anyone here NOT-----

disneyfan2008
disneyfan2008 Member Posts: 6,583 Member
edited March 2014 in Breast Cancer #1
A co-worker (not cancer patient) asked me if I knew of anyone who has chosen to not have treatments and / or not take post surgery meds!!!? Another co worker and I went through same surgery same exact time-I do not think she is on meds.

Just curious now that I was asked about it!
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Comments

  • joannstar
    joannstar Member Posts: 403 Member
    No meds for me
    I am triple negative and have had 2 lumpectomies (to get clean margins) 6 rounds of chemo and am ready to start 33 rads. Then I'm finished because my cancer is triple negative and does not respond to hormones, so no more treatment is available. That is both bad and good I guess...no more side-effects but no way to fight the beast either.
    Perhaps your co-worker is triple negative?
    JoAnn
  • mwallace1325
    mwallace1325 Member Posts: 806
    no post meds for me
    not because I'm triple neg but because I couldn't STAND the side effects from the ones I tried.

    I put it in God's hands, I'm trying to avoid as much soy as I can (which ain't easy) and just praying that I've not made a horrible mistake.

    marge
  • lovs2decorate
    lovs2decorate Member Posts: 44
    I choose not...
    After my surgery I chose not to have traetment or take any post surgery meds.

    I have been told the chance of a reaccurance is 20%. If someone told me I have an 80% chance of winning the lottery I would play.

    I hope no one takes offense at my choice and I mean no disrespect to anyone who is in treatment or has had treatment.

    Justine :)
  • dyaneb123
    dyaneb123 Member Posts: 950

    I choose not...
    After my surgery I chose not to have traetment or take any post surgery meds.

    I have been told the chance of a reaccurance is 20%. If someone told me I have an 80% chance of winning the lottery I would play.

    I hope no one takes offense at my choice and I mean no disrespect to anyone who is in treatment or has had treatment.

    Justine :)

    Ultimately we all have to
    Ultimately we all have to decide for ourselves what course we want to follow, and I think we have to respect each other's choices and try to learn from each others experiences.Some on here reject chemo or rads and go for natural remedies. Other's follow thier doctors reccommendations to the tee. I've done chemo, rads and and now doing tamoxifin. My hope is that these measures will help, but none of us have any guarentee of long term health.So, maybe 3 years down the road I'll still be cancer free because I took Tamoxifin. Maybe not. But I personally prefer to try what ever is available.At the same time, I'm really interested to hear how others who chose not to take furthur treatment are doing, too. So let's just all keep on posting and educating each other.
  • Rague
    Rague Member Posts: 3,653 Member
    Can only speak for myself
    I will do anything that I can/that medicine can to stay here as long as possible. I will fight to my last breath. I'm IBC so the odds of me making it to 5 years are only between 25% and 45% (depending on the study). Actually as far as I'm concerned - my odds are either )% of 100% - I will either have reoccurance (100%) or I won't (0%) - so for me personally it's either I get a reoccurance or I don't - I can't 'sort-of' get it. So far I've had Neo-adjunct chemo, Mod. Rad. Mast., Chemo, Rads and will be on Femara for 5 years.

    My Heavenly Father sent me here to learn what I need to and grow before I return. He has given my Doctors (and all I've dealt with in this journey) the knowledge to allow me to fight this Monster - so fight I will!

    How I look at it.

    Susan
  • CR1954
    CR1954 Member Posts: 1,390 Member
    I would....
    I would take advantage of everything medicine has to offer, in fighting my cancer...I think I have. I've done the treatments that my doctors have laid out for me, and if they wanted me to do anything else, I would.

    No medications, as I am ER and PR negative. I'm HER-2 positive, so had a year of Herceptin infusions.

    Yep, it's a personal decision, how far you want to go with treatment. I guess that we all, along with our team of doctors, have to make that decision.

    CR
  • ladyg
    ladyg Member Posts: 1,577
    As the saying goes
    "To each his own". I have done everything my doctors said I should do. I wanted to use every means possible to beat the beast. My biggest reasons for wanting to do all I could are my Husband & daughter.

    Hugs,
    Georgia
  • gagee
    gagee Member Posts: 332

    no post meds for me
    not because I'm triple neg but because I couldn't STAND the side effects from the ones I tried.

