My choice--refusing treatment
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it seems the overall consensus is that if lymph node involment in early stage bc is absent, the odds of being alive 5 years from now is around 90 percent. That seems reasonable. It drops to about 70 percent if lymph node involvement is present. It gets trickier due to grade of cancer and a host of other issues that could influence outcome. My issue has always been quality of life that is NOT measured by stats.
I have always been a very active person. NOT athletic IMO, but physical. I always want to push the limits refusing to consider age. I push myself. I like to sweat. If I could no longer be this physical, which someday will be true, I am done then. Everybody on this board by now, has read my love of horses. I had to put down my beautiful mare of 22 yrs a few months ago. It is terrible to make such a decision. My girl was an exceptional horse with 17 stake winners in her pedigree. She was gorgeous. She could move like no other horse I have seen. Fast and unbelievably agile. In the last year, she lost that due to Lymes disease, arthritis and a pasture accident due to age. She became deeply depressed. She lived to run fast everyday. A little wind under tail and she was off. Last winter was horrid. At the end, she refused water for the last few months unless I stood with her to beg her to drink. She would then comply. She wanted to go. I just refused to let her go. I had several vets come and give me advice. Finally my vet, a friend, came and we both just stared at each other. We both knew she was done. My vet did not want to put her down, because she still looked so healthy. Could ‘t we save her? We both knew standing in a stall to rehab was not how a horse should live. Not this girl that wanted to run. She was too injured to be out at Liberty. She would probably never recover. My girl wanted to run, but she could not. I get it. I could not let her suffer just so I could keep her with me. It was like with my dad. He had suffered enough at the end, and his doctor asked us to let him go. My mom and I released him. He was dead in a half hr. Yes, for me it is quality, not quantity of life that matters the most. Anyway.....
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I was diagnosed with invasive lobular carcinoma estrogen and progesterone positive her negative at least stage 2. I refused to see an oncologist so couldn't stage it further. I watched my brother go through 7 years of he'll with colon cancer and have chosen to live with holistic healing. I black salve, do coffee enemas, eat apricot kernels, changed my diet, exercise, pray, had all the metal removed from my mouth, taken as many toxins out of my environment as I can. I feel great, last ultrasound showed all 4 tumors gone. I will have another one around Valentine's day because I love me.
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Good luck with that Keri.
Diane
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Keri, they are gone, no surgery either? I would be cautiously but seriously excited. Remember ILC is good at hiding. Best wishes to you.
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Hi Keri, I’m facing bilateral Mastectomy in a few days. 3 tumors in L breast IDC all under1.5 cm each. DCIS on right. 5 doctors have recommended mastectomy so far. Triple positive. At least stage 2. I took only herceptin neoadjuvant. I have gone vegan mostly raw and growing and eating lots of sprouts. When were you diagnosed? How long before Tumors were gone?
I don’t want to do this😬
Ps91
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This thread titled "My Choice---Refusing Treatment" is awesome! I was drawn to this thread. I feel like I need support from other sisters who chose not to do traditional treatment. The medical community doesn't always give us that support. How awesome to have a place where those of us who have chosen not to do traditional treatment can go and chat!! Thank you to whomever started this thread!!
If we don't agree with one another on what treatment or lack of it someone decided to do, it isn't our job to question what they chose to do, just a reminder. That is their choice. Keri, I support your choice and right to choose not to do traditional treatment. I do wish you the very best in your treatment going forward. Thank you for posting here. If you want to share in the future, please keep us posted on how the scans go. I know I find most of the time I get pretty good support on this forum. Sometimes not though. We are here for you.
I too did not do any treatment....except surgery. I chose no radiation and no hormone blocking pills. My choice. I saw the studies and questioned whether my recurrence rate would really be that much more if I did those things. My MO agreed the data is conflicting with stage 1, it isn't alot higher for me. Maybe it is for others, but for me it was the right choice. He supported my decision as long as I go see him often (every 6 mo to start with) and get diagnostics often (not doing mammos as they didn't catch my cancer, doing ultrasounds every 6 mo). So I am doing that. And made lifestyle changes....eating super healthy and I am a active person. Doing some fasting as well. I am feeling very good!!
I wish each of you the very best going forward! Remember we are here for eachother. If there is another thread like this (this is a old thread) please let me know. I need support from others like myself who chose not to do traditional treatment.
