Any er/pr/her2 neg. ppl this year?

Linda_1202

Hi,
I was reading the thread on estrogen/progesterone negative, and some her2 negative factor breast cancer people from last year on this board.. I am 62 yrs. old. Was diagnosed last year with stage 3, and all negative factors...
Was wondering if anyone has read any new info on this? Has anyone read that sugar feeds cancer? I know that for about 2 years, before my diagnosis I was eating high carb foods, as I had gallstones, and couldn't eat much protein. (I also have a liver disease).. I find I am rather unusual, as I was 61 when diagnosed with this IDC, and all negative factors. Ihave read this occurs mainly in younger women. Seems as though most of the women on the thread from last year were much younger than me..
I really would appreciate hearing from any that are negative.. I worry every day about this stuff coming back and when.
Thanks and have a good Friday, and 4th of July week-end..
Linda in Ark.

lorac

Hi Linda,

Yes, I too am ER/PR and Her2 neu negative and was the same age as you are when I was diagnosed. I just celebrated my third year as a survivor!

Did you have any node involvement? What treatment did you have following diagnosis? I had a lumpectomy, axillary node dissection, AC and seven weeks of radiation.

It takes awhile for the constant worry to recede...and become just occasional worry. Keep posting...it certainly helps.

And, a little plug for my daughter...do you see CURE magazine? She wrote a (we think) wonderful article about how much bc.org has meant to me, to all of us really. It's in this current issue and includes our pictures!

Carol

Linda_1202

Hi, Iorac,
I did have node involvement. 8 out of 11 and some matted together, so surgeon wasn't sure how many. I also had vascular invasion.I had the cancer wrapped around a blood vessel in my arm. I had AC and 6 weeks radiation. I was allergic to taxol. The chemo was very hard on me..
I am glad you are doing well.
This is a wonderful group of people. I am glad you and your daughter's pictures are in the Cure magazine, and the article she wrote. I will try to find it..
Blessings to all.

lorac

Hi Linda,

I have understood that chemo works well for those of us who are ER/PR negative and have taken great comfort from it. It does take awhile to be confident that we are going to be well again...but it does happen.

This site has been a real lifeline for me. I have great husband and family and friend support but there's something about hearing from those who have "been there" that makes a huge difference.

I wish I knew how to refer you to a thread specifically about er/pr negative survivors but I don't. I hope some of the more computer savvy ones will tell us how to find that. It began a few months ago. I'd like to read it again.

Carol

San2

Hello Carol, I am new to the site and this is my first posting. I read your daughters beautiful article in CURE and that is how I happened on this site hoping to find you. Just wanted to tell you how much I enjoyed reading her article and since I knew we had BC in common wanted to say Hello.......little did I know we were both in our 60's at the time of dx stage 2 invasive ductal carcinoma, ER/PR- and Her2 neu negative. I had no node involvment (thankfully). Mine was found through a routine mammogram Oct 13, 2004, I chose to have a mass which was followed with 6 cycles of cmf, finished my last one on May 6th. I had my mass on Nov 24, on Jan 3, 2005. I am doing GREAT now and looking forward to spending many more years of happiness with my husband.
Please thank Amy for me, if it weren't for her article I would have never found this great site.
Sandi (Sann)

Analemma

Hi, I am currently in treatment, just finished 4th AC and about to begin 4 Taxol, then radiation. I had a 2 cm tumor, and 5 + nodes, and all negative factors. So, I worry a lot, but I hope to beat this and live a long time. I am 50.
Brenda

Oneita

Brenda,
I am done with treatment. I too had 4 AC and 4 Taxol. Then 33 Rads was done April 6,2005. My tumor was 3.5 cm, Neg nodes. And all neg factors. Please think positive. I think that is most of this battle with this beast. I am going to live a long time. And I know you will too. Good luck with all the treatments. I got my first hair cut today. Yahoooooooooooooooo.

mspooter

hello i was dx in july, had lumpectomy, tumor was 3 cm and 1 positive node out of 17 and all negative factors, is being all negative a good thing? how does thataffect menopause? or does it?

msjackson

I am 41 and also er/pr/her2 neg. I am 3 months out of chemo and alittle over 1 month out of 33 rads and feeling great! I would love to know how the negative effects long term prognosis but I feel like I'll be fine and live a long time!

