Miracle 6 months after diagnosis
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1redgirl and LORI - thank you for posting your stories and details. I completely agree that you have survivors and recurrences on both sides of treatment - conventional and non-conventional - and feel that we have a right to make the best decisions for ourselves and support one another, vs one side trying to bring the other side down. I think there’s a middle path too as a 3rd option - do the right mix for you that may be an integration of both conventional and alternative means. We should just think of it as having all these tools in our arsenal to survive - western medicine, eastern medicine, diet, exercise, lifestyle - and we pick and choose what is best for us based on our own personal risk/benefit scenario and what side effects we are willing to tolerate or not for ourselves.
On that middle path, I did surgery and radiation, but no chemo and no further axillary node dissection, yes to tamoxifen which I’ve been able to tolerate well with no SEs, lost over 20 lbs so far, still eat meat and protein but trying to eat more veggies, and exercise more. I’m a year out, I don’t know what the future holds, but I know I feel great and like myself today. Ultimately that’s the most we can know is how we feel today.0 -
Yes we should be respectful of people's choices to go the alternative route, and yes this should be a safe place to discuss these things without other posters criticizing those choices. I agree. If you dont like or believe in alternative treatments then dont read this thread/s. BUT the point is that the OP claimed to have cured herself. "Miracle 6 months after diagnosis" is the name of this thread. Purple Hair can love herself into the universe and long may she continue to do so. But no, she did not cure her cancer in 6 months. This is not an alternative therapy discussion, this is a lie.
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irrespective of terminology primary tumour gone without conventional treatment and one third decrease in lymph nodes is an amazing result.
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Steve Jobs tried the alternative way first and when it failed went the conventional route but it was too late. He made a point in his speech of telling people NOT to do what he did because it cost him his life. It may have ended up the same way - we will never know.
IF only we could be cured at all much less in 6 months. Sorry that’s a pipe dream.
To each her own but it’s really risky.
Diane
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This is the internet. Anyone can claim anything and not have to show proof for some people to believe the claims.
We are all allowed to question. We can ask what are the true facts amd what is the motive. I don't have to believe someone's post. I'm allowed to be discerning and see the post for what it is. Being on this forum over 8 years, I see sincerity and I see bs.
Usually a new member starts out by asking questions. They're looking for answers, information, support. They share and compare their diagnosis, treatment & medical experiences with current members. Sometimes they find a closer connection to one or two members with whom they find something in common on a personal level.
What Purple Hair does is come on to the site already having all the answers. She doesn't get to know anyone else. She doesn't seem to need support. She expects to gain a following by her miraculous claims. What better way to drum up viewership for your blog on breast cancer than posting about it on a breast cancer forum? Maybe she thinks she's the Pied Piper and we're a bunch of dimwitted rats who will follow the sound of her flute.
Truth stands up to questioning, Purple Hair hasn't posted in over a month, maybe the aliens who messed with her tv reception abducted her. Maybe she's out living the good life. I don't wish her ill will. I just don't believe her,
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You are right purplehair is not a participant on this board.
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I don't believe her either. We are all dealing with the same insidious disease and what we need is support not the fairy tale she is advocating. Having this disease is not something to be trifled with. We all pray for a cure. Maybe some day.
Diane
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Another thing I question about Purple Hair’s post: she says she turned down conventional treatment. Then says a CT scan at 6 months showed miraculous improvement. Who is the doctor that ordered this CT? If she isn’t seeing an onc, who is ordering the CT scan? If you’re bucking conventional treatment, I don’t think an oncologist is going to keep you as a patient. Women often complain they have a hard time getting CT approval, so how does PH manage to be scanned when opting for alternative treatment?
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omg true divine! No doc is going to order a ct if they passed on tx. I'm only being monitored by my mo because I'm on tamoxifen after going through chemo and rads. If I say no more then why would she keep me as a pt. You're sent back to your pcp. No one does routine any type of scans unless you are in for a suspicious symptom that could be cancer unless you are stage 4!
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Artista928 that's not entirely true. While I think the original poster of this thread is unconventional (that's the nicest word I could come up with), he or she may still be seeing an oncologist.
My MO knows I'm not very likely to stay on tamoxifen and has already said he will not ditch me as a patient. So there's a data point of one person whose MO would continue on as the MO even if not on hormone blockers.
I still think the OP is out to lunch though.