    I put it in God's hands, I'm trying to avoid as much soy as I can (which ain't easy) and just praying that I've not made a horrible mistake.

    marge

    Is soy bad for you if you
    Is soy bad for you if you are hormone positive? I see onco on Feb.8th. She is going to go into it (diet) more with me. I am going on a cruise this Sat. and don't have the time to check out anything else. Appreciate anything anyone can add.

    Thank You All,
    Diana
  • KathiM
    KathiM Member Posts: 8,028 Member
    I fought like hell, still do....
    It saved my life....twice....chemo/rads, surgery.

    I am not without 'battle scars'...but, I feel that for the time (over 5 years ago), it was the best treatment available. Since then, things have changed, and hopefully will continue to be refined to the place that 'someday' these treatment courses will be considered 'barbaric'...BUT that time has NOT come yet, IMHO!

    In the mean time, I remain NED and live a full life.

    BIG dutch hugs, Kathi
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member

    I choose not...
    After my surgery I chose not to have traetment or take any post surgery meds.

    I have been told the chance of a reaccurance is 20%. If someone told me I have an 80% chance of winning the lottery I would play.

    I hope no one takes offense at my choice and I mean no disrespect to anyone who is in treatment or has had treatment.

    Justine :)

    wiow GOOD point...
    makes me wonder if I did right thing...I guess really no way of knowing if our choices are best for us or not...since each case/ person/patient completely different!
  • mgm42
    mgm42 Member Posts: 491 Member
    gagee said:

    Is soy bad for you if you
    Is soy bad for you if you are hormone positive? I see onco on Feb.8th. She is going to go into it (diet) more with me. I am going on a cruise this Sat. and don't have the time to check out anything else. Appreciate anything anyone can add.

    Thank You All,
    Diana

    Avoid Soy
    According to my breast surgeon, don't go out of your way to take soy i.e. soy milk, tofu, etc. However, don't worry about the little amount in oriental food or in certain packaged products where it's just a small add-in ingerdient. Hope this helps. Marilynn
  • joannstar
    joannstar Member Posts: 403 Member
    gagee said:

    Is soy bad for you if you
    Is soy bad for you if you are hormone positive? I see onco on Feb.8th. She is going to go into it (diet) more with me. I am going on a cruise this Sat. and don't have the time to check out anything else. Appreciate anything anyone can add.

    Thank You All,
    Diana

    My onc said
    that he used to tell his patients to avoid soy, but he no longer does and it is ok for me to eat it. When I asked (after chemo) what I should avoid for bc, he said sugar & fat.
    Your onc will advise you on what he thinks is best.
    Have a great cruise.
    JoAnn
  • Rague
    Rague Member Posts: 3,653 Member
    gagee said:

    Is soy bad for you if you
    Is soy bad for you if you are hormone positive? I see onco on Feb.8th. She is going to go into it (diet) more with me. I am going on a cruise this Sat. and don't have the time to check out anything else. Appreciate anything anyone can add.

    Thank You All,
    Diana

    I was told by my Chemo Dr,
    I was told by my Chemo Dr, my surgeon, rads Dr and my PA to stay away from soy. I was told that a little soy sauce on food was ok occasionally. Was also told to stay away from garlic suppliments - some fresh garlic in cooking fine but not the concentrated suppliments.

    Susan
  • Brooklynchele
    Brooklynchele Member Posts: 123
    I stopped treatment
    2 surgeries: 6/30/10 and 7/14/10. Triple negative IIB. No node involvement. I had 2 rounds of chemo in September and had so many adverse side effects, I discontinued treateemnt. I figured that if I had a 70/30 chance without treatment, I could be in the 70% (esp. since I did do 2 rounds). I also refused radiation since I have a heart problem and radiation is known to potentially damage the heart muscle (if it's given on the left side). As my ob/gyn and primary care docs agreed: no sense in curing the cancer just to die from a problem with my heart instead.

    That being said, I believe that treatment is an intensely PERSONAL choice. What's right for one person is not always right for someone else.

    Hugs!
  • KathiM
    KathiM Member Posts: 8,028 Member

    I stopped treatment
    2 surgeries: 6/30/10 and 7/14/10. Triple negative IIB. No node involvement. I had 2 rounds of chemo in September and had so many adverse side effects, I discontinued treateemnt. I figured that if I had a 70/30 chance without treatment, I could be in the 70% (esp. since I did do 2 rounds). I also refused radiation since I have a heart problem and radiation is known to potentially damage the heart muscle (if it's given on the left side). As my ob/gyn and primary care docs agreed: no sense in curing the cancer just to die from a problem with my heart instead.

