just the body following the mind. Where the mind goes the body follows. Going into the heart heals the mind, which heals the body.

Breast cancer is an invitation to do just that. Being present with our own hearts and letting go of the expectations and weight of the world allows the flow of universal energy to guide our lives to wholeness and healing. Just being you without anything to prove to anyone outside of yourself. That is true freedom. Blessings to you on your journey and keep shining the light into the darkness.

Have you ever read this book by Anita Moorjani called "Dying to Be Me: My Journey from Cancer, to Near Death, to True Healing"?

It's about another Radical Remission story, it's actually one of the most well documented cases of miraculous remission. I've met Anita in person in 2017 and she is very real and her truth an experiences moves the heart. Her message, very much like mine, is to just live life according to your own inner soul's promptings regardless of what messages are coming from society, friends, family and the world at large. Her motto is "go and live life fearlessly!" Your soul has your back, it really does.

Dr. Bruce Lipton provides the science behind how our beliefs, thoughts, emotions affect the energetic field in and around the body. This energy field informs our cells both negatively or positively depending on our projections into the field. That is why we are all very powerful creators. It's amazing stuff. Breathe that in.

I am energy sensitive. I don't see auras but I feel energy as vibration and sensations within my body. A lot of people are sensitive to energy, especially women. You can become more aware of your energy field by tuning into the heart area. The heart has a very strong energy vortex and it influences the entire body system. It really does. That's why the healing practice of self love always centers in the heart. If you breathe into the heart space you will start to sense your energy. Even if initially all you feel is the breath going in and out that is energy. Breath is energy. You are the breath. Without breath you don't exist. If you hold your breath or breathe really shallow all the time (stress will cause this breathing pattern) you restrict life force flow of energy into your body which will eventually cause illness in the body.

I believe my body began to clear the tumor when I had released all the stuck emotions within my energy field. Because I am energy sensitive I felt it streaming out of my core intensely. Other people might experience release of emotions like having a really good cry that racks your whole body and afterwards you feel lighter, it is still energy releasing. Even if you jump up and down and allow yourself to RAGE against the world. That is healing. That is releasing stuck energy. I encourage all to take this inner journey into the heart. Take a break from the world "out there" and be with yourself. Love yourself, love all of yourself. If there is resistance to this in any part of you, just that, say "I love and accept any part of me that doesn't want my love." I've gone deep enough to experience that resistance to love is a very real hurdle of dense stuck energy within the human experience. We frankly don't feel worthy of love, so say "I love and accept the part of me that doesn't feel worthy of love." You can't overcome resistance with force or judgement. Only unconditional love is powerful enough. Be patient and allow. Just your intention to release will start the process rolling. Humans are a play of both darkness and light. Use the light to love the dark back into the light. FORGIVE and LET GO of anything you encounter on your journey that restricts the flow of love. Having Breast Cancer is a very very high calling. It's not a curse or punishment. You are powerful. There is nothing wrong with you and you are not experiencing dumb luck. It is a divine tap on the shoulder, and invitation. The mind might resist and throw thoughts "this is woo woo, or I'm not powerful my life is in shambles, I'm don't know how or what to do about this or that, or little innocent child die of cancer all the time, if they don't deserve healing then who am I to think I can heal myself...blah blah, the resisting thoughts will flow. Like I said there is so much resistance stored in the human body, so many limiting thoughts and belief. Just love it all back into the heart. You are you. Your experience is all that matters. Leave the world out there and go within. Get to truly know yourself and start peeling away the onion layers so you get live freely and BE who you really are.

No matter what choices we make regarding our treatment plans (honor all choices) this practice of self love will help you heal. And if you practice this self love and letting go, inner peace is the reward. The mind is calm and present not always going off into anxiety about relapse or what ifs. If it does, you love it back into the heart again and again. Being present and in love with life is I feel the whole point to life. Where the mind goes the body follows. Our bodies all eventually expire. Breathe that in and accept that. How we live (in love or fear) is what counts. I am not against fear. Fear is part of the experience. It doesn't need to run our lives, so love fear, love it back into the heart, so your energy can be renewed thus regenerate the cells of the body.

