My choice--refusing treatment
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I wanted to ad to this thread. I am a two time survivor, and I have chosen to do nothing but surgery. In my case, two mastectomies. I have no interest in anti hormonals or chemotherapy of any kind. My most recent breast cancer was only a few percentage points from triple negative, as it was mildly progesterone positive.
I cancelled any appointments that my surgeons scheduled with oncologists because I knew that I had no interest in chemotherapeutic agents.
I am in my mid 60s now, and quality of life is my main concern. I feel well at this point, and even if I begin to feel poorly or progress I will never question my choices. I am at peace with them.
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Hi there. I feel exactly the same way. I refused anti hormone treatment and had a BMX only. I think we are lucky that we are not dealing with this disease at young age and that we are stage1. I think I would have made different decisions if I had young children and was a higher stage.Good luck to all...
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dtad, I agree with you. I would probably have felt differently if I had children, but we don't. My husband is ten years older than I and has a serious heart condition. If I didn't have him, I probably would have refused radiation as well as chemo, but chemo would have spoiled any quality time we have left. I have come through radiation well. Tomorrow, I have a telehealth conference with my Oncologist but don't expect any 'bad' news, and then I go to see her in April
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Today I signed the paperwork for palliative care. I am just here. Processing that I am even here at all. I think I am in a good place for what it is worth. I know to never say never. And that treatment will come at me in options like radiation in order to keep me from suffocating / strangling like last Spring. I am finding there is a super fine line between hospice and palliative - between letting nature take its course and deciding that you are too "healthy" still to suffocate. It is kind of confusing. But am handling it. My new team will be wonderful. I am so happy with the hospice nurse that I met today. So very happy. Who would think that, happy to meet hospice.
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hi bluebird, so sorry to hear your in pall/care, what a journey you've had. I hope that what ever comes your way gives you comfort and peace of mind, and you are doing what is best for you, giving you a big cuddle !!!
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thank you, twinbabes. Know that my alternative choices are in the forefront of my present protocol. I feel like I lost my way and will in the last few years. I have to be willing to go full force now.
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hi there, just thought i'd ask how everyone is doing? There hasnt been anyone post for a while, I hope everybody is well . Hows everything going bluebird? Keep your head up high and stay strong. Not much has changed for me, just living my life how I choose, seems to be working!. never follow anybodies rules by the book, just do what I feel is right for me
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Hi, twinbabes, Bluebird has been quite active lately. If you go to her last post on this thread, just click on her name and you will be able to scroll down and find a complete list of her most recent posts. The list includes all posts without regard to what topic she is responding to, so... you will be able to see what she’s up to. Sara
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thanks sara, I'll do just that, and I hope your well, happy, healthy and inspired .
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Yup - I am alive and well enough. Thanks for checking in on everyone. I am using mega doses of ellagitannins along with a hormone inhibitor and mid-dose raw hemp oil and have high hopes these are holding back cancer from spreading further. My qol is better all the time. On the 21st I see the oncologist again and it will be before me again, just don't think I can be convinced to once again lose the qol.
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Hello, everyone. I just wanted to stop in and catch up and say hi. Am wishing you all the very best in your continuing journey. I am doing great, except for fatigue. My RO has told me I am cancer free, and that my MO would sign off on me in April, which threw me for a loop because it is barely five months since I got my diagnosis. A nurse friend told me that the MO will continue to follow me from afar re: blood tests, etc. I guess I would rather hear the words "No Evidence of Disease" than to hear "You are cancer free", because I do believe that could be misleading for some who would have their hopes up that there will never be recurrence. I am not going to worry about it, but will definitely do everything I can to be aware of what my status is.
Have a great weekend, everyone.
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Hi,
I'm new here and glad to find you all.
