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

Marinza

It takes a while to digest all this information...

Saluki, the pancreas has different types of epithelial cells that line the ducts. There are squamous cells and other types, I forgot. As for the magnesium compound you're using, it sounds promising, make sure you put it in another thread so other women will benefit from it too!

Lani, your observation about the EtBr strikes me as plausible. I had not thought of that - if it had no effect, then the tumor remains an enigma, and my only explanation is what I actually felt when I got it, which is very unscientific. I also like your idea of a registry for this type of tumor. It may well be true that the prognosis is similar to other types of tumors, but it would still shed light and dispell worries if the data were to confirm that. (I also sent you email, and I'm open to the email exchange you suggested, cc'ing everyone.)

I received an email from Dr. Myles Brown, please read:

<<<Thank you for your interest in our work on ER- breast cancer. The type of
tumor you describe, ER-/PR-/Her2-, is one that several groups at the DFCI
have been particularly interested in. It has been found that many of these
tumors are what has been called "basal" type. While women with BRCA1
mutations often develop this type of tumor, most women with this type of
tumor do not have BRCA1 mutations.
Dr. Judy Garber <judy_garber@dfci.harvard.edu> who heads our Cancer Risk and
Prevention clinic has been interested in the relationship of this type of
tumor and BRCA1 status. You may want to contact her if you have specific
questions.
Please don't hesitate to contact me if you have any other questions or
suggestions.
Best regards,
Myles Brown>>>

Sierra, I checked your book link. I'd also like to add to read about Johanna Budwig and the flaxseed oil. You all know to take flaxseed oil, right? (you can search for Johanna Budwig in Google.)

Thanks for the links Dragonfli!

From everything all of you wrote, it appears to me that this tumor is very fickle. Joannc does not fit the profile, Didlems story sounds like mine, and often the tumor seems to sprout up overnight. Very weird... I do believe that there must be mutation, maybe a temporary one, maybe as small as a point mutation, that allows for a free radical to grab the cells resources and redirect its growth. It may be a tough one to figure out.

Mel, I hope you're getting better. The chemo had some rotten "side effect" - I had bad headaches for a long time but they are gone now. I'm glad I ditched it after 6 rounds, I could not have handled more, or something like AC and Taxol.

Let's keep this thread going, it is definitely very interesting, despite the suffering...

Take care all!
m.

Marinza

Someone sent me a link for an article about research in bacteria and bc. Read the whole thing, it is quite interesting.

http://www.curezone.com/art/read.asp?ID=143&db=1&C0=779


And here is a link about Johanna Budwig:

http://home.online.no/~dusan/diseases/cancer/cancer_dr_budwig.html

m.

Sierra

Marinza:

Thanks for this.. goodness Im still working
on other links.

Dragonfli: didnt mean to forget you there
so easy to miss people.. tks for welcome
I have been out West .. not long enough though
That is why it is better to address: Everyone..


Sierra

lspears

Hello all, Lucy's husband Lenny here. Hey Marinza, thanks for the excellent link to the bacterial/cancer site. Check out the info on H.Pylori bacteria and stomach cancer. Makes you wonder if the well meaning researchers have made the search for a cause and a cure just a little too difficult.

Marinza

One more response from Dr. Brown, after my question if data existed about recurrence of this tumor vs other types of tumors.

<<<The clinical behavior of this type of tumor is an active area of research
within our center and the Dana-Farber Breast Cancer SPORE. As it has only
recently been recognized as a distinct sub-type of breast cancer, I don't
think the data concerning its behavior compared with other types of breast
cancer are that good yet.
Best regards,
Myles Brown>>>

beachcottage

Marinza thanks for this information and for taking the time to write to Dr.Brown.. I read in an earlier post about being included by way of e-mail communications..Count me in,I would like to be part of any e-mail cc's...I will pm you with my e-mail address...I would also like to thank Didlems for starting this thread and to Dragonfli and Sierra for providing us with additonal links regarding this very important issue....And to Nikki,Gracie,Mel,Pauline,Susie L
LaniT ,Joanne and Margaret for sharing your stories....Have a nice day ladies...xoxo,Patti

Sierra

Hi Gals.. ME TOO..

Hugs to all of you today.