Dx 3/8/2018, IDC, Left, 1cm, Stage IIB, Grade 3
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Oct 3, 2018 05:38PM Meow13 wrote:

After reading the link on untreated BC the history I am glad I had a mastectomy. I didn't feel comfortable leaving any discernible cancer behind. I didn't do the recommended chemo which could have lowered my risk from 23% to 11.5% of distant recurrence in ten years, with 5 years tamoxifen. I did take AI drugs for 4 years which probably lowered my 23% down. I am 7 years NED but still open to additional treatment. Really interested in CBD oil but finding the price a turn off.

Not sure I would do hormone therapy again.

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Oct 10, 2018 05:06AM PebblesV wrote:

Hi all - I just learned I have an oncotype DX of 21 and the risk of recurrence with just tamoxifen or tamoxifen plus chemo is EXACTLY THE SAME (13%). With that in mind, I’m considering refusing chemo as this report says that it would basically provide no benefit. My husband supports me but I feel my family (parents, sister) would push me to do chemo regardless. Thoughts? I do believe in the added benefits of nutrition and I did the surgery, am OK with any follow up radiation or hormone therapy needed. It’s just the chemo I’m very wary of and I’d do it of benefits were substantial but the oncotype says otherwise.

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 10, 2018 08:53AM Jons_girl wrote:

LORI:

I’m still learning a lot about Br cancer. I too only did surgery. Question for you. You had cribriform which I’m assuming is much different than what I had. I had IDC same as you with high percentage estrogen and progesterone positive. I was early stage too. I chose no med or radiation. My oncologist was fine with that as long as I continued diagnostics and saw him often to keep an eye on me

I am a healthy lifestyle person but upped the ante so to speak aftercancer. I’m fasting some and have lost about 15 lbs or so since cancer. Overall I feel much better!! So far all is good.

I’m wondering why they suggested you take chemo?? Sorry I don’t understand the difference between our cancers. My dr never suggested chemo. Sorry for the book.

I think it’s grear what yr doing with the changes to lifestyle. I believe in that as well.

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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Oct 10, 2018 09:14AM Jons_girl wrote:

moth those calculators you give links forpeople to refer to don’t work the greatest for people like myself. They are a good tool but don’t have tumors listed under a cm Also it doesn’t list not doing radiation because they assume everyone does it I guess

Wish they did more studies on women like myself

So not sure how accurate those calculators are for me? But the rate is very very low without hormone therapy which I’m thankful for. Just wish they’d consider women like myself in their tools.

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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Oct 10, 2018 10:24PM Marymc86 wrote:

PebblesIV,

My oncotype was 27. I chose to skip chemo even though it was highly recommended. I am a Health Educator and have lived as healthy a lifestyle as anyone could. I am otherwise very healthy and did not want to destroy all the "good" in my body to kill off the bad. I had surgery and radiation. My tumor was stage 1 and the surgeon said clean borders. No node involvement. So, I'm hoping whatever (I think stress) caused my immune system to let it's guard down will let up so my body cam resume keeping me healthy like it did for 54 years prior to diagnosis.

It is YOUR decision. Make the decision that you are at peace with.

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Oct 20, 2018 05:34PM 53nancy wrote:

Hello, everyone; just stopping in to catch up with things; can't stay long today, but just wanted to let you know you are not forgotten. Hugs.

Surgery 7/18/2017 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 8/16/2017, DCIS, Right, Stage 0, Grade 3, 0/0 nodes Dx 8/16/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (IHC) Radiation Therapy 11/20/2017 Whole-breast: Breast
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Oct 25, 2018 12:35PM PebblesV wrote:

marymc86 and others - thank you so much for the sage advice. Update - I am NOT doing chemo. Will start radiation Monday and take tamoxifen after (hormone therapy).