Milica

I am 63 - er,pr,her negative. Tumor was 1.1 cm. Less then 1/2 inch. I chose to have a mastsectomy because I couldn't find any 'current' studies on Lump VS mast. After finding my tumor was er/pr negative I researched and found that er negative tumors respond much better to chemo then do er positive tumors.

Many reports say that the er neg tumor is more aggressive but don't specify studies to back that up. There are a lot of negative reports on er neg tumors. Most likely because they don't know what fuels an er neg tumor.

And my onc told me that my tumor was so small that years ago they wouldn't have given me chemo. Today they give small er neg tumors chemo. Also they only recently have started to separate er neg tumors from er pos tumors when compiling data.

er neg tumors are found mostly in young women. Women who don't get mammograms - who gets a mammo when they are 25? or 30? or 35? No woman does. Its not recommended to get one that young. Thus, er neg tumors could have a bad reputation cause they are found in young women at a later stage then they are found in older women who get regular mammo's.

Now that they have started to separate er neg from er pos, perhaps they will separate by age as well. I found "Nex Profiler" web site most helpful with most current data. You have to register and then fill in a questionnaire on your tumor and they give all kinds of results based on info you input.

Also I have dense breasts -- another 'young woman' trait. I have wondered if all or most older women with er neg tumors also have dense breasts?

alpruette

I am 55, er/pr negative, her2 positive, and yes, I also have dense breasts. I did not know until after diagnosis that having dense breasts increased my risk of getting breast cancer.

joannnc

I am triple negative. Diagnosed in 2003 at age 54 with IDC 3.5 cent. tumor. One node positive. I have very dense breasts. I have never heard that dense breasts increase your risk of breast cancer. What I did hear is that if you have dense breasts it is more difficult to show up on mammogram. Where did you get this info. from?

Teresa44

I am triple negative. Diagnosed in Sept. 2004 at age 43 with a 6.5 tumor. No positive nodes, much to my doc's surprise, but not to me because of prayer and God. I also had dense breasts, had regular mamograms since age 35, had my last mamogram 3 months before this cancer came out of nowhere where we had been watching just a couple of cysts. My surgeon said this cancer was in an area we were not even concerned with. I had A/C chemo, mastectomy, Taxol and then 25 radiation treatments. If any one of you are doing the low-fat diets which are supposed to be good for us, tell me how you are doing it. I have never had to watch my weight and right now I weigh 115 pounds but I have always eaten way too much sugar.

God does answer Prayers

Teresa44

motherof4dx42105

Hi

I am 36, Er & Hers2 -, PR +. Stage 1, dx in April 2005 with 1.6 CM & 1.4 CM tumors, Left breast. Had a RCM. I had A/C, no hormones and no rads. Treatment completed Oct 2005.

My mamm was ordered in error, since I'm not over 40, but I really wanted to have one, considering my mother was dx'd May 2004, DCIS Stage 0, had mastectomy, and no other treatments, with immediate reconstruction. My maternal grandmother was diagnosed Stage 1, two days before me. She had a lumpectomy with rads.

I had the genetic testing, tested negative for the mutations.

Jessy8933

I was 43 when I was diagosed in Nov. 2004 with IDC, triple neg., left breast, 2 tumors - .5 mm, 1.7 cent., no node involvement, low Stage II, had bi-lateral masectomy, followed by immed. reconstruction (implants), 4 rounds A/C, finished in April 2005. Mine too, appeared out of nowhere. I had just had a mammogram 3 months before and I too, had dense breasts. I actually found the small tumor myself in the shower. They did not even know about the larger tumor until my masectomy, when they found it under the microscope. My report referenced "medullary features", which is a rare type of bc. My mother and grandmother also had BC - I am scheduled to see genetic counselor in Dec. Sure wish they would come up with some new research on this type of cancer - seems like everyone who is triple neg. says their cancer appears out of nowhere - wonder what trigers it to grow so fast. I have never really had to watch my weight either - always been petite and worked out regularly. Can't say I've always eaten the right foods - but I too, am cutting back on fat, sugar - all the things they tell you to do. Don't know if any of it will make a difference - prayer is the only thing I truly feel will keep me around for a long time, hopefully.
Jess