Thank you to those who did the letters
M.. great help.


Sierra

Sierra

Question for the Grade 3 Gals..

I dont want to pull out my pathology
report .. right now. Sort of just brings it all forward.. and I am at 4 years.. but

It was in one node.. do they usually give
chemo rads if you have grade 3 and no nodes?
just wondering.
I was not able to take Epirubicin due to BP.so had 4 ac 4 taxol.

Tks..

Sierra

Marinza

Hey Lenny, credit for that link actually goes to another lady who mailed it to me, but she was worried that it was too far-fetched and would cause a stir. Goes to show how indoctrinated we are (I absolutely mean no digs to her, because I can understand the fear of "being out there"). I thought the link was totally fascinating, and it made sense, so I put it up! I often wondered what the connection was between the herpes virus and cancer. The connection between Pyloris bacter and stomach cancer goes to show that this research is indeed valid, but we all know why it is stifled: mega bucks and the system runs smoothly as it is, so why come up with a vaccine for cancer? Too bad I did not know all this stuff before i had the operation, I would have asked to have tests done for bacteria. Thanks for dropping a line and validating this link! I'm looking for that good piece you wrote a while ago. I thought I had saved it to put it on my web, but I cant find it.. do you still have it? I'd like to put it in this thread.
m.

didlems

hi everyone,
sierra......i was grade 3,with no node involement.i did ECMF for 7 months.....the epi was the beast of them all....
didlems

Sierra

Hi there.. tks for info..

That must have been brutal.. that chemo..
glad you are stable now.

and M.. I too have wondered re the herpes virus
and breast cancer..
are you talking about Herpes l or
all of the types..
What is Epstein Barr.. exactly?

Sierra

PineHouse

Sierra,
All of my tumors (3 times) were grade 3 (sigh...)

I think the radiation is determined whether you have lumpectomy or mastectomy. If you have lumpectomy there's more chance that they'd want to radiate you.

Chemo..my understanding is (based on my experience with various oncologists) given if they believe there's a chance that there's some runaway cancer cells (outside of the surgically removed tumor), meaning if you have node involvement, or if the surgeon couldn't get a clear margin. Maybe the oncologist believe that grade 3 tumors are too aggressive to not be given chemo (remember they didn't remove all of your lymph nodes..so even if they didn't find any involvement on the nodes removed, they couldn't say for sure about the nodes still in your body).

I think you're doing great 4 years post treatment. Keep up the good work!!!!

lspears

Hey Marinza, I just sent you a pm. Lenny

Sierra

Hi Lani:

tks for the good words.. My goodness
3 at Grade 3.. Im a bit behind in all the dx
here.. so many.. but want to wish you
well in continuing on this path.

Well, It is what it is.. isnt it. I try not to look back but some times you might say..
should I have had recon.. should I have done this
but not often. just the odd day. End of day,
am very grateful to be here.

I am surprised at all the Grade 3. Myself,
there was a great deal of stress, especially
with downsizing of a job, etc. financial issues.

Today, life is very different for me,
as I know it is for all of us.

Best to you.

Sierra

Marinza

Goodmorning! My tumor was a grade 3 also. I had 11 nodes removed, all negative. (Too bad we cant dig up the threads that all this stuff was already discussed in... it seems that the newcomers go through this stuff all over again. I wish there were a way you could look at the previous discussions. We had SOOO much information out there! It is really a pity that all this info is irretrievable.)
For our type of tumor (even with negative nodes) chemo is standard, apparently because of "microscopic cancer particles possibly in the bloodstream". You can do a search in google for "node negative breast cancer" or any sequence of words with "node negative" in it. You will find data that seem to support this theory slightly, 2% benefit or so. I myself find it feeble data, because it lumps all ER- women together (with and without nodes), so you never know which subgroup you belong to, but I personally did not want to take a risk, so I followed dr's orders. Not doing radiation after lumpectomy has a 40% chance of recurrence.

I believe stress played a major part in my situation, but now that inflammation is coming to the fore, there finally seems to be a real physiological explanation in connection with the stress.

I believe you can click on a person's name and read all her previous postings, or maybe not all, but most recent ones. I wonder what happens to all the info we put out on this board... Some of it was so excellent.
m.

