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My choice--refusing treatment

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  • 53nancy
    53nancy Member Posts: 295
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    Thank you, Jelson. The products being recommended to me are not ones that I would ever use on my own, because of some of the things listed in the ingredients. The lotions I do use are natural hand made ones that are available in a local health food store. I hope I won't regret doing the radiation therapy. I did refuse chemo but my surgeon told me that doing radiation was a "must" because one of my margins was very narrow (0.1 mm) and that more or less scared me into doing it. But I guess I also thought it was a form of compromise for family and friends who were upset that I chose not to do chemo (none of whom have actually gone through it themselves - :) ).

  • Georgia1
    Georgia1 Member Posts: 188
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    Hi Nancy. This may have already been discussed on another thread but the calendula cream is all natural. My RO said not to use it four hours in advance of radiation but otherwise it's fine to use day and night. I also found 100 percent, all natural aloe vera under the brand name AfterSun.

  • meow13
    meow13 Member Posts: 1,363
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    Nancy, since your margin was so close, did you ever consider a mastectomy? I had a mastectomy and was very upset but my DIEP reconstruction was so good I am glad I did and didn't require radiation. I didn't do the recommended chemo either.

  • 53nancy
    53nancy Member Posts: 295
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    Georgia1, I am REALLY hoping they will agree to letting me use the Calendula ointment. I planned to use Alie Vera directly from a plant. Because I've only had one treatment, I used it tonight and it felt so good. It is hard to understand that they don't want me to use all natural products. You are having your radiation treatment on Sunday

  • elainetherese
    elainetherese Member Posts: 1,632
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    Nancy,

    These radiation oncologists are all over the map when it comes to post-radiation moisturizing/treatment. Mine prescribed me something called "Radiaplex," which cost $25 a tube! I've seen lots of breast cancer patients use both Calendula and Aloe Vera on these message boards, with their radiation oncologists' consent. I say just use whatever works for you!

  • Kyoko88
    Kyoko88 Member Posts: 2
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    my mom will have surgery tomorrow, iDC. Radical mastectomy.

    She is 79 and diabetic, not wanting chemo. From the little I read, chemo is aimless poison.

    Her tumor was estrogen receptive, but she read about Budwig protocol and started the regime. She also does not want chemo

    I am extremely worried not sure if the flaxseed oil may do harm, some said it has estrogen in effect, others said anti estrogenic.

    Any help would be greatly appreciated.

  • Niru
    Niru Member Posts: 1
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    I have just had a mastectomy after ILC was diagnosed. It was a biggie, 10cm in total size, but no nodal involvement. Mitosis 1.

    ER+ PR- HER-. I haven't seen the oncologist yet. But I plan to refuse radiation and hormone therapy, Chemo was not suggested.

    I am postmenopausal and was prescribed Vagifem suppositories for vaginal health. Have been very irregular in using it. But have not decided not to continue with it at all, because of the ER+. But I do hope this means I am generally already low in ER.

    I will try and drop some fat as that is the main source of ER now. I have been vegetarian since 1998, so will continue the same, maybe shifting to a more vegan focus and dial down the red wine. I will also avoid any foods with estrogen or phyto estrogens. I wont go overboard on turmeric either, as I remember that traditionally women use a kind of turmeric to reduce body hair - it suggests to me that it has estrogenic qualities. Also, my ex-mother in law used to tell me that too much turmeric was bad for men .. .again suggesting the same.

    I will also include a lot of cruciferous vegetables, because it also has a good effect on ER in the body.

    But one of the most useful things I found out was that cancer cells are extra dependent on an amino acid that the body cannot make - methionine. Now we need some of it for health, but I will keep it to a necessary and sufficient level - 15mg per kilo of healthy target body weight. As it is more concentrated in meat, fish, eggs, cheese, going vegan or close would be a good idea. Low levels of methionine can result in grey hair. My hair is quite grey overall at 64. I am also going to keep total protein low and source a lot of it from broccoli which has 20% protein.

    Any thoughts on this?

  • meow13
    meow13 Member Posts: 1,363
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    Well Niru, I had one idc and one ilc each 1cm, er+ 95%, pr - less than 1% and her2 negative. At the time my bmi was 21 at age 53, exercised everyday for 1hr even weekends. So I am not too big on lifestyle change will protect you, because it didn't protect me. I also had a very healthy diet. I had an oncodx score of 34.

    I chose the AI drugs with the promise it wouldn't hurt my health. It did but overall I am ok. I wouldn't do chemo.