    That being said, I believe that treatment is an intensely PERSONAL choice. What's right for one person is not always right for someone else.

    Hugs!

    I agree completely!
    And, once the choice is made, no second guessing! The "If only's" are quite easy to slip into...my rads nurse said it well "Whatever your choice, it's the right one (on explanation, she added 'for you at that time)".

    Dutch hugs, Kathi
  • dbhadra
    dbhadra Member Posts: 344 Member
    Rague said:

    Can only speak for myself
    I will do anything that I can/that medicine can to stay here as long as possible. I will fight to my last breath. I'm IBC so the odds of me making it to 5 years are only between 25% and 45% (depending on the study). Actually as far as I'm concerned - my odds are either )% of 100% - I will either have reoccurance (100%) or I won't (0%) - so for me personally it's either I get a reoccurance or I don't - I can't 'sort-of' get it. So far I've had Neo-adjunct chemo, Mod. Rad. Mast., Chemo, Rads and will be on Femara for 5 years.

    My Heavenly Father sent me here to learn what I need to and grow before I return. He has given my Doctors (and all I've dealt with in this journey) the knowledge to allow me to fight this Monster - so fight I will!

    How I look at it.

    Susan

    question on IBC
    I'm also IBC, ER+, PR+, Her -. Why are the odds so much worse with IBC than "regular" breast cancer? I keep asking my doctors but no one seems able to tell me the difference between IBC and "regular" cancer.

    Laura
  • dbhadra
    dbhadra Member Posts: 344 Member
    dbhadra said:

    question on IBC
    I'm also IBC, ER+, PR+, Her -. Why are the odds so much worse with IBC than "regular" breast cancer? I keep asking my doctors but no one seems able to tell me the difference between IBC and "regular" cancer.

    Laura

    more on IBC
    Just did some more research and one of the main problems with IBC is that it often doesn;t get diagnosed properly. I was lucky in that - my OB/Gyn was on it immediately - I had the first appointment with her to check out my "rash" on Dec 3 and was in the chemo chair by Jan 7. Just finished my 4th of 12 weekly Taxol and then on to FEC, surgery, and radiation. I will survive! Fight this thing!
    Laura
  • cookie97
    cookie97 Member Posts: 200
    KathiM said:

    I agree completely!
    And, once the choice is made, no second guessing! The "If only's" are quite easy to slip into...my rads nurse said it well "Whatever your choice, it's the right one (on explanation, she added 'for you at that time)".

    Dutch hugs, Kathi

    I have been
    Debating this particular avenue myself; with some fear of repercussions from all the folks around me. My treatments are so expensive that I don't know that I can continue. In my case though am stage IV with mets to bone only. I kinda don't like when I hear or read that because there are people (not refering to this group) that have no mets AT ALL. That means no cancer and never been diaginosed and thank God for them. I have children a husband and wonderful granchildren that I love dearly. My fear is that I don't want to drag them into this bottomless pit of anxiety, depression and despair. I want them all to remeber that i helped with homework, that I made their favorite food, baked their birthday cakes, sewed their halloween costumes and attended every wonderful performance that they did. I was always there for them! Last minute projects etc etc.
    I don't want to expect them to do what I might not be able to do for myself sooner than I am willing to admit. I have been their rock. I raised them all to be very independent, I'm probably too proud to give up mine.
    Time will tell, my opinions could change tomorrow. I am a woman and sometimes very fickle!

    Peace and Love,
    Edie
  • New Flower
    New Flower Member Posts: 4,294

    I choose not...
    After my surgery I chose not to have traetment or take any post surgery meds.

    I have been told the chance of a reaccurance is 20%. If someone told me I have an 80% chance of winning the lottery I would play.

    I hope no one takes offense at my choice and I mean no disrespect to anyone who is in treatment or has had treatment.

    Justine :)

    20% is huge for me
    general statistics says than less than 10 % of population will get cancer. For my age is less than 4%.
    Personal choice of course is the key and time will tell
  • Megan M
    Megan M Member Posts: 3,000
    joannstar said:

    My onc said
    that he used to tell his patients to avoid soy, but he no longer does and it is ok for me to eat it. When I asked (after chemo) what I should avoid for bc, he said sugar & fat.
    Your onc will advise you on what he thinks is best.
    Have a great cruise.
    JoAnn

    I was told to avoid soy,
    I was told to avoid soy, but, my oncologist also said it was impossible to not get some. It seems it is hidden in a lot of foods.


    Megan