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Good morning
My Mother had a lumpectomy on Wed. of last week. Her Sentinal node tested + during surgery so they removed all of the nodes. She just got her blood results back and she is ER/PR - and HER2/neu +.My sister and I have read 2 different things in 2 different places. We've read that negative is a good result for the receptors and also read that it is not.Not sure about the HER2 result either. Her nurse mentioned Herceptin yesterday when she called with the blood results.My Mom has her 1 week post op on Thursday and she will have her drain removed & get the results of the node testing and an idea of what her treatment will consist of. She will also see her Oncologist for the first time next week.Our father, my sister and I are going to go to the appt. with our Mother but we want to be prepared for what her surgeon tells her.We are very confused about the receptors and would really appreciate ANY INFO. We are not looking for a diagosis just an understanding of what the blood results mean.Any help would be appreciatedVery concerned daughters -
Hi Sweetie,
Im sorry to hear about your mom
I know that being er/pr- means that your mom doesnt have the option to use hormonal treatments to fight recurrence...but I dont have very much knowledge about the HER2+, but there will be lots of ladies reply that will know about it and the Hercptin that seems to go along with it...
Im thinking since she was node positive that they will be discussing chemos with you all, but now that the receptors have been discovered to be negative the hormonal decisions wont have to be discussed so try not to worry about that side of things as they dont apply to your mom...you also will get the stage and grade of the tumor that was removed....the stage is determined by size and number of nodes positive, the grade is the cells that make up the tumor and how slowly/quickly they were growing which will give the aggressiveness of the cancer.
There is one thing that I want to point out to you that I had happend.....the surgeon is NOT the one to discuss treatment with!!! He will give you the stage and grade, and very well might give his opinion on what treatment should be.....my surgeon did and he was way off on the treatment, so until you see the oncologist try not to get too scared by any treatment stuff the surgeon may tell you.....
If at any time you have more questions (which you will), post here and you will get loads of answers and even better yet......you will get more support from these ladies than you would dream possible....we would also welcome your mom, sister, dad into our groups as well so NEVER be afraid to come here......
Hugs
Jule
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Jule,
Thanks so much for responding. I am the other daughter. It's so much info that it's a bit overwhelming at times. I hope more of the ladies respond with their own info as well. We want to be as prepared as possible at our Mom's dr visit. As my sister said, we don't want a diagnosis just more info.
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Hi Cheryl, as I posted to your sis, Im sorry about your mom.....
Your very welcome, I hope whatever little bits of info I can give you will be helpful..
You both are wonderful daughters to be researching things and trying to take the bull by the horns.....it is much better to go in knowing but becareful that you dont over search something until you now for sure that it will apply to mom.....it can cause the fear and stress to triple!!!!!!!
You and your family are in the scariest time right now because the not knowing the hardest....facing the unknown is extremely stressful!!!!!! Once you have a game plan in place for treatment and such you all will start to feel a little better....I promise....this can be a long road and at times its going to seem like there is no end in sight, but there is!!!!
Hugs
Jule
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I agree. This waiting game is the worst. The fear of not knowing just makes your mind race with the good, the bad, and the ugly. I'll be glad once we know more on thursday. This is not our first go round with cancer. My sister had uterine cancer and is 2 years cancer free. Our family doesn't look at this like it's Mom's cancer it's the family's. We are ready for the fight and I must say I've never lost a fight yet!!
Thanks again for the words of encouragement.
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Cheryl...what a wonderful attitude you have!!!!!!!!
My family is the same....if it affects one of us, it affects us all and heaven help the intruder!!!!!!!
Im very happy to hear that your sis is cancer free now....
Im not sure there is much more info that you will get right now...once the rest of the tests are back you will get whalloped with more info and research than you want I suspect...when I was dx'd I spent hour after hour on the net......mistake!!!!! I scared myself silly!!!! My first recommendation to anyone is try to only research the parts that you know for sure apply.....I also think it helps alot to take it one step at a time as it sinks in a little better...
I hope you and your sis continue to come here.....not just for the board here but this site has a tremendous amount of references/research information as well...
Hugs
Jule
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I'm sure it's hard to give info about all of this as it's not so cut and dry. We will be back once we know more on thursday. It's nice to have a place to come to for answers. We'll be back in a couple of days if not sooner.
Thanks again
Cheryl
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Come back whenever you'd like.....there is always someone hanging around....
You girls hug each other for me.....and I will keep you all in my thoughts...
Hugs
Jule
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Perhaps I can shed a little more light. Im er/pr neg and HER pos too )
There is very good treatments out there for us.and yes we do not respond to anti-hormonals.
When you all sit down with the treatment team.
You will need to find out some information , which will be on your moms path report. :
stage of BC
size of tumor
Grade of tumor- 1-3 , the higher the more aggressive
confirmation of er/ pr status
How many nodes involved
Was there lymph and vascular invasion
Did the surgeon get clear margins
Was the her positive results from fish testing.
Depending on the above, your mom may need more surgery right away then chemo
or noadj. chemo.( chemo to shrink a large tumor)
She will most certainly need radiation treatment too, which follows chemo
Everyone has a different plan depending on the type of tumor and the stage.
Ok, now having said that, Your moms tumor will respond favorably to Adriamycin ( as she's hormone neg ) .That's good.
Normally , there are 2 cycles of chemo, which is 2 cycles of 4 infusions. During her second infusion she will probably get Herceptin.
