Early Stage Natural Girls!
Comments
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Purple,
Your % of ER/ PR receptivity should be on a post surgical path report. Oncotype dx is only done under specific circumstances ( see Genomic Health web site) for more info.
Mini, studies that take into account ever aspect of ones lifestyle and how it affects bc survival rates would be difficult to do and control and would depend a lot on self reporting which is notoriously unreliable. Still, your point is well taken. In CA, all children entering the public school system must have a home language survey ( filled out by parents) to determine if they are English learners. For various reasons, parents often don't tell the truth. This results in kids who really do need services not getting them or children who are not English learners being classified as such! Ah, self reporting.
Caryn -
DianaNM,
Look for this thread where we were talking about IGF-1 http://community.breastcancer.org/forum/121/topic/791885?page=1#idx_26, then look on YouTube for a BBC documentary called Eat, Fast, and Live Longer. It's not specific to BC but when you lower IGF-1, you slow cell growth. The video will explain better than I.
Cell phone: yeah for stupid short while I wore mine on a long strap around my neck, like a necklace. Geez! Dumb!
The scare tactics are actually abusive, in my book. I'm a Couples/Family Therapist. If they were dealing with a population of men, I do not think they would dare try the intimidation techniques. Although they might, since a large part of the BC population is senior. However, in my state "elder abuse" is a crime. And trying to scare the c**p out of someone over 65 even "for their own good" is not a healthy, positive, professional way to behave. IMO.
Wishing you the best of futures!
Hap
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I don't even tell people I'm not drinking the Kool-Aid because they look at me as though I have a death wish. If they were telling me I had a 100% guarantee of no recurrence, I would take it in a heartbeat and deal with the SE's, but they're not. At best, they say an 11% risk. I asked what the difference would be in my treatment if I have a recurrence on the meds and w/o, and the answer was nothing.
I understand that you can't "control" the control group. My frustration is that they seem to be spending an inordinate amount of time on those that are not surviving and not enough on those that are. There has to be a common denominator, be it in the genes, lifestyle, food, something, that allows some people, like my mom, to have a surgery and take no meds and have no recurrence, or like my husband that had chemo for his cancer 30 years ago and hasn't had any issues since. Instead I have to choose which devil I want to face-the meds that can give me other cancers and have horrible SE's or nothing. Either way if it comes back or I get another CA, I will wonder if it is because of my decision or in spite of it.
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DianaNM-
I don't think we are in the same state but we have the same law. My good MO moved to CA, and I went to a new one at a major teaching hospital. She really yelled at me for not taking tami, and said either tami or ovary removal were my options. My old MO was ok with my decisions. This left me feeling really bad. It was truly a scare tactic. My understanding for myself is that my reduction with tami is 1 to 4%. Very frustrating. I do wonder if BC was a male disease whether they would be treated the way we women are treated? I appreciate you sharing.Ofcourse I am still confused.
take care,
CR
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NEWS!!!
Ok, I am answering my own question RE: BC news of 9 . 23. 2012.It seems there has been a bit of a breakthrough.
http://www.nature.com/nature/journal/vaop/ncurrent/full/nature11412.html
Among other things, one of the things determined was that *certain* types of BC are similar to ovarian cancer and may respond favorably to similar tx.
Soooooooooo, who knows how ovarian cancer is treated ?
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Yes,I really think it iS hot news , hapk - and I don't think it should take 1o yrs to start figuring this thing out now that they have all this new info! I mean, surely cvlinical trials can get underway immmediately and those of us eher right now can possibly be helped. Just as some of us ( myself included) take metformin due to how promisinmg the clinical trials are, some of us could possiby get our hands on whatever they will be treating with - now.
I think this is ESPECIALLY important to stage iv ladies.
I believe that we ALL need to put pressure on the DRS , the ACS and the government officials to get this train on track.
