Introduce Yourself

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Tricia Keegan
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Re:Introduce Yourself - Tuesday, July 14, 2009 7:23 AM
Hello Ananya,

While stage iv is a scary prospect it's really not treated as a terminal illness anymore but rather a chronic one with treatment being stopped once a good response has been had.
I'm really sorry you and your sister are having to deal with this.
We have a forum here for advanced cancer where many of the stage iv ladies post and support each other. If your sister would like to join us please tell her she'd be welcome and she's gain inspiration from seeing many of the long term survivor's of stage iv cancer.
It may help you too to join a support group through this, if you also post on the family and caregivers forum I'm sure you'll meet many others in a similar position with family members.
I really hope your sister has a good response first time to this chemo, it's very possible she could get back to NED (no evidence of disease) and hopefully she will:)

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Ananya_1328
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Re:Introduce Yourself - Thursday, July 16, 2009 5:05 AM
Thanks Tricia.

My sister is very positive about the treatment and thats giving us all strength as well. She is triple negative which concerns me. Also, she doesnt not want to join any groups or communities because she feels it wuold remind her of her illness(if i can call it that).

We dont really have support groups as such where I am anyway. (Bangalore, India)

But as the primary care giver, I feel the need to be told that what i am doing for her is correct and that things will look up for her soon. hence my decision to join the site.

Have been reading teh posts in other forums, and they're helpful.


Tricia Keegan
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Re:Introduce Yourself - Thursday, July 16, 2009 9:42 AM
Triple negatives do have a better response overall to chemo than we positives do Ananya so thats something in her favour.  I'm glad too, to know she's staying positive, while I don't believe a positive attitude in itself will cure cancer it definatly helps our well being overall.
I'm glad you are there for her and am sure she appreciates it.

We had just one other person from India posting recently, his name is Ramesh and his Mother had breastcancer and is doing well now.  If you'd like to look at some of his recent posts on stress and yoga, he has posted on the "Healthful living " forum.

If you'd like to start your own thread on the "family and caregivers" forum I'm sure you'll get many more replies as your message will be seen more easily.
My very best wishes to you and your sister as she battles this, she's fortunate to have you as her advocate and I have no doubt educating ourselves on this disease is very empowering :)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Deb Allen
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Re:Introduce Yourself - Thursday, July 16, 2009 8:37 PM
Ananya, welcome, and we will be your support group, as well as your sisters.  I just wanted to share with you that my chemo oncologist is Dr. Sridevi Juvvadi, and she did more for me than just save my life, she became my friend.  I don't have any answers for your specfic questions, but please browse through all the forums and threads, and ask or just read.  Dr. Juvvadi is a tiny woman with a powerhouse of knowledge and strength, and to this day, even though it is not customary in India, we hug every time I go for appointments.  She is an angel, and I was one of her very first chemo patients.  Each year, she goes back to India to visit her family, and one of the greatest things she shared with me was when she brought her family to Dallas.  Talk about cultural shock, but we need to get over that...

All I wanted to really share is that no matter what part of the globe we occupy, or where we travel, cancer is cancer, and we are all human.

Sending you hugs and love!
Deb
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





debigeasy
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Re:Introduce Yourself - Thursday, July 23, 2009 1:43 PM
I am new and I was diagosed July 9, with DCIS, I am waiting on my result of the BRCA test to come back to see if I need a single or double mastectomy, I have come to terms with this as much as you can I'm scare and have all the emotions everyone has since I was diagnosed, the thing that I am not sure of is the breast reconstruction I would like to here both sides if possible If someone can tell me their experience with implants and natural tissue. I have read your stories and I feel like this is the place for me to talk and listen and hear what people have to say that know what I'm  going through.

Tricia Keegan
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Re:Introduce Yourself - Friday, July 24, 2009 2:08 AM
Hi Debigeasy!

It was late when I saw your message last night so rather than post here I sent you a private message which I hope you received.

If you start a new thread with your message many more will see it more easily and respond. In the meanwhile, I can't help with recon but we have a surgery/recon forum with lots of tips and advice if you'd like to check it out.:)

Good luck and although I'm sorry you've had to join us, it sounds like they caught it very early on thankfully.
Keep us posted!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Deb Allen
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Re:Introduce Yourself - Friday, July 24, 2009 2:32 AM
Hey debigeasy...I just now saw your post and that is my fault, not yours.  First thing to remember is this, you may not get an immediate response, but it is our goal to make sure everyone gets a response, and helpful information, as Tricia gave you.  You are so new to your diagnosis, I'm sure that your emotions are rattled.  Of course you are scared, and rightfully so.  It would help us help you when you know more about your next appointment, whether it is with a breast cancer surgeon, or oncologist, and the results of your pathology reports.  If you need help understanding the path report, there are some extremely helpful tools at the top of the pages dealing with questions to ask, and in the different forums you will find "FAQS" pinned to the top, along with suggestions and tips.  This is the place to be, and we will be here for you.  There are many different sides to the surgical options, and I urge you to check out the different forums.  Remember, we are here to help...

