oestrogen negative cancer.......ER-

Hello all,
I researched the core needle biopsy thing and found many, many papers that said that it does not spread cancer. I even asked all of my doctors and they said the same thing, including a leading research pathologist in the area of BC who I paid for an independent review of my slides. He specifically said it does not work that way and that the bodies repairative processes that start working when we have a cut or an incision seems to kill off cancer cells especially the longer the time between surgery ang biopsy. This was confirmed when I did my research. I could possible look up the sites again if you want.
We will all be ok. I believe that. The faster it grows the more likely it is that chemo will work.

Teresa44 & er neg posters
I also had problems with cysts in right breast. (Right breast had cancer.) Mammo's also found 'densities' in right breast. (I requested the mammo radiologists reports for past 5 years to discover this 'density'stuff.)
The 'densities'started in 1999 and that year they did an ultra sound. But never did another ultra sound even though one report after 1999 said the 'densities' got bigger. Also showed calcium deposits. I am upset that no one followed up with more ultra sounds and intend to discuss with my gyno at next visit.
By law you have a right to request the mammo radiologists report sent to your doctor which is more detailed then the simple letter you get after each mammo. I was surprised that no one paid attention to these 'densities' after 1999. And the sudden appearance of 'calcium' was ignored as well.
Pet Scan -- i had a pet scan in Aug 2004 - long story why - had nothing to do with breasts. But it showed no cancer. So i was very surprised when i was diaognosed the following March (2005) with cancer. I asked my onc about this and he said that pet scans weren't perfect. I then researched it on web and found that pet scans only find 'active' cancer cells and cannot detect 'dormant' cancer cells. Guess that means my cancer was dormant in Aug of 2004. I haven't researched this to see what goes on with 'active' and 'dormant' phases of cancer.

Don't worry about it Melica- no harm done. This is something that needs to be looked at more closely just to be on the safe side.



I really suffered with my second core needle biopsy. It hurt like hell-I'm sure I came close to tearing off the armrest- and I remember blood running down my arm and back and seeing quite a bit on the floor afterward and it did occur to me that here I have all these cancer cells and couldn't some of them have escaped into the vein that had obviously been hit by the needle. Were these cells now coursing all over my body looking for someplace new to settle? It makes sense to me.



I think in my case that they had to do a core needle anyway. My tumor was really big and they wanted to give me chemo before surgery. They said that the fine needle aspiration that had been done previously might not be accurate. I don't think I needed three though!



BTW- the other two core needle were almost painless with very little bleeding.

Teressa,
Sorry I have not had taxol and am not planning on it so I can't answer your question. I am on 4 AC, just finished my second. I have lost 95% of my hair but not all. Have to wait and see how much more falls out. I cut it really short and wear a wig to work...I work with high risk kids, and nothing the rest of the time. Getting pretty used to my bald head. I have been told that all my hair will come back and should grow at the rate it normally does. Hoping that is all true.

Teresa
I had 4 AC's. Last one was July 22. My onc told me that i would not have had chemo except for fact i was er-. My tumor was 11mm - less then 1/2 inch. No lymph node invasion. Could not feel the lump. First chemo had no effect on me but second made me tired, third made me extremely tired and after fourth one (slept 12 hours a day), it took all through August to recuperate. I lost 30 lbs. The chemo made me so tired and changed my taste buds that i couldn't eat or could only eat fruits and cereal. (I needed to lose 30 lbs - so no great "loss")

The 'A' part of AC chemo guarantee's hair loss but i still had hair by chemo 2. But i was having lots of hair falling out so i cut it to about 1" but it hurt when i laid down to sleep. Onc nurse told me this is common complaint. So i had husband shave it off. But my hair did try to grow between chemo's. Stubs like a man's face whiskers. Nurse said that was unusual.

Wigs were so expensive ($200 & up) and insurance didn't cover it so I ordered a $38 wig off web and hoped it would look natural. It did. I had people ask me at chemo center why i still had hair and many relatives shocked to find out i was wearing a wig. So an inexpenisve wig doesn't necessarily mean they will look phony.

I am 63 - one child who is married. I don't smoke (quit 10 yrs agao), don't drink alcohol, a semi vegetarian, was a skinny stick my whole life, till I got on prednisone which gave me an extra 40 lbs. Prednisone does suppress the immune system so I have wondered if this had something to do with my breast cancer.

I researched everything step by step on web. Didn't think to research core needle biopsy and that weighs heavily on my mind. I keep busy to get my mind off of cancer. Cleaning my basement of lots of paper junk I have saved for years. I worked in political campaigns and saved names names names! Brochures, campaign letters etc. Big mess but does help occupy my mind to fill big bags full of this collection to send to the garbage. I find if I keep busy i have more peace of mind. And life has new meaning to me now and this huge political paper collection doesn't fit in.

