I decided to completely forego any further " C industry care" ?
Comments
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Thank you so much for all the info and helpful posts racy, kayb, ruthbru, labelle, and debiann. I really appreciate it! Considering all of your info and with what the doctors told me today, I think I am leaning towards a mastectomy just on my left side. If I were to get a lumpectomy the doc would have to take most of my breast tissue anyway. I guess I won't have a matching set any more but I want really to keep my breast for now. Has anyone here just had unilateral mastectomy with reconstruction and are happy with the results? I was told I am not a candidate for flap reconstruction and will need an implant.
Shanshan
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Yes I did only left side and I am happy with the DIEP match. No radiation yes!
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Shanshan, this is your decision, not your husband's. Surgery is the most important treatment of all the available ones. The reason your doc gave for the mastectomy is a common one. It makes sense to keep the "good" breast. Many women are happy with their reconstructions. There are also many women who don't bother and make do with a prosthesis or skip it. It is all up to you and how you feel about it.
Cheesequake, there are stats floating around to the effect that 30% of all breast cancers eventually metastasize. However, there was a recent study with more up-to-date data that seemed to drop that number some. Also, I think it is really important to keep in mind that even if a BC eventually sprouts mets, that doesn't mean the treatment was useless. We know, without a doubt, that there is no cure for cancer so it makes no sense to "indict" the treatment because it is not a cure. The stat also means that for 70% of patients (and probably more actually, according to the more recent data) it does NOT come back.
If treatment buys you 5, 10 or 30 years of cancer-free life, it still did its job. My DX is 3B, that means I was about as close to mets as you can get without actually having any (detectable) mets. I am 4 years out from DX without any signs so far of the beast. It will probably be back one day, but without treatment I would most likely have developed mets years ago already, and given that it was lobular cancer, I probably wouldn't be here to talk to you about it. I have had a really good time these past 4 years and I am glad to have had this time. Hopefully I will have 4 more and then perhaps another 4, and there is even a chance that by the time the beast returns, they may have come up with better treatments or even a cure. I may also turn out to be one of the people who has the good luck not to have it return. As I keep telling my aunt, who is NED 4 years into a stage 4 DX, "You win if you die of something else."
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Shanshan, I hope you find, as many of us do, that once the difficult decisions are made and you have a treatment plan in place this nightmare gets a little less scary.
There are threads on here discussing uni mx, and yes many are happy with that option.
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I did everything medically recommended (chemo, rads & 5 years of an anti-hormonal) plus the lifestyle stuff (which is complimentary not alternative); at best I am cured, at worst I have been given the gift of eight (so far) wonderful, interesting, fun cancer-free years. Maybe I would have been okay with surgery alone; but I am not much of a gambler, especially when my life or death was the stakes.
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Momine, you said it all. I think exactly the same.
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I went the conventional route with a lumpectomy followed by Rads and currently taking Tamoxifen. 3 1/2 years out. No unmanageable SEs from Tamoxifen.
Nothing is easy and obviously some of you have or had debilitating results from your treatment plans. I did not fortunately so I can understand deciding to forego the treatment plans but it's still risky,
It is your life and your decision. I for one decided not to play Russian roulette with my life. I'm sure some of the alternative methods and meds help but I'll take them in addition to, not in lieu of. I live in a township outside Memphis where St. Jude Hospital is located. It is where Steve Jobs came when his alternative methods for cancer didn't work. His family begged him to go the conventional route. By the time he got to St. Jude it was too late.
Diane
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Kayb, that is where we differ. I do not consider current treatment a cure. The treatment can at best, from my point of view, achieve a remission long enough to allow the patient to die from a different cause. In practical terms, for that patient, it does amount to the same thing, but I think it is still important to maintain that difference, both because it does matter psychologically, as you mention yourself with the aches and pains, and also for reasons of intellectual honesty.
With the pinking of BC, a tsunami of disinfo has been created that presents BC as no big deal and essentially "curable" as long as you get your mammo and catch it "early". Yes, mammos catch a lot of BC, but not all. Yes, catching it early ups your odds of survival significantly, but it is still not a cure in those cases. I think it is really counterproductive to have this disinfo around. For one thing, it creates immense distrust in loads of patients and understandably so. You have an assumption that it's no big deal, modern medicine can cure it as long as it caught early etc, but then you get a DX and start realizing, as you go through treatment, that it isn't quite like that. It undermines the credibility of the medical profession to to have this cure narrative in the picture, and to be fair, it is mainly put out by the charities, not the doctors. It also creates an assumption that 97% survival rates in stage 1 (making up a number) are "good enough." It is not good enough. It is not good enough for all the women with stage IV. It is not good enough for those of us with non-metastatic BC, when we have to monitor vigilantly and live with the idea that it could be baaaa-aaaack any time.
