For Informed People Using Alternative Treatments
Comments
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My husband hid the iodine supplement I just received and told me not to take them because he read all the 1 stars reviews on Amazon (he always only reads 1 star reviews! It drives me crazy) and he thinks it is going to hurt me. I have not read these reviews so I have no idea what they say but do think we all need more iodine in our bodies so I am torn.
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RE; oil of oregano - sometimes it is hard to take by mouth. It also works if you put it on the soles of your feet.
Re: Iodine - my PCP put me on iodine after a 24 hour urine test indicated it was low. I've been on it for the past 10 months - and have noticed no differences in how I feel. My nutritionist, when designing my post-chemo and radiation protocol said to discontinue the iodine when I was done with the bottle. I haven't yet asked her why, but I will when I speak to her after some blood work this month. In the meantime, I've read that iodine and selenium are linked.... not an expert by any means, but apparently taking iodine without selenium can lead to iodine toxicity and concurrent thyroid problems: http://chriskresser.com/iodine-for-hypothyroidism... now I'm alternating - taking iodine one day and selenium the next.... sometimes we have to fly by the seat of our pants.
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another thing I've read about iodine - that some women with breast cancer use iodine by applying it topically on their breasts....
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when I was at the university I got a planar wart on the bottom of one foot: as I'm a life-long pedestrian it was very inconvenient, my first lover I was living with that summer told me to apply iodine to it often which I did & it eventually dried up. matter of a week or so as I recall. I've been currently fatasizing cannabis oil topically. seems to me it would have to be the real kind, not the cbd, as it would be more sticky
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jojo - i asked Dr. Wong if the diet i ate caused me BC and he said not really, no one knows...blah blah...BUT when i told him i started eating everything as organic as i could, he then said he doesn't eat foods from supermarkets, when he bought chicken, he only got them from the farmers market. it's funny is it?! he said since my ER/PR + being so strong, he said i'll benefit a lot from taxmo and he'll prescribe me some herb to lessen the side effects.
hipz - thanks for sharing. that really makes me feel good about my decision (leaning towards no chemo). i really can't be sure if i will be fine if i do chemo. especially when Dr. Wong told me my health is not in good shape. if i went with it and had some permanent damage, i'd be kicking myself and it's too late. like my nurse friend told me, if i build up my immune system, i still have a fighting chance. i want to give myself a chance to live a healthy life style and balanced mentality.
the thing my friend and i were talking about is cancer means uncontrollable grown of bad cells in our body. and healthy ppl have a strong immune system to kill them all. so the question is chemo doesn't kill just bad cells, it kills everything it touches. it's like you see there's roaches in your house, the first solution the medical opinion is to trash the house then rebuild it if the skeletons are intact...it just doesn't make sense.
re iodine - my mom used to be a nurse, and she always uses it on me when i had a cut or something, only external though. i recently red that seaweed have a lot of iodine and it is preventive to cancer. i went to a Canadian website to buy some organic seaweed. it's quite yummy...
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my sister said yesterday that she used icelandic seawee. for iodine. she doesn't have our health problems that I know of. sounds good though being far from japan
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Juneping....Wong is putting you on Tamoxifen? With an herb to lessen side effects? He did say that Tamoxifen is powerful, but that his herbal tamoxifen is just as powerful. When I pushed for more info on Tamoxifen, he said he does NOT recommend it as it has too many negative side effects! I got the feeling, he doesn't want to 'tell' you what to do...doesn't want to go up againt standard of care too much as he has been chastised in the past.
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This is a great site to help keep us informed on policies that affect all of us.
Manhattan Institute for Policy Research
http://www.manhattan-institute.org/html/miarticle....
Type FDA reform in the search box and browse the info.
click on Topical index of Publications- You may wish to browse around.
"Obsolete policies now stifle innovation and suppresses investment in
the medicine that can provide the best cures at the lowest cost. We are at the beginning of a medical revolution with the potential to
extend and dramatically improve the quality of our lives—but only if we
get beyond a framework of scientific and economic regulation that is a
relic of the past".--The Cure is in the Code, by P Huber.http://www.manhattan-institute.org/html/miarticle....