Deb
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





sazbro
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Re:Introduce Yourself - Saturday, July 25, 2009 3:25 PM
Hi
I have been diagnosed on 7/23/09 and I am scared. I am only 45 years old and lost my mother in 1993 to ovarian cancer at the age of 59. I don't know what stage is my cancer yet. I have a PET scan and MRI scheduled.

Tricia Keegan
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Re:Introduce Yourself - Saturday, July 25, 2009 3:34 PM
Hi Sazbro,

The early weeks of diagnosis are terrifying for all of us, the ladies here will help and support you and hopefully make it a little easier.
You're not alone but know that this is all do able no matter what you face in terms of treatment.
I'm four years out but some of our longest members are over twenty years out!! :)
Take one day at a time through this maze and try not to absorb it all at once, you'll just get more confused. If you can bring someone with you to Dr appts, they can take notes as you won't recall anything thats said.  Whatever is ahead someone here has already faced it and can ease your fears. If you'd like to start a new thread more people will see it to welcome you, in the meanwhile browse the forums and pick up what confidence you can from reading the various posts.
There are ladies here at every stage of treatment, and all welcome new members so feel free to jump in anywhere and respond. If I can help you with anything in particular please feel free to send me a private message or e mail and I'll be happy to help. Keep us posted and welcome to komen:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

JulieS
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Re:Introduce Yourself - Saturday, July 25, 2009 7:49 PM
Hi Sazbro!  Welcome!!!!
You have found a great place!  We all care for each other, help and support each other, listen to venting, ranting and we celebrate all of the good news! 
We were all scared in the beginning, wondering how many years we had left, if we would be around to see our children grow up and see them as adults.   Once you find out the treatment plan, and do research you will soon realize that this is not a death sentence.....just a bump in the road......granted a pretty big bump but you will get over that bump.  It may take some pushing and pulling by family, friends and your new sisters here but you will get over it!
Be careful as to what sites you visit, some are very old and dated and so are scary.  This one is great, also the American Cancer Society, Dr susan Love's site, and my favorite is www.breastcancer.org.   Write down your questions for your dr, and have the person with you (and we always suggest someone go with you to help you "hear")  write down the answers. 
Sending you hugs,
We are here anytime!
Hope and strength,
Julie S
Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-

Deb Allen
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Re:Introduce Yourself - Sunday, July 26, 2009 12:14 AM
Sandy, you are 45, you are young, and just recently diagnosed less than a week ago.  This is a time to step up, step back, and remember to breathe.  Gather all medical information you can, and ask for copies of tests, and ask questions, and more questions, until you are satisfied with the answers.  Please take a friend with you for a second set of ears, or even a recorder...the next few weeks are going to seem like a walk in a fog with blinders on,,,but you absolutely can get through to the other side.  Please browse the other forums, and don't hesitate to post whatever you feel, think, fear, or are angry about.  Komenville is here for you. 

Deb

Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





chongs017
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Re:Introduce Yourself - Wednesday, July 29, 2009 2:24 AM
All. Hello, my name is Kealohi and I live in Hawaii.  In November, 2006, I was diagnosed with early stage of breast cancer.  There was no lump (in left breast)  but, my mammogram had some suspect images.  Went to ultra sound and still had suspect images.  Finally diagnosed after biopsy.  Had surgery (lumpectomy) on December 29, 2006.  Lucky for me, there was no cancer in my lymphnodes, especially under my arm. Recovered from surgery in time to celebrate New Year's with my family.  Didn't even have any pain.  Started radiation (6 weeks) in March, ending in April. I hardly had any pain thru radiation except for the last week, kind of raw but the radiologist was the best and made sure that I had enough gauze, wrapped around like a tube top, and salve to heal my burn (just very red).  I didn't peel at all.  The later part of April, I started taking Arimidex.  Good news is that I've been cancer free since first diagnosed in December, 2006.  In four months, I will be cancer free for 3 years.  I've been on Arimidex for 2 years and changed to Aromasin 2 months ago because I developed arthritis in my left wrist, last month, June, 2009, in spite of taking calcium, eating yogurt and drinking lots of milk.  Dr. changed my meds and added Vitamin D to my Calcium, also upped my calcium intake.  Now, I feel tired and nauseous almost every day.  Need to call Oncologist to report this new feelings.  My wrist still hurts so, I've been fitted with a brace, to alleviate the pain.  I am worried that my bones are getting too soft and brittle.  My mother and 2 sisters had/have osteoporosis and I really don't want that.  I need some advice.  I feel like canning the meds and just take the calcium with Vitamin D, fish oil and papaya enzymes (helps digest my food intake so I don't feel so nauseous).  Or, I may ask Dr. if I can take arimidex or Aromasin every other day.  Wish me luck.  I hate feeling tired and nauseous all the time.  Even getting up every morning is a chore and I'm still employed.  I just made 60 this month and feel like I'm much older.  I planned on working until I am 65 to 67 years old.  Our Presidents are as old or older. I used to have lots of energy.  My grand-children are always with me, almost every weekend but, I don't take them anywhere because I'm too tired.  It's a chore just to take care of them, 2 yrs old and 6 yrs old, let alone take them out somewhere.  Help!  My quality of life sucks right now.