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Hap, I'm not over 65, got a few good years left. LOL But I think she was a bit out of line. Probably time for another doctor, must decide if I even want one. Thanks for the link to the thread about IGF-1, very interesting. Intermittent Fasting is already a part of my lifestyle (Primal Blueprint) but I routinely do 18 hour fasts, early dinner to about noon. I was thinking of a two week ketogenic diet soon, but maybe will try at least a two day fast first.
Germany has been testing tumors against meds to customize treatments for a while. Would be nice if the US would go in that direction.
Found out something interesting yesterday, don't know how I didn't hear it before. I worked on the base here until about 2001, when I got so sick they allowed me to work from home. I had chemical sensitivies that got so bad I couldn't think, hurt all over, and had a raw red rash all over my face. All I wanted to do was sleep, and I thought my sealed 80s office building was the culprit. When they wanted me to go back to the office in 2004, I took early retirement. KAFB in Albuquerque had a long term jet fuel leak underground, discovered in 1999, and now estimated to be worse than the Valdez. In other words, the base here might be another Camp LeJuene. I saw one of my old co-workers at the Onc's office last month, coming out of the chemo room.
So I don't think putting more chemicals in my body (Femara) is going to be the answer for me!
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We just had an article in our paper about the PBB contamination back in 1979. I don't know if anyone remembers but there was an incident that contanminated the cow's food. One of the areas was my home town. It took 9 months to figure out why the cows were droppiing like flies. Whole herds were shot and buried. Several families in our area have whole families that have had children and/or siblings die of various cancers. One family had 5 members die of thyroid cancer, esophegeal cancer, cancer, diabetes (at age 24), and breast cancer. It happened in another state as well and they have the exact same thing. They ended up burying all the dead animals in two landfills which they have now decided not to monitor for ground contamination as often-often being 1x a year. They say it's a waste of man power since there has been no measurable contanmination on 30 years. Translation- we can save some money in our budget. Since it's been 30 years they now say there is no way to link the PBB contamination to the cancer clusters, but c'mon. We're not idiots. We drank that milk as kids and young adults and ate the meat. Now there is a higher cancer (and other disease) correlation between these areas and the rest of the country. You don't have to be Sherlock Holmes to get the connection.
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Mini, that's awful. Isn't PBB the stuff used in plastic and kid's clothes? I'm extra sensitive to chemicals, and it seems like we are surrounded these days.
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PABA's are the ones we we're supposed to watch for in the plastic, but I just read that what they're replacing it with- PABB's are just as bad or worse. PBB is a controlled substance now and is no longer manufactured. Wikipedia has a lot of info on it and mentions Michigan's incident. It was a shipping error to a company that made both a fire retardant that used the PBB and also made a cattle feed supplement. 10-20 bags were mxied in with the feed mistakenly. The cows feet got really big and their hide very thick. Then they got abscesses. It was bad. They made a movie about it called Bitter Harvest in the 80's. 1.5 million chickens were containminated, over 30,000 cattle and 5,000 pigs. All the animals were put down. There are still traces of it being found in many of our rivers.
One stat that caught my eye was the one that said sons born to PBB-exposed mothers had a three-fold increase in hernias or hydrocles (collections of water in the scrotum) than those with lower exposures. My son had a hernia operation when he was three and an undecesnded testicle with fluid present. Coincendence??? Maybe. But I have my doubts. They say the increase in breast cancer is only 1%, but who knows how they followed up back then and how many have left the area and never reported theirs to the people doing the follow up? Or were listed as a non-cancer related death as mentioned above in one post. I was in high school at the time and drinking a galllon of milk a week and we ate red meat most days; local of course because that was "better." Who knows how much we were exposed to?They say the burial sites are safe, but they don't want children playing around them and eating dirt. Sounds safe doens't it?
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I'm about to run out to see the plastic surgeon, but I have been tortured by the thoughts of Tamoxifen from the Oncologist I met Friday. It was one of those situations where I was told "every patient has to do SOME form of therapy", meaning - I wouldn't get out without some sort of "medication". For 5 years. I'm a pretty natural person - natural home and body products, natural makeup, we eat all organic, free range, grass fed everything. So to commit to a pill for 5 years that will probably throw me into early menopause at 41 seems like a really bad and depressing idea. And it seems that it will counteract all the good we do. I could have been better throughout my life, but we're really cleaning it all up now. And I want a chance to enjoy my quality of life, not just be alive. Stage 1, had a mastectomy, going through reconstruction now.