"the FDA is killing people because of unnecessary delays in approving
new medicines. Unfortunately, there is little doubt that medicines are
trafficked in interstate commerce, so Congress can create an FDA."http://www.manhattan-institute.org/html/testimony_...
"Given what molecular medicine knows and can do today, tying the drug
licensing process to high-level clinical symptoms and the statistical
study of large groups of patients is inherently anti-scientific. It is a
process that deliberately loses molecular details in the crowd,
collapses biochemically complex phenomena into misleadingly simple,
one-dimensional, yes/no verdicts, and will often reject good drugs that
many patients need." -
I think I am going to look into he seaweed/kelp route for iodine as that seems to be safer but haven't researched it too much yet so I could be wrong.
Juneping- Just an FYI - I am on Tamoxifen. I took it for 5 years the first time I had BC and had no issues with it personally so am taking it again this time around since my tumors were again est/prog positive. I am BRCA2 positive and have a very strong family and personal history with BC (mother, 3 maternal aunts, 2 maternal cousins all had BC) so I am taking Tamoxifen due to these reasons (and more). I changed my entire eating and exercise routine after my first diagnosis (I am now a vegetarian) but my genes were kind of staked against me at least were it comes to breast tissue (which is why I had a double mast.) Either way, as I said about chemo, your treatment is your decision and the better you feel about whatever you decide the better the outcome IMO. I am not judgey about who does what treatment - I just like to read and share
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Junepg, I agree with hipz that you deserve the same respect from all of us no matter what you choose. I respect your right to make your own very personal decision(s) and will support and respect you, no matter what.
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jojo,
He thought taxmo was right for me. Mine was 90%...but I'll ask him more info when I finish this batch of herb.
Oh the herbs pharmacy he uses, they boiled them for us and packaged nicely. He said the powder form was not good. I am very impressed. The pharmacy looks so nice too...very clean and professional.
Hipz, light&wind,
Thank you. I have my second opinion in early feb. Then I'll make the decision. I am not gonna lie, the more I read the more I got confused and more leaning towards alternative. Anyway, will share here.
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Juneping...I am so sorry! I re-read my post and I hope it did not come across the way I did not intend it to. I was just trying to clarify it was Tamoxifen he was recommending as you are calling it Taxmo...is that a company name for Tamoxifen? Really sorry for my ignorance, I don't know much about Tamoxifen companies etc...LOL
Also, the reason I ask, is because I have been frustrated with getting a straight answer from him about Tamoxifen etc...he finally told me "No" he does not recommend it, his herbs are the same but of course no study to prove it. I was worried about Tamoxifen as I have a family history of uterine cancer and I think Tamoxifen can cause uterine? Also, I had read that Tamoxifen was not as effective with ILC cancer which I have...so, it was an easier decision for me. Really hard to make tough decisions, I know! I applaud you for being open to many protocols and treatments! It really is a personal choice! xo
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Also, you should go with whatever he recommends, if you decide, as we are all different. I am highly ER positive, so it does get frustrating and confusing which way to go.
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jojo - just my two cents - I didn't take your earlier post the wrong way if it makes you feel better
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@hipz...haha...thanks!
Guess I am on edge lately!
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hI,
Blessings to you all. I welcome this is a forum for support. Avocados - very good. At the Karolinska Univ. Hospital they say selenium
tabletts are good for "stopping tumor activity". All health food fans know this is nothing new, selenium is good for many things.
Hugs
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I was taking Iodine, but when my naturopath reflex-tested it, i didn't test positive for it. So now I just make sure I'm putting seaweed leaves in my salads. My naturopath says that she thinks of everyone as having a distinct combination of supplements and treatments that will restore their health. And she determines it by reflex testing and monitoring what works. Her system has been amazing for me. After having a chronic leukemia and chronic low white blood cells for 12 years, it only took 2 monthes of doing exactly what she tells me to do, and I am now leukemia free and my white blood cells are now 3.8, in the normal range for the first time ever. And yesterday i got back test results saying they couldn't find any leukemia cells in my blood. I'm hoping my new immune system will clear up the BC CTCs in my blood, which I think were high (>5 per 7.5ml blood) because of my lack of immune system.
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jojo,
Lol no worries....taxmo is taxmoifen. I was too lazy to type it all...sorry.
I heard the manufacture matters. Can someone tell me which one you are using and cause no or less side effect ??
