My choice--refusing treatment
Comments
-
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
0 -
Hi twinbabes, I just checked monetwaterlillies profile. She hasn’t been here since last Julie. How are you doing? Are you in the US? Did you contact pipers_dream? Sorry you are out here alone. Have you been to other topics. There are more on alternative treatments
0 -
I felt that way..at first..
I was sure God had chosen to miraculously heal me ..but He had other plans.
I would walk by the mirror, to check if it was gone..nope..
His plan was to be with me, during the storm..biopsy, surgery and rad x15.
I weighed my options, and was hesitate but fearful I would regret the decision, of no treatment, and it would spread with no choice.
I feel 100 % better..my sadness is gone, my body is getting stronger, and my immune system is gearing up..I have auto immune psoarisis, high blood pressure, and diabetes, I am 63.
I am cancer free with lumpectomy, with no cancer in lymphs, after surgery
I take a lot of immune booster vitamins..a lot.
Just take it from me..you will not regret the stress alleviated by not knowing.,what if.
Blessings
0 -
i used the best thing i found to help
Walmart..spray aloe with lidocaine
15,000 mg liquid vit E
Hardly any scarring.
Blessings
0 -
thanks marijen for the info not sure how to check on someones profile never done it before im not real good on the computer side of things im learning as i go. I sent a pm to piper but no response she must be doing well i would assume, Im in australia and live outside of a city region, so very few people (especially like minded forgoing treatment) who i can chat to, everyone is pro treatment. I have looked at the holistic topics and they seem interesting with the info and ideas their giving out, I hope your your well and happy
0 -
hi shanendoah thanks for the words of encouragement, at the moment im doing well without any treatments 9 years down the dusty track I am living my life my way, but who knows what the future holds, it may incorporate some intervention down the track, but at the moment so far so good. Im glad for you that things have worked out just great i hope it will continue, stay happy and healthy
0 -
Hi, Sara536--
You asked about the follow-up care that those who refuse hormonal treatment receive. I am a hormonal "refusenik" from the very beginning (5 years ago). I did see an MO once, who ordered the Oncotype test (hoping, of course, that the results would make me change my mind). But my low number didn't help her at all, and after a courtesy call to tell her my decision, I went my merry way without her, but not without a follow-up plan. Earlier, when I told my surgeon of my intentions, he offered to do my follow-up care if I wished--I did--and so did my rad onc. So for 5 years, I saw both of them--in tandem for the last 3 years--for clinical exams and imaging, which the surgeon ordered (MRI's at years 3 and 5, plus yearly mammos). My PCP orders the usual annual physical blood work (CBC, TSH, etc); since I'm not on the hormonal meds, I don't need an MO to keep track of drug side effects through "special" blood work. An additional wrinkle at my age is Medicare, which only supports a GYN visit every other year, so I will see the surgeon for clinical exams in the off (no-gyn) years.
By the way, I just passed my 5-year lx anniversary--and the surgeon declared me perfectly healthy and cancer-free. Wise food choices, regular exercise, and shedding 15 unneeded pounds--combined with gratitude for 7 decades of a good life--worked for me!
Hope this information helps you. Good luck.
0 -
tgtg, I think you did the right thing to say bye-bye to that onc. Given your stats, the benefit of the hormonal therapy would be incremental. According to cancer.math, with hormonal therapy, your 15-yr risk of dying from BC would be 2.6%, without 3.8%. Either way, that is a small risk. For me the equivalent numbers are 18% with hormone therapy, 26% without. The greater the overall risk, the greater the benefit.
0 -
Be interesting to read of ladies with triple negative breast cancer doing nothing but surgery.
0 -
Dear Monets Water Lillies,
I'm not sure what your reasons are - but I can share my journey.
I am lucky enough to have an oncologist who is going to be working with my CAM Dr. - and is happy to do so. In her office I have met a few other women who have BC. They have looked into alternative therapies to assist - and one of them was thrown out of a clinical trial, because her tumor has shrunk without conventional treatment. If you want resources, pm me offline. I will share that the first person I saw after my Dx was a certified nutritionist who explained that a ketogenic diet can assist in starving what I call "the sucker who's having a party in my breast." My oncologist is OK with that. He's OK with DIM supplements, minerals and herbs, even mistletoe just not high-dose vit. C or certain B vitamins during chemo as they interfere with the standard drugs.
Personally, had I no children or husband - I would be going alternative the whole way. (But, then I'm a mom who had twins naturally and breech and without an epidural....and I've always tried to stay away from allopathic medicine as far as possible.).
Find your path and believe in yourself. Treatment or no treatment. Natural treatments or medical. Find your combination, your way to walk this journey. And never forget that miracles (or what the medical peeps call "spontaneous remission") can happen, too.