My cancer came back again in my right lung, pleural thickening (I think its called pleurex) removed 1.2 liter of fluid from my lung yesterday. I have pain on my right breast and chest and shoulder and lot of caught. Since during my 10 years with cancer i went through two sets of chemo ( in total 14) and i know exactly what is to go through that. Having in mind that i have decided to not go with chemo this time.
Do you have any suggestions about other options or medications?
Im on zoladex and pamidronate right now. In addition I'm taking alternative medicines and herbs.
Thank you so much for your reply!
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Noba, sorry your cancer is back even though you went through all that chemo. I hope you can get targeted therapy or something similar.
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Hi everyone, glad to see everybody is doing pretty good, bluebird happy to hear your qol is better all the time you deserve at least that and more. Nancy what a lovely thing to hear " Cancer free " all though as you say can be misleading in some cases, but i hope not for your sake, fingers crossed. Noba so sorry to hear the cancers back in your lung, I hope that someone out there can give you some ideas on meds ect, I (at the moment ) I dont take anything so cant advise, but can give you a cyber hug and wish for you, better health.
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i cannot say this is working for me yet. There is hope. That said, I am taking red and black raspberry seed powder at a high dose of capsules. Along with really strong CBC hemp oil. There's more. But these along with the hormone inhibitor. I have to deal with a collapsed center lung lobe, right side. Lymph node cancer filled on left carotid artery and vocal chord node. Three + liver lesions, two that were ally large and painful. Other stuff going on. An in the middle of hope, following my instinct and considering am I doing the best choice for me or not. But after over a year on chemo pills and targeted therapy cancer pills that really did not work, well I am very hesitant to waste more good days of what could be a limited life.when I know more of how this is going I will be sharing more on alternative and complementary threads.
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It sounds pretty sh..ty what your going through bluebird, Im thinking of you ...
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Greetings my strong friends! Great to read all your posts and hear of your lives and decisions. I chose not to take AI's and my oncologist said "you are the last person to not take AI's" but I think she finally believes that I will not. I have had many chronic illness' in my life and also have paradoxical responses to medications which leaves me quite ill, quite often. I finally found something that feels like it is working for me and that is Time Restricted Feeding (or eating). A term used as it is more positive than fasting. I would have never thought I could fast, but I find this completely doable. Check out the work by UCSD cancer researcher Dr. Ruth Patterson here: The results from her study were amazing, she found a close to 40% reduction in breast cancer recurrence. I asked all my oncology docs why they didn't bring this up when I asked them for support while not taking AI's. They all just shrugged. Dr. Rhonda Patrick who is interviewing here also has other interesting ideas on how to fight cancer (specifically sprouting broccoli). I won't know for sure if this is working, but for the time being it feels like I am taking action and have agency in my life. I am finally forward thinking once again and that feels great. I have joined the program at Salk on noting every single thing I put in my mouth, what sleep I get and what exercise I get (mycircadianclock.org) and it helps me stay on the straight and narrow.
Best of luck, and love to you all.
May we all be well.
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Encourage - When I was doing only alternative I used this too. I would wake up and go without eating or drinking juice or anything at all for as long as I could stand it. Then give my body a dose of something cancer cells would want but could kill them. I finally went to an oncologist for help at one point and then - after cancer being found in 2011, I only had one active cancer lymph node the end of 2013. Then I lost my way. Cancer is a a scary place to navigate and I started using Faslodex / arimidex. It worked. Until it did not. But I could have been doing more then and when I went off it.
Seeing new oncologist on Monday, bumped up appt to talk about the cancer lymph node on the carotid artery / vocal chord nerve. And collapsed right center lung lobe. And possible choices if I decide to use a treatment with what I am doing now. IF. The one I am looking at is made from the periwinkle plant and is partly synthetic, probably so it can be patented and then patients charged $$$$$$$$$$ for it. ? Anyway, so far am not considering because w what I am doing the qol if getting better and I feel better and pain has turned down by 90% and more most of the time. Wow.
I am going to explore the periwinkle plant more later.
