oestrogen negative cancer.......ER-
Comments
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My daughter and I attended a Breast Cancer Conference in San Francisco last Saturday. One of the researchers there, I believe he was from MD Anderson, said there is a study that shows that women taking Fosamax or Actonel for osteopenia and are ER- are having some positive benefits regarding their cancer. Has anayone heard of this???
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Just wanted to thank you for the article information. I am also er-neg and pr-neg. I had my first chemo of TAC March 1st and am scheduled for my 2nd round March 22nd. I am also BRCA1 pos. We've had lots of cancer in our family so I'm very interested in finding out as much as I can about the research that is going in. Thanks again for the info.
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Hi Ladies:
Okay here is another article to share on something FINALLY showing a significant benefit for ER neg breast cancer!!!!
Here is the section:
"Although this study was primarily designed to assess the effect of a low-fat dietary intervention on women with breast cancer overall, a preliminary sub-set analysis suggests that the risk reduction was greater for women with estrogen receptor-negative cancers, which is considered a marker for poorer prognosis. These women on the low-fat diet had a 42% lower risk of recurrence than those following a standard diet. Women with estrogen receptor-positive cancers experienced a 15% risk reduction, which was not statistically significant".
http://www.rxpgnews.com/cancer/breast/article_1479.shtml
I sure hope they study this deeper.
It sort of makes sense to me in that I was always thin...thin...thin....could eat what I wanted and always had butter in everything instead of crappy margarine.....liked my rich seafood sauces that I would make(with whipped cream),I ate well including fruits an dveggies. I never ever watched my fat intake though.
Hugsss
Barb -
Hi all..diagnosed in 2001, all neg, grade III, 5 ctmtrs, lumpectomy-4rounds of chemo-36 radiation trtmnts, very aggressive 9 lymph nodes removed and neg spread. I have this "lump" checked for four years and always told it was calcium deposits grouped...should have taken it out right away but was told not necessary. Watching atypical hyperplasia in other breast, so far so good no return. I am 53. Have weight problems and cannot seem to lose....
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looks like its been awhile since anyone posted here, but perhaps thats because we are few and far between. i found a lump on right breast end of june 05. i had mammo and ultra sound,then biopsy about a week later. on 7/12/05 i called dr from work for results, which i already had a feeling about. doc says positive for cancer, infiltrating ductal carcinoma. had lumpectomy on 7/25/05 and 1 positive node out of 17. er,pr,her2 neg. is that a good thing? how will that effect menopause? or will it? i will start tx on 8/30/05. 6 tx once every 3 weeks of taxotereand a/c, then 6 weeks of rads. thanks for letting me share.
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This is the thread I've been looking for. I match so many of these DX (2.2cm x 1.2 cm left breast at 2oclock. Popped up out of nowhere after clear mammo in Feb. DX in October. 4 out of 19 nodes positive. Grade 3. Very scarey to me as I never smoked, drink slightly (once or twice a week if that), but my paternal gmother had colon cancer at 42. Didn't die from it though. There is prostate cancer on my mother's side. My biggest thing was that I am about 20 lbs overweight and wonder if that has anything to do with it (diet). Keep the info coming and the support as somedays I need a booster.
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Hi!
I was diagnosed @ 36, April 2005, IDC 1.9CM, left breast. Er-, PR+, Hers2-. Had mastectomy, having 4 cycles of A/C, no radiation, no hormone pills, no tamox, nor herceptin. After, this I'm done with treatment. I am around 50lbs overweight. Tested for BRCA, negative. Even though my mother diagnosed 1 year ago, grandmother (maternal) diagnosed two days before me, and now myself diagnosed @ 36 years of age. -
My turn to post here,
IDc, stg 2 gr 3 ER-/PR-/HER2-, 1/39nodes pos. 1.5cm right side. Elected for bilat. mast. 4AC, 4 taxotere. Done.