Dragonfli

Me too Grade 3 IDC with 2 positive nodes out of 6, and a clear sentinel(Guess I would have been that 5% error if my doc followed the sentinel rule) & ER-.
Next Tuesday is my 6th and last FEC treatment...Yipeeeeeee.
I had my surgeon appt yesterday and no microcalcifications so they only need to go in for clear margins now( I had .5mm after my lumpectomy.
Now, I will also be eligible to have my name tossed into the MA20 radiation study in Vancouver, B.C.
This is radiation to the breast and lymph nodes for women under 40 that had a lumpectomy and positive nodes.(was 41 in Oct when dx so they figure I am close enough).
Are there similar radiation treatments offered in the US right now? Curious.

Dragonfli

Re; Bacteria link I noticed that it no longer works...seems to have expired.
Here's another one:
http://www.staytuned.ws/articles/cantwell.html

beachcottage

Ladies just had to pass this along==FYI===Patti

New Cancer Drug Doesn’t Discriminate
By Dr. Jay Adlersberg
(New York-WABC, January 20, 2004) — More than one million Americans are diagnosed with some form of cancer every year. There is a treatment for every type but now researchers are looking at one drug to treat everything from breast cancer to prostate cancer. Now Seven's On Call with Dr Jay Adlersberg.

More Information

Cedars-Sinai Physician and Service Referral Line
(800) CEDARS-1
or
Genentech's Clinical Trials

Click for the Top Stories in Health
An experimental drug called 2C4 may offer hope for many types of cancer patients, according to a new study.

Researchers from Cedars-Sinai Medical Center gave 2C4 to 19 patients with several different types of advanced cancers, including breast, prostate, ovarian, lung, colon and pancreatic. The patients were infused with the new drug every three weeks. They completed at least two therapy cycles.

Results of the study show 2C4 was successful in shrinking completely different types of cancerous tumors. Forty-two percent of the participants either saw their tumors shrink by 50 percent or stop growing for a period of time. Three patients who were treated for ovarian, prostate, and pancreatic cancer went into partial remission after receiving the treatment. Two of those patients are still in remission and have been receiving 2C4 for over a year.

David Agus, M.D., of Cedars-Sinai Medical Center, said that 2C4 has fewer side effects than both chemotherapy and radiation.

Dr. Agus: "2C4 is a molecular-targeted therapy, which attempts to turn ‘off’ an ‘on’ switch in the tumor rather than target broader pathways that affect normal tissue."

2C4 is actually a protein that activates the body’s immune system, allowing it to fight off bacteria and viruses. The drug works by targeting HER kinase cells, which create a pathway that stimulates tumor growth.

Dr. Agus says targeting the HER kinase pathway could revolutionize cancer research.

Dr. Agus: "Targeting a pathway, rather than a tumor type, is an exciting new area in the treatment of cancer. 2C4 is one of the several experimental drugs that shows how this treatment strategy can benefit patients."

Marinza

Wow Pattie, thanks for posting that. I wonder how it affects those of us with HER2 negative status..? My understanding is that her2- is good, but it sounds like the new method would not be applicable to her2-?
m.

Marinza

Thanks for the updated link Dragonfli.
m.

KelBel

Hello everyone.

I was 33 years old when I felt a lump that seemed to have magically appeared in Sept 2003. I had a routine annual exam in July and the doctor didn't notice it then. I had a lumpectomy followed by a sentinel node biopsy in October. The tumor was 2.8cm, ER-/PR-/HER2-, grade 3, clean margins, clear nodes (two taken out during SNB). I just finished six rounds of CAF with few problems except bone/muscle pain from the Neulasta shots (overshadowed the nausea though so that was good). I start radiation in mid-March.

I had two kids (girls) by age 27 and was on birth control pills from age 19 - 32 (had hubby fixed last year). Great-grandmother, grandmother, and great-aunt (grandmother's sister) on my father's side all had BC, but not until after age 68. I'm about 30lbs overweight (this has certainly given me an incentive to get back in shape!) which I'm convinced has something to do with the cancer (family members were too heavy as well). We've decided against BRCA testing at this point.