After my oncotype score came in at 21, the oncologist also said that he could not objectively recommend chemo as the oncotype showed there was no added benefit and he couldn’t introduce that extra toxicity into my system. So luckily he too read the report and results as we looked at it, and I asked how accurate those stats are and he said very accurate, it’s based on thousands on women who had a similar oncotype and the treatment they did and how effective. And for my oncotype of 21 it showed that those who did hormone therapy alone had the same result as those who didn’t chemo plus hormone therapy.

So I feel relieved now that I have the stats to back up the choice not to do chemo. He did say that because I’m “younger” some women to chemo anyways to throw everything they’ve got against the cancer, but my feeling is that I am throwing everything I’ve got against the cancer with the nutrition and lifestyle changes. All while keeping my immune system strong which also helps combat cancer.

@Jons_girl I’ve also lost 15 lbs since the diagnosis! Maybe if this is the catalyst to healthier living, one day we can look back on this and think it was not so bad in retrospect.

So helpful to have this board and know others who have chosen not to do chemo and are thriving.

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 25, 2018 07:35PM edwards750 wrote:

Not all oncologists are on the same page despite being provided with the same information and research. My oncologist didn’t believe in testing tumor markers because of false positives but others tested them regularly.

My oncologist was on the fence about my taking chemo so she ordered the Oncotype test. My score was low so I dodged chemo and had 33 radiation treatments instead. Much easier treatments. She also said women have been over treated for years. The Oncotype test has provided them with more information to determine treatment.

She also recommended I quit taking Tamoxifen after 5 years yet other oncologists recommended 10 years for patients despite having the same dx as me. Go figure. It’s just not a one size, fits all disease.

Diane

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Oct 30, 2018 07:21PM Marymc86 wrote:

Pebbles, I just happened to check in tonight. I'm glad you seem at peace with your decision. Even though I'm 55, my MO also put me in the "younger" group. Any other time I'd jump for joy at that. Lol

I did lumpectomy and radiation. Was at peace with my decision not to do chemo. However, I'm still shaky about not taking tamoxifen, but I am feeling like myself again. The fact that I haven't checked in with this group shows I'm not thinking about cancer as much now and that's a good feeling.

Having some shooting pains in my radiated breast, but not unbearable and not constant. Just hoping for no recurrence. Hoping the same for all of you!

Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Oct 31, 2018 05:38AM Jadedjo wrote:

Hello all,

I posted on here before way back at the beginning before surgery, etc.thought I would update. I was unsure at the time if I wanted to do any other treatment especially the chemo but at the time was more open to radiation and the hormonal therapy. Ya my experiences with the local medical community and the aftermath of the only treatment I did so far a double mastectomy cemented the not gonna happen. If I wasn't completely alone I might of considered it but I am completely alone with very little support.

So After much thinking,my experiences with the local cancercare medical professionals  before during and after my surgery(very little of it good),and many other factors including I am completely and utterly alone in this world and have no help to help me deal with the life altering side effects of all the treatments also the fact that the apt I live in would make things even more extremely difficult side effect wise.

 I have decided I am not doing anymore treatments other then the surgery I already had, lifestyle changes and exercise  no matter what my final pathology and oncotype results come back as. No chemo,radiation or tamoxifen. Although I was told radiation wasn't likely due to no node involvment so...there's that.

The idea of doing treatments like chemo and tamoxifen that with my super sensitive G.I tract that makes me physically ill with most medications and a central nervous system that has every side effect known to man and then some from medications making my life even more miserable then it already is to prolong a life I don't think is worth it and add little to no support. Well I have no significant other,no children and really pretty much no family for how little we interact. No one is gonna miss me when I'm gone so I made the choice I feel I can live with. I'm surprisingly ok with it. I thought I would be afraid of what's coming but I'm not.and I know what terminal cancer looks like in end stages. I researched some before saying I refuse to do more.Still didn't change my mind.

 I am well aware with this decision there's a good chance I won't live to see 50. I'm okay with that. It was a miserable,empty lonely  life and after this it's not going to get any better. I'm sick and tired of people telling me it will get better it hasn't gotten better its gotten worse after 15 years it's safe to say they were wrong.