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PS91: My situation was different than yours.....did they not give you a option to have a lumpectomy? I was not stage 2 or higher so maybe that isn't a option. What grade is your tumors?
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Hi
I am new to this site, and am meeting with a surgeon on Friday.
I will have the lumpectomy, ? Radiation no chemo, can’t bear the thoughts of putting poison in my body.
Not sure were to find peer review medical articles on the research done on those that opt for no chemo, life expectancies etc
Any sugge
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Hi everyone. Not sure if I already posted on this thread but wanted to let you know that I only had surgery as well. Refused anti hormone treatment from the start. Over 3 years NED. Good luck to all...
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It’s a crapshoot but it’s your crapshoot. I decided to take Arimidex and then was switched to Tamoxifen. I am 7 years out this month.
Idk if my MO would have supported my decision if I had elected not to take anything. I am, however positive, had I had debilitating side effects with the drugs we would have had that discussion.
There are no guarantees either way. I do know ladies who have refused the drugs and still have NED after several years. 5 years has become the milestone and also when my MO decided I didn’t need to continue taking Tamoxifen. I was IDC, Stage 1b, Grade 1. I too had a lumpectomy but also had 33 radiation treatments. My Oncotype score was 11. I never considered not doing the radiation.
Diane
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Nerak,
The common calculators like lifemath & predict are data validated and they both include statistics on life expectancy for surgery alone.In fact they *start* from the premise of surgery alone & calculate additional benefit from chemo and hormonal treatment. I believe both of those begin with the premise of either a mastectomy, or lumpectomy+radiation.
http://www.lifemath.net/cancer/breastcancer/therap...
http://www.predict.nhs.uk/predict_v2.1/For the lumpectomy, the benefit of radiation (& conversely the additional risk incurred by not having the treatment) can be estimated here: https://www.tuftsmedicalcenter.org/ibtr/
WIth radiation lumpectomy generally has the same overall survival as mastectomy. Without it, survival rates appear lower. Mastectomy *might* be a better choice for someone who will not be taking other treatments - but I suspect that might depend on the size and grade of the tumor & I haven't come across such specific data.
There are different nomograms for calculating radiation risk for older individuals (66-79) so shout out if that applies to you.0 -
“ Not sure were to find peer review medical articles on the research done on those that opt for no chemo, life expectancies etc”
Heraklion,
I am not sure that many, if any, such studiesexist. I am not a researcher or medical ethicist, but I’m not sure of the ethics of following a group of people who choose not to follow medical advice. I hope someone with more knowledge will clarify this.
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I had a lumpectomy and then breast reduction surgery to lessen my chances of complications from radiation. Doing the reduction allowed the RO to let me do the shortened course of radiation called hypofractionation. I had 15 whole breast treatments and 4 Boost treatments. 19 days in all. Radiation for me went very well. Not much in the way of skin reaction or fatigue until after it was finished. Now, one month past, things are pretty much back to normal. This week, I have to see the MO to discuss Tamoxifen again. I had an Oncotype score of 27, so, on the upper side of intermediate. I am 55 years old and otherwise very healthy. My MO put me in the under 50 group to determine protocol for me because I'm a young 55. Normally, that would make me happy, bit for this, it meant she also highly recommended chemo for me. I refused it. I'm a Health Educator by training and profession and I have lived what I preach. I am baffled at having cancer and mad. But, that being aside, I'm also confident that if I had poisoned my body, the one I've try a lifetime to take care of, it would not only destroy what healthy cells I have left in there to fight, but it would also destroy me and what I believe in. I also felt peace choosing no chemo. But, because radiation went so well, I thought maybe I should have done the chemo. I told a nurse this at radiation one day and she said, "Would you still like to do it now?" I thought about it briefly and thanked her for asking because faced with the choice of going through with it even after radiation, I said, "No". My first decision was right for me and at that moment I knew it. Peace again.