Humor, a loving family, great friends/coworkers, and trying to live a normal life have got us through to this point. Hubby is treating me to a weekend of wine tasting before rads, a kitchen remodel this summer, and then a trip to Hawaii at Christmas. I will miss this spoiling, but certainly deserve it after this crappy year!

Sierra

Hi There:

darn tootin
you do deserve
these treats

ENJOY every minute
and all the best.

I am grade 3 as well
but older than you..

Alive is the main thing.

Sierra

PS when in Hawaii get me some Noni juice..
LOL

deann

Hi gals!
I want to post to this string. I have been on-and-off these boards over the past year. My treatment ended in Oct., but whenever I had questions I would read through the posts. I find this so helpful.

I have one of those "popped up over night" cancers. I also had a physical exam in October 02 and there was nothing there. I am a 47 yo female, and I noticed a tender spot, like a bruise, in mid-late Nov. and a few weeks later, when it was still tender, got scheduled for a mammogram. When I went to the mamm, just a week after that, I knew it was something. I swear I could feel it change every day it was growing so fast. And, it was tender in places.

It was high grade, ER-PR-, very high proliferation (>50% ki-67)and positive for LVI on the biopsy. It was HERn-. It was about 2-3 cm all around on the mammogram in mid Dec 2002, and I chose to do preinductive chemo (dose dense AC, 12 weeks, followed by taxotere). I had an MRI in mid Jan 03, just a week after starting chemo, so we could follow it. At that point (just a month after the mammogram) it was 6 cm long, 6.5 cm wide and about 3 cm round. On the MRI and by ultrasound, I had 2 very suspiscious lymph nodes as well.

After my chemo, I had surgery with SLN. They found no signs of the cancer at that point in the breast tissue of in the lymph nodes. Then I had radiation.

I had a great response to the chemo, but am now in that scared "wait and see" mode. I can say that I feel more positive every day, and I know having a total response like that is a very positive sign, but it is nerve-wrecking to have something grow so darn fast. I kept wondering if it was like that for everyone and know now that it isn't. But, I feel good knowing I am not alone. And, for anyone who wonders why they just didn't find it earlier, I know I was watching and found it quickly and got on it right away and still I was a Stage III. Just the breaks sometimes.. Still, the faster they grow, the more responsive they are to chemo. That's the good news.

PineHouse

Sierra:
I like your cheerful disposition! Sounds like you have overcome your stress...You know, my 1st tumor was probably triggered by stress too (broke up w/ a boyfriend 7 months prior).

Dragonfli:
Thanks for links! Radiation after lumpectomy is a standard in the US.
I really like this opportunity to hear from other BC survivors from other countries.

Patti: Thanks for the article.

Deann:
Like you said, yes, good news for grade 3 people. The faster your tumor cells divide/grow, the easier they are to be killed by chemo!

Marinza:
It seems like there's more activities going on the east coast with BC survivors (I'm in LA).

TO EVERYONE:
Since we're all ER-PR- here, what do you think about HRT? Does any of you ever read about NATURAL hormone supplements? There's a belief that taking a balance NATURAL hormones (estrogen + natural progesterone) is safe. The pharmaceutical HRT they give you is either estrogen alone (unbalanced) or estrogen + progestin (synthetic progesterone). Also there's a problem with pharmaceutical estrogen (being 100% estradiol) because your body naturally has about 80% estriol, 10% estradiol, 10% estrone. Thus giving you 100% estradiol may cause problem. So if pharmaceutical HRT is risky, do you think taking natural hormones (the 80%,10%,10% + natural progesterone) is worth a try?

Heidicat

Oh my gosh...kids, can I join your club? I am so happy to find a group of ER/PR- HER2- women. Thank you all for so much wonderful information...I was dx'd a year ago, and didn't know until TODAY that I was grade 3, because i was too scared at first to learn too much, and by the time I found this group and started learning I had filed away the path reports. I didn't know the dif between "grade" and "staging". I guess I was stage I, because after Sentinal Node biopsy 10 nodes were neg, and I had a lumpectomy, chemo and rads. Unfortunately I was scheduled for 4 a/c's, but became so weak had to quit after 3. He was afraid another one would kill me.
I am especially interested in those of you who had fast growing tumors. I saw my gyn in Dec., and he always does a thorough breast exam. Less than 2 months later had a mammogram which picked it up, and when I read the report I felt for it and it felt like a grape. It absolutely was not there in Dec. That's very scary to me.