    As long as we have no idea why we are getting cancer I feel like there are right answers in preventing it.

    Healthy body weight and exercise and good eating habits sure aren't going to hurt.

  • Momine
    Momine Member Posts: 2,845
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    I am kind of with meow on this. Definitely good to exercise, maintain healthy body weight etc., but the effect of all that is likely somewhat minor, when compared to established treatments.

    As for phyto-estrogens, it is not clear how they work in the body. Some research suggests that could be beneficial, rather than harmful, for people like us.

    Lastly, are you sure about the broccoli protein? As far as I can tell, 100 grams of broccoli has 2.8 grams of protein, which would be about 3%, not 20.

  • twinbabes
    twinbabes Member Posts: 19
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    hi just thought id let you know im 9years out from discovering my breast lump have had the obligatory tests which revealed idc. Ive had no treatment whats so ever and dont intend to. Im so glad that there are others out there that feel they dont have to go down the path of traditional treatment. I have waited all this time to talk to others who feel the same and will not make judgements regarding my decision. Its a lonley road out there, as i suppose we are all finding that out. I wish you all luck and happiness

  • marijen
    marijen Member Posts: 2,181
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    Hi twinbabes! Thanks for joining us. Can you tell us anymore about your bc? Like how big was the lump? Did you have a biopsy? Was it ER PR positive? What kind of diet do you follow? Exercise? Supplements? It's great to know it can be done - no treatment. Has the lump changed in anyway? Have you had any recent scans or blood tests? What age range are you in? Too many questions? : ) Please stick around!

  • ksusan
    ksusan Member Posts: 461
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    The source of the "20% protein in broccoli" idea is often a misstatement in Dr Fuhrman's Eat to Live.

    100g of broccoli has 2.8g of protein.

    100 calories of broccoli has 8.29g--that's 5 cups of raw florets.

  • Momine
    Momine Member Posts: 2,845
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    ksusan, thanks for clearing that up. I love broccoli, but never thought of it as a protein source. I also discovered, during treatment, how important it is to get enough protein. Eggs are a great source of protein, and I have yet to find a convincing reason why they should be bad, in moderation obviously. But I also eat quite a lot of beans, lentils and chickpeas, for example. They do have phytoestrogens, but again, the jury is out on that, and some evidence suggests a beneficial effect. Pulses also have lots of fibre, which helps eliminate estrogens from your system, as well as minerals etc. So I use them as starch, rather than eat things like bread, pasta and rice.

  • SavedbyGrace1972
    SavedbyGrace1972 Member Posts: 11
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    Monetswaterlillies,

    Sweets you are entitled to your feelings and decisions about your healthcare. Just make sure you're making an informed choice. Know the pros and cons about treating and not treating! Plus think about what will happen if later you decide to change your mind. I think when most are diagnosed, the lion in us comes out roaring and all we think about is fighting and winning! When in actuality, it is a very personal decision to decide to treat or accept palliative care.

    I've told my family I don't want to fight to live and not live in the process. So many have been fighting and found themselves paralyzed, bedridden, suffering bed wounds and not really enjoying their last days alive. That's nothing I want. I want to make more memories with my family, travel, be free and not a medical science project.

    So decide what is best for you only after you've done extensive research. If it's something treatable with minimal side effects you can live with or if it's a losing battle, you decide. Just be informed.

    Plus make sure you are deciding based on your feelings and not because of someone else. We tend to think of others and don't want to hurt them and make decisions based on those feelings.

    Hugs to you and hopefully you have a great outcome.

  • twinbabes
    twinbabes Member Posts: 19
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    hi marijen thanks for replying, my stats are as follows from when i was officially diagnosed ( i had found the lump 3 years prior and had major family issuses to look after before i could deal with myself ) . Dx 2011 with idc 1cm at age 44 stage 1 grade 1 with a question mark on the grade (they werent sure until they were going to do the lumpectomy ) er+ pr+ her- . From the moment i discovered the lump i knew i would forgo treatment i had been in the fitness industry for quite a few years and was reasonably fit and followed a pretty clean diet although i dont mind having a beer or several ha ha, i know the lump has grown (not sure what the size it is now) but im still active (not in the fitness industry anymore due to other reasons) . I have had no other tests other than the original bone and mri and biopsy done, i am totally just living live as best as i can but there dosent seem to be to many people intrested in refusing treatment of any kind, and i feel its a very lonely road with not too many people to talk to safely and honestly. Even family members are hard to talk to. So thankyou for showing an interest im greatful to you. I hope all is well with you and everybody out there." My love is for my animals"

  • Momine
    Momine Member Posts: 2,845
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    Twinbabes, I can understand foregoing chemo/rads, but what is your reason for refusing surgery? Hope you don't mind the question. Just seems that in a case like yours, surgery alone would be close to curative as well as quite minimal.