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I just want to say that I absolutely respect this. I am high risk for BC. 44 years old and going in for 2nd and 3rd biopsies next week. I’m preparing myself for what the future (meaning next week) may hold and I don’t think I would choose conventional treatments either. Best wishes to you in your journey.
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Best of luck on Monday, Bluebird! Let us know how it goes. May you have a lovely weekend!
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Tomorrow will be my telltale MO appt. To add a chemo to the choices I am making for a little while? To take Faslodex again if ins will pay for it again? To carry on as I am? Every month this comes in my face. If no chemo can be added then I know there is really nothing more that can be done for me and I am on my own except the aromasin. So very serious consideration. If it can be done then do I take the risk now or risk it being possible later.
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Well, I fired the MO. But I hear the Universe screaming at me - NO CHEMO NO CHEMO. The way is always blocked for me to get through to that possiblity. For some reason, perhaps the sensitivities I have are more than I can fathom. So no chemo and who wanted it anyway, no one deos. Now I am off to a FB UK group to get the special oil. And trying to find a new MO yet again. I want one like my primary MO, open-minded and careful and gentle.
I came in this refusing treatment and perhaps I will be going out refusing tretment. Right now still on the aromatase inhibitor and wish I could get on the Faslodex w it but that is as much as I want really.
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Two years ago my cousin had breast cancer and went "natural" and has refused all other treatments. On Sunday she passed away. The cancer was everywhere. Her sister, a nurse, tried everything to help her but "chemo kills people" is all she got. Cancer kills people a lot better.
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oh bluebird, I wish you could get faslodex since it helped before. I hope you find a good mo. I think I will stick with mine even thoigh my new insurance considers him out of network.
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blue pearl - that is so sad. It’s a personal choice of course but it’s so risky. I wasn’t willing to play Russian roulette.
Steve Jobs of Apple fame went the alternate route and it cost him his life. His family and doctors begged him to have the treatments prescribed by his doctors. He refused. When he realized his choices weren’t working he went to St. Jude for treatment. Too little, too late.
He had a press conference when he realized the end was near and admitted he should have had the treatments and advised people not to do what he did.
I am sure there is value to some of the foods that help prevent a recurrence. For me though it would be in addition to but not in lieu of.
Diane
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Hi everyone. I'm not advocating no treatment. Its a very personal decision. However isolated anecdotal cases are misleading. Unfortunately, thousands of people die of BC every year while having full treatment too. Lets find a cure!
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dtad
I agree with you.
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Hi Everyone... I was diagnosed with stage 1b breast cancer 3 years ago this month. I had a lumpectomy, lymph node dissection, 6-week radiation treatment, and have now been on Tamoxifen for 2.5 years of my 5-year plan. Since I was diagnosed at the age of 33 and didn't yet have children, I made the choice to freeze eggs before beginning radiation or tamoxifen. I am now 36 years old, and totally fixated on the ticking clock for having children, and re-evaluating if Tamoxifen treatment risks outweigh the reward. I just don't know. I kind of just went through the motions, I did what my doctors advised me to do. But between side effects from the medication and the knowledge of possible harm that Tamoxifen can cause to my body I'm just not sure it is worth it. I desperately want to be a mother, and want to live and healthy and long life. I'm so confused by all the conflicting information I get that it has made this decision quite impossible. I feel lost, confused, and unsure of what to do. I just recently joined these message boards, and it's been encouraging to see all the support and knowledge that is shared. Anyway, that's just my story I wanted to share. If anyone has any thoughts or suggestions, or experienced something similar, I am open!
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shebg16....such a difficult personal decision. Are you having side effects from the Tamoxifen or you just want to come off to have a baby?
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It is a tough choice for you. What are your doctors saying? I took it for 5 years without major side effects but lots of women did have major issues with it. I am a mother but I would be sorely tempted to suspend taking it if I wasn’t.
Diane
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