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My mo told me so. Some mos ditch you after 5 yrs of bc. You went through tx. Would she keep you if you did nothing but alternative? But either way, no way would a doc order a ct unless you go in presenting with a suspicious symptom that could be cancer. This poster is more than out to lunch..... :x
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edj, your onc prescribes the tamoxifen, perhaps referred you to breast surgeon, maybe coordinated your radiation treatments with radiologist. (Thats how it worked with my onc). So you have medical history with the onc, the onc looks at your chart and knows what conventional treatment you've had. For your onc to continue to follow up with you once your treatment is complete is different than a person who chooses to forego any medical treatment up front. There's no medical history to tie onc and patient to each other. My onc puts a summary of our visit into the computer when we wrap up. Would an onc for PH put, “patient continues to reject conventional treatment. Next visit scheduled for three months with scans in six months." I personally don't think an onc would find this thebest use of the doctor's time and capabilities.
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I ladies. I have read some of this thread, not all. But just wanted you to know that my MO supported my decision NOT to take Tamoxifen OR have radiation. He wanted to continue to follow me. I was impressed by that. He really cared about me. Anyway I also have diagnostics every 6 mo....ultrasounds since my mammogram didn't show my cancer (too dense of tissue). So I only get ultrasounds but I will probably in the future also be having MRI once in a while.
So it is possible to be followed by a MO and not be ditched by them if you choose not to take meds or have radiation. Also if I wanted any other scan it is possible he would order that.
I have chosen to be followed from here on out with a onco breast surgeon who is a associate of my onco breast surgeon. My BS is too busy right now with her practice. So this is how I am going forward with my care. But it isn't because I was dumped by my MO.
Just wanted you to know this IS possible although I am suspicious too that purplehair may not be a real person....I agree with you all there.
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Jons girl, you at least had surgery for it. That's considered treatment. OP did 0. That's the point.
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Jons, lots of women continue with ultrasounds. It would seem you'd only go on to an MRI if your ultrasound showed something that needed additional imaging. If you wanted further scans, possibly your doctor would order it but your insurance would approve only if there was a reason.
Your diagnosis differs from PH's. She says hers is aggressive stage 2b, her2+ with lymph node involvement. If you presented with that, do you think your MO would be okay you opted out of radiation or chemo? Would you be okay with it? Your MO has seen a lot of cases so based on his experience, he believes a lumpectomy only was a good choice for the type bc you had.
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When I told my oncologist I would not be doing chemo despite my oncodx score of 34, I asked him if he still wanted me as his patient. He said yes of course.
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Meow, but you had some form of treatment?
So are some of you saying some women who choose alternative treatment for breast cancer—no surgery, chemo, radiation or hormonals— none, zero—-still see an oncologist? Even though they don’t believe in conventional treatment for bc?
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I did AI drugs 4 years that is it. Still see oncologist once a year.
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surgery is tx. Anti hormonal is tx. Op did 0. So no tx.
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I was responding to jons_girl talking about an mo not ditching patient because they didn't do recommended tx. I did not do the recommended chemo and my first thought was my mo wouldn't want me as a patient.
Hope I explained it well enough, just saying that by not following the recommendation I was concerned my mo would drop me. I still see my mo once a year even though I am not doing any active treatment for recurrence. Understand what I am saying?
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I’m 8 years out last month. During my time being treated at the West Clinic my MO tested me only to see how Tamoxifen was affecting me/working. When I reached the 5 year milestone she said I could continue to see her if I wanted to but I saw no reason to so I see an internist and have my annual mammogram followed by a visit to my BS or in my case his associate.
Diane
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Surgery is considered a type of tx, no? You're removing the souce of the problem. Tx is not just chemo or rads. Everyone in this thread has had at least a lumpectomy. It'd be interesting if someone other than the OP who did 0 is being followed with a ct scan no less chimes in.
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I was diagnosed over 25 yrs ago with early stage breast cancer that required two surgeries. My oncologist recommended radiation and chemo. I declined both. I did not change my lifestyle which I believe now was unfortunate. I ate a lot of sugar albeit I also exercised a lot so did not have a lot of fat. I was however IMO making myself sick. I also lived a stressful life taking on big projects. Much more than the norm.
In 2018, I was diagnosed again with breast cancer in my other breast with a much more aggressive grade of cancer. I had 3 tumors. I consented to have a mastectomy plus a lymph node dissection that revealed cancer there as well. These were two separate cancer occurrences. I clearly have a chronic disease. While I had a considerable reprieve, my disease never left me. I was never cured.
Today I saw my oncologist. I have had blood work done this summer and a mammogram in my remaining breast. All looks good. This chat with doctor was more frank. I am his only patient taking this path of surgery only, no drugs. I have laid out several times on this board that I have radically changed my diet, fast everyday, exercise everyday that includes gym work and riding my bike 20-30 miles a day. I am methodical with this regime and very serious. I have to be. We will never measure any success if I go off this schedule. I have mentioned before on this board that before I quit eating sugar I had migraines and much joint pain. It is obvious I had much inflammation which we now know contributes to cancer. I took 7 Advil’s a day for many years. I do not presently take any drugs. No Advil.