Hi Ladies,



I've posted a few times in the past and have found these boards very encouraging. My mom was diagnosed with tripple negative bc a few months back (stage 3, grade 3). I know I've read about some of you tripple negative ladies going years NED, but have not read any new "inspirational stories" recently on this board about this. I'd appreciate it if anyone with a similar diagnosis could share their encouraging stories (i.e. stage at diagnosis, how long with NED and any other info you'd like to share). I think I just need a pick-me-up and am sure other ladies on this board with tripple negative cancers would a appreciate it as well. Also, any info on change of diet and exercise habits or other lifestyle changes that you think kept the cancer from returning, if any, would be great. It seems there is not alot of research on this type of cancer, so maybe we can conduct a little "reasearch" on our own.I just need some hope that this type of cancer is not necessarily doomed to always return. Thank you all again.

Dear Tryingtocope

I am also a stage3 grade3. My tumor was 6.5 when dx and it appeared out of nowhere. No family history, I don't smoke, I breast fed 3 kids, tried to do everything right, stayed active, don't drink etc.
I have a very strong faith and great christian friends and churches who put me on their prayer lists. By the time I had 2 A/C treatments my tumor had completely disappeared. By God's hand!!! Finished my treatments, had a mastectomy, had 0 positive nodes,(my Dr. just knew that I would have several positive nodes), more prayer, more chemo (Taxol) and then 25 radiation treatments. I am now 6 months out of treatment and everything looks fine. I just go back every 3 months. Dr. wants to keep a short rein on me due to it being hormone negative and because it was such a large tumor.

In November, on this website, there will be an on-line conference just on hormone negative breast cancer. I will be sure to listen and join in on this one.

Hang in there!! God really does answer prayers!!!

Teresa44 from Arkansas

Hi,Tryingtocope, After reading a lot on this board, it seems that most of our hormone negative cancers came from out of nowhere. Like your mom, I also had just had a mamogram just 4 months before I was dx. My surgeon and I were watching a couple of cysts in my right breast. So all summer I kept watching these cysts needless to say the tumor showed up in an area that my surgeon was not even concerned about. I asked him to please tell me that this did not show up on my mamogram. He said this particular tumor was not on it. When I was dx, I had a pet scan that showed cancer activity in the right breast, nodes under the arm, chest wall. After the mastectomy, no positive nodes and nothing on the chest wall. During all my chemo treatments, my blood did not do well at all. I ended up having to get 1 blood transfusion and a plasma transfusion. I had to have a couple of red blood cell shots, and I would have to have a nulasta shot after every chemo for my white blood cells. So when my Dr. finally decided to try Taxol, I just prayed that my blood would do okay on this chemo. My Dr. said that he should have tried Taxol sooner because I did better on it than any other. My Dr. also calls me his walking miracle. And yes, My Dr. is a strong christian and he always tells me that "we know who the real healer is" and that means so much to me to know that he believes like I do. How old is your mom? I am 44 . I will keep her and your family in my prayers!

Teresa44

Teresa,

Wow. How much you have been through and I'm sure you are stronger because of it! My mom is 57. She did the dose dense AC/Taxol and also had to do the Neupogen (white blood cell) shots and some red blood cell shots due to chemo-related anemia..it was quite a journey to say the least as I'm sure you know all too well. This disease challenges everyone it effects not only physically, but mentally and spiritually as well. Thanks for including my mom and family in your prayers and I will do the same for you and yours. Take care.

Hi Tryingtocope,

I hope your mom continues to improve. My blood counts are still a little low but hopefully on 11-30-05 when I go back for a check-up they will finally be back to where they need to be. My Dr. also said that it is better to try to eat a low-fat diet. I asked him about a low-sugar one and he said the low-fat was more important than the low-sugar. Darn!! That was just like giving me the go-ahead to eat those cookies. But I have really cut back on the sweets. I remember on one of the chemos that I didn't want sugar at all. What part of the country are you from?
I am from sw Arkansas. Take Care!!

Teresa44

Thanks a lot Brenda, that was very informative and answers several questions that I had. If you come across anything else about hormone negative cancer, please let me know. Hope to talk with you soon!!

