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Lauriejn View Drop Down
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    Posted: Oct 18 2008 at 5:21pm

2 days ago I was diagnosed...found the lump 1 month after annual exam and 3 weeks later have this thing called triple negative breast cancer, grade 3, aggresive w/likely lymph involvement (they found cells in the needle biop)

Hi my name is Laurie, 39 yrs old, 3 1/2 year old daughter, 2 terrific "step sons", parents close by and a great companion/fiance.                                             I met with the surgeon yesterday and got the low down on this ugly beast.  I've opted for a full mastectomy and immediate reconstructive.  I haven't been tested yet for the gene- shoot, I haven't had an MRI yet or even know the name of my soon to be ONC doctor.

Friends and family know- the kids don't.  How do I explain this to a 3 year old?  I'll need to soon because surgery will be scheduled for early November.
Thanks and keep your chins up...shout out to the world "i'm stronger than this ugly thing!!" Smile  Laurie


Edited by Lauriejn - Oct 29 2008 at 7:26am
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2008 at 5:46pm
Evening Laurie,
 
So good to have you with us. I know that by joining this site that you will have all the support you ask for.....and more Wink
 
Is there a history of cancer in your family? If so, then you might want to go for the BRCA genetic counseling to determine if you should have the testing. There is a site   http://www.facingourrisk.org which has all the information that you will need to determine if you should have the test. Wonderful group of people there as are here on this site.
 
If you read the bottom of my post you will see that it is my daughter Lori who was dx TNBC. I do not believe that you could explain this to a 3 year old, but there will come a time, rthat some things may need to be told as to the changes that will take place. I know that I had seen where there was a book to read to children and I will try to find that for you.
 
Many of the gals here have small children and I know they will offer you advice. It sounds as though you already have a great support system.
 
We have many resources on the site, and all you have to do is click on the new forum..."TNBC news, Resources and Tips", go to page 3 of that forum, and click on "Directions on How to access our many resources". There is a Thumbs%20Up to the left of it. You will also find "Directions for adding your signature to Posts".
 
May I ask where you will be having surgery and treatments? We live in Altoona, Pa, but Lori went to Magee Women's Hospital in Pittsburgh for surgery and then here for chemo as they aggreed with the chemo regimen that Magee recommended.
 
Please feel free to ask all the questions you may have. We will be here for you every day.
Hugs,
Nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Lauriejn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2008 at 6:04pm
Thank you for that very informative response Nancy!
 
I am receiving tx at St Peters Hospital and Breast Center in Albany, NY.  I live in the area and family is near.  And yes, the support system is fantastic.  I also find that forums end up providing a wealth of knowledge and unbiased support which is needed to keep me sane Wink
 
Amazing how quickly this is moving...feels like I need to be smacked in the forehead- wake up!  DOH!!
 
peace- Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2008 at 6:24pm
Laurie,
 
Sweetie, just one thing.  Triple negative can have micro-mets that might not show up in a Sentinal Node Biopsy, one of the latest forms of checking for lymph nodes having spread.  It sounds like your docs are on top of this, but you might want to insist on them doing the old fashioned lymph node dissection and strip out any cancer that might be there. 
 
You are not alone.
 
All the best,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote babyblueca2000 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2008 at 4:23am
Hi Laurie
 
Welcome to the site.  I am also new here and you will get some wonderful support and information from this site.
 
I understand where you are coming from when it comes to kids.  I also have 4 children, 18,14,10 and 4, all boys.
 
We told our children right away.  Our 4 year old does not really understand anything.  When I had my surgery, we told him that I was sick and mommy's chest hurt.  He does not really understand what is going on.  I had my hair cut up short to get him used to seeing my hair short.  I have also forwarned him that mommy's hair is going to fall out eventually because she is sick and the medicine they will give me will do this.  I will go over this again with him when I start chemo in a couple of weeks.
 
All I'm doing is trying to make the lives as normal as possible and staying with their routines.  I think that will get them through this.
 
Not sure if I"m handling it right, but seems to be working so far.
 
Its never easy telling kids, but I told mine right away, they always figure out somethings wrong.  You may want to look up on the internet on how to tell kids about cancer to help you out a bit.
 
Tammy
TNBC
41 yrs old
2.5 cm tumor (IDC)
Mastectomy 08 Sept 08
Nodes: 3/15 involved
Chem 6 rds of FEC every 3 weeks
16 rds of Rad
Completed treatment 16 Apr 09

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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2008 at 6:14am
Laurie,
 
I have found 3 links for telling your children, but I know there is a book somewhere for small children. I will keep looking.
Hugs,
Nancy
 
 
 
 
 
 
Now I have found 5 books, but since I have not read them, I cannot tell you if they are of value. Perhaps some of the gals will also have suggestions.
 
1. Our Mom has cancer
by Abigail and Adrianne Ackerman
 
2. Butterfly kisses and wishes on wings
by Ellen McVicker
 
3. Sammy's Mom has cancer
by Sherry Kolenberg
 
4. Can I still kiss you?: Answering your children
by Neil Russel
 
5. Becky and the worry cup: A children's book about a parent's cancer
by Wendy Schlessel Harpham
 
 
I hope this helps.
Nancy


Edited by Nancy - Oct 19 2008 at 6:33am
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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sibu View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2008 at 10:07am
Hi Laure and welcome!

