Why was I stronger DURING treatment than I am now?
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They are aware of various cures but dont want to know about them as there is no money to be made.........so they are debunked all the time....cancer treatment is an industry......
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Lilly55The medical conspiracy theory has been around a long time. Its absurd. The medical profession has loved ones that get cancer too. They know the cure but allow their mother, wives, daughters suffer anyway? That's insane.
The conspiracy theory is a diseased hamster that will scamper around and around a persons head. Kill it now.
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6 doggies,
Are you kidding me ? What on earth would make someone think you'd enjoy hearing that!? Yes, please present me with the worse case scenario, and thanks for thinking of me!!!! I do think people are often unaware of how their words effect others. I'm being generous.
congrats on getting your port out!!!! 0 -
I know people who have way outlived terminal prognoses by avoiding conventional treatment, and I am talking decades......and there is a serious study that shows over 50% of Oncologists would not have chemo themselves, so what does that say about the treatment?
I am not anti chemo but there are a lot of very closed minds in the medical profession as they are never taught about nutrition for a start and most new treatments coming through for us are based in immunotherapy and natural substances...so you and I will have to agree to differ.......
Also I find it appalling that surviving 5 years counts as "cure"......liked many other ILC women we are far more likely to recur after that period, so how does that distort the statistics?
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Lilly55
I agree that most oncology practices don't address the whole picture.Some very expensive cancer center do all the conventional treatments , plus nutrition, meditation, acupuncture, etc. But those are not everywhere.
As to the link you posted. Its interesting but it does not state the source. Without a verifiable source it could be written and posted by the plumber down the street.
I respect your post but 50% of MO not having chemo themselves is a huge number. I challenge you to find a legitimate study that supports that statistic.
Nutritrition, immun-therapy will help anyone feel better and aid in healing and recovery, Perhaps even prevent cancer, but if there is cancer growing in the body, nothing related to nutrition or immunology will kill those cells.
I am sorry Lilly I do not believe a person with stage IV can outlive their prognosis by decades even with conventional medicine or anything else shy of a miracle.
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The point is...what is the data? Anyone can say anything but we have to go by science.
Think of Steve Jobs! An absolute genius who thought he knew better.
Who would have chemo if they didn't absolutely have to? I had several opinions. From oncologists.
Some said don't have it. I certainly understand why, now that I have had it. But I was not about
to bet my life on doing nothing. I wanted every advantage I could give myself. I don't KNOW that it was
the right decision but I am quite sure that the drs meant well. Their professional egos are on the line.
They want you to live.
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Raider, it's a turd alright! I totally agree with you on all the pink crap too. You handled it better than I have. I usually just take the stuff then put it in my pile to go to Goodwill.
Lily, I do agree with you that the docs need to learn a lot more about nutrition and complementary therapies. That's why I found a PCP who is schooled in integrative medicine. But much as I wish nutrition, etc. would cure cancer, I have to side with the "show me the data" camp. I have a friend who I consider a genius on the level of Steve Jobs. He thought he knew better than his doc not about cancer, but about HIV. Then he got a rare form of lymphoma that HIV positive people are susceptible too. It nearly killed him, and he freely admits he made a mistake not listening to his doc and taking the standard drugs. He was lucky, and lived to tell the tale. The two other people I knew who skipped standard treatment for 2 different forms of cancer and went with nutrition, etc. are dead now.
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i am in the complementary camp, best balance possible.
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I am of the same opinion as Timbuktu. I will do whatever regular medicine treatments to give myself any reduction in risk. I do however also want to try different complementary treatments. I haven't explored that a lot yet because of the financial committment.
I am trying to eat better, but that too is so darn expensive for fresh and organic. I am taking several supplements, so the GNC Bill is a bit much. Garr.
Today I went to the Kids for the Cure race. It was nice for my friend to have the kids be on our team. They were pretty excited. Tomorrow is the race. I am not sure how I feel about it.
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Smart - just checking in to see how the race went! Hope it went well!!
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Mel, Thanks for asking. It went ok. A lot of emotions around it I guess. In part acknowledging what my body, mind, soul & Marriage have been through in the past year and a half....in part seeing these amazing women who are so strong in person...and in part my awkward feelings toward the Komen organization.
I was grateful for my team members being there, but also irritated for the continued need for babysitting. Some were late, so I missed all of the survivor stuff except for the picture. I was sad that I didn't get to see what was there & my phone was driving me crazy because people couldn't just follow the info I gave them about where & when to meet.