Teresa44

Hi Jess,

You were the same age I was almost to the exact month when I was dx. I finished all treatment in June 2005. Believe it or not I am not even sure exactly what kind of cancer I had. I just know that it was a hugh tumor that came out of nowhere. I go back to the doc next month so I will ask him all the questions that I never really asked before. I guess I knew that it was all in God's hands so it didn't bother me not to know. But I think it was more lobular. I guess I should have talked with my doc about Bi-lateral mastectomy. Never really thought about it, but I do have cysts sometimes in my other breast that I have to watch now. Prayer was a major factor for me too. I had so many people and churches praying for me that you could really feel God work in your life.

Teresa44

Jessy8933

Teresa,
I know, the age thing struck me too when I read about your bc journey - we have been going down the same road at the same time, only in another part of the country! It does help to know you are not alone! How amazing with the size of your tumor, that you did not have positive nodes. That is a miracle in itself. I do beleive faith and prayer are our most powerful weapons against this disease. It is what gets me thru each day.

I had a double masectomy because of a strong family history of bc. My onco. recommended it. I think we all handle the news in different ways - for some reason, I had to read everything I could find and go over the pathology reports with a fine-tooth comb - trying to understand them was a major challenge! I do think triple-negative tumors grow very quickly - just wish they knew what fuels them.
Take care,
Jess

Teresa44

Jess,
I am of Baptist faith but a friend of mine, who is Assembly of God, gave me a prayer cloth that was annointed with oil and prayer over. You know I kept that prayer cloth inside my bra next to the tumor. If I ever misplaced that prayer cloth, I would just panic. I know that God, prayers and the chemo is what made my tumor just disappear before I even had the mastectomy.

I am also petite and did not have to watch my weight . I love, love, all the wrong foods, sweets especially. I am trying to give up a lot of the sugar stuff. What kind of low-fat, low-sugar diet are you trying? I just don't know where to start. Any suggestions? I also walk about 3-4 miles a day. I always knew that if I walked I could have my sugar.

I will talk with you later.

God answers Prayers

Teresa

Jessy8933

Teresa,
I am not on any particular diet right now - just trying to eat more of the right stuff, and less of the wrong stuff! I just watch my fat intake mainly, since I think that is the most important. I eat smaller portions, lots of salads, fruits and vegies. I don't eat much red meat anymore. To satisfy the sweet tooth, I eat dark chocolate - it's high in antioxidants. I've heard good things about the South Beach diet - I have the book, if I could just find time to read it, I might try it. Beverages are the hardest thing for me - when I drink cola, it is diet - but mostly try to drink a lot of water, some green tea, and a glass or two of orange juice each day. I do like wine - but only have a glass maybe once a week now. Don't know if any of it will make a difference, but it's something we CAN do, at least!! I have the book, "Tell me what to Eat to help prevent Breast Cancer", that I've gotten lots of tips from - ordered it from Amazon. It's a thin book and easy to read.
Talk to you later,
Jess

Teresa44

Jess, After watching Good Morning America this morning, I am saying, Bring on the dark chocolate!!!! There is a lot of research that it also bring down your high blood pressure, not that I have it. I have never been much on chocolate but I may have to change my taste buds. I drank a lot of green tea when I was on chemo, so it is hard to drink it now. I still try to drink water and some other juices and I like my milk (with cookies). I also drink colas but they have to be diet and caffeine free. I eat a lot more fruit and veggies too. Never liked green beans until after chemo. Go figure.
Catch ya later,

Teresa

Sierra

Re: Dense breasts

I had very dense breast tissue
in my 40s and 50's
Mammo missed my lump
as did the physical exam..
Only my gut feeling

be sure to go with your
Gut or intuition on things..

So, I am reading about dark chocolate here
anyone want to tell me how much you pay
the good stuff is pricey
what type do you get...

in Canada..

Jessy8933

I like Ghirardelli dark chocolate squares (individually wrapped) - I buy them at Walmart for under $3.00/pkg. They also have dark chocolate mints, which are awesome!
Jess

Sierra

Hi.. yesir
that is the best

I used to live in San Fran
and often went right down
to Ghiradelli Square.. got the chocolate

oh. .I miss it so..

tks..

S )