I am not going to speak for my doctor. I understand while they might believe certain things themselves, meaning what causes cancer and therapies, they cannot publicly say so. I can just say I made some absolute statements such as we currently cannot cure breast cancer. It is false to say any stage cancer can be cured. Every person has cancer cells within them. Sugar is like heroin. We all should be following a circadian rhythm.
I have in the past had oncologists that refused to see me as a patient. My current doctor is ok with my decision even though I am his only patient refusing conventional treatment outside of surgery. He is happy I would at least consent to surgery again if need be. He did not try this time to talk me into chemo and hormonal therapy. I am thankful for that.
I think he hopes I succeed. He doesn’t think I am nuts anymore because he realizes I am doing much research myself. He made a few comments that encourages my activism regarding cancer treatment.
To be clear, I would never say my path cured my cancer. I was never cured. I never will be. I may be able to manage my disease without drugs that I believe do long term damage and have a full life. If not, I gave it my best shot.
Oh, I scolded about putting candy out for patients which needs to stop. He did say the staff complained, but management ignores. I will need to change minds at the top. One step.0 -
yes I guess I had a type of treatment. Surgery. So sorry guess I didn't follow earlier conversation.
Didn't do meds or rads. My surgeon said I think that some MO's don't like to follow pts if they aren't on meds etc.
And my MO wasn't even brought into my 'treatment' til after surgery. He was never consulted as to whether I should just have a lumpectomy I do not believe. Didn't even meet him til after surgery.
Anyway. Yes I suppose a lot of people have ultrasounds as follow ups. But I can tell you drs tend to prefer mammos. Just doesn't wk for my tissue. So that's why a mri may be done down the rd. Dr following me wants two different diagnostics ea year or everyother yr besides just ultrasound every 6 mo. So will see what is decided
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An oncologist’s jobis the treatment plan not the surgery. That’s the breast surgeon’s job. I didn’t see mine until after my lumpectomy either so that’s not unusual.
You choose not to take meds or do radiation. Your call. I did choose both. I was 8 years out last August.
Diane
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You're right about their roles. But having surgery to remove the tumor is considered treating the disease. You are removing the source. So it is a type of tx.
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That is really wonderful Diane! So glad all is going well for you! I am doing well too. I am 3 yrs out next June.
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Diane and jons_girl and others who are years out NED - so great to hear the success stories and thank you for staying active in the threads and bring an inspiration!
I just had my first mammogram after this whole thing started today and there was a radiologist on staff who could read my results right away. And he said, “Everything looks good, see you next year." OMG this huge wave of relief washed over me! My oncologist who has been doing the physical exams already told me it would be fine but you never know until you know and I had all these what ifs running through my mind. I know the journey is not over but this first clear mammogram post treatment is a huge step for me!
I followed more of an integrated path based on my own personal risk/benefit scenario.
What I did / am doing:
- Surgery (lumpectomy)
- Sentinel node biopsy
- Radiation
- Tamoxifen but at half dose
- Lost over 20 lbs
- Eating more foods known to fight breast cancer (carrots, tomatoes, turmeric etc.)
- Try to exercise at least a 1/2 hour a day 5 days a week
- Drastically reduces carbs and sugar
What I didn't do:
- Chemo (low oncotype score)
- Masectomy
- Further axillary node dissection (40% risk of chronic lymphedema not acceptable to me, plus found studies of similar cases like mine where women who did just the sentinel node biopsy had lower recurrence rates than those who did full axillary node dissection)
- Did not give up eating meat - I'm a carnivore
Anyways, it's one step at a time for all of us. Wishing everyone the best whichever treatment path you choose.
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Congrats PebblesV!! You to Diane and Jons_girl!! It is a great feeling when tests come back good. When you are doing everything that you know to do, to improve your chances of recovery, it is like a huge reward. Kind of like a pay day! It is a lot of hard work and self-discipline. It is something that takes constant thought, I find. I used to diet or exercise sporadically and people would say to me, "You have to make it a life-style." I didn't know what that meant until I found myself fighting this horrible disease. Now I know that all the changes that I have made will be permanent, which is what they meant by changing your life-style. I love my new life-style and would never want to change it. I feel amazing and look so much better too. I am loving life!! Congrats to everyone in this Alternative Medicine forum for being daring and realizing that you are also the one that you have to depend on, and not just your Doctors. Two heads are always better than one!!
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Thank you LORI. I agree it is tough work. I am not good regarding regular exercise. We live on a farm so I do have to work twice a day in the barn. But I don't normally go out and exercise for 1/2 hr every day. I know they say to do that though.
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