an emotional mess!!!

eworell

Submitted by eworell on November 27, 2009 - 12:14am
I got my pathology results and I have metastatic adenoid carcinoma.
on the patholgy repot it says my Estrogen receptor, and Progesterone
Receptor and HER2 is all negative. My PET scan came back with lemp in
left breast and 6 out of 8 lympoh nodes had cancer.
does anyone know what kind of treatment you get for this ? what
chemo treatments you get for this?

natly15

Eworell I'm not familiar
Eworell I'm not familiar with your particuar diagnosis, but do know I will say a prayer for you. We are so advanced in treatment and there will be good treatment available for you. What did your oncologist say? He will have those answers, and you will find that many people on this discussion board will have much info for you as well. I have invasive ductal carcinoma, and am "estrogen positive but am doing chemo because my receptors fell below the acceptable numbers. Keep your head up - this is no cake walk, but there are so many survivors today and you will be one of them.

eworell

natly15 said:

Eworell I'm not familiar
Eworell I'm not familiar with your particuar diagnosis, but do know I will say a prayer for you. We are so advanced in treatment and there will be good treatment available for you. What did your oncologist say? He will have those answers, and you will find that many people on this discussion board will have much info for you as well. I have invasive ductal carcinoma, and am "estrogen positive but am doing chemo because my receptors fell below the acceptable numbers. Keep your head up - this is no cake walk, but there are so many survivors today and you will be one of them.

hmmm
I will be speaking with an oncologist on Nov. 30th.
I think i just cant figure out how at 37 I have this,
and Im so scared and very emotional. I dont know what
to think or do anymore... I am happy to be around people,
but then i get emotional. not sure how to figure this
all out... I am trying to move on. But it feels like there
is a dead end...

jnl

eworell said:

hmmm
I will be speaking with an oncologist on Nov. 30th.
I think i just cant figure out how at 37 I have this,
and Im so scared and very emotional. I dont know what
to think or do anymore... I am happy to be around people,
but then i get emotional. not sure how to figure this
all out... I am trying to move on. But it feels like there
is a dead end...

There are a lot of bc
There are a lot of bc survivors that are in our 20's. So, bc has no age limit. It isn't easy hearing those words. But, you really need to wait and talk to your oncologist inre to what your treatment plan will be after he explains your path report. We all vary so much. Wishing you good luck!

Leeza

eworell

jnl said:

There are a lot of bc
There are a lot of bc survivors that are in our 20's. So, bc has no age limit. It isn't easy hearing those words. But, you really need to wait and talk to your oncologist inre to what your treatment plan will be after he explains your path report. We all vary so much. Wishing you good luck!

Leeza

jnl
i would like to thank you... and your dancing cat made me smile...
thank you
Erica

Aortus

Hormone-negative BC
If your pathology report says you are ER negative, PR negative, and HER2 negative, then the tumor is known as "triple negative." That is an inaccurate and unfortunately frightening term. Basically, the tumor does not respond to any of the hormonal therapies currently available. That's not good, obviously, but it isn't a death sentence either.

My own beloved wife Moopy was diagnosed a year ago (12/18/2009) with stage 3a "triple negative" BC. After a mastectomy, and 6 rounds of TAC chemo, and 32 radiation treatments (most with hyperthermia added), she is back at work with a full head of short red hair and completely cancer free. There is no reason at all why you can't be in the exact same place this time next year.

Mimi (another "triple negative" BC survivor) and I wrote up a short tutorial about what TNBC is and is not. You can find it at http://csn.cancer.org/node/176265#comment-712192 (cut and paste the link). There are quite a few other "triple negative" sisters here who will also be happy to help you out.

One thing I cannot stress enough: DON'T EVEN BOTHER SEARCHING FOR "TRIPLE NEGATIVE" INFORMATION ON THE WEB! Most of what you will find from random searching is scary crap which is about 98% false. There are some reputable places to find info, like at tnbcfoundation.org or on the Mayo Clinic and Johns Hopkins websites. But please make your oncologist your primary source. It is never a bad idea to obtain a second opinion from an oncologist at a National Cancer Institute hospital.

But most of all, please don't freak out. It probably doesn't seem like it right now, but there is a life after "triple negative" BC. And it can be a very good one. Just get the best information you can from your doctors, and the best advice you can from your loved ones, and move forward. You will find an unbelievable amount of support here!

Good luck and God Bless,
Joe

pinkkari09

Wow Joe, good job
Hi eworell, I'm also 37 and I too am "triple negative" breast cancer, stage IIIc, and currently in treatment. I know your wondering about treatment and I will give you a little bit of info on mine but it by no means means yours will be the same. Today I will have my 9th round of chemo out of 16 (4 adriamycin/cytoxin and 12 taxol). Chemo sounds scary but many women do very well with it. When my chemo is done (chemo first to shrink my tumor) I will have surgery (bilateral mastectomy, all lymph nodes, and both ovaries), then I will undergo 35 radiation treatments. I do have a long road ahead of me but I'm staying positive and coming here often. I agree with Joe, the internet is a scary place to be looking at triple negative information, listen to your oncologist. I'm not sure what stage your cancer is so my treatments and yours could be different, please keep us informed, WE FIGHT and WE WIN!! Great big cyber HUGS to you!!
God Bless,
~Kari

Sher43009

Sorry
I'm so sorry you have to join this group. I have both DCIS, and IDC stage 1C, triple positive, with no lymphnode involved. When I was first diagnosed I felt like you do now. A friend sent me a website that helped me A LOT. www.thecancercrusade.com and watch the Survivor Movie. The first words are "I have cancer" second screen "But cancer does not have me". I watched it over and over. This site was started by a wife and husband that were diagnosed within 6 weeks of each other over 12 years ago. It has a bunch of great advise.