Teresa44

I am a ERPr-Her negative also. I was dx with invasive ductal tumor found on mammogram- .8 mm and went with a lumpectomy first but when path report came back after sentinel node biopsy- tumor cells reached to 4 1/2 cm with 2/10 nodes positive for ca. Went with bilateral mastectomy 2 weeks later- a month after that started chemo- finished July 6th and within a week started 30 radiation treatments. I have gone through this a total of 8 months and 2 weeks. No family history that I know of. Never smoked- did drink wine occaionally. I am in the healthcare profession and ate pretty well and exercised a good bit. As a matter a fact had run 4 miles the day before the dreaded mammogram where I found out about all this stuff. I took 6 cycles of FEC chemo treatment as this is one of the recommended regimens for early stage, premenopausal women, node positive folks. Negative receptor folks respond better to chemotherapy. I have been post treatment since around Labor Day. With the good Lord watching over me I will be around many many years. Good luck to all of my sisters out there. Without this web site do not know what I would have done. You all have eased many fears many times! Thank you all.

The low fat diet report
This report also states that the women lost weight. So was it the low fat diet? or the weight loss? or both? Also the women kept their own records of fat intake. So how accurate could that be?
Odd thing was that it stated that this was more beneficial for er neg patients. So there's something going on. One would think that er positive would benefit most since estrogen is stored in fat.

Here is one of many articles printed on this study -- it happens to give more info then the average media reported.
Once all facts factored in - still inconclusive.
........
Low fat diet breast cancer hope

Following a low-fat diet may reduce the chance that breast cancer will return for some women, a study suggests.

The research found after five years, breast cancer had returned in 12.4 % of those on a standard diet - but in only 9.8% of those on a low-fat diet.

However, most women did not benefit, and experts say the findings may be due to other factors. The Los Angeles Biomedical Research Institute study was presented to the American Society of Clinical Oncology.

The study focused on 2,437 postmenopausal women (ages 48-79)who had surgery for early-stage breast cancer, followed by standard chemotherapy, and tamoxifen if their tumours were receptive to the drug. On average, the women already followed a healthy diet, gaining 29% of their calories from fat.

Doctors told 1,462 of them to continue their normal diets, averaging 51.3 grams of fat a day. They randomly assigned 975 women who were given help to follow a low-fat diet, averaging just 33.3 grams of fat a day.

The researchers didn't advocate any particular brand of diet, just as long as it was low in fat intake. The women in their study had access to a registered dietician, who gave them pointers on how to cut some fat out of their regular diets. For instance, women who usually ate a sweet roll for breakfast were advised to substitute cereal instead. Those who typically snacked on high-fat products like chips were asked to munch on plain popcorn instead.

After about 5 years of follow-up, overall, the low-fat group had a 24% lower risk of the disease coming back.

However, the only women who benefited were those whose tumours were not fueled by the female sex hormone oestrogen. The er negative women had 42% lower risk of recurrence if they ate low-fat diets - but they accounted for just one in five women in the study, similar to breast cancer cases in the general population.

Results for the other 80% of women in the study did not reach statistical significance - meaning they could have occurred by chance alone.

Dr Len Lichtenfeld, of the American Cancer Society, said the results did not mean that all women with breast cancer should be advised to follow a low-fat diet.

Others noted that women in the low-fat group lost on average four pounds (1.8kg), and that many studies have linked excess weight to excess breast cancer risk. The low-fat dieters also likely ate more fruits and vegetables and less red meat - other things known to lower breast cancer risk.

Even lead researcher Dr Rowan Chlebowski admitted: "We can't separate those components out." Dr Eric Winer, of the Dana-Farber Cancer Institute in Boston, also urged caution. He said: "There are more questions than answers."

"What we don't want to happen is for every woman who's had breast cancer to panic if she's had a Big Mac."

No Harm to Eating Better Now
About one-third of women past menopause develop ER-negative breast tumors, said Len Lichtenfeld, MD, deputy chief medical officer for the American Cancer Society. For these women, he said, the new findings are exciting, but still preliminary."We've been hearing about the potential of low-fat diets to affect cancer for decades," Lichtenfeld said. "Until now, we had no evidence this had a significant impact.

Now we have some, but it really has to be confirmed in larger trials."Chlebowski agreed. "If these results are confirmed in additional trials, reduction of dietary fat intake could be considered part of the management of breast cancer in postmenopausal women," he said. "Patients would then have an additional option within their control for reducing the risk of breast cancer."
.............
note - postmenopausal women - er neg beniffed -- early stage breast cancer -- less red meat - more fruits & veggies -- and most of all - not conclusive. Most of media ran away with this study as though it were the ultimate cure!

I was just wondering about our cholesterol counts. I know mine is excessive (over 250) though I am quite slim (116 lbs.) If you know your count, would you post it. It may be enlightening. You never know.