Anyone with Tripple Negative?
I haven't started any treatments yet. I am ER-PR-Her-, 3 cm, no lymph node involvement grade II. 2 oncologists want to give me chemo/radiation/hormone medication, although I am tripple negative. My progesterone is 2% positive, almost negative, that's why. Has anyone out there completely avoided chemo and gone the natural way successfully with something and it worked? Can anything replace Chemo? I am scared of so many drugs, oh my God, the side effects. Anyone with tripple negative, please send me some information what natural therapy seems to be successful. Thanks.
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hello: i was diagnosed with triple neg back in february. This is my second time with BC. First time er/pr+ this time triple negative, did not need chemo first time, cause i am triple neg they told me its a must. all triple negative bc patients need chemo...good luck!
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Ladies come join us on Calling all TNS
There is a bunch of us there, you are very welcome to come join us.
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For what it's worth, I am a Stage 1, probably triple negative (weakly positive) with no node involvement; and I am not going to do chemo. I am 60 and diabetic, and I intend to do all kinds of natural things prevent a recurrence, including AIs and/or bisphosphonates. The risk of serious long term side effects that impact diabetes are driving me to a less toxic approach.
I don't know if it will work, but I am going to give it my best shot - maintaining a good BMI, regular exercise, low fat diet, keeping my bones strong with vitamin D and calcium, daily aspirin, my diabetic drug (metformin) which is showing promise in breast cancer research, working to lower my blood insulin levels, and a positive outlook on life.
One thing I will add...I am not a "kid" but rather a 60-year-old who doesn't want to spend the rest of her life worrying about amputations due to neuropathy from chemo. Or leukemia. Or loss of cognitive ability (we already have Alzheimer's in the family). Or cardiomyopathy. I've researched the different protocols, the statistics on the "benefits" each could provide to me, and the published research by MD Anderson research scientists whose analysis indicated that diabetics who undergo chemo do not have better outcomes. And neither of the oncologists I have consulted can offer any studies that contradict the MD Anderson studies.
Just make sure you do your homework before you make a decision. Once you've decided a course of action, you must look forward, not backwards.
Michelle
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Do come to the Calling all TNS thread......there are lots of us there. I chose to have chemo.... just 4 rounds of TC. Bilateral mastectomies, no rads, no hormones. I have a biannual Zometa infusion instead (of the hormone therapy) to strengthen bones. Every single person is different.... I encourage you to do your research and be at peace with what course of action you choose. Make sure you are really comfortable with your Oncological care. An informed decision is the best one that you can make.... for yourself, and your family.
Best of luck!
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I will check the TNS thread but just wanted to add, that I am really looking forward to hearing from this tumor board who will be reviewing my case and making a recommendation. The tumor board at John Muir comprises of many oncologists, gynecologists, radiologists and all sorts of experts. They not only look at written pathology and radiology reports, they actually look at the cancer on MRI's and see the pattern, the aggressiveness of the cancer, the tumor size, etc. and then they come up with treatment options. This will take place on August 16th. I will then have a better idea what I should do, but I am almost certain Chemo is their chosen treatment, not sure what length of time, though. Best of Luck to every one of you, dear sisters!
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HI I am triple neg. found that out after i had the wide excision. no lumps, just calcifications. I know they found it very very early but they have me on radiation, not chemo, I guess b/c it was DCIS and non invasive. went to an intergrative dr. at sloan kettering and she told me to eat organic meats eggs, milk, low fat diet, lots of veggies and fruits, not to grill any meat or fish, limit alcohol and caffeine and eliminate white flour and sugar, which i have to do anyway as I am diabetic insulin-dep as well. They dont know what causes triple neg. BC so this is what they say to do. Also she checked my vit. D level and found it to be low. she said low vit. D levels have been linked to breast cancer. so they put me on 10,000 mg a day and i will have to get a blood test in a month. From what i read, Vit. D can prevent cancer and recurrences. I am also doing acupuncture which helps me with my energies. I guess, if i were you, i would get one more opinion, if the third one says the same thing, then i would do as they suggest. There are newer chemos out from what i heard, that you dont lose your hair or get sick. Also a woman that i know who is not triple neg but had invasive breast c. went to several oncologists in nyc who all but one wanted her to go for surgery, chemo and rads, but she found a Dr. ruth oratz, in nyc 212-400-4904 who suggested she get radiation and didnt need the chemo, and she is doing fine, 4 months so far. so you never know.