Hubby is trying to support me but is scared, we just got married a month before my diagnosis. He's way more western medicine than I am, and he respects what I do but now is scared that I don't want to take this garbage and try to heal myself from the inside (what a concept!!!) rather than poison myself to hopefully offset a recurrence. I just don't get it.
I'm stressed, have been putting on a few pounds from stress and worry and lack of exercise.
My dentist had cancer a while back and went to a doc here in NYC for Ozone therapy. That's more my speed. Now, he did it alongside chemo, but raves about it. And I want to meet with this doc - probably not covered by insurance, of course. But, I want my quality of life. I want to feel like I'm controlling my health, and not letting someone else drive the bus that hits everything along the way. Is anyone with me on this? Here's an entry from before my surgery when I started to check out supplementations etc: http://breastcancernycmom.blogspot.com/2012/09/supplementing-and-cancer-centered.html
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NYCMO3- I was lucky to get a doctor that mostly just makes tsk, tsk noises, but doesn't press the issue when I see him. I did try the AI's and had HORRIBE SE's. I filled the Rx for Tamox but it is still sitting on my counter untouched since Sept. I just can't get past all the SE's and the loss of my quality of life. I know there are people that take it and seem to be OK with it, but with my early stage and having had surgery and rads, I don't think the benefit risk ratio is worth it for me. Cancer Math isn't 100% accurate, but still the extra 7 months it shows I may gain with the meds don't seem worth it. There is a reason that the average woman stops taking the meds after 2 years instead of 5. Lots of people want to treat me like I'm signing my own death warrant, but they don't have to live my life. I do. I just tell them that if they get cancer, which God forbid I hope they never do, to feel free to take the meds. I'm sticking with DIM, supplements, diet, etc. Ultimately, we have to make the decision that we can best live with, whatever that is.
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My docs are super, don't get me wrong. They know me pretty well. This oncologist was brand new and really stopped me in my tracks. A powerful woman. Definitely no nonsense, knows what she wants. I just wasn't ready, given my breast surgeon and plastic surgeon. We're going to meet the radiologist tomorrow to see if they want to fry me or not. Apparently it's a real close call. Obviously I'd rather wait and monitor. But in talking with my plastic surgeon today, if they need to radiate and don't, and then need to go back in, it's a whole 'nuther mess.
What's AI?
I laugh when I see the bottle of Tamoxifen in my cabinet. I'm surprised I brought the script in, but I did. So there it is.
I think it's funny how people think you're doing yourself a disservice by not wanting to take the poison and drink the kool aid just because it's there. I had a fight with hubby about it, a bad one. He's scared, I totally get it. And he's so down with our natural life, it's all new to him but the more we talk the more we get it, and slowly I've weaned him from artificial body products and he's gotten very used to grocery shopping for all of us. But the cancer scares the crap out of him and I get it. I just want him to know that I have no desire to drop dead any time soon. But I want to enjoy every breath on this earth as me - not some bloated, menopausal, depressed, brittle boned and uterine cancer scared 41 year old newleywed. They got my 3 tumors, they stole 6 of my lymph nodes, and I have a rock hard water balloon waiting to be exchanged for a softer one. Enough is enough.
Just a lot of research to find enough information to feel good about my decisions. But that's better than just accepting everything the experts say. I saw my mom do it for 10 years. I refuse to be passive in this - it's my body and my life. Thanks for your note, I'm glad that I'm not alone here. And hey, maybe I'll decide to try it, but that's my decision, right? Though I have serious doubts...
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You're definitely not alone. I refused to take it too. Its not a guarantee and I didn't like the idea of the uterine SEs, plus I was already miserable from chemo giving me instant menopause and weight gain and hot flashes that were truly from hell. That was 8 years ago and I have never checked out cancermath but if I were in that situation now I would look there for help. It is a lot of research and it will drive you crazy! Its hard to know what the right thing to do is.