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I hope that isn't true. My MO said she is going for cure, and she is a very nonsense, research based person. I had two great aunts, one with a lump similar to mine in her early 50s who died at 99, and a second great aunt diagnosed who died at the age of 92.
If I can live to my 90s, I would certainly view that as a cure.
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Italychick, and you should. You have a really early DX and your chances of making it to your 90s without a recurrence are absolutely excellent. My only point is that it is very effective treatment, but strictly speaking it is not a cure.
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Would one of you very intelligent ladies start a info thread on ILC cancer - we have so little info - I think i READ hear that chemo is not effective for ilc patients...yet, following traditional path....I start chemo in two weeks...mainly to please my famly (gotta give it the ole college try)......I'm losing my energy to fight...just going along with what the guys in the white coats tell me. My first dx was just in early Feb - and already, I'm soooooo tired. I'm sure i'll take traditional treatment to please my family - which is all I care about now....But, I'm just curious...hugs, blessings.....
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"You have a really early DX and your chances of making it to your 90s without a recurrence are absolutely excellent."
This sentiment (not attributed to Momine per se, but the general sentiment) is something I hear quite frequently from everyone around me, as they cite Komen and other "early detection" propaganda. And then there's my MO who looks at the profile of my cancer - not the stage - and feels vastly different. I think the same when I talk to my other early-stage sisters who are ER- or Her2+. For ALL of us, we need a cure that isn't accidental, that's purposeful, that we know works. It feels like such a crapshoot to hope I die of something differently in the next 30-40 years so I can claim, in my last breath, "well, I guess I was cured."
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December, I had ILC and researched the chemo question. It is a misunderstanding that chemo doesn't "work" on ILC. I do not have the studies handy, but recent studies show that the survival benefit of chemo is roughly the same for IDC and ILC.
The difference is that with ILC you are less likely to get what is called a "pathological complete response" if you do chemo before surgery. "Pathological complete response" means that ALL the cancer is killed by the chemo before surgery. However, even in IDC a pathological complete response is rare (10% or less), so this does not really mean that much and it doesn't mean that the chemo doesn't do the job it was meant to do.
I wish you an easy time with the treatment.
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Ladies, I think we are getting into the semantics here. I fully agree with Momine's comments, however I think we should elaborate a bit on what "cure" means to different people. I don't think we will ever see real cure to breast cancer or any other cancer for that matter simply because that would mean a drastic interference into basic cellular processes (please pardon wrong termnology - you know what I mean.) In my very superficial understanding - my last science class was in high school - that would be akin to inventing a perpetual-motion machine. What I see as quite realistic, is the ascent of treatments that would allow keeping cancer in check for more people and with fewer side effects. Some people including physicians call this cure because it is much easier for the majority of patients to digest. My wonderful internist told me "we are still aiming at a cure" when I saw him last time - meaning just that, there is still hope you can live a long time without progression.
Edited for typos.
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Momie...I've been "following" you since my dx in Feb - I have so much respect for an intelligent woman like you...and, I'm...soooo, lost, for the 1st time in my life....thank you for your message and wisdom...because, honestly, I don't want to do any of these "treatments"...but I WILL, for my familly, it makes them feel better that I'm doing all I can. You, are so so so special...like so many others in this forum...I can't express enough how strongly I feel about most of the women I've met here...and I've scoped out ALL the other breast cancer web sites...and this is where I choose to spend my time...with women ... like you...thank you...Blessings, hugs...
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Have you used the Budwig Protocol and Diet? Have you juiced raw marijuana leaves? What have you done? I took my cancer down from 9cm to an 8mm lumpectomy using alternative methods. It kicked my ass, but I got the "No cancer seen" on my last scan in March. Do you need help? I can't make any promises but I can share what I did.
Love, Blubelle
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Blubelle, I am curious what you did, can you please elaborate? You did have surgery and is that the only conventional medicine that you did? Thank you for your help.