I hate not being able to have any further options for tx. Don't you? I noticed that many of you talking about weight??? I've gained 20lbs since dx.(1 yr ago) Right before I got dx, I had lost 32lbs. Wouldn't ever say I was obese, but over weight. (make sense?) So, I too am wondering if its the diet or lack there of. I'm a junk food junkie and carboholic. Now with all of these new findings about diet and fat intake, etc... really has me nervous. Knowing theres nothing else I can do other than eat a VERY low fat diet (apparently?) is depressing. Is that what you all have read lately? And the french frie thing as a child? Dang . But I did also read that er- patients respond really well to chemotherapy. So, I have to bank on that one. (And trust in the Lord)
I hope you all are doing well and staying well.
Nicki -
I have been lurking for the last few weeks. Found a lump August 1st...Last mammo Fall of 2003... Like everyone here I can't believe I didn't feel it sooner. No family history of any cancers...was told by internist every other year was ok . Had mammo, us and core biopsy Aug 17, Lumpectomy with SNB August 24. 3 cm, grade 3, ER neg, Pr neg, Her2 neg, Negative lymph nodes and clean margins first time around. I am seeing my ocologist for the first time on Sept 6. I expect I will start chemo soon. Glad to see there are other women in my boat doing good. It was a real downer when the prognostics came back. I was hoping that there would be a third line of treatment. BTW you can call me Kris.
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Hi! I'm so relieved to find this website. Had mastectomy in 6/99 with 3 types of cancer (all hormonal+) Thought I was in the clear when I found a lump on my chest bone in 11/04. Grew so fast!! Diagnosis ER-/PR-/Her- (triple negative) cancer. Went from being cured to Stage 4. Had sternum resection, 28 days of radiation and now chemo. Never knew of anyone with triple negative breast cancer - everyone else I speak to is ER+/PR+. There's not much out there on this type. If anyone has any info for me (magazine articles/books etc.), I appreciate it. Thanks
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Her2Neu negative is a good thing. It means it is less aggressive than Her2Neu positive. Er- Pr- is not always aggressive. I was triple negative and my tumor happened to be a very aggressive grade 3 but I am sure that there are other Er- Pr- out there who only had a grade 1 or grade 2. Let us hear from Er-Pr- ladies who had a grade 1 or grade 2 tumor.
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I am er/pr-, her2+ and a grade 2, 6 on the bloom richardson scale.
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Hi, I was dx in Feb from a mammogram, no lump ever felt even by the vast multitudes that were feeling me up once they decided something was wrong (teaching hospital). I had a lumpectomy in March. Tumor was Stage 2, 2.5 cm, er-/pr- node negative her2 neg. Just finished chemo (4 a/c then 4 taxol) and am about to start rads.
It has been exceedingly frustrating trying to find out any info, especially in that mad rush at the beginning when you have to make quick decisions and BC talk is still a foreign language. Later on everyone you talk to who has had BC or knows someone who has says knowingly "and then you'll be on tamoxifen" and you have to say no, I won't and they look confused.
If this helps anyone who hasn't already made decisions, I finally found a decision tree on the NCCN web site under the physician section treatment guidelines. Go here: http://www.nccn.org/professionals/physician_gls/f_guidelines.asp?button=I+Agree#site then scroll down and pick Breast Cancer. It will open a pdf file.
As for fat, well, it can be added to the list of bad for yous. The recent "Ask the Expert" here on environmental issues was chock full of other scary things to watch out for. We just might have to learn to live on organically grown carrot sticks. -
Hi girls,
I am ER-, PR- and HER/neu- as well. I had my lumpectomy on 8/16 followed by SNB. Lumpectomy showed high grade DCIS plus invasion. SNB was negative. I start chemo in October and radiation after that. Onc says, "Sorry, that's all we can do because you have negative receptors." -
Thank you for the link. Very educational.
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Do you have a treatment plan in place yet?
Take care. -
We triple negatives have to band together! Come on!!!