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Back from another long appointment. Today, the radiologist. We've decided to go ahead and radiate. 5 days a week for 6 weeks. And he said, don't worry about the tamoxifen until we're done. He also said, if you take it and it sucks, then stop.
I like that approach. I'm pretty sensitive to my body, and my husband is very honest. If he notes any negative side effects happening, he'll tell me. But most likely I'll feel them (unless it's extreme moodiness - I may just be in denial about that one...) I've been so damn moody anyway through this ordeal. I'm usually pretty positive and upbeat, but behind closed doors, it's so hard.
So, another long appointment tomorrow. This means exchange surgery in April or so, instead of February. The good news is that they don't have to radiate the whole thing, or ANY lymph. And the doc encouraged use of things like calendula - anything natural to help the skin. I'm lucky to have very resilient skin and I'm young so it might not be a total disaster. I just wish this all didn't happen so fast. I feel like this roller coaster took off before I got my seatbelt fastened.
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Does anyone know of a supplement that improves ciurculation ( NOT a vasoconstrictor) but does not lower ( my already too low ) BP?
THX -
I think I've heard that lemon juice (fresh) helps - I'm not sure if it effects blood pressure either way. What about massage? I think most everything that improves circulation will bring down bp, but I'm not sure. Wish I had more info for you!
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NYMOM# - AI's are aromatse inhibitors. I thought about the rads and possible future occurances and its ramifications, but had it anyway. Sometimes I wonder if I should have but hey, what's done is done. The problem is by the time you learn all you need to learn about breast cancer and the treatments it's too late. You have to make all your decisions when you are scared and vunerable.
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Thanks NYCMOM
Massage might bring mine down even LOWER ( Its already too too low) I have lymphedema anyhow - no massage for me!
In any case, I ordered the ACTIVIN GSE. I soooo want to take that!~ I have to wait and see if my BP can go up at all because my research show the GSE does lower it ( darn catch 22s!) The box will stay sealed until I can figure this out. If this drops anymore I am lilkely to faint at the very least.If I cant end up taking it, it will be up for grabs for whoever wants to PM me. I also have some mushroom supplements I bought for $40 thru a DR that I cannot use due to the chance it might lower my BP even more. I am definitely not taking the mushrooms. I'd be happy to send the <still sealed> mushrooms out but only to someone who PMs me and tells em they cant really afford to buy them.
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So true, I felt so rushed into decisions; didn't have time to do research and didn't find this web site until everything was decided.
I am not sorry I skipped rads: tumor was on left side, I have severe osteporosis so was worried about rib breakage, part of the lung would be damaged, worried about,possible heart issues, other cancers etc. And the benefits were only a few percent
Anyway, I wish now I had done another mastectomy - no reconstruction and removal of the implant on the right side (it has a tear deep inside) but I felt such a sense of urgency to just get the cancer out of me.
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Good morning!!I have the same way of seeing things, am only 44, top shape, eat healthy and exercise regularly !! Had rads and then tried Tamo for 2 weeks, omg, what scrap that is..., started researching right after, started up on DIM and Calcium D glucarate, and included Omega supplements, I so strongly believe in what I m taking, and I too am tired of the oncs looking at me as if I wanted to die in the next 6 months if I did not take the poison,....
My husband supports me 100%, my oncotpe dx was 14, stage 1 , grade 1...., no mets, so what if I don t take the poison..., not a 100% guarantee of no recurrence..., If my stats were higher of having a recurrence in the next ten years, I probably would think differently, but that s not the case...
Now the oncs want to give me shots to put me in menopause ...., maybe I ll try that but if side effects, STOP!
Still, it plays with your brain a lot of the time, what if??? but that s the chance I m taking... I want to continue with a good quality of life, travel, and have fun, don t want to be an old lady before my time coping with horrible side effects, not my style!
