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

HiGuys
I am also ER/PR neg and HER2 pos. I had 4 A/C 4 Taxol 3weekly regime, followed by rads and now I'm on a herceptin trial. I get herceptin 3 weekly for 1 year. The year is almost up - in May - and I am looking forward to that as it will be 2 years of backward and forward for treatment. I live 800km from treatment centre so every 3 weeks I head off for my dose.
I was lucky enough to be asked to enter a study on genetic testing as we had a family history, so I was tested for the BRCA genes and it cost me nothing. This is in Australia, but perhaps there are studies over your way. Worth asking your specialist anyway.
Good luck guys and talk again.
Sharon

this is my first time to post. I was diagnosed Jan.12 04, lumpectomy on Jan. 12. Tumor was 2.5 cm. grade 2, stage 3,es ng, pro ng. I'm scheduled for 6 rounds of cef beginng on Friday. I need input from friends who have been there done that. WEhat can I expect??????

Hi Ladies, the answer to Lani's observation about ACT in the US vs CMF elsewhere is money. ACT is a lot more expensive, plus it requires a lot more very expensive peripherals such as neupogen and neulasta that go for 1000-1500 bucks a shot. Also, the operation to install a port generates money. Anyway... I (and other women here) have gone over this many times before... the whole cancer industry makes me sick. Read Time Mag a week or two ago, "Why are your medications so costly" or some title like that. I've also written a piece about chemo on my personal website. Two oncs I consultd were pushing ACT like crazy, as if there'd be no tomorrow if I did not take it. The third onc brought up CMF as a choice for me (ER/PR- no nodes grade3). Obviously she got the contract.

CMF apparently works just as well as ACT, and is a lot less costly. Dont forget the US is heavily money driven and money oriented.

In terms of the bacterial link and cancer, I received some interesting info from Dr. Alan Cantwell. Here are the links he sent me.

www.rifetechnology.com/Cantwell.html

www.rense.com/general44/russell.htm

He sent me some papers too that I will install on my personal website for downloading later sometime.

Yes, indeed, the HPV causes cervical cancer. Also, the Heliobacter pylori causes stomach ulcers, and cancer. Perhaps if a bacterial cause is the source of the cancer, then it may explain these frustrating multiple recurrences some of us have... The more I read about this link, the more it makes sense as a cause.

By the way, Dr. Cantwell also pointed out to me that in earlier days facial acne was treated with radiation, but is now outlawed. Interesting no?

Take care all,
m.

Fascinating. Indeed, the more I read about bacteria and the link with cancer, the more it all adds up for me too... why is it that nobody is looking into this possible cause for cancer?

I often wondered if there was not some entity that altered the dna in a cell, something that could enter the nucleus (like a virus, see the herpes II virus whose presence is characterized by multinucleated cells once it is busy replicating itself inside the cell during an outbreak, in other words, it is capable of making duplicate nuclei in the same cell) and either alter the dna structure, or intersperse its own dna in that of the cell's, and use the cell's resources to create a habitat for itself, i.e. a tumor. I felt as if something had taken over my entire system, and had forged itself into my tissue like a rogue embryo.

I cannot remember a bacterial infection like yours, but if there are anaerobic bacteria that can cause cancer, then other physiological changes may have added to the problem.

Inflammation is definitely a source. Inflammation is also caused by bacteria.

I'm glad you found the link interesting. Do a search in google on 'cancer microbes', a lot of stuff comes up.

m.

Hello everyone,

I'm 28 & am ER- but PR+ & grade 3. I was reading the posts & noticed that most of the ER- tumors are also grade 3, making them even worse...seems to me that ER- tumors are a lot more aggressive & harder to get rid of w/ no treatment options after chemo...that freaks me out even more. Sorry if I'm being too negative (no pun intended!)

http://www.fhcrc.org/news/science/2001/07/3/tamoxifen.html

Well I just heard from my Rad Oncologist and I asked him if my HER2 status was in, I am another one you can to ER- HER2neu-.
So, I won't be attempting to get into the 3 arm trial in B.C. for Herceptin (Pre mets).

In a way I am relieved that I am not having to make that decision for Herceptin since I live 3 hrs from where I would get infused every 3 weeks.