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Finally, there are other hormone negative people like me. I was dx on 9-15-04. Tumor was 6.5 centimeters. Always had mamograms, the last one was 4 months before this. I always had dense breast and very cystic. This was a very fast growing cancer that came out of nowhere. I had chemo, mastectomy, chemo and radiation. After the first 3 chemo treatments, my 6.5 tumor had disappeared. All by Gods hand and lots of prayer. When I had the mastectomy, the surgeon only got 2 nodes out and they were both negative . I asked him if he was sure because most people have at least 12-16 nodes taken out and he said he stripped all that I had. I weigh about 114 pounds so maybe this is why I only had a couple of nodes. My hair is finally about 1 inch long now so before too long I can get rid of the wigs. I go back to my Dr. every 3 months. He said because of being hormone negative that he would be keeping a close watch on me. I am trying to find out more about the hormone negative cancers and maybe some of you can help. He calls me a walking miracle and he also says we know who the real healer is . God!!!
Teresa -
Hi everyone, am on a quest for information and wondered if anyone out there has had a similar experience to me or knows where I can get information from!!! I found a 1.2cm lump on my chest wall which was diagnosed as a grade 3 Her2 positve cancer. I had a mastectomy, 22 nodes removed, all clear, margins clear, scans etc show no signs of cancer anywhere else.treatment being offered is 6mths chemo and 6wks radiotheray!!! seems excessive....anyone any advice? thanks
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I had grade 3 ER negative, PR negative and HER2/neu negative tumor which was removed during a lumpectomy. Margins were clear but there was evidence of invasion. 1 lymph node was removed (sentinel) and was negative for tumors. My treatment plan is 4 rounds of chemo (A/C) plus 6 weeks of radiation. Each round of chemo takes 3 weeks, so I'll have 3 months of chemo in all. My tumor was not on the chest wall.
I heard that Herceptin is a drug that works for HER2 positive cancers.
I've also heard of women going through more months of chemo than you will be doing. It may also depend on how much they are giving to you and how often. There's such a thing called does dense chemo, where they actually infuse you every 2 weeks.
Hope this helps a little bit. -
My tx plan and dx were very similar. My tumor was almost 5cm and luckily no node involvement. I had a full node dissection. Had a lumpectomy and reincision and luckily my margins were clean. My tx was 6AC and radiation. I was also neg for er/pr and her2neu as well . I was 36 at dx and my onc wanted to treat aggressively.
I would do all that you can now . It might seem excessive to you now because it hasn't spread. However, you want to fight it with ever you can now to prevent it from coming back. I didn't have a choice about chemo it was a given just had to decide what the best tx plan would be for me. I met two oncs and since my hubby is an MD we were able to fax my reports to other docs and my husband could talk to them about what they would suggest. I would highly recommend a 2nd opinion if that will make you more comfortable. I thought the 1st onc I met with had a great bedside manner and was very sweet. The 2nd onc I met with (who actually was the one I chose) when he came into the room and started talking my husband said my face fell to the floor. He really said this is what you have and this is what you need to do. He really is a great guy and actually left onc research because his mother -in-law got bc and he wanted to be able to help take care of other patients. HE also calls back in a very timely manner when I have a question or problem . You also need to feel comfortable with your doctor and trust them. Even before he was my doctor and I called he always called back to answer my questions and he never wavered in what he thought was best. THe first onc I saw was really wishywashy and told me should would do what ever I wanted . I wanted her to tell me what to do, plus she wasn't good with follow through and returning calls. Three years ago I never would have thought that I would have chosen ONC#2 initally but it was a good thing. He might not have said what I wanted to hear at the time --but he was always confident it what he thought was the best course of tx for me.
Sorry this is so long. I guess what I am trying to say is take your time and don't make a hasty decision. Get several opinions from different doctors if you need to. Usually if the tumor is over 1cm most oncs recommend CHemo and radiation as insurance. Look at as if you have car insurance just in case you are in an accident or have your car stolen --but would you think of driving around with out it if you thought it was worth the risk? Good luck -
Hi Carolyn,
I'm not sure why the 6 mos chemo with node negative cancer, maybe because it was grade 3. The Her2+++ can be handled with Herceptin after A/C, but usually 4 A/C is the recommended dose for what you are describing **according to what I've read and learned** Everyone is different and you need to heed your doctor's advice, not mine. I had nodes positive, so I did 4 dd A/C & 4 dd Taxol with Herceptin and 28 rads. Still doing Herceptin every three weeks until my year is up in May. What was the 6 mos chemo that was being offered?