.So ya in agreement with the original person who started this thread I am refusing any treatment from here on out for my own reasons.convincing the cancercare team is going to be the issue I think, they don't seem to be taking me seriously still talking about ports, and different versions of tamoxifen I could take until I find the one that best suits me and crap.

I just feel like "you just got to suffer through the months and years(tamoxifen) your on it and just live  with it so you can live longer" is not a good enough reason to do chemo and tamoxifen. That was actually what someone told me. I believe my response was "why should I have to,haven't I suffered enough my entire lifetime to this point in time and hasn't it all been for nothing because I managed to change nothing no matter how hard I tried and now things have gotten worse?"  

And so that's how it is. For some people in this world "throwing everything at it" isn't worth it. I don't have anybody to stick around for. The only things that would change my mind would have to occur through a miracle and there are no miracles here where I am concerned.

Best of luck to those on their own journeys no matter what paths they choose in their treatments.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 31, 2018 09:18AM - edited Oct 31, 2018 09:50AM by Jons_girl

pebblesv: yeah will be interesting to see if my weight loss kicks cancers butt and it never returns.

Jadedjo: I support you 110%! No matter what yr tumor size or node involvement. It's your choice! Yes the cancer treatment team that's been assigned to you...,they will not be fun to deal with. I completely understand that!! My onco dr has respected my decision to only have surgery (no tamoxifen no radiation)and ive chose to have diagnostics every 6 mo. They never saw my tumor on mammogram. I felt my tumor. Ultrasound saw my tumor. IVe chosen to have only ultrasound every 6 mo. May have MRI at some point too. My onco doc's Nursing team hasn't been fun to deal with on that (no mammon’s). They aren't kind. Sometimes downright rude and mean spirited.So I know and understand about having to stand up for a decision although I realize it's not quite the same decision you are dealing with

I support you!!❤️

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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Oct 31, 2018 09:52AM Jons_girl wrote:

also....wondering if there could be a connection to GI issues and breast cancer. I too have a crazy GI. Curious about whether there could be a connection. Wonder how many of us on this support group have or have had GI 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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Oct 31, 2018 05:49PM Jadedjo wrote:

Jons girl

That's actually a good question.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 1, 2018 12:44AM Meow13 wrote:

I think it is really important that your choice is made clear. No one can force you to do anything. For me, I would not do chemo. It took everything I had to get a mastectomy, thank god DIEP pretty much corrected it.

Cancer treatment is so terrible, cut, burn, poison. Totally desperate measures for a desperate disease. I hope to see this change in my lifetime.

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Nov 1, 2018 02:10AM - edited Nov 1, 2018 02:10AM by Jadedjo

Thanks.I'm told that radiation isn't needed and while they would push for chemo due to my age considering I'm early stage enough they wouldn't push it too hard.

I've agreed to talk to oncologist and discuss all the information and my concerns with them but I don't feel the risks of tamoxifen when I'm already on those  risk lists for other reasons (hereditary , complications from my chronic illnesses) is worth it to buy me a few more years I'm not even sure I want.

I will do my best to reduce my chances of reoccurrence with diet and exercise (once I'm allowed to do it again)hopefully able to lose enough weight that my fat is reduced  feeding cancer cells in my body.and after New Years I will be cutting as much sugar out of my diet as I can.

But I know not doing any hormonal therapy or chemo puts me at higher risk of reoccurrence and despite the fact they say it's my body, my decision the doctors don't even try to work with you on other alternatives to help reduce risk. I hope they find an alternative to chemo, poisoning your body doesn't just kill the bad cells it kills the good cells too.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 1, 2018 07:03AM Salamandra wrote:

I think people say all that stuff about 'things getting better' because it helps them not really think about the difficult things in life, both yours and theirs. The facile, 'think positive! things will get better!' is completely infuriating. It's all about them (not wanting to engage, not wanting to empathize) and none about me, or rationalism.

