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

Skibum

Since my last post here on 6/19 I have finished my chemo. Yesterday saw my onc with my new ct and bone scans, everything looks good! Which is great news, I'm just having trouble feeling optomistic. Anyway I just came back from visiting my older sister(53), she has been fighting pancreatic cancer. She died just after I got there. We really thought she might have until the fall. It was heartbreaking to see, but with all considered was the best for her. She had not been bed ridden, in fact she had continued to work 3 hrs a day including the Friday she went into the hospital. She was an incredibly strong person, never complaining about anything. My hope is that I can get though this with as much dignity as she did. On another note my younger sister(40), who had breast cancer at 36 just had the genectic test and has gotten her results. She has BRCA1, can I assume that that is what I have also?
Thanks for listening, I just need someone talk to, with my sister gone I really am not close to anyone else.
Brenda

Dragonfli

Hi Ladies:

Hey Marinza, haven't seen you around lately but immediately thought of you and our bacteria links. Have a look at this site all:


http://www.bccancer.bc.ca/ABCCA/NewsCentre/2004/Protein+may+help+understand+link+between+infection+and+cancer.htm

Well as an ER- and a HER2 neg I am off for my 6 month mammo on Monday. I feel great since my chemo.surgeries.rads were all done June 3/2004. I am back to work FT and right now aiming at losing these blasted excess punds I put on during chemo/winter/lack of exercise months.
Now if the feet stop swelling and the hot flashes subside, I'll be as good as new.
Hugsssssssss and sending sunshine beams to all my breast cancer sisters.

Hugs
Barb

mary1220

I am er- pr- her/2 3+++. My mom died of pancreatic cancer 5 years ago. I seem to see a lot of colon and pancreatic cancer in families of B.C. patients.There has to be a link. I had no family history at all of B.C. and had kids early no criteria at all.I am very healthy, thin, tall, eat healthy did smoke 20 years. Mary

garcic

Hi, I am er-, pr-, and her2 -. My tumor was slightly under 6 cm and I had 1 lymph node out of 22 positive. During staging it was found that my cancer had spread to my lungs (35 and 55 spots, none larger than a pencil eraser). I had 27 weeks of weekly chemo with Taxotere and Navelbine.

I had a met to my brain that was treat in June of this year. Currently we are watching some spots in my left lung to be sure that they are scaring but everything else appears to be going well.

My onc started me on Celebrex to help deter my cancer from returning. He stated that there was positive information on the use of Celebrex coming out of Sloan. I hope so because I feel like I could really use a little luck.

Cheryl

PJB

Brenda, So sorry to hear about your older sister. She sounds like she was a very strong woman, as do you. Best wishes for your family as you move through this trying time. Congratulations to you for having clear scans. Hugs to you all.

Lisa2003

Great Thread ladies! Im Lisa, was dx at age 39. ER/PR/Her2 all neg, grade 3 ofcourse, 3/28 nodes pos, had MRM, 4AC/4 Taxotere and 25 rads. Im almost 2 yrs NED. Had a TRAM Reconstruction and a month later had to be in hospital for a week with an infection from TRAM. Later went home with a PIC line and a little over 5 weeks of IV antibiotics. So if the bacteria thing is true, I should never have a reoccurence hehehe PS Im also a Microbiologist. We need to kick this beast in the Butt!!!
Hugs to all you gals!

Lisa

tennisretired

Was so glad to find the threads on ER-Bc. Had it first in '98, rt breast removed. lympth nodes neg. Had 3 mos of chemo. Breast reconstruction. Five years later, tumor popped up beside implant, outside. Also ER-. Found in other breast,also. Took implant and other breast off---followed by Andrymycin/cytoxon 3months, taxol, three months and radiation. Am so glad to find people that have ER- like I do. In all my support groups---I seem to be alone in this. Also, friends and neighbors around me---survivors of many years, all ER+! I knew there were a lot out there--many thanks. Diane

Skibum

I have not been on in a while. It is again time for more scans, so I am a little worried. Thanks to everyone for your kind thoughts after the loss of my sister. In trying to deal with the loss and my own cancer, I have bought a horse. This has been a life saver for me! I find it very calming just being with him. When I with him I never think of cancer. Hope all is going well for everyone. I will keep all of you in my thoughts and prayer.
Brenda

Sierra

Hi Gals:

First of all, to all who are
here.. CONGRATULATIONS.. WOW
IT does my heart good to read
about all of you.. forgive me
I do get memory loss some days LOL

I am gr 3.. er-pr one node pos 3.5 lump
4 years out and still here.. so keep
those prayers for me.. and Ill send em all
back to you.. gals..

special to Brenda:

I am so sorry to hear about your sister, the pancreatic
CA.. seems to be a very bad. .one.. know people who have
been taken with it..

