her2 actaully 3 pos, need guidance..please

[mimiflower07]

hi everyone. my name is Suzanne am 42yrs with 2 children. new to this board but am so happy to have found this one. i was dx in aug07 rt br extensive comodo gr3 with t2.5cm ,pre-m. path showed neg lymph node, clr margins, no vascularlymph involment. triple pos. Recieved bilad mast sept 25/07 with recon at same time. Now finishing recovery and will be seen by onc next 2 wks. My question (not sure what to do) what should i consider as a very pausable tx plan. Throw everything at me? should i include rad? I know hercepin with femanar(?sp) so i would like to shut down or remove my ovaries asap. Very nervous about taking Chemo!
any thought i sure could use them. I also have some arthritic changes nothing huge but do have stiffness which is my norm.
sorry ive gone on and on but help
Suzanne

[John21]

I guess maybe you are stage 1. What is you ER/PR. Her2 Fish score? You might just to do Herceptin alone. These days, I think doctors are going the quality of life direction. SInce there are clear margins, no lymph nodes, no bones? I would hope the best for you. It is true that Her2++ is driven by Hormones, and by gosh i could never say we haven't consider removing the ovaries, but see what the oncologist says. Take it a step at a time. Excessive unneeded surgery puts a strain on your body. Save it for when you need it. The only other thing is be aggressive and stay on top of it. Beware of your body and aches and pains. If something doesn't feel right, then check it out and get piece of mind. Make sure you are comfortable with your oncologist. Rememebr, their many of them out there. Don't believe you have to go the one next door. Many of the people on this site can recommend good oncologist. They are all great people from what I come to learn.

I come here to this site for my wife, to learn, vent, and just check up on things.

[Brenda_D]

It is true that Her2++ is driven by Hormones

I don't think Her2++ has much to do with Hormones. I am Her2+++, and ER- PR-.
My BC was not hormone driven.

I will have to let someone else speak to the triple positive aspect.

[mimiflower07]

thanks john and brenda.
i'm sorry we all have to be here. Some days i just don't know how to feel...i try to stay very positive and up beat but it gets to me after awhile. Especially when i watch my 2 children, like on halloween(life was so care free ...for them 9yr son & 5 yr daughter!!!

I have only just met with the onc surgeon 2 wks ago for my path report. She never mentioned staging at that point.oncogene grade 3+ strong(Polyclonal) not sure what polyclonal means.er and pr +. Extensive duct carinoma in situ, high grade with infiltrating carcinoma in 2 additional nodules of same breast. that what i know thus far. I just was wondering if they would do chemo. thanks for listening...i plan to stay as aggressive as i can.
suzanne

[BonnieR]

Hello Suzanne! It is daunting at first. We have all been there. I always advise to keep a journal to write down your questions and the doctor's answers. And, if at all possible, to have someone with you on these visits where decisions have to be considered. Also, there is time to obtain a second opinion and many people do that.
Have you been given literature that explains all the terminology?
And you should be told what Stage you are.
Keep the faith.
Bonnie

[chrisy]

hi Suzanne,
Definitely get your stage - that will suggest treatment options. You do have a target rich environment, being triple pos you have hormonals/AI's as well as Herceptin. But the main thing is to do whatever you feel is necessary to put this cancer in your PAST for good.

The decision is yours; but your onc will have a recommendation. I strongly suggest you also get a 2nd opinion. If you are hearing strong recommendations to do chemo, don't fear the chemo. It is definitely doable as many on this forum will tell you. Not fun, but doable.

Remember, the goal is to rid your body of the cancer.

Good luck with your decision - you will make the right one for you.

[mimiflower07]

thankyou Chrissy
today was a low for me...i get scared and need to regroup. i'm sorry just hate this feeling that comes and goes. Usually am very happy as well as positive. just nervous i will react to chemo, grow another limb or drop more appendages!!!
thanks again
suzanne

[Bev]

Suzanne,

I think they will reccomend chemo, just guessing. I'm triple pos, 46 @ dx, T2.9, NO, Grade 3. Did AC/TH + Tamox and now arimidex. In the end the decision is yours, but if all your opinions reccomend it....

If you wind up doing AC, you won't likely need to worry about removing ovaries.

I don't know if you'll need rads with a mastectomy and no nodes. Would think not.

For most people, chemo just makes you feel out of it, like a flu, no 3rd limbs, not to mention bald. I know I was extremely anxious and needed to ask for Ambien. You can't help how you feel, and you are entitled to ask for help to make your mind ready to deal with any treatment.

Believe it or not, in a couple of years you will feel normal again. Take care, Bev

[sassy]

Suzanne,

So sorry you had to join us, but glad you found this site.