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You are young and you are triple neg - I would be far more afraid of this agressive cancer than I would be of any traditional medicine. While I respect your decision, whatever it may be for yourself, do not go into this blindly. You only have one shot with this triple negative cancer, I did, and would also strongly advise you - to hit it with everything you can. All good thoughts to you and may your journey be uneventful.
Linda
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Hi Linda, yes, thanks I agree with you. Someone recently said to me that "chemo is your life insurance". I guess I will just go ahead and take the recommendation by the board on Monday. I understand the room is filled with oncologists, radiologists, gynecologists and many other specialists and they look at your case closely. They look at MRI's, not just radiologist's written reports. They look at the areas on the MRI and suggest what kind of surgery they think would be best. Mine will happen on Monday. What I am freaking about is that while I have already had a lumpectomy to remove the 3.3cm tumor, the surgeon told me I don't have clear margins and that she needs to do another surgery, as there was more cancer there. My surgery was on 7/28 and today is 8/14, 18 days later, the surgery has not taken place. My cancer was high grade, invasive. The thing is that this surgeon doesn't seem to be very involved in my care. I just realized that only her assistant is aware that my surgery date keeps on changing, due to their own schedules. .
I wonder if my cancer is spreading while I am waiting for the second surgery. Other nurses in other places have told me not to worry as they don't grow that fast. Of course, it grows very fast, I know that first hand, as I felt my lump grow from 0.9 cm after biopsy to 3.3 cm. in about 15 days. I know the doctors and nurses talk from stastistics, but I swear I am freaking out of my mind. The surgery is schedule for Wed. Aug 18th, however, if the board recommends a mastectomy, then I have to change my date yet again as that might require a trip to the plastic surgeon first. In California one can have reconstructive surgery right after surgery, in order for insurance to pay for it.
Should I be freaking out due to the 18 - 20 days the cancer is growing in my breast? Would you be worried?
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Hi,
Oh it is so nice to hear about someone questioning chemotherapy effectiveness, I too have been recently diagnose with triple negative, grade 3, lymph node -negative, on June 28, seeking alternative treatments. I have researched extentsively --- great deal of serious side effects from chemo.
Chemo is a huge business!!!! Anyone asking the difference of survival rate with and without chemo much research shows a difference of 6-7% !!!
Researching -- turmeric, fish oil, vitamin c therapy, etc.
Seeking alternative information ... anyone else out there??
Thanking you in advance.
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Hi Suzmor
My Oncologist told me that the statistics are as follows:
For tripple negative cancer, if a woman just has surgery, removes the tumor and has clean margins or does mastectomy, and takes no other treatment, then 53 out of 100 women can live 10 years or more till 70 - 80. 45 women relapse. The rest die of other causes.
If you do chemotherapy then out of the 45 who relapse, 22 out of 45 are alive for 10 or more years.
This is the statistics he has shown me. Cancer is such a serious disease that I am so afraid although I am questioning the effectiveness of chemo. It does seem like a big business to me, I swear, I have felt that from Day one. I asked the Oncologist right up, whether he had a financial incentive and he said yes, he makes his living with chemo. Would you please tell me where you researched about the side effects of Chemo? Would you please give me some links about chemo.
For tripple negative cancer, I have been told by many that there is no other cure, except chemo.
Would someone out there please give me some pointers on this subject. I feel so healthy and full of vitality after my lumpectomy. While my breasts are still bandaged, I feel absolutely great, otherwise. To think of putting poison in my body I just can't even imagine all the side effects and of becoming sick like a dog. There has got to be another way.
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So this is sort of a risky statment "Chemo is a huge business!!!! Anyone asking the difference of survival rate with and without chemo much research shows a difference of 6-7% !!! "
The alternative medicine industry is also a billion dollar a year industry so.... It's not like we pay for chemo and they give out alternative medicine for free... Chemo works. It saved my life and it saved my husbands life who is a 10 year colon cancer survivor diagnosed at age 35.
I don't really care how much money doctors and the makers of chemo make-it saves lives-that's priceless. 90% of certain childhood luekimias are curable-why? CHEMO!