Now.. to read about you getting a horse.
is the best.. you are so lucky, there is NO
animals more beautiful.. I am a nut case
for them.. honestly.. plse send a picture
to me.. if you ever get one.. and I am certain you will
it will surely make my day.

Often I visit.. horses in the country and just
to touch them.. makes me feel precious
and gives me a feeling.. nothing else can

so do share this with us.

Sending big hugs to all others in here
I cant post a lot as neuropathy
for me. and carpel tunnel
while here anyone else who has this
could drop me a line.

blessings..

Hugs.. Sierra

starmorn

Hi Everyone,



I was going to start a thread on this, but found this thread and thought very interesting. Just diagnosed 9/23 3.5 cm, Grade 3, very aggressive, 0/3 lymph nodes, er/pr-, Her-2Neu-. My tumor also developed almost overnight. 3 weeks before I found it, I had done a BSE and found nothing. Then I felt a sharp pain in my right breast and there it was at 10 o'clock very close to the skin.



I seem to be a little different than all of you. I am 56, post-menopausal, No HRT, had child at 24 years. Don't drink, but do smoke. Right now with everything going on, I really don't feel like trying to quit. Also both maternal grandparents died from colon cancer 1 year apart. paternal grandfather of prostate cancer and paternal uncle of pancreatic cancer. No breast cancer history in my family. I have not been tested for the BRCA gene and no one has mentioned my being tested. I'm having a bone scan and CAT scans this Thursday to see if any has spread and then after pow-wows between doctors will discuss what of the options they told me they recommend and then what I will decide to do.



I found the links to be very interesting and I also feel more research should be done for this minority of BC. I did have a colonoscopy 2 years ago which was completely negative, not even a polyp.



I do feel like I am being cheated because even though I am against chemo, I may not have a choice since there are no drugs out there for us.



Would love to hear from others that are er/pr-.



Warm hugs to all,



Andee

kstutch

I was just diagnosed in Sept. The lump seemed to pop up from nowhere. Lump removed. Cancer-high grade/high proliferation rate. Lumpectomey and SNB/nodes negative. ER/PR negative HER/2 negative. First visit to oncologist in two days. I have been searching for information so I know what I am up against before I go into battle. Wondering how oncologist decides what kind of chemo to use. A friend gave me the book "How to Prevent and Treat Cancer with Natural Medicine", I have been following the advice in the book and have drastically changed my diet, it has at least seemed to help me recover from surgery faster.
Can anyone tell me about the different types of chemo and their side affects?
What kind do they usually give for ER/PR negative cancer?

Kathleen

starmorn

Hi Kathleen,

I'm pretty much where you are except that I already saw my onc on Monday. What he recommended was either AC (Adriamycin and Cytoxan 4 times) or CMF (Cytoxan, Methotrexate and 5-FU 6 times), but because of my other medical conditions so not too make them worse he recommended MLF (Methotrexate, Leucovorin and 5-FU twice a month for 6 months). You do not have to make your decision right in the drs office. Get the facts, ask the questions. Take notes or take a small tape recorder with you. Then you can go home and research the drugs or come here and ask whatever questions you may have or look up different posts already here for answers to your questions. You will find out that not everyone gets the same side effects. Then you can decide what course of chemo you want. One thing my onc told me is that methotrexate can cause liver damage, but they watch it closely thru blood tests.

After I have my CAT scans and bone scan this Thursday, then I will be meeting with my onc next Thursday to discuss and decide what I want to do.

Take a deep breath. I know I had to while everything was being laid out for me.

Good Luck and I will be thinking of you on Thursday.