I was where you are, two years ago.

Here's one more book: "The Year My Mother Was Bald" Anne Speltz.

Three is pretty young to know what's going on. Is she in preschool or daycare? They say it's important to keep their routine as normal as possible. If you can, now may be a time to establish regular visits or helpers. That was the hardest part for me, as I had no family close and my baby was just a year when I was diagnosed.

How old are your stepsons? Here's my 10-year-old son's advice: "Tell the older boys that you have cancer and that they need to help out a little more and help take care of the younger one and basically be more responsible and take things a little more, like, maturely. Give them a lot of attention and ask them if they're sad about what's happening."

I can give you advice on how NOT to do it! I thought I did a great job in breaking the news to the kids, sat down and described the situation clearly and simply. Then I called them back in for an update a couple weeks later and my son acted like he had no idea what I was talking about. He says, "Oh, mom, are you still sick? I thought you'd be feeling better by now."

Then a month or so later, it really hit him. His teacher tells me that they made an announcement at school that their principal, who had been fighting cancer, would not be returning, as she was too ill. That started several kids in the class talking about their grandparents, etc., who had died from cancer. I think he didn't realize at all until that moment, what cancer really was. He put his head down on his desk and started silently sobbing.

So it's probably like any other difficult subject--you don't want to give them too much information that they're not ready to handle, but you also don't want them to find out from kids in the schoolyard!

Many hugs and best wishes your way. Keep us posted!
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2008 at 12:17pm
Hi Laurie and welcome!
 
I'm very sorry to hear of your diagnosis, this is a very emotional time for you with important decisions to be made.  One thing I might suggest you consider is having your reconstruction done after treatments are finished.  My daughter did it that way last year and I know many others have as well.
 
You are right, I like your attitude when you way we are stronger than this nasty disease.  We don't want to give c the upper hand in our lives, then c wins, not us.
 
Keep us posted as you learn what treatments you will be having and if you have any questions we will do our best to help.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote szabpan Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2008 at 9:50am
Dear Laurie,
I have three children. Now they are 15, 16 and 18. At the time of diagnose they were 9,10 and 12. (This is an encouraging fact, isn't it? Wink )
They all knew everything: they were standing at the gardendoor when I came home with the diagnose "in my pocket".
Is not wrong, is it? - they all asked.
It is wrong, really wrong - I had to answer.
I think straightness works, at every age. To choose the right (age relevant) form of sraightness is difficult.
But my oncologist asked me: do your children know about your disease? Yes, they do, just the fact, but they do not know, how especially wrong type if bc a "cought".
- That's right. They have to know as much as they can bear.
This was her opinion, and we (my husband and I) shared it.
Best wishes: Anna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote szabpan Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2008 at 9:54am
 excuse me... 'if bc a "cought"' means 'of bc I "cought"'
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 20 2008 at 11:38am
I now remember when I was diagnosed the first time I was sitting in my doctor's office and of course freaking and I asked him "what do I tell my family"?  I don't really know why I asked that.  I knew I would go home and tell them.  I had two early teens still at home.
 
He told me if it were he and his wife they would gather up the family and tell them.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2008 at 5:25am
I appreciate all the replies.
 
Simply put, I needed to tell my daughter- something.  I volunteer as an EMT for our town fire dept so she's heard things...A few days ago she comes out with "does everyone die when they go to the hospital?"  Oh boy had to nip that one.  "No peanut- most people don't."  I explained that mommy's booby has a boo-boo and i'm going to the hospital to let the doctors take care of it and would be back in no time.  We've picked out a spray bottle and special dusting cloth we could use to polish mama's bald head- should it become bald.  I've ordered 2 books to read when chemo starts, so this happy little girl stays that way and mama remembers to keep moods in check! Wink   It all seemed right at the time.
 
Laurie


Edited by Lauriejn - Oct 21 2008 at 4:11pm
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NancyJane Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2008 at 7:02am
Laurie:
It sounds like a wonderful plan.  I am confident that you will handle this just right as your daughter asks questions and needs information.  No one knows your child as well as you and your husband.  You will make the right decisions.
 
Sending you much love and light Hug,
41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2008 at 4:19pm
Thank you everyone!
 
Is there any sort of order these txs/goings on need or should happen??  All of a sudden it feels like I'm at a stand-still.  Busy day tomorrow- MRI, initial visit w/reconstructive surgeon and pre-op w/GP.  I have not received the name of a doctor for the gene counseling nor do I have an ONC yet.  Do/should I meet with an ONC before the surgery to make some general impressions ?Honestly, I don't want to have to think or make decisions for a few days after surgery (hows that for selfish!).
 
Any thoughts?
 