Do I believe in alternative treatments-definetly and I follow an alkaline lifestyle and diet but I had chemo and would again. Yes, it can have bad se's and cause other cancers but I already HAVE CANCER I need to deal with that one first before I worry about another one.
And it is absolutly not true that chemo only cuts reoccurence by 5-6%. You have to take your age, then your stage of cancer and then determine our reocrrence rate. For me chemo cut my chance of a reoccurence in half. So if I had a 40% chance of it coming back it has now been sliced in half to 20% it's not a blanket 5-6% across the board.
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Dear Pure
Your email meant a lot to me, thanks so very much. I need to hear from people like you, otherwise, it is really scary. I will be doing Chemo pretty soon so need to learn about it, as much as I can. Your message contained a lot of good information.
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Hello Lovelyface,
I hope you're doing well since your surgery. I started chemo on 7/28, about 8 wks after my lumpectomy on 6/03 - Cytoxan and Taxotere, evry 3 wks/x4 - and am handling it much better than I expected! This chemo is a 2nd line treatment because I am 61 and had pre-existing health problems (mainly diabetes) that precluded the usual chemo for triple neg's, which I believe includes Adriamycin and Taxol. I am using complementary treatment/supplements while I'm on chemo, which have lessened the severity of the side effects. I checked these out with my Internist who uses integrative med in his practice.
Chemo is about the only thing that helps with TNBC; none of the other treatments seem to have any effect on it. The good news is TNBC responds better to chemo than the other types and is effective in up to half the cases. There is a test that can be run to determine if yours is likely to respond well - I think it's called the Oncotype DX, I'm not sure. Ask for it. You don't want to take any chances with this kind of cancer! The bad news is that because you're young, the cancer is much more aggressive; the good news is that because you're young, you should bounce back from the treatment easier! The right supplements can make radiation easier, too, as you'll likely do that with the lumpectomy. Find a good integrative doctor who uses complementary med or a good naturopath who can work WITH the traditional med treatment to make it easier.
Afterwards, hit those alternative treatments HARD because preventing a recurrance is imperative! If we've ever had an incentive to eat well and live a healthy lifestyle, this is it! Good luck and keep putting your faith in God - He is the one who will get us through this!!
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It's me! I think the actual name of that test is "Oncotype" - your onc will know what it is. God bless!
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Dear Laynetx
Thanks so much for your comment. I am wondering how to find a good integrative doctor, although I myself am quite learned in alternative therapies. After cancer, I lost faith in supplements and all the knowledge that I had regarding alternative stuff. You are absolutely right, we don't want to play around with this diagnosis. I am not that young, I am 52, and am past menopause, so I feel that I am luckier than if I was in my late 40's. I think being past menopause is a good thing for this cancer. I got diagnosed in July, and I have not exercised since then, been almost 2 months now. Do you think I have already damaged myself? I honestly feel that when our blood is moving, we are okay. I am one of those people whose health starts in the mind and since my mind is so emotionally drained right now, the motivation is missing. I have improved my diet much, no more sugar and very less fat, however, have not exercised. Would you please kindly tell me what kind of supplements are you taking?
Before cancer, I used to take evening primrose oil every night, Vit E, D, A and a multivitamin. I also used to take Velarian for sleep which menopausal women have a hard time with. But what happened to me has totally freaked me out. I feel that my cancer came about, due to taking a supplement Glucosomine which had a high dosage of soy lecithin. I took 45 tablets for a knee pain and the whole time I was taking it, my left eye was twitching and my breasts were painful. Unfortunately, I did not connect my symptoms to the pain/twitching, but upon learning, when I stopped the supplement, all breast pain and twitching went away. I was left with a lump on my breasts. The doctor tells me that I should be thankful for the supplement that it brought the cancer to my attention. Maybe it is true. But why those symptoms? I read up on soy lecithin, found out it works directly with your cells. I never ever want to take any supplements, and am trying to depend on food to provide me all the nutrition. I am making vegetable and fruit juice every day, at least once a day, but I will try to do this more often. And of course exercise every day starting from tomorrow, I promise. Mine was Grade 2, 3.3 cm, 0 nodes, however tripple negative. Chee - I am wondering if many tripple negatives are zero positive nodes. We both have zero positive nodes, wonder if that is common.