Hugs,

Andee

kstutch

Hey Andee,
Thank you for the info. I am going tomorrow prepared to ask a bunch of questions. I wrote down the chemo drugs you mentioned and looked them up on-line and in the cancer book I have. The cancer book I have tells what kind of nutritional/supplement support to take for each type of drug.
I have already got back the results from bone & ct scan, chest x-ray, and blood test=all negative. Right now I am just dealing with numbness and pain under my arm from lumectomy and sent. node biopsy. I realize that this is just the beginning of a long journey and I stay busy most of the time and don't think about it until after work.
I am most worried about the affects of chemo causing me to miss work, I teach 7th grade math. This is only my second year to teach after going back to get my degree after being out of school for 25 years. I guess there is no really good time to get cancer. I am trying to just deal with it and not let it overwhelm me.
I have been so suprised at the number of women around me who have had breast cancer and I did not know it until I told that I have it. The positive support has been a great help.
Kathleen

starmorn

Just moving this thread to the top

spyware

hi everyone,i've been away for a while,so glad to be back and finding this thread on er- supportng so many ladies.i'm happy happy happy !
lke someone had said earlier,most of the women we come into contact with,who have had bc,are oestrogen +,and i hated that feeling of being 'out there on my own'with very few people to relate to..........now we all have each other and if anyone gets any info about new treatments for er-........WE WANT TO HEAR.....and so say all of us !!
my best wishes to those ladies having treatment at the moment...........is a bummer !!
didlems

porkchops

HI to all. I am er/pr -, her2-, and tested neg. for brca 1 and 2. Dx with breast cancer 08/03 at age 36. My mom died of bc at age 34 and her two sisters died of ovarian cancer at a young age.

I am involved with alot of support groups, yet I rarely meet another er/pr neg. person and the ones I do meet usually have had a recurrance. Which can be depressing. I have met a er/pr neg. person who is a 14 year survivor, so there is hope. It seems whenever I met a new BC friend, one of my first questions is are you er neg or pos.?

My tumour was also graded 3 and not detected by mammo. yet already spread to lymph nodes. Lump found by MRI.

Treatment was lumpectomy, 6 months of CEF and 5 weeks of radiation. Currently feeling great and happy to have hair.

Sand

Kost

Hi,

I am 40 and am ER/PR- and HER2/neu+. Yes I agree no tamofin for us, kind of scary

tallulah

I also was just barely positive on path....onc said really too close to call- he would call it negative really, but am post-menopausal (now) and onc said if I wanted to go on Femara, I could- so I did.... don't know if I am actually getting any benifits- but I didn't want to get nothing- like you said- it's tough not to have a PILL to take like the tamoxifin ladies get. Kind of wierd to just finish treatment and then .......nothing.

Sierra

Dear Gals:

sorry cant read all here right now
but..

I AM ER-pR- node pos..
aggressive treatment
4 taxol 4 ac.. rads..
and heading up to 5 years.. cant believe it
just got a physical things seem to be
moving along..
so grateful.. so plse
dont despair..
I have been trying to hook up
with others in the same situation
along my life journey
when I was first dx. this really
gave me obsessions the GRADE
but you have to let it go
I did..

wishing best to all here
tks for thread

Sierra )

richards

Hi Sierra and Andee ...nice to see your posts here...and everyone else on this thread.

I am er-/pr- as well. I am 57,post menopausal, never smoked, drank an occasional glass of wine,have always eaten well ( perhaps too well! as I am overweight).But I have exercised more or less consistently.

I do have children but found it difficult to breast feed them and so stopped early.

For years I had been checked for having lumpy breats( have forgotten the name of the condition.. ))fibrocystic? and even had additional ultrasound on the right breast. But my last mammo detected something irregular in my left breast!And I was diagnosed Mar 1/04 and had a lumpectomy two weeks later.

I am finished chemo and rads and will see my oncologist in a week for first check-up, bloodwork etc. Thanks to this site and to the many threads here I have a better handle on what I plan to ask when I see him. It's been scary being er-/pr- and feeling that there's little research/knowledge out there, so its been helpful to hear everyone's stories. Thanks to everyone for sharing.
Blessings to all.
Eilidh
Oh, one more thing, there is no history of breast cancer in my family but my dad died from prostate cancer when he was 60.

amyanderson

I am so thankful I found this discussion board. The YSC discussion board is also great. We need more ER- survivors sharing their stories with us. The statistics my oncologist gave me said a Stage I ER- patient (my age,31,with Grade 3) has a 90% chance of 10year survival and 82% chance of survival with no recurrences......so that means there MUST be more of us out there! Please share if you know of any long-term ER- survivors.