Since I last saw my MO in May, she has resigned. Goody for me. Great timing. Now, I have to see someone new this week to defend my not wanting to take anti hormonals once again. I don't know what to do, but the side effects. They are not side effects any of us want. I thought about giving tamoxifen a try, but, some of those SE s can show up without you knowing and by the time you know it, it's too late to turn back. I think my mind is made up to live my life without more treatment including drugs. I realize it could come back and it probably will, but I don't have kids to watch grow up, only me to care for. If I become disabled due to some stupid drug like I saw happen to my mother, it will be nursing home for me and I just can't handle that. The oncotype score is what sent me into depression. They all thought my number would be low. Surprise! I'm always the outlier. I think that test is pretty accurate. But it's funny how it also will only give you your risk with the drugs factored in. I too would like to see studies with those who chose not to treat. I'm so glad I found this forum and thread. I'll check back in and tell you what my new MO has to say about it.
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It’s a tough call Mary. If you can live with the gamble of not taking the drug without second guessing yourself a zillion times I would just go with that decision. Obviously there are women who have taken the drugs and still had a recurrence. My friend’s daughter decided not to take Tamoxifen as prescribed because she didn’t want to be thrown into early menopause. She was in her early 40s when she was DX. There is still NED some 3 years later.
Not everyone suffers from unmanageable side effects. I didn’t. Just saying
Whatever you decide remember it’s your life, your decision.
Good luck!
Diane
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My fear of stroke outweighs my fear of cancer. One of the possible side effects from tamoxifen is clotting. The AI 's cause bone loss. I do not want to be disabled. I know a friend who had a stroke on Tamoxifen. Another friend had a pulmonary embolism. Although my doctors do not think I'm heading for a stroke, my mother, sister and grandmother all had young strokes. My sister has been in a nursing home for 11 years. My grandmother in one for 16. My mother would have also lived in a nursing home many years if we had not cared for her at home. This is why the thought of taking tamoxifen bothers me.
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Mary there is a topic you might lik called Long Term “High Ocotype Test” Survivors, 17 pages.
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Thanks!
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OMG that’s horrible Mary. So sorry. Clotting is a possible side effect. Actually I had a blood clot when I was 16. A girl kicked me in soccer(accident). The doctors were stunned I had had a blood clot at my age but they treated me with a heat lamp and blood thinners. I conveyed this to my MO but she said it was a long time ago and I’ve had children. Not sure why that mattered but it did.
Diane
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I don't know why having children would make a difference either. My friend who had the pulmonary embolism was 2.5 years in on Tamoxifen. Her doctor put her on blood thinners until she finished her 5 years of tamoxifen. She is off of both now and doing fine. The whole thing about these side effects is that the "fix" or management of the side effect is another dang drug with its own set of side effects. I just don't think I want the worry. It's hard enough worrying about when the cancer is coming back. I don't want to have to worry about keeping an eye on the side effects which may be causing something worse.
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Nerak1956, exbrnxgrl__
There is a study, a paper done from reviews of medical records, published in a respectable medical journal, covering 129 years of entirely untreated cases, comparing interval mortality rates by cell grade. Understand, since around the time of World War One, fairly few breast cancer patients with access to treatment (from the discipline we call Conventional/Modern Medicine) have gone entirely untreated. Understand too, that for the period covered in this review of medical records, any/all breast cancers were breast cancer; there were not then known the breast cancer "type" distinctions/classifications in use now.
Mouse the page images to see them expanded.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1925646/
Br Med J. 1962 Jul 28; 2(5299): 213–221.
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Peace and Blessings, All.
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Hi Icietla,
Thank you very much for posting this. Very interesting review.
Sending much love your way. I hope you are feeling as well as can be.
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Thank you icietla! I must say I was a bit surprised to see this, but I see it goes from the late 19th to the early part 0f the 20th century. I wonder if it would be ethical to do this today? There have been so many changes to understanding type/sub-types of bc and resultant tx. I haven't read the whole article but am curious to see how the untreated patients were followed. Tonight's reading material!
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You are welcome.
I lost a lot of time yesterday for having to medicate myself for severe dizziness -- most likely unrelated to my cancer -- and then sleeping it off.
Today we are going to execute our new wills.
Tomorrow I am to meet with my Oncologist to learn what all has changed about my cancer (one site was biopsied last week) and to learn of my new/next treatment plan.
Love to you all too.