I am so happy to hear that the drugs are working well for you. I don't start chemo until the 21st, and believe me, I am not looking forward to that. Each day just passes somehow, and for some reason, they are moving really fast. I hope the time flies for us both and we will be done with this in no time. At least you are much luckier than I am, I got this at age 52, you got it at age 61, 9 years luckier than me. I will go through the pain of this disease emotionally, mentally and physically from age 52 through the rest of my life, whatever it is going to be. Good Luck, my dear. All my love and best wishes to you at this difficult time, may God bless you a million fold.
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Hi Lovelyface,
I highly recommend getting the services of a naturopathic doctor who can work hand in hand with your primary physician (provided you have a physician who is open to alternative methods) on developing a protocol that is designed specifically for you and your particular diagnosis. Like you, I had all clear nodes but my lump was significantly smaller than yours. Because of being triple negative, the oncologist still wanted me to do chemo but after a lot of research and soul-searching, I turned it down.
I understand your reluctance to take supplements but there are some things that are helpful that you just can't get through your daily diet. For example, when my vitamin D level was tested, it was exceptionally low so that was one of the priorities for me. I do drink 3 cups of organic green tea a day and add ground flax seed and flax seed oil to my food on a daily basis as well. I eat only organic foods and I removed all toxic chemicals from my environment in my hygiene and household cleaning products. As far as supplements are concerned I take: Vitamin D, Coq10, Melatonin, Calcium, Curcumin, Maitake, and Omega 3 oil. For about six months post-surgery, I also took powdered modified citrus pectin.
Some of the other things that are part of my protocol are: dry skin brushing, alternating hot and cold water in my showers, saunas, exercise, yoga, meditation, visualization and relaxation therapies.
It has been almost two years since my diagnosis and I am doing exceptionally well and enjoying life to the fullest. That is really all any of us can hope for.
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Hi Joytotheworld:
I too turned down chemo for about the same reasons as you. I have been three years now and also am doing very well. This year I was diagnosed with a tumour in my right breast, however it has no connection to the one on my left side and this time it is positive. I am 69 years old.
Diagnosis 1/08/2007 IDC >1cm, Stage 1, Grade 2, 0/2 nodes ER-/PR-HER2-
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I also turned down chemo. I am also diabetic and the potential long term side effects were more than I was willing to risk. I am hormone receptor "barely positive" according to the pathology reports. I've had 4 done - 1 on the biopsy, 2 on the lumpectomy tissue and 1 Oncotype test (which came back quite high). I am most likely triple negative; however, my onco put me on Femara because I do have a little positive going on.
For what it's worth, one of my very good friends just got diagnosed with her THIRD breast cancer. She had lumpectomy and radiation after her first, then a couple of years later she had a recurrence in the same breast. She had a mastectomy and hard chemo. And she was hormone receptor positive so she did five years of Tamoxifen. It's been 12 years and now she has DCIS in the other breast and is scheduled for another mastectomy. She is a paragon of healthy living and yet it didn't matter where breast cancer is concerned.
Chemo is not an insurance policy for everyone.
I'm taking my chances that I'll be fine. Statistics don't seem to mean a whole lot where breast cancer is concerned.
Michelle
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Hi Lovelyface,
I hope you are feeling a little better since your last post - the waiting is hard, I know!
I just want to point something out... From your "profile" info, it sounds like you are a woman with strong faith. My faith in God is the only thing that's getting me through all this! People tell me what a good attitude I have about it, but it's not me, it's God! Because of Him, I can truly say I haven't gotten overcome by fear, anxiety, worry. And I have lots of people praying for me and knowing this helps, too.
TNBC is scary stuff, I know. Sometimes spending time on these boards makes it even worse. But don't let the fear overcome you - we have a weapon behind us that is stronger than any disease, any chemo. Be wise and do the treatments; back them up with alternative med, etc. Do healthy things for yourself - and exercise is very important for tn's. Most of all, remember Who is in control and put your faith in Him. A positive mental state is important for our recovery - Try not to panic and get down, don't let fear overwhelm you. We must have hope! Otherwise, our lives are already over!
I'll be praying for you!