Labgal

Hello to all, I was diagnosed on Nov 3 2004 with 9mm er-/pr- Her2- garden varity breast ca (not DC, but path report said it was most like medullary which makes up 6% or less of all breast ca) I had a mas with team flap rec on Dec 8 all nodes neg and the rest of the breast tissue neg as well. I have a maternial aunt (19yrs and cancer free) and cousion (4yrs and cancer free) who had breast ca. My aunt was er-pos my cousin was not. I also had a aunt who passed of brain ca many years ago whne I was young. My brother has had pros ca (10yrs ca free). I go to see my onc next week, they wanted me to recover from surgery well first. As I understand it I will need chemo due to the fact I cannot take tam. How much and what type I will find out at appt time. I am 47 yr old, one child, and I had a hysteroctomy 5 yrs ago and was on hormone replacement therapy. I am a lab tech and cancer has always been a mystery to me. I see people every day fight the disease. Some win some loose. (I plan on winning by the way I was very encouraged that my tumor was very small and the nodes were neg. I have also done reseaech on the medullary aspect of it and even though those tumors are usually grade 3 (mine was) they have a better prognosis than other types due in fact they think to a lymphatic infiltrate that surrounds them. In theroy, this (they think) helps hold in the cancer cells and keeps them from spreading as fast. My path report said mine had this infiltrate so I hope the theroy is correct. Good luck to all of my er- buddies.

Dragonflyer

Hello Sisters in BC! This is the first time I have posted, but I have been reading your posts and wanted to join in. I was dx on my 47th birthday, this past July. Most common form of BC, large, fast-growing tumor on L., about 9 O'Clock, ER-. Stage 3, only due to the size, (1") but not metastasized. I had my choice of having lumpectomy first, which probably would have resulted in mastectomy, due to the size of the tumor. Or, I could have chemo first, followed by a smaller, less invasive lumpectomy. I chose to have the chemo first. Infusaport surgery on 7/16/04, along with a larger biopsy and the placement of a clip in the tumor, so the surgeon can find it after chemo. I had 4 AC/4 Taxotere, completed on 12/13/04. By the completion of 4 AC, they could no longer find the tumor during manual manipulation. The surgeon did an ultrasound 10/25/04 and could not find the tumor at all!! I had surgery 1/6/05 to remove the infusaport, SLN biopsy and small lumpectomy. Pathology results were that there was not even one cancer cell in the lumpectomy and lymph nodes totally negative. I will have 6 weeks of rads, followed by checkups every 6 months.

Has anyone else out there chosen the neo-adjuvant chemo therapy? I really feel like I made the right choice for me by having the chemo first. Have you heard about this from others?

Jan

SoapMaker

I am er/pr/her2- also. My mother, her mother, all 4 of her sisters had colon cancer. Mom was the only survivor (15 years now). Her brother died from prostate cancer and all of her aunts has ovarian cancer. I had colonoscopy a year ago...all was clear. I haven't been tested for the BRACA gene. Have had bilateral mastectomies. Shouldn't get colon cancer if I have regular colonoscopies (any precancerous polyp can be removed), I do have to worry about the ovaries. I will probably have them removed...BRACA or not.

Dragonfli

Hi Ladies:

I thought I'd pass along this information on ER- status that was printed in The Abreast in the West newsletter. It is so rare that we find any articles on this, that I thought it might be a good read for some.
http://abreastinthewest.ca/news.cfm

Hugsss to all
Barb

MomCasey

Thanks for posting the link! Now let's hope they can develop some of these targeted treatments for us ER negative gals.....!

beachcottage

Thanks Barb..So happy to see that you have kept this thread going...We need to stay on top of this...Thank you for sharing the article with us...xoxo,Patti

donnams

Hi all,
I'm curious....my ER was 2%, PR %5, both VERY low....my onc. says she'll treat that as clinically positive, treating me with Tamoxifen or Arimidex (once I have the ovaries removed....I have the BRCA2 mutation).

I thought that you had to be at least 10% ER/PR + before they could treat with these hormone therapies. Any of you ladies out there low ER/PR but being offered Tamox? I don't want to take it if it won't help; but of course, want to take it if it will....

I'd appreciate any info...Peace and hugs, Donna

Katrina208

I am so very glad to see this post. It seems we ER negative gals are in the minority! I had a lumpectomy in October 2003 for a 3.2 cm ER(-)PR(-)Her2(-) tumor. Sentinel node biopsy was negative, so I'm considered Stage II.

At the time of diagnosis I was 48 and premenopausal, working as a registered nurse, active and healthy, no family history of breast cancer. Our last child had just gone off to college and my husband and I were just beginning to experience "the good life"--which for us means spending most evenings out on the lake, cruising with friends, drifting and watching the sunset.