Have to say that my mom passed away from ovarian cancer at the age of 63, 4 years ago, went thru hell with chemo and stuff, and don t want to have the take the same path....it s my life !! got tested for BRca 1 and 2 and all negative !
That s my journey, hope it helps some
Happy hollidays to all and courage !!
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I skipped rads, meds and all. To me, I had NO CHOICE at all with my other conditions. Having said that, there IS soemething I would have done differently if I had researched more. ... NO LX at all. With my early stage luminal A cancer, I would not have touched that if I knew then what I know now.
I am concerned now I may have 'seeded' due to the LX and INCR+ my chance of recurrence. Furthermore, I have lymphedema, which we are all at risk for . No wondering if that will recur- it is permanent. -
I'm still so against the meds, but I have a very strong family history - my mom had bc at 39, survived for 10 years. Her sister and my cousin on her side (not her daughter) both had it in their 20's - my aunt passed quickly but cousin is alive. We're not close and don't speak the same language, so I'm not sure what is up with all of that. Having an 11 year old daughter, we're eerily in almost the same position as I was when my mom first was diagnosed. SO I have these awful thoughts of the same things happening to her - watching me die for 10 years. I lost my mom when I was 18.
But, the good news! The hospital I go to has a hippie division - haha! I got the mustard seeds in my ears today and had guided imagery. Next Wednesday is my first acupuncture session, and Friday I get one of my two included massages (for breast cancer patients only). I think I can get at least 8 acupuncture sessions, perhaps more but I will have to investigate. You know, they bury the *good* stuff and you just have to ask everyone. But, my husband has been a very good voice for me when I'm overwhelmed.
My step daughter is flying in tonight for the holidays - I have to go pick her up at the airport at midnight (we live in NYC, so I have to take a damn train to Newark to get her, as hubby will be working). So, tons of stress dealing with cancer and holidays, but hubby cleaned the house while I was at my appointment today and is doing laundry now. So, I've been on wrapping duty and trying to get ready, in addition to real life.
It's so hard to take a deep breath sometimes. The tamoxifen thing really plagues me even though I haven't started it and was told to wait until after the radiation - one less thing to worry about (but I still worry!)
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NYCMOM
We each have our own situation. You alone can know what is best .As for : "Next Wednesday is my first acupuncture session, and Friday I get one of my two included massages (for breast cancer patients only). I think I can get at least 8 acupuncture sessions, perhaps more but I will have to investigate"
I really dont want to be a killjoy ( I LOVE massage and enjoyed acupuncture in the past too) BUT now....The needles and/or the massage *could* potentially be a concern for LE . Please ask and do make them aware of which side your surgery was on and how very recent it was , 6 nodes removed , etc ...just be careful.
Take Care!
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Thank you! The therapists are all in the cancer center - they all have my records and know exactly what was done etc. I appreciate your concern, that's one reason I've not had anything done yet!
Funny enough, my right side is the one that is most tense, but the left is where my mastectomy was.
I've loved acupuncture in the past, so hopefully I will find some peace with it again.
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I had accupuncture and it was great. They imited the needles used in my right arm to my hand. I'd do it again in the minute. I got a lot of pain relief in my back, chest and ankle. worth every dime.
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I'm SO excited to start acupuncture on Wednesday. This is what I've wanted since diagnosis - we met with one acupuncturist that supposedly works with cancer patients, but he was such a hard sell and an ego maniac. He told us EVERYTHING about himself and learned NOTHING about us, other than I have cancer. This practicioner is amazing. I feel like we know so much about each other - actually it's that way with our team (except our oncologist - not thrilled but you can't win 'em all). Hope everyone is smiling today. We're off to the gym in a while, before the holiday madness really sets in!
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OK, I know it's Christmas Eve, so I don't expect a reply right away, but I want to ask before I forget. Has anyone heard of Myomin? I was looking for a site for soy-free DIM and ran across something that mention this as an alternative for DIM for post-menopausal women. Some said that it is better metabolized for post-mono women, and called it a natural AI. Just looking to see if anyone has any knowledge about it.
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love this, reading throught the threads right now!!!!
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