Tricia Keegan
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Re:Introduce Yourself - Wednesday, July 29, 2009 2:39 AM
Hi,

Theres every chance the hormone therapy whether it be arimidex or aromasin is keeping you cancer free so please don't stop taking it just yet.  Have you had a Dexa (bone density) scan recently?    It's usual to have them once a year or so when you take an A1 and you should also have had one before starting to have a baseline. This will show clearly any bone loss.   There are meds to help you if there is any bone loss, Fosamax or zometa to name two which will not only build up bone strength but protect against mets too.
The stiffness and joint pain can be helped by taking glucosamine/chondroitin daily but it's very important you exercise to maintain bone health, even a short walk daily will help enormously.   My first dexa showed slight bone loss but I increased walking time and the following year my scan showed none at all:)
As to the VITD, this is something you should have been taking all along with the calcium although it can have side effects if you take too much, maybe it's clashing with something else you're taking ???     Either way, first thing is to request a dexa if you haven't had one which will also show whats happening with your wrist but if not maybe have that x rayed.  If you need to get a second opinion but do think twice before stopping until you absolutly have to.    If you go to the hormone therapy forum you'll see more info and also at www.arimidex.com
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

da808
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Re:Introduce Yourself - Wednesday, July 29, 2009 4:15 AM
Hi Kealohi.  I live in Hawaii, too.  What island are you on?  Have you had a complete physical recently?  Your fatigue could be caused by something else.  PM me if you want to walaau, and I'll give you my phone number.  Congrats for being NED since '06!
Debra
Hawaii
5/26/09 DX RB DCIS
6/3/09 DX RB Multi-Focal DCIS & IDC ER90%/ PR15%  
6/10/09 BRCA1 & 2 negative
6/12/09 RB Mastectomy SNB 5 nodes clean margins 
6/22/09 SNB+ w/ Extra Capsular Invasion DX Chemo, Rads
6/29/09 Axillary Node Dissection 18 nodes 
7/7/09 Results AND neg, stage IIa, T1c, pN1a
7/20/09 HER2- 
8/6/09 T/C 4 X completed 10/8/09
Rads completed 12/31/09
Recon Postpo

nmb
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Re:Introduce Yourself - Monday, August 03, 2009 2:58 PM
Hello.

My name is Nancy (from Turner, Maine).  Just getting my feet wet with all of this since I was diagnosed just over 2 weeks ago.   Initially got the bad news with some good news, Breast Center suspected cancer but only with 2 cm tumor (ultra sound) thought it was stage 1 and although mastectomy due to tumor location (behind nipple) we were hoping for just the mastectomy.

Mamo was worse - shows 6cm by 4cm.  So stage is upped to at least 2.  My MRI is tomorrow and I do not see the oncologist until 8/11.  Very tired of waiting... plus so very scared.  I did see the plastic surgeon last week.
 
Biopsy did show a very low level of cancer in the cells (only 1 step beyond normal I think? )  Although pre-menopausal (age 47) I am PR and ER positive.  HER-2 negative. 

So, here we are... wait and see till 8/11.  Breast Center told me to assume they will insert a chemo port on 8/11.

Although an information junkie, have decided to wait till after oncologist visit to read all of the posts on this site.  Relying on Dr. Susan Love’s book plus googling specific information as I get it.   Am glad I found it though.

N
 

Deb Allen
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Re:Introduce Yourself - Monday, August 03, 2009 7:33 PM
Nancy, welcome to the best place on earth or cyberspace you can be right now...Komenville.  No one wants to join, but once you receive your diagnosis, this is the best caring and sharing and information site you will ever find. 