  • annwill64
    annwill64 Member Posts: 3
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    You are very brave and I wish you the best. I am choosing not to take Arimidex. I have struggled with this decision but I just feel it is right for me. That is the most important thing is that we do what is right for ourselves. It is not our doctors decision, or our families decision, it is solely up to us! Blessings to you!!

  • meow13
    meow13 Member Posts: 1,363
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    I think when you feel strongly about how you want to proceed, you should trust your instincts. I didn't do the recommended chemo and when I finally said no I felt a sense of peace.

  • twinbabes
    twinbabes Member Posts: 19
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    momine ive chosen no surgery for the same reason i have chosen no other treatment i feel that it is best for me, we all have our desicions to make and sometimes they are not always correct however nine years down the track i still feel the same way as i did all those years ago and as meow13 said i felt a sense of peace immediatley. None of us can predict the future but we can all live in the present, im comfortable with my desicion. I wish all of you the best with whatever you decide.

  • 53nancy
    53nancy Member Posts: 295
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    Meow13, that is exactly how I felt. Everytime someone objected to my decision not to do chemo because "you should do what the doctors tell you because they know best", I would rethink it and lose my peace. I only got it back when I went back to my original decision of no chemo. Radiation went well for me; I am about three and a half weeks out and peeling like crazy, but my creams are keeping the itching at bay. Have a great weekend.

    twinbabies, nine years out - that is great. I think we all do better when we let our hearts make the decision for us instead of other people. Hope you continue to do well, and you have a great weekend, too.

  • meow13
    meow13 Member Posts: 1,363
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    I know I made the right decision.

  • Momine
    Momine Member Posts: 2,845
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    Twinbabes, and the same to you. Thank you for not taking offense.

  • Sara536
    Sara536 Member Posts: 5,937
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    I did surgery but refused aromatase inhibitors after a few days. I also don’t intend to try tamoxifen. I’m afraid to go back to my MO now. I’m interested in knowing what others do for general followup. Is there a reason to see an MO in my case? Blood tests, etc.?


  • marijen
    marijen Member Posts: 2,181
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    Sara, I went back to my MO and told her I stopped taking the Femara. All she said was OK. I was surprised. Without It I still want the tests and scans so I will keep seeing her.


  • twinbabes
    twinbabes Member Posts: 19
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    hi marijen we all have to follow our hearts and make tough decisions and it sounds like you have regarding the femara I hope your well and at peace your choice. Has it made any difference to your well being/health dropping the femara ? I take nothing at all for the present but have decidide to take pain relief if and when its required, which could be years down the track fingers crossed. So far I have had one blood test done which was two years ago and all was fine and have no desire to keep having them as the doctors do tend to dig around for something so they can put you on some sort of drug ! No thanks not for me, Im only on asthma meds and thats enough. I hope all our good health and happiness continues . And momine no offence taken Im just a person with a different opinion thats all all the best to you

  • twinbabes
    twinbabes Member Posts: 19
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    hi 53nancy never lose sight of your decisions and sense of peace and its sounds like you have done that. I have excepted what ever comes my way and at the moment it is not too bad at all. I hope all goes well for you and your itching abates you have a peaceful and good weekend yourself and you might like to try paw paw creme or calendula creme for the itching it might help in some way, they are found in health food stores or chemists

  • 53nancy
    53nancy Member Posts: 295
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    Thanks. twinbabies. I have calendula ointment and that is helping. Love your positivity

  • twinbabes
    twinbabes Member Posts: 19
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    your welcome we all need a boost of positivity from people who understand what we are about. Good vibes to you

  • twinbabes
    twinbabes Member Posts: 19
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    hi monetwaterlillies i was just wondering how things are going for you and whats happening re: your life ect have not heard of you or any body for a while i hope all is well with everybody

  • twinbabes
    twinbabes Member Posts: 19
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    hi monetwaterlillies i do hope you are ok id seen you were considering surgery and nothing else in jan 2017 i hope all went well for you Ive had no treatment whatsoever and am doing not too bad at the moment i was wondering if all is ok with you ! keep in touch, there are very few of us out there that choose that road nancy53 and meow13 i hope all is well with you both im thinking of you