Hugs
Barb

Thank you so much for this thread. I'm glad I'm not the only one having difficulty finding info on ER- tumors. I have been looking for ways to help prevent a recurrence, but everything (diet, exercise, etc.) seems to be about the effect they have on estrogen. My tumors didn't care how much estrogen I have, so none of the "preventions" will work for me. The posts regarding bacteria causing cancer are very interesting though. Wouldn't it be incredible if they could find a link and all we would need for a cure is antibiotics. Wow! Let's all say a prayer for that!
Thanks again.
Patty

I want to add my story here. I was diagnosed in March 2004 with IDC, er-,pr- and her2-, fungating mass of no particular type. I am 40 years old and I'm the single parent of an 11 year old girl.

Like many of you, I feel that my tumor showed up "overnight." I went to scratch my armpit and there it was, a huge gumball sized lump in my right breast, right upper quadrant. I had no insurance, no job and so I just convinced myself that this was nothing and that it would go away by itself. Unlike some of yours, mine was very moveable within my breast. I figured that it was just a cyst or something. By the time I did see a doctor almost 4 months later it was somewhat bigger, maybe twice the size, and it had started to hurt. The doctor was convinced that it was an abscess and did a needle aspiration. He said that there was a lot of "nasty stuff" in the fluid he sucked out and asked me some pointed questions about my love life. Well, I didn't have a love life and could not remember any other kinds of injuries. Later, I did recall being clawed by my cat in that breast, about 6 months previous. There had been a deep puncture, little bleeding and I just put some neosporin on it. I went through 2 rounds of antibiotics with absolutely no improvement, at which point the doctor cut into my "abscess" to drain it. A lot of fluid came out, but my "abscess" remained huge. He put me on one more round of antibiotics specifically for cat scratches, but again no improvement. At this point, I knew I had cancer. The tiny cut the doctor made at the beginning of March turned into a huge ulceration on my poor breast, which in the course of the next couple of months grew to 3" in diameter (the ulceration). From the day he cut into it to now it has drained fluid continuously. About 4 sanitary napkins full a day. Pretty gross, I know. Sorry!!! I'm writing all this because of what some of you are saying about bacteria. I definitely think there's something to this.

Right before I began taxotere treatment on April 23, my entire tumor measured 9 cm. The taxotere has really "kicked butt" for me so far. Right now, my ulceration is less than 1", and although I don't know for sure, I think my tumor is A LOT smaller. I will find out on Wednesday, when I get my second dose.

I just want to add a little more information about me pertaining to issues that some of you have mentioned in your posts.

Family History: My dad developed primary bone cancer in his 60's, which was successfully treated. He died slowly and very sadly in his late 70's, 2 years after suffering a massive stroke. His sister, my dear aunt, is now going through treatment for breast cancer that has spread to her liver. She is er+. She seems to be doing well though. Mom's mother- brain cancer.

Vices: I am and have always been a non smoker and drinker. My only vice has been my good appetite and extremely bad diet. Lot's of sugar, and fast food. I'm about 60 pounds overweight. I've never been good about exercise.

Autoimmune issues: In our family, we have psoriasis. My dad had it and my daughter has had it. I might have a small patch, but not sure. I am the one in the family that always gets the cold.

Stress: The previous two years have been very stressful. After my dad's stroke, I quit my job to help my Mom care for him, and the whole thing was very sad and upsetting.

A couple more things: I breast fed for only one month, and have never been on birth control.

I am very grateful to you Dildems for starting this thread. It was desperately needed.

Thanks also to you Marinza for all the links that you've posted and all the information. I have not read all of them yet, but look forward to doing so.

Take care everybody, Karin

Thanks for the great posting Karen! (even though I am very sorry for what you're going through...)

My first thought right away after I read about the cat was, Yes! Bacteria!!

The more I read, the more it all clicks to me. An absolute MUST READ for all of us is Cantwell's book "The Cancer Microbe", and another one that will blow your mind is by Barry Lynes, "The Cancer Cure that Worked - 50 years of suppression".