I've been battling tough life circumstances and mental health issues for a long time. I pretty much think it's rational to have a depressed 'outlook'. When I'm not actually depressed (thinks to lulls in circumstances or effective drugs) it's not that the outlook has really changed, it just doesn't really bother me. That's not rational. It's nice, and makes life a lot easier, but I would not call it rational!

Anyway, I wish that all of our choices were less constrained by things like financial considerations and family circumstances. But in life all choices are constrained somehow, and within the constraints life offers us, we are each the experts on ourselves and need to make our own choices. Sending hugs to everyone here thinking through the difficult questions, no matter where on the treatment spectrum we end up.

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 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 1, 2018 09:30AM Marymc86 wrote:

Jadedjo,

I also went through this totally alone. I told my doctors "I don't have a death wish, but I do not have kids or a husband or anyone to live for. Why go through chemo and drastic measures only to see this cancer return later? If it's going to return and get me, well, then that is how I'm meant to die. Hopefully, that will be long down the road and my life until then will remain healthy like it has been until cancer. If I had kids to live for, I think my decision would be different. I am healthy and I'm a trained Health Educator. I've lived as healthy a life as anyone could and I still got cancer. Some things are beyond my control, this is obviously one of them. I watched my mother, grandmother and now my sister have strokes that debilitated them enough to put them in nursing homes for years. I do not wish to become disabled. I think there are worse things than cancer."

They listened and heard me. They supported my decisions. I did radiation ( I also had no node involvement ) and I had a lumpectomy and breast reduction. I did not do chemo (oncotype 27 and recommended) and I have not done tamoxifen. I had just started a new job as a Realtor because I could not find a job in Health Education, which I really want. As soon as I signed on and began training, I was diagnosed. Life tends to slap me that way. I've been told to think positively all my life because I don't, never did. I did try it once for 6 months and I have to admit, I was happier. But it was a chore to do because that's not me. I'm a believer in positive thinking, though, because of my experiment that 6 months. I just don't like being told to think positively. Right now, I'm moving past cancer and just focusing on trying to get this new career off the ground. As one healthcare provider said when I told her I didn't want adjuvant therapy, "Well, you have to live your life." After hearing her say that, I took a deep breath and signed a breath of relief. So, make your decision, let it be known, breathe and live your life!


Dx 2/12/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 6/25/2018
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Nov 1, 2018 10:30AM april1964 wrote:

....when I had treatment it was a “given” that I have radiation.... I never thought to say “no” or “I need to think this over”..., things proceeded so quickly and my doctors and family and I all assumed that I had to have it... I of course went along with the plan with no notion of questioning it... now I wish that I hadn’t felt so panicked into having it done... I have irreparable damage to my skin from it...

oncotype 18 Dx IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Nov 1, 2018 01:02PM Jadedjo wrote:

Salamandra

Trust me I get it, I just pretty much got a lecture in another thread how I should be out there living and loving  life because I'm stage 1 not stage 4. They also seemed to make the assumption I had a great childhood and just wasn't "trying" and if I did I would get great things. Life doesn't work that way. I've tried a thousand times,failed every one of them.im the same way on antidepressants ,nothing's better I'm just a zombie who don't care in between the other nasty side effects that is. That's not a life either.

People haven't lived it so they don't seem to get it,

Marymc86

I get what you mean when you say life slaps me that way, every time I seem to move forward in life my body comes up with a new life debilitating chronic illness.

I tried the think positive thing too but too much negative in my life soon  beat that out of me.it didn't change anything but make the hurt and disappointment deeper when it blew up in my face.

I truly believe due to my super sensitivities to the environment and medications that my life would be made worse by tamoxifen. I pretty much see it as me standing in a pool of toxic flammable liquid with me holding a lit match that doesn't blow out but is burning down to the fingers,which is gonna kill me first? The toxic fumes (risks of tamoxifen of which I'm already on the list for for other reasons) or the flames when the match drops (cancer). Which is why I'm pretty much in the no tamoxifen fence.