Right now I am waiting for a PET scan because of elevated tumor markers (CA 27/29) and a CT scan showed something in the lung (4 MM nodule) that sounds very small compared to the tumors which are measured in CM's. Yeah, of course I'm scared. Lung mets was not in my schedule.

Please, please keep this thread going. I am so discouraged reading about advances in bc and then finding out it refers to ER/PR + patients. Blessings on you all...I'm praying for all of you in this special group.

love, Maureen

lorac

Thank you all for such good information here, including the links.
I'm ER/PR - and Her2/Neu - as well. IDC, grade 3 with no node involvement.
Just picked up the TIME issue spoken of earlier and am on my way to read it.
I'd also like to be on the email list. Does that exist yet?
Carol

Marinza

No email list yet, but let's keep this thread alive. If you ladies want to start an email exchange, that would be fine, I'll be glad to collect the email addresses in PM's to me if that is comfortable to all.

I was grade 3 stage 1. 11 nodes incl sentinel negative. Tumor was 1.6 cm, sprouted "overnight" a few months after a negative mammo, then it just sat there for a few months without doing anything, other than making me feel tired. It felt like a hard lump, a grape sounds like a good description, it did not move, it was firmly lodged. I was very tired, listless, and started gaining weight. I went on CMF, but did only 6 (see my earlier posting here) because it was causing way too much damage. Also did rads. I feel much better now, although last week I developed a weird pain below the affected breast, on the side, the breast itself feels a little tender too. I try not to jump to conclusions. My arm feels tight, although i am not sure if it is lympedema (i dont think so). The arm area is still numb almost a year later. I try to stay positive, but I cant help but worry at times, esp when I hear the stories of those of us who went through this 3 times...

I will see some of you on April 18! Hang in there Ladies, we can be of support to each other.
m.

Marinza

One more thing. About the chemo. (I have posted this in the past, but these threads seem to be archived.) Chemo is a very strange "medicine". I am not at all impressed with it, even though I chose to do it. Chemo only works on rapidly dividing cells, and these include: cancer cells that are active, bone marrow cells, stomach lining cells, reproductive cells, hair follice cells. So all these cells die off, and you lose hair, you may go into menopause because the ovaries die off. So, if the cancer cell is not active, the chemo is of no use. So, suppose you did chemo, and afterwards a cancer cell that was not active at the time, now springs into action, then the chemo was of no use, and the cancer continues. I am not trying to scare anyone, I just want people to understand what the treatments do. Few doctors are upfront about it, and it makes me angry. To tell someone that it is good for the cancer to be active so that the chemo works better, is wrong and misleading. Yes, it is true that a rapidly dividing cell is a better target for chemo, but to tell someone that it is good to have a rapidly dividing cancer in order to justify the chemo, is terrible. If the chemo misses as much as 1 cell, it was of no use. As an agent, chemo works well, and it does shrink tumors, but the problem is that it works so well that the rest of you deteriorates too.

Unfortunately, we have nothing better than chemo. But chemo is good for rapidly dividing dollar bills too.

I just wanted to post this again, because it makes me very angry that a lot of good research is squelched, and all we have is chemo. It is very, very unfair.

Thinking of all of us, and praying for all of us.
m.

SandyL

It used to be possible to access the archived posts by doing a search. However, I just tried that and although numerous posts were listed under my search criteria, some of which I'm sure have been archived, when I tried to access them I received the message "You are trying to access a subject that does not exist" or something like that. So much for my trying to help out by explaining how to access the archived posts.

Most of you have heard my story many times, but I'll share it again in this thread. (Just think how many "My Breast Cancer Story" books aren't being written since we're able to get it all out of our systems here!)

First time diagnosed August, 1986, just turned 35. No family history of any kind of cancer. Found lump myself just before my birthday. Happy Birthday.

IDC, 2.2 cm, moderately differentiated, neg. nodes, -ER/-PR (or as my surgeon put it, "very" negative). Not graded.