When I have more time, I will post more about these books. We MUST demand the truth and focused research. We really, really must!!! And the pink ribbon runs in the park should not be to generate more millions for the established organizations and the old and tired 'cancer awareness', but for the research that has been suppressed over the years by the bigwigs in the pharma industry that we can look at for leaving us at the mercy of the voodoo medicine of chemotherapy. It is murder.

Ok, i have to run- be well all!!
m.

Hi Marinza and Didlems,

Marinza: I look forward to reading your book suggestions if I can find them in the store, preferably the used book store or library. I want to read anything I can find about all of this. I share your views on the big business of medicine and have always been very leary of the industry. In lieu of recent developements, I guess that's a little unfortunate for me now, seeing as how I waited so long to go in and all.
But oh well.

As far as antibiotics Didlems, I suppose that they could have compromised your immune system. I myself have not had many rounds of antibiotics throughout my life. I would have to guess no more than 7, including the 3 I had in Feb/March. I rarely sought medical treatment for my many colds. My Mom, on the other hand, practically gets antibiotics for everything she sees the doctor for, and she is remarkaby healthy for her age. I take after my Dad's side of the family, I guess. I know that I've compromised my immune system with my extremely poor diet and sedentary lifestyle. I hope it's not too late to change this and have a drastic change help my cancer situation. I want to live to see my daughter to 21. That's my goal.

Wishing the best to the both of you and all of us here.

Karin

I too am erpr- and her-. Ten years ago I had a 8mm erpr+ tumor at which time I had a lumpectomy and rad. Then 2.5 years later I had recurrence, at that time I had a mast. I want both breast off from the beginning but no one would listen to me. This time I did CMF and they tried to get me to take tamoxifen. I opted not to take it, and my onc later told me I made the right choice. Then 6 years later I find a tiny lump very high on my chest. Turns out to be cancer again. Only this time it is erpr- and her-. At that time I did not take chemo. I did have a mast.(Oct2002). Then in April 2003 I found a node in my neck. I had 2 FNA's both neg.and many tumor marker test always normal on me. Then surgery to find it was cancer again. I forgot to mention with all the tumors I was node neg. So now it is in my superclavicular nodes, I go to my onc. (at that time) and he recomends rad. I ask him about chemo and he says to me why would you want it now when you would not take it when it could have helped you. Well any way I did the rad to the neck area and upon the advise of my surgeon I saw another onc. He had a whole different approach to my situation. I did 12 weeks of Taxol. And now I will take my 3rd AC (dose dence) Fri. I've had scans every three months and so far the cancer is no where else. I feel very lucky.

As regards the bacteria link - the chemo drugs doxorubicin and epirubicin (aka red devils) are both anthracyclenes which were originally used as antibiotics........
Sam

Hi Ski,

Your Dr. may be talking about adding celebrex, vioxx, or just plain aspirin or ibuprofen (recent studies say the last two might be beneficial for ER+, but both are considered to be Cox-2 inhibitors as well).

My tumor was ER+, so I'm really considering taking asprin to help prevent a recurrence. I will check with my onc beforehand.

Beth

Pat,
Thanks for the post on the pancreatic link. My older sister had breast cancer 11 years ago. Then last year at 52, she was diagnosed with pancreatic cancer. She has never been a drinker, smoker, or even a coffee drinker!! Some really clean living going on in her home. However she has worked for a petroleum company for the last 6 years. She is in an office connected to the warehouse, with all the fumes. Not sure if that could be the link or not. I also have a sister who was diagnosed with BC at age 36. She is doing fine now at 41, but is having the other breast removed and also her ovaries this month. As for me my history is on this link, it's long and unpleasant. I am just 1 year younger than my older sister and was diagnosed with BC 1 year after her(the 1st time). The good news is that since I last posted, I have finished my last AC. My onc has given me 6 weeks off! Which I plan to use to have fun and spend with my sister. My younger sister has had a genetic workup and they think that we may have the BRAC 1 gene. She is planning to have the test, if she doesn't I will. Not for myself, but for my family which is large and full of females. Thanks to everyone who has posted here. It is good to have somewhere to go and talk about these things. I am leaving June 21 - July 14. Everyone here is in my prayers and I will let you know how things are going when I get back.
Brenda