I also believe it will be coming back no matter what I do so why put myself through all that. Like you said if I had anybody I needed to be around for I would have considered it but I don't and I don't see that changing. 

April1964

I stopped trusting doctors a long time ago. I question everything. Although truth is there is panic at the beginning because here was a delay with surgery I had time to think and experiences after surgery cemented my decision. Everyone i saw in the cancer care community said I would have shoots through every step and I ended up having little to none. I knew I wouldn't survive chemo without any support like that so that but the last check mark in the not doing it column, after reading the risks of tamoxifen I find that it's more likely to kill me faster then the cancer. I mentioned I'm already on the risk lists due to hereditary and other issues. I'm sorry your experience was so bad.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 1, 2018 02:08PM april1964 wrote:

hi, jadedjo. I’m so sorry to hear of your suffering ... people who aren’t in our shoes have no clue that once treatment is over there are other issues that confront us such as lingering side effects from treatment and the long term emotional shockwaves from diagnosis itself...


oncotype 18 Dx IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Nov 1, 2018 03:10PM Jadedjo wrote:

April 1964

I know.Not to mention the other issues some of us have even before that.i have had close to 20 years of life ruining chronic illnesses. Any treatment is going to make them worse and probably not likely to recover because some things just don't. So maybe you chase the cancer away for a little while with chemo and pills, grab some extra years but you spend that extra time wishing you were dead because the aftermath and side effects has completely ruined your quality of life even more then it already had been ruined before. Extra amount of years mean nothing to me I have nobody to share them with, spending whatever time I have left with SOME quality of life until the cancer takes it away is more important to me.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 3, 2018 05:12PM WC3 wrote:

Jadedjo:

I respect your decisions, whatever they are. Just remember thought that you can always try chemo and hormone therapy and stop if you want....Also, I'm wondering if the hormone therapy would be your way in to see an endocrinologist.

Also, since the chemotherapy has shut down my ovaries, and obliterated my old immune system, and thus autoimmune antibodies, it seems some of my endocrine problems have also gone away and I have been able to stop some of the medication for that. Maybe it will similarly help with some of your hormone problems. It's just something to consider.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Nov 3, 2018 08:17PM - edited Nov 3, 2018 08:18PM by PebblesV

@Jadedjo - I actually think you are taking good steps focusing on nutrition, a lot of others have chosen to say no to chemo, no to tamoxifen, and adopt cancer-fighting nutrition and have thrived. Most people had the surgery, and I learned through research and similar stories that surgery is really the most curative thing to do. Chemo, radiation, other stuff is seen as 'adjuvent' therapy to help reduce chances of recurrence, and it's up to everyone's own risk/benefit analysis what they are willing to do.

Also, the stats are in your favor with your level / type of cancer and you're probably going to survive this. Just saying. Even if you do no other treatment, I think you have over 85% chance of survival, and add the nutrition to that and you can bump that up to 90%+. Other people do chemo or hormone therapy or radiation to get those odds. I know you'll cringe if I say you're "lucky", so I'll just say, your odds are super solid and I hope you feel good about your decision to refuse other treatment. For you, with all the potential of side effects, sounds like you are making the right call. And at the end of the day, we all just need to do what's right for us, there's no one size fits all, and you need to figure out what works best for you.

Also... I'm not going to say things will get better, you really never know what life throws at you. I'm also not going to say be positive, because this is a crazy life challenge we're all going through. All I can say is there are things you can control - which you're already doing - like to be incredibly well informed and do the nutrition/exercise stuff which I think go a long way. I learned going through this that you really need to advocate for yourself - they mentioned the Oncotype test to me but once cancer was found in my sentinel lymph nodes, the surgeon started to say I don't need the Oncotype b/c they'd just do chemo now (plus similar thing re: my age being "young" docs seem to lean towards chemo, maybe b/c they think we can handle it better if we're younger). Anyways, I INSISTED on the Oncotype DX test, and actually cited a board I found here where others had cancer in their lymph nodes too and half of them did chemo and half didn't (as recommended by the oncologists!) and then a study I found showing that Oncotype was still relevant for people with ER+/PR+/HER2- bc with tumors less than 2cm and cancer in less than 4 lymph nodes. I qualified for all that, so I pointed that out, and they finally agreed to do the Oncotype - and when my Oncotype score came back and it was low, I finally had the stat needed for the docs to do a 180 and suddenly agree that I did not need chemo. But I think they would not have done the Oncotype test if I didn't insist on it, so advocate for yourself. I know you only have yourself to rely on, and in this case, I relied on myself - you are your own best advocate, go with that.