My surgeon said I wouldn't need chemo, but I thought his eyes flickered just a little when he said it. I pursued it a few days later. (One of my drains was in forever so I had to see him every few days; we weren't allowed to empty them ourselves in the olden days.) He sighed, then said if chemo was perfectly safe everyone would get it, but...then he told me I was actually borderline for chemo because of the neg. er/pr status and the fact that it often recurred more often, more quickly, etc. Was he ever going to mention this? I was a little intimidated by him so didn't ask. Of course, then he played CYA and insisted I see an oncologist, which he hadn't suggested before. Incidentally, he told me they literally used to flip a coin when deciding whether or not to offer chemo to bc patients. I think that's what he did with me.

Right mastectomy, 6 treatments CAF, then 2 treatments CMF, opted out of last 4 CMF due to major depression, not really because of chemo side effects. The CMF was much easier than the CAF; I didn't throw up nearly as much and my hair started to grow back.

My onc suggested Tamoxifen in case I developed an er+ tumor. It didn't sound like especially good reasoning to me, but he was the expert, right? I took it for 3 months and tolerated it very well, but stopped taking it because I simply couldn't afford it and really didn't think it was necessary.

No problems for years. Eventually my surgeon said I didn't need to see him again, then my onc said the same thing. The depression was gone and I was back to annual mammos and checkups like everyone else. I never forgot about bc, and knew it could still recur, but the elephant was teeny tiny and hiding behind a chair or something. It only peeped out when I was due for a mammo.

Then in August, 2002, almost 16 years after I found the first lump, almost to the day, I found a lump in my left breast. Happy Birthday again. I was instantly furious, angry, terrified. I did not want to play this game again. I didn't have the energy to play again. Said lots of bad words, shed a few tears, nothing helped, the lump was still there, so...back on bc treadmill, energy or not.

This was a new primary, not a recurrence. New surgeon, new oncologist, basically the same bc.

IDC, 1.6 cm, poorly differentiated , -ER/-PR, -Her-2/Neu
4/23 nodes positive (I was less than thrilled to get that news.)

Mastectomy, 6 rounds Taxotere/Xeloda, 33 rounds radiation (because of the 4 pos. nodes). My onc first talked about giving me 4 AC, then 4 Taxotere. But the first oncology practice I went to had shredded all my old records so there was no record of what drugs and dosages I had. I had a partial record from my surgeon's office, but it didn't even have my name on it. I know it was correct, but my onc was hesitant to give me Adriamyacin again without knowing exactly how much I'd already had. (Ladies, keep copies of ALL your records.) So after consulting with colleagues at NCI, he offered the Taxotere/Xeloda combo with CMF as a possible backup.

I finished chemo in April, 2003 and rads in June, 2003. I've been trying to ignore lymphedema for over a year, scheduled the therapy once only to cancel, finally rescheduled it to begin March 8, a week from today. The fun just never stops.

Like many of you, my tumors also seemed to appear out of nowhere. And although many women have no symptoms before being diagnosed, before I found both my tumors I'd been abnormally exhausted for weeks, perhaps months. In fact, a few months before I found the second lump, I told one of my co-workers I was so tired I didn't see how I could keep going. I told her the last time I felt this bad was just before I found out I had bc. Hmmm. Both times it was almost a relief to go into the hospital for surgery, just to get a break.

Marinza, thanks for researching er/pr neg. info. I've read all the links you put on and found them of great interest.

Hugs to all,

Sandy

Marinza

Thanks Sandy for telling your story again. I used to read your stuff with great interest back then (when I first came on board.)

What I keep reminding myself of, was this exhaustion that preceeded the tumor. The same fatigue that SandyL decribed. It was unusual in that I felt as if I just could not get myself to move anymore, and I used to be a person with great energy. I know that once I feel this exhaustion again, something is wrong, unfortunately by then it is too late. It is more than scary to read that so many of you had recurrences, especially since there is no explanation for it at all. I was lucky to get away without node involvement, but I dread the idea that this monster may come back again.

Nowadays, chemo is standard for those of us with ER/PR- status. But chemo is not good enough. It is really too bad that we cant find our old threads, now I wish I had kept copies to share with the newcomers.

Thanks SandyL, warm thoughts to you and all the best to all of us.
m.