I am triple positive, my info is all in my signature. I would guess chemo including a taxane with Herceptin. Ovary supression of some type if necessary and an AI. Not sure about rads, probably will depend on Stage and Node status. I have done them all ( including rads) and am doing well 2 1/2 years out. I would also recommend a second opinion---best to look at all options.

Things may look scarey now--but as Chrisy said, it is all doable, expecially when you think of what you have to look forward to-- a long life with your children.

Come here for support and information. Everyone will be helpful and here for you at any time.

[Mgarr]

Suzanne,

I echo everyone- we are sorry you are here but this is truly the BEST place to be. I cannot say enough about our wonderful members, they are knowleable, compassionate and fun!

As you see in my signature I had a similiar diagnosis (only ER/PR-) we are the same age. As difficult as the initial shock is, please do get a 2nd opinion. I did not have a mast. so I am not sure about radiation. I only know I felt I wanted to do everything because I want to be here (like you) to finish the job of raising my kids.

Best of luck and again Welcome.

Mary

[mimiflower07]

many thanks to all that have responded...today is a new day! I will fight with everything i can...most importantly i will get a second opinion.
i am from Canada near winnipeg mb. Does any one known a good onc that specializes in breast near Fargo or Grand Forks

suzanne

[tousled1]

Suzanne,

Welcome! You have found the best place to get information and support. The women on this board are amazing!

Having breast cancer is a daunting experience but one that you learn to live with. It's like a roller coaster ride - you never know what's around the next corner.

If you have a mastectomy and have negative lymph nodes you probably would not have radiation. If you have a lumpectomy you will probably will have radiation. Being HER2+ you definitely will get Herceptin. Before starting Herceptin make sure that your oncologist orders a MUGA scan or echocardiogram to check your heart function (ejection factor). Herceptin can cause a reduction in heart function so it's very important to have a MUGA scan or echocardiogram done at the beginning and every 3 months while in treatment. The test you have will depend on wich one your doctor likes best. I get echocardiograms done.

As for chemo, that will depend largely on your Stage. So it's important to know exactly what stage you are. There are many options for chem

[MJo]

I've gone to two lectures about breast cancer recently, and was unpleasantly reminded that Her2 is still a nasty cancer to have, even though we now have Herceptin. Both oncologists said "Her2 spreads more quickly and is more likely to recur. Yuk. I wanted to forget about that. The doctors also said they treat Stage I, II and III so aggressively when it's first diagnosed because that's gives us the best chance of being cured. I'm not a doctor, but until there is an absolute cure for Her2, I wouldn't take chances and I'd be aggressive in treating it.

[mimiflower07]

just home fr dr(gp) she totally agrees with total hyst after chemo. she will work on referral. I will take it.....all chemo, rad, hyster...
One more question what does the abr DD mean beside your chemo drug name is it double dose ?

thank you all
suzanne

[CPA]

Sounds like you are stage II (probably IIb).

I know waiting for your appointment can be really nerve-wracking. The anticipation and fear of the unknown always can be really tough. You are doing the right thing by researching and learning about your options. Always make sure to understand what your oncologist is saying... and why he/she is saying it. Whatever regimen you get is ultimately YOUR choice and you will have a greater peace of mind if you understand what and why the choice was made.

Here is my "take" on your situation.

Radiation: I agree with Kate; because you had MRM w/ clear margins, you will not likely be receiving radiation.

Chemo: You will probably be given a chemo regimen with herceptin. Because your cancer is essentially gone and you are being given chemo to keep it from coming back, it is called adjuvant chemotherapy. You will definately be receiving Taxotere or some similar formulation, along with either Carboplatin or an anthracycline. There has been a back/forth swing between the actual "in vogue" tx plan for triple positives. In any case, be prepared for at least 1 year of herceptin, administered either every week or every 3 weeks. The frequency will depend upon your oncologist and/or your reaction to the drug.

Hormones: Be ready to discuss this as you have options. Many believe that it is best to stop estrogen production completely either by removing ovaries by oopherectomy or cemically by using lupron shots. After this, you will be put on an oral aromatase inhibitor. This option is preferred by some because a percentage of HER2 patients do not respond as well to Tamoxifen. Others (our oncologist) still believe that stopping estrogen in younger women carries its own risks and that over the long period may not prove any more beneficial. Essentially, estrogen protects a women (bones, heart, etc...) and by removing it 10-15 years early, you are taking a short term gain at the risk of a long term loss. At 42, you are somewhat in-between.