Kim -
I also am a er/pr neg but her2+. I am 35 and found a 7mm tumor. It was recommended to me by three oncs that I have 4 AC every three weeks. I was hoping to escape it since it was so small but no. I also had negative nodes, a bilateal mastectomy...didn't want to take any chances, and no vascular invasion. Well the point I am trying to make is that chemo is recommended for er neg cancers because there is no other treatment. I think you were recommended for 6 cycles because of the size of your tumor. In retrospect...keep in mind I am I just had my second AC today...chemo really isn't that bad. For me it is like volutarily giving myself the flu for a week. Today I am half way through.
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Hi All I too am er/pr neg her2neu neg. my dx was 1.2cm, nodes neg., pet/cat scan neg. mastsectomy and tx a/c every 3 weeks for 4 times. my second tx is Monday 10/3 So I will be 1/2 way thru....so many have different treatments...Glad I found this site I'm always trying to find others that are negative...very hard to find...All the women I know that have bc are positive er/pr....
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Hi Prayer just went to the post on flaxseed oil very interesting I was told by a friend that faxseed oil was good with cottage cheese I think I will try it thank you for the information
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Hi ER- friends, Carolyn, since your tumor was a 5, did it just pop up over a couple of months? My tumor was 6.5 at dx, but completely disappeared within 3 chemo treatments. I started having too many things wrong with my blood so my doctor then started me on Taxotere (I may have spelled it wrong). I had 2 treatments of this and started having some skin and nail problems so we decided to go ahead and do the mastectomy followed by 4 treatments of Taxol. I didn't have any bad reactions to Taxol at all. Then I had 25 doses of radiation. That went very well. I finished that up at the end of June. So my treatments lasted from the end of Sept. to the end of June. Do any of you have any numbness and tingling in hands & feet from the Taxol? I am so glad I found this site.
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I was dx March 2005 - could not feel lump - CAD mammo caught 'suspicios' area. Had core needle biopsy - chose masectomy to make sure no cancer recurrance (15% recur with lumpectomy - to breast) Lump was 11 mm (1.1 cm). Was told i wouldn't have had chemo except for fact that i was er- (as well as pr- and her-). After my biopsy, i found on website that core needle biopsy can spread cancer. Panicked! Called doc and he said 'theoretically that is correct'. Then added 'but we believe they just line up where they are.' Or something like that. That really panicked me. Then had surgery and lymphs negative (12). Then just last week i searched google for core needle biopsy and found that the John Wayne Cancer Institute issued a report in June of 2004 that core needle biopsy's spread cancer cells. They found a 50% higher rate of cancer cells in lymphs with women who had a core needle biopsy. Now i am really panicked! Even tho my lymphs were neg i know that cancer cells can get into blood stream as well. Too late for all of us who had core needle biopsy's but i have warned other women not to get them no matter what the doc says. I wish i could do that part of all of this all over again - it weighs heavily on my mid.
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Hi Melica and er-friends, I have never heard that about having a core biopsy. Why haven't they gotten the word out. I had a pet scan after the core biopsy which showed cancer activity in the right breast, some on the chest wall, and some under the right arm. Afer I had the mastectomy the Dr. was only able to get 2 nodes out which proved to be negative so even some of the scans may not be 100%. No cancer on the chest wall either! After reading back on some of the older postings on this website, I could not believe how we all have so much in common. Mostly about the lump coming out of nowhere, almost overnight. I always had lumpy breasts so it was always hard to do a self breast exam but I had been getting yearly mamograms which only showed up cysts the 4 months before I was dx. I am really not worried because I have God in my corner and I give all my worries to him. It really works. As my Dr. says I am a walking miracle.
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Well, that REALLY scares me because I've had three core needle biopsies. One in the emergency room when I first showed up at the hospital hoping to get in for treatment. The next one was because they lost the results for the first one! The last was halfway through treatment to satisfy the requirements of some study I was a part of.
Does anyone know what it is about the core needle that make it so dangerous in this respect?
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