Peace- Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2008 at 8:31am
Hi laurie,
 
Your doctor will help you set up with an Oncologist and let you know what to do next or you can choose a place of treatment.  Usually the pathology is learned and then  any scans, surgery, possibly a port at the same time would be a suggestion or something to ask about and then you will start your chemotherapy when your body is healed enough to begin.  Your surgeon will know best when you are ready to begin chemo.
 
Some people do therapy first and then have surgery if needed which is called neo-adjuvant.
 
Up near the top there is  link to click on called Resources and when the drop down shows click on Take Charge of your care and there is some great information to help you get started.  Lots of good questions to ask your medical and Oncology docs.  And do not hesitate to get a second opinion
 
The Genetic counseling you may have to set up yourself with a certified Genetic Counselor.  This information would be good to know early on if you can get it in.  After your counseling if they think you would qualify than the simple blood draw can be set up thru your Onc's office and sent out to Myriad Labs.  Or the counselor can arrange for the blood draw.
 
I have not had reconstruction but my daughter did last year.  She had a unilateral mastectomy at the time of diagnosis and after her treatments she had the other breast removed and her reconstruction.  That is something you can always do when you are thru with treatment.
 
Let us know what you found out today and good luck!
 


Edited by trip2 - Oct 22 2008 at 8:32am
Stage 2 2003
Stage 1 2007
BRCA 1+
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Lauriejn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauriejn Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2008 at 4:02am
Thank you Pam!
It seems I'm a bit of a control freak- taking charge, needing to know and doing WAY too much research on the internet- sometimes knowing too much can be detrimental.  I found my attitude slipping into the dark void of self mortality.  Too much scientific babble, mumbo-jumbo, prognosis and outcomes based on old information.  It was an icky place to be.
 
I called the surgeon and asked a lot more.  He laughed and told me to stay off the internet and to remember that each case is different and lets work on me.  Things I learned ...The oncologist I will be seeing does the genetic counseling.  Treatments will begin after surgery and healing.  Per the surgeon, "we'll need you to be in a healthier state all around when chemo starts". He isn't afraid of patients using complimentary therapy (reiki and nutritionist)  He's ticked off the MRI people cancelled my appt due to menstral cycle was happy that its scheduled for monday.  The surgery will happen Nov 4 or 7 and I may hold a funeral for my bras or sling 'em up a flag pole mid november. (snicker) Big%20smile  Pre-op went well- I'm cleared and the Plastic surgeon is an awesome lady who taught me a lot in the hour we chatted.
 
Will know more next week.
Peace- Laurie
Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes
Bone Mets dx Dec 2008-Stage 4
Albany, NY BRCA neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sibu Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2008 at 6:12am
Hey Laurie,

Stay on the internet--keeps your docs on their toes!

I just printed out a few articles posted on this site to give to my onc., who famously told me once that there was "really nothing you can do to increase your chances of being in that non-recurrence group." Hope he has some happy reading.

You can give up the thinking you're in control thing any time, though. We've all tried that...lol

My ps seemed to give me more straight talk than the other guys.

Hang in there!

Best,

Donna


Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+
Double mast. 1/07
Chemo 6 X TAC 6/07, rads 10/07
Hyst./Recon. 12/07
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2008 at 1:25pm
Hi Laurie,
 
I have two boys ~ aged 19 and 21. Both of my sons have needed tons of reassurance and talk more to their "girl friends" than to me...which is why I have talked to their parents often...keeping the mothers posted on my progress. They in turn have accuratley informed their daughters so they can support my sons! I know this sounds complicated, but the boys don't want to look weak, stupid or too emotional.
 
They lost their grandfather (my dad) just 2 years ago to cancer, and I think they really can't handle much more than this.
 
I worked hard to keep routines simple and "normal" ...even for older kids this is important.
 
I also did not act like a martyr ~ if I was sad, I cried. If I was tired, I rested...and so they saw the reality of my situation without a lot of talking. There has been a lot of hugging, thoughSmile.
 
Just my experience...good luck and great big hugs,
 
Kathy
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2008 at 4:01pm
Hi Laurie,
 
I agree with Donna, stay on the internet.  Lots of docs tell their patients that from what I can gather.  Sure we can get ahold of some old outdated information and that scares us, puts ideas in our heads but if we stay with updated info we are empowered and can ask questions that are intelligent.  Some docs, I know my Onc is intimadated because I ask questions.  I have caught him in some moments that made him look like a deer caught in the headlights.  He didn't have an answer.  Last time I was there he told me to go out and get a job.  I'm too ill for that but he doesn't look at my file anymore.
 
 

Anyway sounds like you are starting to get some answers and that feels better for us. when we are starting out.  Everything will fall into place.
 
Keep us posted,
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote joanne Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2008 at 7:54pm
Hi Lauriejn
 
I, too, live near Albany.  I was diagnosed last April, had surgery at St. Peter's in May, began chemo in July.  I am still in treatment.
 
I wanted to let you know about Gilda's Club in Latham.  It's a great resource...there are wellness groups for all.  We have a nice group of women going through treatment, in various points in the journey.  Check it out online. 
 
We'd love to have you join our Tuesday eve group!!! 
 
-joanne
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