I'll be keeping you in my thoughts and prayers.
Holly
0 -
Niru, you're right about cruciferous veggies..make sure you eat lots of broccoli sprouts, as they have a significant anti carcinogenic effect.
There was a study whereby breast cancer patients who ate at least 5 fruits and veggies per day and got 30 min physical activity 6 times a week had significantly lower rates of recurrence.
Flax seeds do not have enough estrogen in them to boost our estrogen levels and are in fact good for preventing cancer.
0 -
Momine, you hit the nail on the head, and that is exactly why I personally am refusing anti-hornonal treatment. I did the cancer outcome calculator. My risk of recurrence is 8 percent w/out tamoxifen; 4 pct with it. Not enough of a risk reduction, IMO, to warrant the risk of uterine cancer and other side effects.
I've totally changed my diet and am doing acupuncture, massage therapy and working on an exercise plan. I feel good so far.
0 -
Swg, yes, I do think there is a fairly large grey area with the hormonal therapy. It is a calculus that has to involve the patient's specific risk and benefit in terms of survival, COL, age etc. For me it is a no-brainer, given my high risk and relatively young age at DX (48). But that said, I was sufficiently leery of the tamox SE profile to make them yank my ovaries (and uterus) so I could go on an AI instead. Some people find that extreme, but my mother had ovarian cancer and her sister had uterine cancer. I was close to menopause anyway and had giant uterine fibroids that gave me problems. Besides the cancer was ILC, and studies have shown that tamox is less effective for ILC and that an AI works better. The hyster pathology showed some cell changes that were not yet quite pre-cancer, but concerning enough that I have zero regrets.
0 -
Hi everyone...can’t remember if I already posted on this thread but I only had BMX with no other treatment. I’m almost 3 years NED. I only see my BS every 6 months. Good luck to al
0 -
Broccoli sprouts are the easiest thing in the world to make. You just get a jar and a screened lid. Rinse the ORGANIC broccoli seeds twice a day and tip the bottle upside down. Then put them in the fridge. Even my kids eat them as salid
0 -
exercise guru,
Thankyou! I’ve been looking for easy, fast, no heating, no chopping, no fuss ways to get a variety of good vegies in first thing in the morning instead of realizing at the end of the day that I’ve shortchanged myself.
0 -
Am glad to find this thread and like-minded people. Background, some of you remember me from years ago. I have been back and forth, trial and error on treatments. My first choice was DIY for 5 mo. Then I had surgery but only that and DIY alternatives for a few years. Then found an oncologist that respected my actions and choices. I did concede to go on hormone therapy Faslodex / Arimidex. And back to DIY. And fail mostly bcz I was resting on my laurels. And then Ibrance / Femara. And it quit and bit me in the arse. Then Xeloda and it never had worked it seems, per one onc but others said mixed response. The last choice was for 8 loyal months and I was afraid to let it go since I had been almost suffocated by the cancer masses. But I have let go. Took Aromasin for two weeks, stopping or not, I don't know. It may not be best w the alternative choice I have made, researching more now.
Through it all, I forgoed any chemo infusion. Radiation too except when the cancer masses were closing off my airways in two places. My oncologist from year 3 until May 2017 finally left the area to train under a holistic doctor so he could become a better oncologist, he had just seen too much. I feel like he spared me suffering and anguish though because he was never in a hurry to get me into chemo or radiation, my system has proven far too sensitive for the usual anyway.
The next oncologist I fired in one appointment told me to get in touch with hospice and basically had nothing for me but palliative tthat would certainly do me more harm than good, esp when I was so weak after Xeloda.
The latest oncologist I went to at the end of 2017 asked, did you this? and that? at the beginning? and I said no. He said that is the standard of treatment. I flippantly said, I am not going to be your standard patient. I think we will get along pretty well, regardless.
So I stood back in the last few weeks. Hospice? Palliative chemo or radiation? Or alternative? Palliative w alternative? Complementary? What?
Two nights ago I decided on alternative with palliative and go ahead and get hospice set up and settle my affairs and get the notebook ready for in case I die so my family will know where everything is.
Embrace it all, wtheck? Why not.
Prepping will be done if I die and done if I don't.
I am at complete peace with the decisions I made and already ordered the alternative choice. I am so glad Hubby is behind my choice.
He inspired me when we were at the counselor's office at the cancer center. I asked him how he was doing with this acceptance of hospice and getting everything set up. I was still thinking chemo or radz that day. Hubby said to me, I still think you can beat this. I knew he meant w alternative bcz we know at stage iv the chemo and radz is not going to "cure anything" and may just help it all along for worst coming to worst. And he was being real w me. I said, well that is not giving up, it is continuing to try. I knew I would do both, prepare for death and the end while still trying. Palliative will be needed too, in some ways.