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Macb04 Here is a link to the clinical trial you mentioned where they are testing the effect of Tamoxifen on bipolar mania -- holy smokes. I didn't know that. Thank you so much for saying that. https://clinicaltrials.gov/ct2/show/NCT00026585
In general I have mixed feelings about the "no mainstream medicine" decision: I am very much an alternative medicine and nutrition type of girl, but I believe that mainstream doctors can help at times (like with setting a bone that is broken, for one). However, the decisions I have made so far have definitely been made in order to avoid any type of radiation or medication -- including tamoxifen, without even knowing about that study. I did a lumpectomy and got "all" of the DCIS, except that there was ADH in the margins. Because it was caught early (2 mm), no one really freaked out when I declined the radiation. There was a little bit more uproar over my refusal of Tamoxifen, especially with my family history and dense breasts, but my choice remained no Tamoxifen. Now my follow up mammogram shows a papilloma, usually a benign tumor, that grew in the last six months right next to the DCIS spot. It has to come out either way; and if there is DCIS there, I'm going to have an argument on my hands about radiation and tamoxifen, and I won't be able to blame them. So I am choosing PBMX. Because I am trying to avoid radiation, chemo, and tamoxifen. And if we remove everything, there is a much less chance of a recurrence in my breast at least.
So I read this thread and thought "I don't agree, I'm doing conventional medicine," but then I realized I'm not really. I am trying to avoid conventional medicine as much as possible, other than cutting out the cancer. So I'm doing PBMX before a lot of people would.
As a note, my dear friend was diagnosed with Stage IV bc, mets to her liver, and she still lived for 20 years, doing conventional medicine. It is such a personal choice, and no one can really say what is "worth it" to another person. What she could put up with maybe I can't. Also, the "Stage IV only" board on here currently has a thread with how long women have been living with Stage IV, and you will see that many are doing conventional treatment and living full lives without a lot of SEs -- just to show the other side. But I understand that when you're done, oh man are you done!
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It is a matter of semantics I suppose, but many, many women who have been diagnosed with breast cancer live out full lifespans and die of something else-my OC calls that cured. And I tend to agree, maybe not cured at the molecular/cellular level or whatever, but at certainly cured at the level most of us hope for, a practical living out the rest of our lives without another incidence of BC level. That is possible, and it is what most of us diagnosed with early breast cancer will do, and it is also something we need to hold on to.
Of course it's not enough since living with the fear of or worrying about a recurrence is so stressful and it would be really great to know for sure you are cured in all senses of the word. I'm working on putting the whole fear and stress thing behind me and to do that I sort of need to hold on to the idea that my treatments have cured me, if not on the technical, cellular level, on the practical, living out my life level.
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I have several family members who underwent cancer treatments and died many, many years (decades) later without a recurrence. I guess they were cured, and I consider myself to be the same unless proven otherwise!
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Hi Ruth....I never noticed this before but...how did you get 37,000 posts since your diagnosis? That's amazing.👍
Artsee
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I have a big mouth, plus I am addicted to the game threads
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lol Ruth - you made me burst out laughing
Nancy
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It makes me so sad that u all r having such a hard time. Going back n forth with the decision what is right what is wrong....u never know. U want input from loved ones n professionals eho r supposed to help, but they dont, they make it more n more confusing. People have the best intentions most of the time, but sometimes they r scared n react differrntly.
I am stage 4 in hospice...got diagnosed in 1996, lumpectomy, yes the scans over the year were something i stressed about...14 years later it decided to return, no tomoxifin..nothing, recurrence same breast on chestt wall. Hormonals then infusion, then se too annoying took myself off chemo 7/20/14 , it has been an unusual year, hospice 2 weeks ago. I am ok. Pain is controlled, feeling good..
The point of this is , u never know what will happen in life. Make the decisions u want cause if it goes array then u can't "blame" anybody...life is too short to b angry, hold grudges n not taking care of yourself the best way u know how. U know u better than anybody n it is u r responsibility to follow through. I will b thinking about all of u hope u ultimately make the decision that is best 4 u
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Thank you blondie. Look at you -- worrying about the rest of us. I'm glad the pain is controlled. Thank you for giving us your valuable insight and God bless you.
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Amen Blondie. Many good thoughts to you. Hugs
Nancy
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You're a wise woman, Blondie. Thanks for helping out the rest of us! Hugs.
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blondie, you are so right about everything! I go with my gut feeling when making decisions therefore I would be a fool to think I made the wrong decision with regard to my course of trestment. I hope my decision alllows me to hang around on this planet at least half as long as you since your dx.
God bless you, Blondie. Wishing you continued peace!
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Great post blondie, thank you for sharing your perspective, coming from tons of experience. Best, best, best wishes to you.
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