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Lovelyface - good luck with chemo. I'm trying to read all of these posts (and watch TV). What did the board say that reviewed your case. Since you are stage 2 and your tumor grew fast, I would bet they decided to have you do chemo. When I was 1st dx with BC last year, I had DCIS. It was a very small tumor. I had a BMX and reconstruction - had no invasive cancer and widely clear margins. I was ER-/PR-. Tamoxifen would do me no good and my cancer was small, so my onco decided not to put me on chemo. Only 8 months later, I discovered 3 small lumps in my breast, very close to where my first BC was found. It was removed and was IDC, TNBC. It had spread into the lymphatic glands, but not the nodes. PETscan and brain MRI were clear - thank God. I have faith in God and had someone come over and pray with me. I felt so calm after that. I met with 3 onco, including one at Sloan Kettering in NYC. All agreed that I needed to do chemo and radiation. I have the BRCA1 gene - 85% of the people with BRCA1 have TNBC. Have you been gene tested? Do you have family with BC? My sister has the exact same mutation (is ER+), so there are no definites. Since I have BRCA1, I am having a full hysterectomy/oopherectomy. My onco (I changed oncos after 2nd dx) said that I had a 2nd primary with this 2nd dx. So did the one at SK. It was in breast tissue that was left behind on the BMX (I am a VERY RARE case).
There are no definites. You have to make the decision that is right for you. I am young and wanted to throw everything I could at this cancer. It can grow fast. TNBC reacts very well to chemo. I have a friend who had stage 3 TNBC the first dx and got dx 2 years later with stage 4. She is doing okay, but is on chemo (a clinical trail for PARP). Most oncos say 3 years is the mark for us TNBC's.You can do chemo. It was tough, but doable!!! Do your research. Take care of yourself! Join us on "Calling all TNS" under the Triple negative section. This board is great!!! I wish you well.
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Kittycat
Thanks so much for your post, I learned a lot from reading it. I have the paperwork for doing the genetic testing, however, I am not sure what I will fill out, since none of my close family have ever had any type of cancer. Just recently I learned that one of my first cousins had breast cancer last year, she is doing fine now. They all mainly live overseas. I will try to fill out the papers for the genetic counseling, it has already been approved by insurance. My problem is that my Onc. and I don't seem to communicate. For. eg. today I asked him a question - how will he know once I finish chemo that I am in remission, and that cancer has not come back somewhere else in my body? He said by my survival. I guess the answer I was looking for, was that he will be checking my blood, tumor markers, etc. He said that he will not be giving any petscans or anything like that. I guess all he had to say was that he would be checking my blood. Do you know? Is that how they check. What is a tumor marker? I would like to be able to look at my bloodwork myself and check it too. I have had so much errors done already, that I cannot take any chances, i just don't trust doctors. I have been diagnosed for 2 months now, and he has not even ordered a Vit D check on me. When I mentioned to him today, I think he said something like that is not a normal procedure for his office. He tells me horror stories too. He said that if tripple negative cancer comes back in the breast, it is curable, however, if it comes back someplace else, it is not curable, but treatable, and that's when people mainly die. I asked him if someone with a similar diagnosis as myself, have died that he knows about, he said yes. I am not sure if I understand him. While sitting with me, he was flipping through the file, as if he doesn't really know much about me. He did order the "Big Lab", which was supposed to be done Monday, today. And I sat there another 20 mins. to get my results, I come home with a piece of paper which has no "normal range" column or anything, this paper means nothing to me. I want to be able to look at all my papers and know exactly what they are doing to me. I just can't trust any doctor, they overlook so much stuff. The infection has left me disfigured in my left breast. I have a feeling your case is not that rare, as I feel that my case is even more rare. I have pre-cursor to cancer, some sort of epithelial cells which are not normal in the right breast. With TNS, I think after chemo, I will have to make the difficult decision to have a bilateral MX, however, skin saving, but all those tissues inside the breast - I just am not comfortable. Do you have any theory what causes TNS? Doctor said it has been proven that it is not hormones, but environment and genes. What or how can environment cause it, do you mean like a microwave, or TV, or bad water or the pollution from the road? I really would like to know the cause of my disease. I am very confused today, after my meeting with this Onc. I am sure he is smart and all, but something is not right. I want to know more, I just cannot leave everything to someone else. I have to have control over my situation.
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