The next night I got out a book I have read several times and came across a treatment that I had always thought I would try but in getting caught up in the conventional treatment, I never had. And I decided that was the one, it complemented the ellagitannins I use now, I could do it, afford it and so I ordered it with him cheering me on.
I am glad to see this thread has 5 pages and remains active. This will be a safe haven for me.
0 -
SWG are you taking DIM or curcumin?
0 -
I am so happy to find this board. I was diagnosed just before New Years. On 1/11/18 I had a lumpectomy and sentinel node removal. Node was clear. Margins clear 1.2 cm mass, stage 1 grade 2. . I have yet to meet with my oncologists but I am leaning heavily towards no further treatment. My reasons are quite different however. I was on a medication called Prozac for MANY years , prescribed by a doctor that assumed I had a panic attack, I knew all along it wasn't a panic attack, but he kept telling me that is you feel better and the issue has not come back why not just stay on it. I did feel better. and I had balls of steel..LOL. No one could piss me off or if they did they got a dose of those big balls..LOL. But over time and through menopause I became very sick. Constant headaches, neck pain and slept some time for 4 days in a row, napped EVERY day (since being off it, 2.5 years I have had ONE nap and that was after a night of a few cocktails). I became depressed, no doctors or specialists could tell me what was wrong with me!. The worst part of this went on for nearly 7 years. Then my youngest son became a very troubled asshole (sadly still is) and my new doctor asked if I wanted to up the Prozac because I had a very hard time with the whole son thing, I said sure..why now. In 2 days I knew why I had been sick! I slowly got off those meds, not slowly enough, but got off them. Physically I felt and still do feel AMAZING! Mentally I still have issues dealing with my son, but just before my diagnosis I became OK with it all and it was not going to ruin any more of my life. I just became scuba certified and we have a trip to the Bahamas in July, it is a specialized trip for diving. I had decided I will get on with my life and start enjoying it instead of trying to fix something I cannot. I have a 1 year old granddaughter, who I will see regardless of what he says. His GF loves us and wants us in her life. His lies no longer matter. Sorry this is so long BTW. So to make this long story short, I have been in bed for 7 years, could not make plans at all because I had VERY few good days, then 3 years of stress and anxiety over my son and his stupidity . So I have no been able to enjoy life for 10 years roughly. I will be dammed it I am going to take medication that will put me right back there again. I forgot what it was like to feel so good and I really really like it more than you can imagine. I have stuff to do. I plan to skydive in the next few months, lots of scuba, just live and do the things I couldn't do before. If I do treatment I will not be able to do these things. I will be 57 in July..5 years of meds in not an option. I welcome any thoughts, or even criticism of my choice and my reasoning, which are more (typical ones we all have) . HUGS to all going through this and these hard choices
0 -
I've made a similar decision (after lumpectomy and radiation). Besides, we were told that five years isn't enough ...you need another five "studies show". Then they backtracked to only two more years because "studies show". Did studies really "show"? or was it that too many of us said, "Hell no!" and they realized they were scaring away customers? I find it extremely difficult to trust doctors who's income is so closely dependent on the volume of their prescriptions. Maybe if the MOs weren't making their money on the mark-ups they charge for admistering the infusions of the drugs they prescribe... Yes, I know, you get estrogen inhibitors and Tamaxofin from the pharmacy but MOs will need to infuse you with drugs to protect (or possibly destroy) your bones, not to mention selling you acupuncture and massage in the convenience of their offices to help alleviate the side effects of the drugs they prescribe (if you can aford it). With so much money being made on the drugs currently offered to hormone positive women, I doubt there will be acceptable alternatives in my lifetime. I do have the luxury of being old so I think I'd rather spend my time enjoying my family instead of suffering with symptoms caused by treatment. I did see several MOs and they were all lock-step with the drug company recommendations: “standard of care" recipe. They would probably be run out of town if they strayed. Mabybe they will be replaced by computers and drones when Amazon goes into the business.
0 -
I truly believe that IF I had gone w radiation and chemotherapy from the beginning in 2011 I would be dead now. My system is way too sensitive. I did surgery then waited. Then hormonal and waited. And yes, I have cancer that is threatening my life now. But I own the decisions I made as I believed in my going slowly into the dark and finding my way through. This does not mean it is over for me, nor that I will decide no further tx conventionally, I remain to make decisions as I go. But for now, I am still here and I am still trying in other ways. Just know like the last two posters, I cannot go back to that horrible non-quality-of-life I was in for the last entire year and two months. Unless I am really dying, I must protect the energy and wellness I feel now in the recovery I am doing after being on a chemo that was not even working.