Thanks
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Hello ladies. I'm 38 and still in chemopause (its been almost 4 months since my last chemo dose). That was the one treatment I did want. I just wanted to see what my natural hair color was again when it started to grow in. Just kidding! I was told the tumor would shrink and I could save my breast. Wrong! It didn't. Now I have awful hot flashes! BTW, my one inch hair is brown!
I chose bilateral mast in order to not deal with this again. I didn't have to! I wanted to. But I just don't think its right to suppress my hormones at 38! No offense to anyone, but I'm too young to become old from drugs. I just do not feel it is right at my age. My fiancé and I don't want to stop having sex! And that's what will happen if I can't enjoy it. Add the fact that there was no lymph involvement, good margins, and no cancer anywhere else. Thank God! Plus, I am a health nut and I know all too well of the horrendous toxicity it will cause. For goodness sake, I do coffee enemas sometimes to detox! (Gerson inspired diet with Lugols, etc.) I eat extremely healthy, take vitamins, and am active. (Tae-Bo-er) (well, not now because I had chemo and surgery recently). I am currently getting my TE's filled. Holy tightness! And having a cold/cough from immune suppression just makes it more uncomfortable. Ugh, I can't wait to get these things out and new ones in. Who knows how long that will take, but my goodness it is very unpleasant. Anyway, I am waiting for my period to start again. My plan is to get the first period, freeze my eggs, then consider hormonal therapy, even though I dread the Tamoxifen because it's number one side effect is hot flashes! (I have never had a child) I am seeing my oncologist Monday and I know she will want to start me right away. Two days later I will get the results from my gynecologist if I am in true menopause or not. I wish the appointments were reversed so I could go into my onc appointment armed with my menopause status. I'm afraid my oncologist will tell me that I cannot wait to start the drug. Also, I'm afraid my gynecologist will tell me that I will never get my period again. I cannot sleep because of all this stress! Literally, no sleep AT ALL twice this week. I've gotten about 10 hrs of sleep this week. I'm not kidding. I feel like I'm in a fog, but I can't fall asleep! I cannot turn the wheels off! I just worry and the hot flashes and pain from the TE's doesn't help. I've tried pain meds and they give me nightmares! I do not like to take drugs anyway. I just lay in bed, propped up, uncomfortable, and watch the clock tick while my cat and fiancé are comfortably snoring away. I would like to try an alternative to the drug. My oncologist is going to love that news! I've heard that grapeseed extract is an excellent alternative. I'm just a mess! Any advice? I am going to see a naturopath as soon as possible too. -
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I'm taking 5-L-MTHF to help my body get rid of estrogen. It's the metabolically active form of folate. I have that genetic problem (which supposedly 30% people have), where I can't process folic acid. I could feel a difference in my body when I started taking it. Also, I'm taking 20mg of Allergy Reasearch Group Melatonin. I'm taking it because my naturopath prescribed it, and because studies in vitro showed it having anti-proliferative effects on BC, and in-vivo it helped shrink tumors in people whose tumors were resistant to tamoxifen alone. But, for me, it has this great side effect of putting me right to sleep. At first I was taking the melatonin in a sublingual form from another brand. My naturopath kept telling me that it didn't test positive when she did ART (autonomic response testing -which I sometimes lkind of mistakenly refer to as reflex testing), but I persisted in taking it because I wasn't a complete believer in the ART testing then ( i'm a recent convert) and I liked the idea of taking the melatonin. Well, I kept increasing the dose, working my way up to 20mg, and my liver enzymes kept increasing. When we backed out of everything to try to figure out the elevated liver enzymes, it turned out to be the melatonin. But, I ART tested positive for the Allergy Research brand of melatonin, so I nervously started taking it, and after a couple weeks of taking it, my liver enzymes are still normal. I now suspect that it was the artificial sweeteners in the sublingual melatonin I'd been taking that made my liver enzymes go up. My naturopath told me a story of another patient she had a few years ago who came in with very aggresive breast cancer, lumps everywhere, who didn't want any conventional treatment, including surgery. My naturopath said that all that she did was have this woman stop eating aspertame, take a few supplements, and all the lumps were gone within a month and a half. When the woman returned to the oncologist who had diagnosed her, the oncologist couldn't find any sign of cancer. This story was what made me suspect the sorbitol in the sublingual melatonin. I think lots of people are probably just fine ingesting artificial sweeteners, but for some of us, our bodies can't handle them. If you decide to take melatonin, you might want to start with a tiny dose, and also, work with a naturopath you have reason to believe in.