RE: nutrition - I found some helpfully inspiring stories and advice with Chris Beats Cancer (who was diagnosed with cancer in his 20's, did surgery but said no to chemo, changed up his nutrition, and is thriving I think 17 years later now), and also from the scientific side, a side called foodforbreastcancer.com that lists different foods and the reasons they are good/bad for breast cancer based on actual studies.

Finally, this is a nutty piece of advice but one from the heart - if the feeling of being alone is weighing on you and you feel ready to take on the responsibility, I actually suggest you think about getting a dog. Rescue one, they would probably qualify as an emotional support dog for you too so you can bring your dog everywhere, and care for that dog, and that dog will need you and care for you too. If you adopt a dog but then find the responsibility overwhelming, there are no kill shelters that will help find the dog a home (like Best Friends Animal Society). My husband and I have our "paw family" and going through all this, we've accepted that if we have kids, great, but if we don't have kids, we will be content with our "paw family". And BTW, since hormone therapy, which I think I'm going to do, carries a big risk of making me infertile, we're pulling some eggs now. So I'm trying to not get down at the infertility risk even though we were trying to have kids right when this happened, instead I'm just taking whatever action I can and getting eggs before I start the hormone therapy.

So it's not about waiting for the future to be better, it's about accepting what's going on, persevering (because you never know what's around the corner), letting go of what you can't control, and impacting what you CAN control. You're already doing that saying no to chemo and embracing nutrition. You might want to consider a pup (also because puppies are AMAZING), but really be responsible for it and care for it if you do. Keep persevering, I've read some of the comments and you have a whole network of women behind you, we are here for you.

@edwards750 - Totally true that doctors are real people too, with their own opinions, and not all of them offer the same POV! BTW I also dodged chemo with a low oncotype score and am going through a similar 30 radiation treatments. Any other advice from someone who has been through something similar is appreciated! Just started and feel fine after the first week of radiation, hope it stays that way. Things like the oncotype test and hormone therapy came out of studies showing how breast cancer has been overtreated for years - 10 years ago we wouldn't have had the oncotype to help justify no chemo, maybe 10 years from now they won't even recommend chemo for breast cancer anymore.

Another story re: doctors and different opinions - a friend learned she was pregnant the same day she learned she had bc. Her first doctor told her to abort the baby. She sought a second opinion, and the second doctor said they could actually do chemo in the second trimester and the baby wouldn't be effected (something about the walls protecting). Anyways, she's over a year out from treatment now, she actually did really well on chemo - likely because her immune system was built up with the baby - and she delivered a healthy baby and is cancer free a few months ago!

@Meow13 - I applaud your decision to not do chemo and the fact that you are thriving 7 years later makes me feel so much more encouraged about my choice to forego chemo as well. Was there anything you did on the nutrition side to help? Would love to know!

@Marymc86 - I think you hit on the most important thing, at the end of the day it's OUR decision, and knowing that helps feel some of the control over the situation is back. I feel relieved to have the low oncotype that helped justify my decision to refuse chemo, but frankly I had already decided that, and the oncotype results were helpful to persuade my family. And yes, I feel at peace with this decision and that I have the right path to beat this now! I think we just have to believe in paths we choose and hope for the best? RE: your decision to not take tamoxifen, Suzanne Somers did the same as you and is fine almost 20 years later (she did surgery and radiation, no chemo or tamoxifen).