Herceptin is a new targeted treament and cuts recurrences around 52%. That is great.
There is alot of informtion to get your heads around, but you will get through it. Your mom is very fortunate to have such caring daughters.
Your mom will; be fine.
God Bless and pm me if I can help.
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As other's have mentioned, the oncologist is who will lay out options for the chemo. Unless it is a very small tumor (under 1 cm), chemo is probably given since she is hormone receptor negative.
There has been so much research on breast cancer that if you read anything more than a few months old, there is probably a new study that contradicts it. Assuming that the final pathology confirms that she is hormone receptor negative and Her2+, latest research is indicating this is a good thing as opposed to being triple positive (hormone receptor and Her2). Apparently, some studies are indicating that the hormone inhibitor meds block some of the effectiveness of Herceptin.
Herceptin is a targeted drug for Her2+. You take it for a full year by infusion, so it's like getting chemo, but without a lot of the bad side effects. Depending on the chemo treatment, your mother may do a portion of the chemo first and then start herceptin. Or, she may be on herceptin with the chemo from the beginning. Some oncologist like to start herceptin as a weekly infusion and then switch to every three weeks whereas others start with every three weeks.
One of the other posters mentioned adriamycin. I would strongly encourage you to discuss with the oncologist what the treatment options are in addition to adriamycin. Research is indicating that Herceptin and adriamycin have more long-term side effects than Herceptin with other chemo regimens. However, when you hear the whole story as it applies to your mother's specific situation, the benefit from adriamycin may be worth the risk.
Most doctors are willing to give you time to think about the recommendations, do some research and then get back to them. A few weeks here and there don't seem to make much difference in the outcome, so don't allow your family to be rushed into a decision until you feel completely comfortable with it. The amount of information is overwhelming and it takes time to digest it all.
Best of luck to your mother and your family. I have my last round of chemo the beginning of May and have found it to be very doable. Minor side effects here and there, but nothing like I imagined/worried it would be. I will be on Herceptin until January, but I hear it's very easy as a stand along infusion.
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Thanks Linda.
I will make sure my sister takes my Mom Linda on here to see these posts. It is good to have all of this info. I am going to make sure we have a list of the things you said we should know about. This way nothing gets forgotten. They definately said she would need the Herceptin. We really won't know more until after thursday's appt. Thanks for your post. The more info the better.
Cheryl
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Thanks Cathy. Again all good things to know about before the appt. We (Mom, Sister and I) Like to be prepared. The more we understand about what they are saying the better it is to hear it all. We will take notes so if our Mom misses anything we can go back over it. We will keep you all updated.
Thanks
Cheryl
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Hi Cheryl:
I'm another who was hormone neg, Her 2 pos and node pos! Like others on this thread, I'm 3 years out and doing just fine. This is a great site to come for information. We've been there and we can help you, your sis and your mom through this first shocking phase.
Best
Annaanne -
Hi Sisters:
Greetings from another ER-/PR-/Her2+ breast cancer sister. Your mom is blessed to have you two to help her out at this time.
Please be prepared for the word "Unfavorable" on your mom's path report. I was devastated to read my path report. My prognosis is listed as unfavorable for my ER- and PR- status. Not what you want to see! So prepare yourself and your mom. A few months later, I am much encouraged by the fairly recently introduction of Herceptin and Tykerb, and even today a new article is on this site's home page about a new vaccine for Her2+.
I had a mastectomy on 3/19 (after a lumpectomy and re-excision failed to get clean margins), began chemo (Taxol/Carpoplatin/Herceptin) last Tuesday with minimal side effects, and feel optimistic about my future.
Best wishes to you and your mom. This is a great place for support and advice.
Sue
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Hello Sister and friends
I am new too about the ER-Pr-and the Her2. I found out I am in the same category. I am so bless that you all answered the questions for I was going to put it on the message board. This is so helpful especially when you find out you are ER- and Pr-. I have a wonderful support group but all the ladies can take the hormmone pills. But after I read this bulletin board I feel I'm at home and I am not alone. Thank you sisters for posting this.... for you just helped another sister (friend) to get through my journey. Presently I'm on radiation. God Bless everyone!
Debbie -
Thanks so much for all of the feed back.
Sue, I am glad to hear that your feeling much better. We will definately post once we know more from the dr tomorrow.
Debbie, I am glad that this has helped you out as well. This Is such a process. There is so much info that it's hard to absorb it all. That is why we are going to go step by step and research what we know. It's easy to get caught up in the wrong place with the info if your not sure about all of the things you need to know.
I think having alittle more info from the surgeon will be a good starting point. The Oncologist appt is on Monday. My sister and I will be attending both appts. so we can take notes and get all of the info incase we need to look back as a referrence.Thanks for the support and positive posts. -
Cheryl, I was responding to this,and inadvertently " reported " your comment. i have notified the board of my error.
Sorry.
That's what I get for doing ten things at work and going on line!
Anyway, I forgot something.
On the path report it will give the TYPE of breast cancer. That's something you need to know too.
(Infiltrating or intraductal Breast cancer accounts for most ( 80% ) of BC.)
Much Blessings!
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I have the same markers.
I did 4 cycles of FAC, then 4 of taxotere/Herceptin then completed the year of Herceptin. I was diagnosed Sept/05 and am still quite well...back to full swing of life.
Some onc are using TCH for 6 cycles instead of the traditional AC, T.
I hope your Mom sails through her treatments and you continue to support her, shell need your encouragement.
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