I understand your desire to not get any more information until you have all of your information and test results in, in order to better make your decisions. 

Just know that we are here, and you are welcome, and will be prayed for during your MRI tomorrow, and everything you undergo from here on out...whether you are comfortable sharing or not.

Hugs, and welcome,
Deb
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





nmb
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Re:Introduce Yourself - Thursday, August 06, 2009 11:56 AM
Surgeon's office just called.  MRI results = max tumor size 3.0 x 2.2 cm.  Craniocaudally (whatever that means) 2.3 x 2.2.  They told me not to worry about the next part, but I am still worried - now they want to do ultrasound on OTHER breast to check intramammory lymph node. 
 
Next Tues/Wed (more appointments include onco) cannot come sooner... or maybe it can...  gosh this is hard.

JulieS
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Re:Introduce Yourself - Thursday, August 06, 2009 12:42 PM
Nancy,
Welcome! I promise this is the hardest part....once you get all of the answers and a plan in place it gets easier.  It is always the waiting that is the worst.......our brain goes places it doesn't need to go but hard to stop it.  Sounds as if your tumor is slow growing, and er/pr positive is a good thing as well so do take a deep breath and try and enjoy the weekend.  Do something you love and will distract you. 
Sending you hugs.  We are here anytime for ranting, venting or support.
Hope and strength,
Julie S :-)
Bothell, WA
dx 5/07 IDC
lumpectomy 6/14/07 1.5cm
er/pr + Nodes negative
finished rads 9/13
Tamoxfen 9/07- 8/09
Arimidex 8/09-

nmb
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Re:Introduce Yourself - Thursday, August 06, 2009 3:41 PM
Thanks so much Julie and Deb.  It's so nice to have a safe place to come sputter - I could not figure out the darn intramammary lymph node because office did not explain it to me (or I was not listening)  I am learning to take more ownership and ask for test results plus google every term...  Glad I asked for copy of MRI

What do you think?  Except for the size (which I blame myself for) does not sound too bad, right???  I know, still need the masectomy and probably chemo but... I thought I was dealing with a 6cm tumor - NOT :)

Email I sent to family:

MRI results today.  This is good news.

 
Tumor size max is 3 cm x 2.2 cm.  NOT the 6 cm x 4cm mamo showed.  The mamo was reflecting the mass from biopsies plus a 1.2 x .6 cm simple cyst.  So, not back the the beginning diagnosis of Stage 1 (size does keep it Stage 2) but a lot better....
 
No suspicious adenopathy - meaning lymph nodes or otherwise swollen nodes. Multiple lymph nodes are seen but near the biopsy and appear to be reactive (lymph nodes help with the healing.)   Final lymph node information will be till surgery - they biopsy the sentinel node during surgery.
 
I am going for an ultrasound Tuesday for my left (other) breast - purely because of diagnosis.  Multiple simple cysts (no big deal) but also a 9 x 4 mm structure showing enhancement.  They are assuming it is the intramammary lymph node (a benign process) since it has a vessel leading directly to it. 
 
So for you medical folks, here's what I have (might be repeating)
 
Extensive Infiltrating Ductal Carcinoma involving 90% of each core
Mild to moderate cellular atypia and mitoses are rare
ER/PR Positive
MER-2 Negative (which I think means no herceptin, think the person in the office got this confused)
E-caderhin stain is positive (CDH1)
 
Tubule Formation score 2 (10 - 75%)
Nuclear Pleomorphism score 2 (increase in size)
Mitotic Count score 1
So total Nottingham Score is Grade 1 (from the 5 scores above)
 
Ultrasound Tuesday 1:30 pm.  Oncologist Tuesday, 2:15 pm.  Surgeon Wednesday 4:00 pm. 

Deb Allen
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Re:Introduce Yourself - Thursday, August 06, 2009 5:26 PM
Nancy, from what I can tell, you are in a pretty good place with your treatment team, and so far the results are NOT that bad.  No cancer is good, but some are worse than others, and Stage II is completely doable!!

The term you used about craniocaudal spiked my curiosity and I found this link that semi-sorta explains what it is (my interpretation, is the direction of the beam shooting the pictures, a different angle).  Of course I am no doctor, but thanks to you, I learned something new.  Now if I can just remember it!!!! 

Julie is right, once you have a plan of attack, and you settle into your course of treatment, you slowly regain a sense of control over what has happened to you, that you had no control over.  None of this is your fault.  It is cancer. 

Please keep us posted, and I hope you are checking out the other forums and posts.  This a great place, filled with amazing people.
Just like you.

Deb
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





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