This tumor appeared very quickly and nestled near the inframammary ridge of my right breast---I rolled over in bed one morning and felt a hard lump. Being normally lumpy, I waited a couple of mos for it to go away, but of course it did not.....Had a suspicious mammo, followed by a suspicious ultrasound and core biopsies. I remember going about that time in a fog, feeling as if I was living in someone else's skin....

I ended up with a partial mastectomy, followed by 4 A/C, and then 37 sessions of radiation. I thought Chemo was awful, radiation was a breeze---but the fatigue has been long-lasting. Surprisingly, losing my hair bothered me very little--I had a friend shave it off when it got bad, found a cute wig, and my husband named her "Ginger." I also haven't had many issues with sexuality, other than sometimes being too sore (in the beginning) and too tired (after radiation). Missing part of a boob doesn't bother me as much as I thought it would, but it also helps that I'm in a loving relationship with someone I trust.

My biggest problem since chemo has been joint pain---sometimes I feel like a 90 year old woman! I remember I started aching during the 2nd chemotherapy session! My oncologist first thought it was post-chemo arthralgia, but now that it has persisted he had me worked up for Rheumatoid Arthritis--Tests so far have been negative. Taking Aleve helps and I am also rather fond of my heating pad. ( I have one you can nuke..) Let me know if any of you are also experiencing this aching, will you?

A year after chemo my hair is growing in well and I just had it highlighted--such fun! It started out very curly but now just has a nice wave. My cosmetic results postop are not that bad, especially when I use my silicone wedge. I am also starting to feel more energetic and have fewer "down" days.

My two MD's are not big on unnecessary scans. I'll have mammos at 6 month intervals,physical exams and blood work done every 3 months, and maybe a chest X-ray, but that's about it. Now we just hope and pray and try not to worry about it all....I have to admit I sure get nervous every time I go in for a checkup!

Things I'm looking forward to this year: Turning 50 in April, on a trip to Seattle; my first grandchild, due in August; A 30th wedding anniversary coming up in December, with my wonderful and supportive husband.

Best wishes to all you beautiful and strong women---

Katrina

Dragonflyer

Hi Katrina,

My situation sounds similar to yours. I was diagnosed in July 2004 at 47 years of age, premenopausal, working, active and healthy, no family history of breast cancer, no risk factors. Our oldest of 2 sons is 21 years old and our youngest is 12.

I found the lump on a Sunday in June, 2004, the day after we returned from our 25th wedding anniversary cruise to Canada. I saw my OB/GYN's Nurse Practitioner 3 days later. Had a Mammo and Ultrasound 2 weeks later, needle biopsy a week after that and diagnosis of "Infiltrating Ductal Carcinoma" on July 11, 2004. I turned 47 on July 12. My tumor also appeared very quickly and was fast-growing. It was measured at an inch.

I chose to have neoadjuvant chemotherapy of 4 A/C and 4 Taxotere, shrink the tumor to nothing, then had a small lumpectomy in January 2005 that found NO cancer cells, and a Sentinel Lymph Node Biopsy of 2 nodes and also NO cancer cells. I am a "Complete Responder". Today, I had rads treatment #17 of 34, just to keep it from returning. I've kept working all the way through chemo and rads and they've been wonderful at work about giving me time off for anything I needed to do.

If I had had the lumpectomy first, with such a large tumor, in order to gain clear margins, it would have most likely resulted in a mastectomy. With the neoadjuvant therapy, I really didn't lose any shape or size in my breast, I just have scars from the lumpectomy and SNB, so I call it "Frankenbooby".

I, too am in a long-term loving marriage and have had a lot of support. I did ok with the hair loss too. I had my hairdresser cousin cut it short in July, then when it started falling out in August, I buzzed it myself. I wear about 4 different wigs in different colors and styles and it's fun! My hair is growing back and I'm hoping that I can stop wearing wigs when the weather gets hot.

I've been having some joint pain in my hips. It has come and gone since starting Taxotere. I keep hoping it will go away after I complete all of my treatments. I work out regularly and that seems to help. I haven't pursued any treatments or anything because my rads are not completed. I just take ibuprofen when I need it.

I had my OB-GYN checkup and ultrasound of my ovaries, uterus and cervix this week and got a clean bill of health, just awaiting the PAP results. That was a big relief. Even though I'm ER-, I was still nervous about that.

I'm looking forward to taking another cruise this summer to celebrate being cancer-free, this time taking our 2 sons along with us.

I too, would like to send my best wishes to all of you strong, beautiful women. I think you are amazing!

Best Wishes,
Jan in PA