There was one thing I heard from the Komen folks, that I am curious of you all's thoughts: from the stage, they announced that the 5 year survival rate for early stage cancer as 99% & then made a comment about just one small tick to go.
What do you guys think of this? I have some thoughts, but I know I am also really really crabby these days.
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Komen is full of shit.
They've gone from being annoying
To becoming obnoxious
To becoming dangerous.
99% huh
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Marketing?
When I went to MD Anderson I noticed a sign ..everywhere. Cancer with a line through it. As though they had
eliminated it. I mentioned it to my oncologist, how I loved that sign. She said "Marketing".
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My cancer center has signs that say Cancer Sucks. So true, tell it like it is.
Smart, sorry your buddies were struggling to be adults. I hate that, ( get stressed ) when my phone is beeping every 20 seconds.
The stat on 99% survival, seems like bulls#*+. Unless they are only referring to DCIS or LCIS.
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BB, deep breath, i hope it is done now, it is too horrid.
We have some really annoying campaigns here too. The 99% thing? that is simply untrue, surely?
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Hasn't Komen heard of oncotypes? My stage and grade are low but recurrence rate is not. That's why I'm bald and am on an anti hormonal.
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Hi, I too am feeling like I got through all the chemo, surgery, and radiation with such strong determination. I am now hitting a roadblock. I don't want to take the post-menapausal estrogen inhibitor, Arimidex. I took it for a month and because I also have Fibromylgia have had such problems with muscle and joint pain causing walking and moving issues in my legs, feet, and hips. I just don't want to take any of them. The doctor wants me to be off this a month and then try another drug to see if it works better for me. I just don't think this is the way to live for the next 5 years. but yet I get to live. I wish I knew the research on those who chose not to take any medication. I was a stage 2b, ductal carcinoma with one lymph node affected, 3 were removed. Why am I, all the sudden not being compliant, when I was before? I was in infusion rooms with those who had their breast cancer come back in the other breast or as ovarian cancer or in the chest wall. It seemed to be because they all did not do all the parts. Some did surgery but not radiation, etc. So, I know I should do all the parts for my best chances. Somehow, I feel that by taking the medication, I am not believing that my all mighty God healed me and I am doubting him. Weird I know. Plus, I really hurt taking that stuff. I read on one of the sites that it can still come back even if you have taken it. When we look at the percentages, it says a certain percentage of those who it increases the risk of it not coming back, but the other half of that is that it will or won't anyway. I just don't know what to do. I guess if I do everything possible at least if it does come back I can be good and ticked off.....because i did everything I was suppose to or was advised to do. Or be really ticked off that I took it for 5 years and it came back anyway. It's a crap shoot! I just want to believe it is over, so if I don't take the medicine I think it is over in my head.
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Last week I met a young woman who told me her mom (my age) passed away a few months ago. She had same dx as me and quit her AI because of SEs. Kept on saying how upsetting it was to have her have met pain worse than the SE pain
It is a lousy crap shoot. I have fibro too and it's not pretty but I want to live
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it is a lousy crap shoot. These are very very hard decisions. Quality of life is nothing to sneeze at.
I think sometimes we just get do worn out because all the different parts of treatment are long, complicated, and all have SEs. Maybe if you could allow yourself a week or two to just not think about what is next. Let the gray matter work on it for awhile. Maybe you're poor brain and emotions are just in need of a time out. Just an idea. Sending a hug.
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Smart, I'm not a big fan of Komen. In the case otheir statistics, I want them to show me the data. The other bone I have to pick is that they make it sound like getting a 100 percent survival rate for early stage is the end goal. How about working on stage III and especially stage IV?There's currently 100 percent NON-survival for the latter.
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Daisy - Here's a thread for that:https://community.breastcancer.org/forum/78/topic/827404?page=4#post_4388897
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Thank you all for your thoughts on the 99% info from Komen. I have to say, I was offended. I am Grade 3, Stage 2B, Her2+, and yes I know I am considered early stage & I know Heceptin has allegedly changed the world....but it hasn't. While I am grateful for all of the treatments available & I know they have come a long way...we are still at slash, poison, burn. There is a reason my Medical Oncologist told me I cannot get my port out until April 2016. We all still know of folks who do not do well, and I am sorry, but the Survival Rate of 5 years (being alive) is not a Cure Rate, nor is it a Quality of Life Rate. By their data, if I live until December 2018, everything is all smiles and a success...but we know it is still a concern for the rest of our lives. I think it trivializes the length & difficulty of treatments, checkups, worry, scans, recurrence, further treatments, etc. OK rant finally over.