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kireeus,
I didn't know we could see an oncologist directly...isn't it usually after going thru the breast surgeon first.??
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I don't know the details of the story my naturopath told me. For all I know the woman in the story submitted herself to a biopsy and then refused surgery. Or maybe they told her she needed to shrink the tumors before surgery. I didn't ask too many questions because interesting as the story was, I mostly wanted my doctor to focus on me. And I didn't think it pertained that closely to me because I didn't think I ever had consumed an artificial sweetener. It wasn't until I was telling the story to somebody else and also telling them about how one brand of melatonin made my liver enzymes go up, and another brand didn't, that I suddenly realized the possibility that I had consumed an artificial sweetener. When I got home I got out my original bottle of melatonin, and sure enough, Sorbitol was the first ingredient, mannitol was second. And since I'd been working up to a larger dose of melatonin by taking more and more small dose tablets, I'd been consuming more and more of it. It was a Eureka moment for me. But again, I'm sure, obviously, that lots of people are able to eat artificial sweeteners with no problem. Just not me apparently. And I'd been taking the same brand of sublingual vitamin B for years. I'd only given it up when it tested negative by ART. So I've probably been taxing my liver with small amounts of sorbitol for a long time.
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Ladies, is there an alternative for femara? My onc thinks that I am taking it, but I refuse. My joints hurt badly already. On a heart monitor now, due to (I am sure chemo and rads). I am 45 and can not believe I am dealing with this. Very healthy before being diagnosed. I also have/had thyroid cancer, which was detected via pet scan during my initial diagnosis. Total thyroid removed. Any tips will be appreciated. Brac 2 +
Michele
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Kireeus,
Very interesting info.
Can ART, autonomic response testing show if someone has cancer? What other information can this test reveal? Does it cost a lot to have this test? You have found a great naturopath! What else are you taking to prevent recurrence?
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kirreus,
thanks for explaining. i think when i was first DX, i was in such a rush to get the tumor out, i wasn't even thinking..
still, i waited little over a month to do it..bc the BS schedule. i still think she's a very skilled surgeon, no infection, my arm is moving again still a little stiff.
now i have more time to think....
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Being new to ART myself, I'm still kind in a state of shock that something like this can work. This past week when my pet/ct scan came back saying I had a primary tumor where my scar was, my naturopath used ART and said no, there wasn't cancer in the scar, but there was a cancerous lymph node up towards my shoulder (this wasn't on the pet/ct. The next day, I went for an ultrasound with a second radiologist who used the pet/ct results and ultrasound to look for cancer in the scar. She concluded the exact same thing my naturopath concluded, scar is just inflammation and there is a cancerous/suspicious node near my shoulder measures 6mm. My naturopath tested a homeopathic version of mistletoe on me called Viscum, and said that I test so strong for it that I might be able to kill the cancer in the node in the week before surgery. I'm having a port put in anyway, so I don't mind having the node taken out. And naturopath says it will be easier on my immune system to remove it. When I came back to naturopath's office after the ultrasound and reported to her staff what I thought was an amazing feat, they told me that she does it all the time. I have no idea if everyone who uses ART has the same type of success. I did find out that she learned her method of doing it from a German doctor named Klinghardt. With my naturopath, ART is part of every appointment. Every appointment I bring all my supplements I'm taking and she ART tests them. She has me stop taking some, she adds in new ones. She also tests the IVs she prescribes for me. She accepts insurance, so her appointments are paid by that. The IVs aren't covered, and neither are colonics or ondimed therapy ($25,000 German machine that uses meridian frequencies - Suzanne Sommers talks about it in Knockout and says she has one in her own home).
I can tell you what I'm taking, but from what my naturopath says, this combination will uniquely work for me and may not benefit anyone else, even if they presented with the exact same symptoms. But for what it's worth, here's my treatment plan:
5 gr modified citrus pectin 3x a day to stop breast cancer from spreading- the research on this stuff is amazing, the brand ishe prescribed is pectaSol-c. It's the most expensive thing I take, $80 for a two week supply.