Other: Do not be overly scared of chemo. It is tough, but survivable. Jill, for example, walked 2 laps at the relay for life just 2 weeks after her 6th round of chemo. Within 6 months, she was walking the track as much as she wanted! DO NOT be a martyr. Ask for anti-nausea meds if you need them. Zofran $$$ worked best for Jill - compazene made her woozy/dizzy.

Diet: You will see a lot about special anti-cancer diets discussed here and in other publications. During chemo, just eat healty foods. Chemo damages the muscles in your digestive tract and can cause constipation. Drink plenty of fluids, get lots of fiber and if you are really nauseous, eat whatever you can keep down just to keep your strength. Watch for foods that can carry bacteria. Your immune system will be stretched to the limit, so make sure to wash food well. We cooked almost everything (no raw vegetables) just as a precaution and avoided things like deli foods, salad bars and other foods that can sometimes be germ carriers. Your chemo nurses will probably review all of this with you.

Words of wisdom: Learn the terminology used by the nurses & docs, especially lab abbreviations & drug names. Do not be afraid to ask for a copy of your lab reports - you will probably have blood drawn each time you go for chemo. If you can talk to the nurses in "their language" they will tell you more. They will think that you actually understand what they are saying. Once your treatment decision is made, you will probably have more contact with the nurses than the doctors. Get to know them well - chemo will take up to 2-3 hours or possibly longer and it is nice to have somebody to talk to.

[Marlys]

Suzanne,
I, too, am triple positive. I was 66 at diagnosis in March, 2005. I had a lumpectomy and sentinel node biopsy (which was negative) on April13, and again on April 25 for wider margins and to implant a port. My Stage was 1. I had A/C every 3 weeks times 4, rads x 30 , and herceptin every 3 weeks for a year. I also was started on Arimidex ( as I am post-menopausal) which I will take for 5 years. I took to heart every thing I learned on this board. I started taking CoEnzyme Q10 to increase my chances for better cardiac health and my MUGA went from 63 to 71. I complain a lot about my aches and pains from the Arimidex but am grateful to be alive to bitch! I am currently NED and consider myself to be a true survivor. I am trusting of my caretakers and have not felt a need to second guess them for which I am truly grateful. I listen to some of our sisters on this board and thank God I do not have to deal with their oncologists. That said, I hope things goes as well for you as they have for me. I have found strength and hope here and pray that you will, too.
Love & hugs,
Marlys

[MJo]

Glad you are going to hit that nasty tumor with everything you've got.
DD probably means dose dense. Instead of getting 12 weekly taxol treatments you will get four triple doses. Some people get six double doses. Most of us here got dose dense chemo. It's very doable, and it supposedly hits the cancer harder.

[Sheila]

Suzanne
DD in chemo is referring to dose dense...higher dose in shorter amount of time, and pretty much the way most oncologists do it now for primary chemo. Do you know what type of chemo? You have come to the right place....here you will find someone who has "been there done that." And much knowledge and love and support......we were all brought together on this site for a reason....

[mimiflower07]

hi everyone..first let me thankyou for your responses. I really need your wisdom. today i received my app's with my soon to be onc. Nov7(bld wk),18th review for tx plan. Also received the clear on my bone scan, had an additional xray because i have some arthritic changes. They just wanted to be sure. Next stop...chemo!
wishing you all the best, so thankful for you all!
suzanne

[Lien]

Dear Suzanne,
I haven't had time to read the whole thread, but would like to mention a couple of things.

I was triple positive as well, had children aged 3 & 8 when I was diagnosed and researched tx at the time. There's still a lot of research being done.

Her2. You will probably get Herceptin
Chemo: There's a lot of new research being published on which chemo regimens are best for which type of cancer.
Hysterectomy: I'm surprised this has been suggested. Usually an oophorectomy is suggested, because it's your ovaries that produce estrogen, not the uterus. There has been research done in Austria on the matter of shutting down the ovaries. It showed that oophorectomy isn't very effective in premenopausal, Her2 positive women over 40. It does give you the possibility to take an aromatase inhibitor like Arimidex, which seems to be more effective in Her2 disease.

I would urge you to get a second opinion from a large breast centre. I have no idea where you live, (and I'm from Europe myself) but I've been told that Dana Farber and Johns Hopkins are good. Undoubtedly there are many others that are good.

Just my two cents.

Oh, and I'm 4 years out and doing fine. Many of us are. Don't despair. Every year new therapies are developed to help combat this horrible disease.

I'm even having a big row with my 12 year old at the moment. 4 years ago all I could think was: nothing matters, all I want is to spend time with him & his brother. Life has gone back to a new normal.

Love

Jacqueline