I do like that Komen gives money for mammos, especially for low income folks. Almost anything that gives money for women's health will get my time/talent and/or treasure. The only time I truly gave Komen hell was when they tried to eliminate Planned Parenthood, while admitting many low income women get their mammos there. I also like that while participating my family can see how many women this affects & how Breast Cancer is now part of our identity and future. It isn't like strep throat, one and done.
Chloesmom, I am sorry you had that experience. I do not know what is wrong with people. I had the same thing happen & I have no idea what type of response could help in that situation because I wanted to scream "Why are you telling cancer girl who spent the last 12 months in pain, poisoning my body and burning myself that it was all for nothing?" but I know that is the wrong response. I am sorry that happened.
Bosum...hang in there. I cannot imagine mammos. The PET scan gives me the shakes. It is part of the reason I went BMX, my anxiety probably would have had me in a straightjacket. Deep breaths & Good luck.
Daisy, I have not been on the hormonal stuff, so I cannot speak to the side effects. What I can tell you, is that when I pray every night, I pray for my various medical docs and their teams. I pray they have God's guidance to do their best work to help people and that God continues to give them the best tools to help me and all of their other patients. I truly believe God would not have given them various tools to help the sick if God did not believe in them. I also know that the statistics on recurrence, survival, etc. are based on all people from all walks of life. Those folks with good insurance, financial means, those who take all treatments offered, or have better access to health care do far better than those with barriers to recommended treatments. Because I thankfully have access to good insurance and to the great healthcare I feel like I will do whatever they tell me I have to do & if it doesn't work...I will have to deal with that. Sorry if this sounds preachy, that is not my intent. You have to do what is right for you. We all do.
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Smurf, not really upset about what the girl said. It just motivated me to stick to my meds even if they are lousy as the consequences of not might be much worse.
People are funny. I was buying bananas today and a man came up to me to tell me he could see I was dealing with cancer and he had tell me that if I juiced a lemon every day it could cure it. What a world
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I must say the more I learn about bc and the more I read about the statistics that are given at the races, the more it makes me frustrated and sad. There is so much misinformation and it really does give people such a distorted view of what is really going on. As 2Tabbies said, what about working on Stages III and IV? As Smart said, we know this is a concern for the rest of our lives. Smart - good idea to pray for your medical doctors and their teams. I did that when I had my surgery, but then stopped. I need to pick that up again.
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Although it can come back at any point, doesn't the likelihood go down each year?
I thought that was why they used the five year cut off, although you are right, it misleads.
My mother had it return l5 years later. But I thought that for every year you survive, the chance of survival goes up. BTW, my mother did not die of breast cancer. She was given Tamoxifin and the tumors shrank.
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Timbuktu. It.depends on the type. Yes for IDC but for ILC recurrence is often 5-10 years later.
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Cholesmom, I have read that many times. The rates of reoccurrence tapers off after 5 yrs for IDC, but not lobular.
I still am so shocked when I read of a stage 1 progressing to stage 4. I always think I would feel confident if I was stage 1. Goes to show us, it's a stinkin, aggressive disease. No guarantees, especially when there is a lot of nodes involved.
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Hi All, I just found this thread tonight. I see lots of familiar names here! Without having read all the posts, I will say that in many ways I was stronger during treatment than I am now. It was called "survival." DH and I did what we had to do to get through it, continue working to pay the bills, and not wallow. After all was said and done I became extremely depressed. Tearful, withdrawn, purposeless, and irritable. Thankfully my PCP knows me well and at a routine visit asked how my psyche was and I burst into tears. Now that I generally feel good, the permanency of the body changes, the permanency of DH being "stuck" with me (which he denies!) and the feeling of absence of femininity caught up with me. PCP says it is reactive depression (I have also seen it called PTSD) and I finally started on an antidepressant which has done wonders. I still have issues with self-pity but have an energy for life again which is wonderful. I just don't want to stay on the med for the long term.
Sorry if my post is a repeat of other posts, I need to go back and read all the previous posts!
Martha
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Welcome Martha! You said it so well. Exactly my story ( except working during treatment). Exactly my feelings. Susan
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T
The recurrence rate is highest the first 5 years, then it goes down , and then it goes up again after 10 years.
2Tabbies,
if the survival rate is 99% why are these women having 6 mos mammos, C2 blood work, and continual physicals? That 1% wouldn't justify the continual care
. So either Komen is full of sh*t or our doctors are milking us for office visits and tests.
I bet is the KOMEN likes to market themselves. I have not read that statistic anymore except their propaganda.
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