Easier said then done but try to relax until you talk to your oncol. Make a list of all your questions, and bring someone with you to all your appointments. This site has a lot of info for you.

Keep us posted on how you're doing.

mizcaldwell

Wow!
It is so scary when we get these reports full of terms we don't understand! The advice you have received here from the people familiar with your diagnosis is great. Go to the Triple Negative Foundation - they have great information. It's easy to say "don't worry" - but we all do. Just remember that there is hope! There are people on this website that have been told they were terminal - and they are still here, helping and supporting others! I'm fairly new to this game - but the examples of the women that have been down this road is priceless! When you feel your family and friends don't understand - come here. There is always someone here to give you support!

Give yourself time to go through the emotions - cry, scream, rant - it's OK - but then take a deep breath, center yourself and find a positive to focus on.

Hugs and positive vibes to you!

Lori

KathiM

Aortus said:

Hormone-negative BC
If your pathology report says you are ER negative, PR negative, and HER2 negative, then the tumor is known as "triple negative." That is an inaccurate and unfortunately frightening term. Basically, the tumor does not respond to any of the hormonal therapies currently available. That's not good, obviously, but it isn't a death sentence either.

My own beloved wife Moopy was diagnosed a year ago (12/18/2009) with stage 3a "triple negative" BC. After a mastectomy, and 6 rounds of TAC chemo, and 32 radiation treatments (most with hyperthermia added), she is back at work with a full head of short red hair and completely cancer free. There is no reason at all why you can't be in the exact same place this time next year.

Mimi (another "triple negative" BC survivor) and I wrote up a short tutorial about what TNBC is and is not. You can find it at http://csn.cancer.org/node/176265#comment-712192 (cut and paste the link). There are quite a few other "triple negative" sisters here who will also be happy to help you out.

One thing I cannot stress enough: DON'T EVEN BOTHER SEARCHING FOR "TRIPLE NEGATIVE" INFORMATION ON THE WEB! Most of what you will find from random searching is scary crap which is about 98% false. There are some reputable places to find info, like at tnbcfoundation.org or on the Mayo Clinic and Johns Hopkins websites. But please make your oncologist your primary source. It is never a bad idea to obtain a second opinion from an oncologist at a National Cancer Institute hospital.

But most of all, please don't freak out. It probably doesn't seem like it right now, but there is a life after "triple negative" BC. And it can be a very good one. Just get the best information you can from your doctors, and the best advice you can from your loved ones, and move forward. You will find an unbelievable amount of support here!

Good luck and God Bless,
Joe

Such a great supporter!
Joe, you are awesome!!! I'm so glad I know you...how wonderful that you have such a wealth of info!!!

I guess it comes down to the old catch phrase 'everyone is different' but the fight is the same...as strong and as hard as you can!!!

Hugs, Kathi

LC815

Run, do not walk, to the
Run, do not walk, to the telephone and get your oncologist talking to you. You deserve more personal attention than the words on a path report. Your onc should be discussing options and giving hope and advice. If he/she has not already laid the plan out for you, he/she should be telling you when he/she will. THERE ARE THINGS TO BE DONE!! Hopefully you will talk with someone today. If not, then surely early next week.

Hope and Peace,
Linda

P.S. I re-read the posts and see that you'll be talking to your onc on Monday. If that's not soon enough, please call today and tell him/her how you're feeling. You have rights as a patient, and one of those rights is not feeling like things are so bleak, especially before you've tried any treatment.

carkris

LC815 said:

Run, do not walk, to the
Run, do not walk, to the telephone and get your oncologist talking to you. You deserve more personal attention than the words on a path report. Your onc should be discussing options and giving hope and advice. If he/she has not already laid the plan out for you, he/she should be telling you when he/she will. THERE ARE THINGS TO BE DONE!! Hopefully you will talk with someone today. If not, then surely early next week.

Hope and Peace,
Linda

P.S. I re-read the posts and see that you'll be talking to your onc on Monday. If that's not soon enough, please call today and tell him/her how you're feeling. You have rights as a patient, and one of those rights is not feeling like things are so bleak, especially before you've tried any treatment.

you need information it
you need information it impowers you although it is scary as heck to hear. ultimately it will bring you some peace. you do have to be careful. frankly I read here and have started a little on chemocare because chenheart does. I did read his book. the important thing to know is that you can have nodes and more aggressive cancers and survive. The pathology and statistics are there to give you a treatment plan to decide what you need. many people survive so why shouldnt you? so start to gather your info and prepare for the fight. and know they will do everything in their aresenal to get you dancing with NED!!!!

P.S. what is the reason for shrinking the tumor prior to chemo?

Eil4186

I am do not know too much
I am do not know too much about your particular diagnosis, but I will be praying for you and sending positive thoughts your way for a complete recovery. God bless and welcome to the site. As you can see, there are a lot of loving and supportive people here.

Lymph23

Not the same
I can't say what your treatment will be as my cancer was not exactly the same as your. All I can tell you is I had a grade 3 lump and 23 out of 26 lymph nodes were affected. Not the best news. I received chemo and radio theraphy. Much to both doc and onc surprise and delight I am now nearly 7yrs down the road and still clear. Please try to be positive there is light at the end of the tunnel. Best wishes.

Lesley