@PurpleHair - It's stories like yours that are hugely inspiring, thanks for being one more example I can count towards nutritional healing. BTW, I'm also reading Chris Beats Cancer and I went to this 'Cancer Schmancer' conference and got to meet Chris in person! He's a decent, sincere guy. I will read your thread 'Miracle 6 months after diagnosis' more...

@jons-girl - I reached the 20 lbs lost milestone today! I'm pushing a bit harder as I'm trying to lose weight before I start tamoxifen as I heard it sometimes causes weight gain. Just trying to control what I can. I think your weight loss WILL kick cancer's butt, hope mine will too. At least we are doing what we can!

@april1964 - oh dear, I'm going through radiation now... so far so good but it's only been 1 week. You mentioned irreparable damage to your skin? So sorry... I've heard of coconut oils and aloe vera helping things long term, also tiger balm is kind of miracle medicine but I don't know if right for your case.

@salamandra - hugs to you too, and I think you hit a good point that while our choices may be constrained, we can still make choices. And the choices are ours to make.

@WC3 - very interesting that chemo in your case helped solve a different issue? Cheers to that and wishing you, and all of us going through this, much success in the future!

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 3, 2018 10:28PM - edited Nov 3, 2018 10:32PM by Jadedjo

WC3

Thanks but I'm not going to put my already precarious quality of life and health at risk on a possible chance. Main reason I won't do tamoxifen is that it doesn't give a 100% guarantee to keep reoccurance away, it's a crap shoot just like getting cancer in the first place and rarely is luck  on my side.ibe considered the pros and considered the cons I haven't gone into this without thoroughly  thinking it through. Thank you 

Pebblesv

Thank you, I know I am lucky that I'm early with no node involvement. I just feel the price of attempting to stay cancer free the rest of my life ( long lasting side effects/risks from chemo and tamoxifen and since you usually have to be on tamoxifen 5-10 years that's pretty long lasting) just isn't worth it. Maybe if life was different for me, if I had a better local support system or any for that matter, if I lived in a place that needs you to strong physically just to get to it ( mt. Everest stairs live up to their name I have had healthy able bodied people gasping for breathe once they get to the top the outside one can be literal once the snow and ice show up) if I had a child or husband who needed me my choice would probably be different but it's not so it is what I feel is the best choice.sadly because I straight out said no chemo they won't do oncotype.

I will be trying to lose weight too, I need to lose a whole person so it's going to be a long road with a dead metabolism so I don't have high hopes but I'm gonna try anyway. I know the less amount of fat on my body also reduces the possibility of reoccurrence.

I'm giving myself til the new year to eat whatever I want that gives me a little joy then after that it's cutting as much sugar out of my life as I financially and food wise can. I have also figured I could cut back portion wise even more. Make smaller meals instead of two bigger ones. Sadly it doesn't look like I will get permission to get back into my workouts until well into December ( 6 weeks til full recovery my arse) but as soon as I get the go ahead and I am physically capable I will be doing my Ellen barret barefoot cardio series,then ease into adding the weights. I'm aiming for a minimum an hour a day at the beginning and then easing into more after New Years. I'm hoping I can lose at least 30 pounds by mid to late spring.casue even that will help my odds by a touch.

Regarding your friend, I'm a child who came into this world totally healthy after every doctor told my mother to abort me cause I was going to kill her health wise (blood pressure couldn't be controlled), I was born early (I was due first week of September I think)because my mom had severe blood pressure issues but I came out perfectly ok..and then promptly was forgotten in an incubator for close a week,ya my mom was real sick and pretty much in a coma and my dad was off drunk who knows where so I spent my first week of life in a machine I didn't need in the first place as it was a precaution. Like I know I was fed and changed but I doubt I was held all that much.When I was told that one I said "you know that explains so sooooo much" so I know it can be a success story.congrats to your friend.

I felt a peace the second I decided I would do it my way no matter what the risk was that I would get it again. Even if it meant I had less then five years left.

Good luck on your path and journey.nest wishes.

Thank you.

This too shall pass. It might pass like a kidney stone but it will pass. Dx 7/2018, IDC, Right, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/2/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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