1gr c-statin twice daily to stop angiogenesis made by Aidan
1mcg l-5-mthf daily to help me get rid of estrogen - this is the metabolically active form of folate
Thorne vitamin D3 5000 iu daily
Metformin 500mg twice daily
Pleo zinc (made by Santum) it's a homeopathic zinc, I had lost my sense of smell-now it's back
Medullosseinum -this is a homeopathic remedy that she used to stimulate my bone marrow to make white blood cells, when I started seeing her 2 months ago I had had chronic leukemia for 12 years and expected to have it for life, now for the first time in twelve years, I am leukemia free. My WBC went from 1.3 to 3.8 and no leukemia cells in blood.
Viscum - homeopathic version of mistletoe, stimulates my immune system.
At night, 20mg Melatonin made by Allergy Research- I'd seen her for a few weeks before I tested positive to take this, that's kind of why I was taking the other brand, before I learned to respect the ART testing
Low dose naltrexone (prescription from compounding pharmacy) started at 1.5 gradually moving up to 4.5 before bed. It turns off endorphin production for a couple hours and body rebounds and makes loads of them. The idea is that endorphins kill cancer cells.
Poly MVA IVs twice a week for a total of 25 IVs - this showed up on the expensive Greek chemo sensitivity test I had done as killing my CTCs (20% of them in vitro) but it also boosts immune system. You can also take this stuff orally, it's considered an alternative form of chemo
Vitamin c IVs - I've done 4, waiting for port to do more, it's hard on my veins. According to chemo sensitivity test this killed 35% of my CTCs
Colonic irragation -8 sessions- turns out some parasites did come out after 6 sessions, and my waist shrunk by an inch, also I'm hoping it will help with my absorption issues, and help to rid of estrogen and toxins
Ondimed-10 sessions, I don't know if this was mainly to help with the Lyme disease? But she said it would help everything work better
Vegan ketogenic diet (ultra low carb) no meat, with the exception of wild caught fish, no fruit, no potatoes, not even large sized beans like limas, no soy, mostly just nuts and vegtables, no alcohol, no dairy. I follow this religiously. It's gotten easier the longer I do it. Socially, it's awkward. And I'm now 17lbs lighter then 2 months ago.
Daily coffee enemas (haven't started this yet- just ordered supplies and special coffee from sawilsons.com). It's supposed to stimulate liver and gallbladder to remove toxins.
CBC and liver function blood test once a week
To try to learn more about ART, I visited Dr Klinghardt's website , Klinghardtacademy.com, and I noticed somewhere in there that he had a list of practitioners around the country, but I don't think it's comprehensive because my naturopath, Dr Darvish, isn't on his list. I'm new to energy medicine, I don't understand it, but like my husband says, if it works, I don't need to know why it works or how it works. It's just great that it works.
I found Dr Darvish when I saw a friend go from horribly sick, to looking darn good. She gave mr Dr Darvish's name and told me that she'd found her from a list on Suzzane Somer's website, or maybe from the back of one of her books (sorry I can't remember).
I'm still stunned that tis kind of doctor can exist. But I'm hoping there are lots of them out there.
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Thank you for this thread. I have been availing myself to acupuncture for 25 years before my diagnosis, so it was a natural fit for me to want an integrative, complementary approach. I started a mediation practice three years ago that has been really helpful when I have hit the lows on this journey.
In the course of second and third opinions, I was referred to a Chinese Medicine specialist who recommended a number of herbs and supplements to support my immune system. I have continued with them and drink a whole lot more water than I have before. I continue seeing my acupuncturist twice, weekly. My goal is to sleep more, stress less. I have read a lot suggesting to eliminate alcohol. Surprisingly, this has been harder than I thought (I had previously given up alcohol for a year after a traumatic brain injury.) I don't drink more than a glass of wine, but am wondering if moving to vegetarianism might help with this.
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I am curious about your experience with modified citrus pectin. I was taking it, but have slacked off recently. It does not mix well with water and the instructions i have is to drink it only with water, on an empty stomach. I appreciate your reminder of the benefit it provides and that may be the impetus to return to it tomorrow.
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