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I saw my new (interim) MO yesterday. My MO resigned. We discussed Tamoxifen again. I did not get the prescription. I was feeling okay with the decision not to take it. Then, the "friends" who mean well start making their case for doing it. It's not like I haven't rolled this around in my head over and over again. My fear of clotting and strokes outweigh my fear of cancer. I also don't like the idea of having a transvaginal ultrasound every 6 months to a year.
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Marymc86, be aware that cancer itself tends to promote abnormal blood clotting. Please read through this thread linked here. Best to generally look after yourself as if you were a person known to have abnormal clotting already -- like, do not do extended sitting with your legs crossed over one another and bent; in your long travels, stop often to get out and moving about often to stretch your limbs and promote your circulation; etc. You might wish to discuss with your Doctor any other medicine/s you should (and/or should not) have in light of this other serious hazard presented by cancer.
https://community.breastcancer.org/forum/78/topics/866085?page=1
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Peace and Blessings, All.0 -
Marymc86, the TVUSs every six months aren't too much of a bother. What troubles me are the results! The medication reduces, but doesn't remove risk and it does increase risk of some other issues. If you are a numbers person you may want to seriously weigh the stats for your personal recurrence risk against those of the serious side effects. I respect your decision either way!0 -
Mary, I also did not want to take Tamoxifen and was worried about side effects - mainly being in early Menopause, I am 42. Not a big fan of traditional treatments. I decided I was going to try it and see what happens. Started in February or March 2018 and I waited and waited for side effects and still have not experienced anything. My oncologist said you are so lucky to not have any side effects. And I do know that I could have delayed side effects, I don't even want to list them. So far, I am taking it. My oncologist said that my recurrence risk would be reduced by 50 %. I do have have small kids, glad they have a mommy.
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Hi AliceKo. I'm so glad no side effects for you. I'm still on the fence, but not taking them yet. I don't see the Oncologist again until December.
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I'm not refusing treatment. Just the kind that the medical professionals are trying to force on me!! I was diagnosed in April 2018. I thought I was having another simple removal of a ductal papilloma, which I have had done 3 times prior, my first at age 25, and this time it ended up being cancerous. The surgeon wanted to take more tissue, as my margins were not clear of cancer. He also wanted me to do chemo, radiation, and hormone therapy. Now that I know that I am dealing with cancer, I have refused to go back, so that he can take a "little more" and then a little more, etc. I have kicked into high gear with lifestyle improvements. My lymph system is under functioning or this never would have happened. My blood-work showed several signs of poor health too, like high liver enzymes, low vitamin E, high bad cholesterol, etc.
On May the 1st. I started my routine. I started eating/drinking organic only, juicing daily, coffee enema every morning, taking numerous herbal supplements, rebounding for exercise, rubbing home-made salve on my breasts and arm pits every night, food safe frankincense drops under my tongue every morning, Chaga tea 3 times a day, meditating daily, deep breathing, trying my best to stay away from all stressful situations, etc. In 4 months I have lost 30 lbs, feel better than I have felt in years, and have a much more positive attitude than I have had in a long time. I will be getting my blood tested again shortly and will do comparisons on it. I will keep updating here. I truly believe that this will work for me and if for some reason it does not, I will also update that here. There definitely is not enough scientific testing in the field of natural healing remedies but I believe that this has no barring on the effectiveness of them.
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Hello, everyone; it has been a very long time since I have checked in with you. It has been a very busy summer with lots of coming and going, and computer breakdowns to add to the mix. I hope that all is well with you and say welcome to new visitors to this forum. All is well here; as of August 18, I am still NED for cancer; my tumor markers were back up to where they were in April, though they were down a bit in June after repeat scans. So, though they were back to April values, the MO has decided that maybe that is "my normal". We will seen what happens when the next scans are done in mid-November; interestingly, I will get those results exactly one year to the day after I started radiation therapy. Though I consider that my cancer "was gone" as of my lumpectomy date in July 2017, the MO goes with October 30 as the "anniversary" as that is the first time she saw me.
We have had LOTS of damp weather and cold temperatures (at 2C with a "real feel" of -4C here today), which is so unusual for September here and, after a very dry summer where the farmers were mourning the lack of rain for their crops, now they are frustrated with all the rain over the last two weeks which is hindering them from getting their crops off. Unfortunately, there is nothing they can do about it.
Will let this do for now, and will be back soon; must do some reading to catch up with you. Have a great Fall. Hugs!!!
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