Godspeed to us one and all (grin).
Diane
0 -
I'm new to this whole BC thing and wondered is anyone here HER2+ and refused chemo etc? My understanding is this type metasticizes more quickly.
0 -
Deb, have you looked into herceptin alone as a treatment. They almost always recommend chemo with herceptin.
0 -
Debsmisto, I am ER+, PR+, HER-, Because I have a low oncotype score, I was not offered chemotherapy and never had to make a decision about that. I’m almost 73. My decision is based on my diagnosis and a short time on anastrozole which was excruciating painful and debilitating for me. (There are people here who have the same experience as me and some who fare better.) I cannot afford massages and acupuncture on a regular basis to alleviate pain. I already have more arthritis than I want. I know only what I have experienced first hand and am not suggesting anyone do the same. Since this thread is for fellow refuseniks, I feel this is a relatively harmless place to rant. I was already beginning to get my bucket list in order because of age when I was diagnosed, I'm sure I'm looking at this differently than someone younger who has children still at home. My priorities are different than they would have been earlier. When my kids were little I would have eaten nails to stick around longer. I've done surgery and radiation but I balk at anastrozole. I've pretty much stuck my head in the sand now on that subject. (I understand that about 25% of people prescribed aromatase inhibitors or tamoxifen do not continue with it. Besides muscle pain and joint pain there is increased risk of heart attack, strokes and blood clots. Those already run in my family.) I asked my surgeon if she will follow me and will be seeing her and my R O on a regular basis. I haven't stuck my toes very deep into complementary or alternative treatments yet - still just jumping up and down screaming outrage. I hope you can find out if anyone with HER2+ is refusing treatment and connect with them. This was a good place to look but maybe you could also start a new topic to bring it to more people's attention. Then, keep bumping it up to the top of the list if you get no response. Best of luck to you:)
0 -
Sara, Bluebird and Hunny, You go girls !!! I luv your fighting spirit, dont give up and dont lose sight of the whats best for YOU, no matter what that is down the track. Its your life ! Live it well, and keep in contact with us all.
0 -
I just had a conservative lumpectomy in April 2017 for a 9 mm tumor at the 3 o clock edge of the left breast. It was really more on the chest wall than than in the breast. Refused radiation and hormone blockers because I have advanced liver cirrhosis and plan to check out in less than 2 years. Considering how compromised my quality of life is already, if it got any worse I would end it now! Use low dose [1/3 of a zetpil rectal suppository] melatonin, a very concentrated CBD oil [ primarily for my liver but it does double duty for cancer], mostly vegan organic diet. Doing certain forms of QiGong [Pangu Shengong] and see energy healers.
0 -
Sara...my doc at a major NYC university hospital told me more like 50 percent do NOT complete the 5 recommended years on anti hormones. That stat includes both Tamoxifen and aromatase inhibitors. I'm not sure how this could be considered an effective treatment with those numbers. Of course there are no follow up studies on those 50 percent. We need to speak up for better treatment options!
0 -
Well, Thursday is the MO appointment. I am walking, eating, in very little pain unless I overdo it. I know the option for Tamox or another infusion will be presented, this onc is very traditional. My primary who moved away was not. I already know I will not take up the offer. I am using Aromasin for hormone control And ellagitannins for high oxidation and for their ability to cause necrosis of cancer cells. The AI is easy for me, so I will keep it.
Found the Afinitor chemo pills I had in rx from the onc I fired. They were lost for two months. I never intended to take them when I realized the Xeloda had been causing my low quality of life, not the liver lesions..... but still an earthshaking loss at the cost of what ??? $15K w/o insurance maybe. Found them in a purse in a closet. And with this found the one-month rx for Aromasin. Relief. Now to find out what the doctor wants me to do with this Afinitor.
So I am sticking with the choice. If I want to then I can go off the Aromasin on the side. But it has been do-able. And this keeps me in with an onc on my side. I wish my insurance paid for naturopathic doctors that truly understand alternative cancer treatments. I feel like I am straddling the fence precariously.
0 -
hi abigail48, just thought id check in on you, to see how things are going? You mentioned you'd had no conventional treatment whatsoever, Im the same, and so far so good. Are you doing anything regarding alt treatment ect?
0 -
I continue to get stronger and eat better every day since I am now two months off the chemo pills. Only on hormone control. At the MO appt, he did not offer or want me to take a more aggressive approach still. He said I am still too weak for that to be an advantage though the progress in strength could open the door next month. I am planning to continue as I am now though but did not want to say too much when I didn't have to at this appointment. I am protecting my quality of life as it stands now. Hindsight is nothing and everything. Have to stay in the moment.
0
