2 days ago...
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Topic: 2 days ago...
Posted By: Lauriejn
Subject: 2 days ago...
Date Posted: Oct 18 2008 at 5:21pm
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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!!" 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 |
Replies:
Posted By: Nancy
Date Posted: Oct 18 2008 at 5:46pm
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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
 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 - 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
 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 |
Posted By: Lauriejn
Date Posted: Oct 18 2008 at 6:04pm
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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
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 |
Posted By: CarynRose
Date Posted: Oct 18 2008 at 6:24pm
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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 |
Posted By: babyblueca2000
Date Posted: Oct 19 2008 at 4:23am
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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 |
Posted By: Nancy
Date Posted: Oct 19 2008 at 6:14am
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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
http://www.cancer.org/docroot/ESN/content/ESN_2_1x_Talking_with_Children_About_Cancer.asp - http://www.cancer.org/docroot/ESN/content/ESN_2_1x_Talking_with_Children_About_Cancer.asp
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1118373 - http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1118373
http://www.cancer.gov/cancertopics/takingtime/page3 - http://www.cancer.gov/cancertopics/takingtime/page3
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 ------------- 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 |
Posted By: sibu
Date Posted: Oct 19 2008 at 10:07am
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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 |
Posted By: trip2
Date Posted: Oct 19 2008 at 12:17pm
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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+ |
Posted By: szabpan
Date Posted: Oct 20 2008 at 9:50am
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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?
 ) 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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Posted By: szabpan
Date Posted: Oct 20 2008 at 9:54am
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excuse me... 'if bc a "cought"' means 'of bc I "cought"'
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Posted By: trip2
Date Posted: Oct 20 2008 at 11:38am
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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+ |
Posted By: Lauriejn
Date Posted: Oct 21 2008 at 5:25am
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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!
It all seemed right at the time.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 |
Posted By: NancyJane
Date Posted: Oct 21 2008 at 7:02am
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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  ,------------- 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 |
Posted By: Lauriejn
Date Posted: Oct 21 2008 at 4:19pm
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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 |
Posted By: trip2
Date Posted: Oct 22 2008 at 8:31am
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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!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Oct 24 2008 at 4:02am
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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)
 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 |
Posted By: sibu
Date Posted: Oct 24 2008 at 6:12am
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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 |
Posted By: kmartin
Date Posted: Oct 24 2008 at 1:25pm
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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, though
.Just my experience...good luck and great big hugs,
Kathy ------------- Round 1 - 2/8/08 IDC, Stage 2, Grade 3, TN (R) Lumpectomy, ax nd 3/11/08, 4/33 positive TAC x 4, AC x 1; RT x 33 genetic tests - |
Posted By: trip2
Date Posted: Oct 24 2008 at 4:01pm
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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+ |
Posted By: joanne
Date Posted: Oct 24 2008 at 7:54pm
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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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Posted By: trip2
Date Posted: Oct 25 2008 at 5:52am
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Hello Joanne and welcome to our forum.
I'm sorry to see you've been diagnosed but we are glad you found us, this is such a special place to be for information and support.
Thank you for sharing about the Gilda's Club near you. We hope when you are ready you will share a little bit about yourself.
I hope you are doing well during your treatments, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Oct 25 2008 at 5:13pm
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Donna, Kathy, Pam and Joanne- thanks much for responding.
Remembering a favorite mantra- if you don't know what to do, do nothing at all...part of that control thingie.
Surgery is scheduled for November 7, MRI on Monday to check on other side, lymph nodes and chest. I believe the techs may find an infection in the area of the biopsy. Its been very sore for a few days- odd that its been weeks since the biopsy. Skin in the area isn't discolored, or hot to the touch- just very sore. Oh well and I here I thought brca wasn't "painful".
 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 |
Posted By: Nancy
Date Posted: Oct 25 2008 at 5:17pm
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Laurie,
Have you told your doc that you think there is an infection? That MRSA is really rampant everywhere....still! Do not mean to frighten you, but please have it checked.
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 |
Posted By: Lauriejn
Date Posted: Oct 26 2008 at 7:40am
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Nancy- I plan to call doc on Monday while I'm at the MRI (in same bldg) Its not at all sore today, not even to the touch. Yesterday, even when I was still it was painful (almost like a shooting quality) Odd, glad it stopped and will speak to doc tomorrow. Thanks! 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 |
Posted By: trip2
Date Posted: Oct 26 2008 at 11:12am
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Hi Laurie,
Be sure and let us know how Monday goes and I agree with Nancy, be sure and ask about the soreness at your surgical site. Some discomfort is expected. Are you running a fever? If so you need to find help soon.
Good luck, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Cookie
Date Posted: Oct 27 2008 at 9:25am
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Laurie:
For sure, see your doctor regarding the pain. I had my lumpectomy 1/14/2008. I started 1st chemo in Feb. finished the end of March and shortly after my breast became pinkish felt a little harder and a little bigger. I was in AZ for the winter so on my way home to MI I got a fever of 104.7, had chills one night never knowing it was from what was going on in my breast.
Long story short got home 4/17 saw my new onc in MI on 1/18 and ended up in the hospital with a staph infection in the same breast that the lumpectomy and biopsy were done. I was hospitalized for 3 weeks on IV of vancomiacin and had to take 6 more at home.
The thought is that I got the infection at the time of the lumpectomy but when I went on chemo shortly after it didn't materialize until the chemo was finished. Talk to the Dr.! Make sure he examines you too.
------------- COOKIE 3- 9 Richardson Clean Nodes 4.5 cm Clean margins Stage pT2, pNO, PMX (spot on right lung showed up in routine chest x-ray too small to biopsy)Lumpectomy 1/14/08 |
Posted By: KCMCF
Date Posted: Oct 27 2008 at 10:02am
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Here is some advice to help your 3 1/2 year old. My 35 yr old sister(last year was diagnosis grade 3A with node involvement,TNBC BRCA 1+) who is like a second mom to my children( at that time was 3 1/2 and 5). I had concern how to tell my children. Tell them what you think they could understand. I told my children Aunt TT will have to take a medication that will make her hair fall out. But it is only a medication that adult take. So when Chemo started, nurse told her about a date when her hair was going to fall out. We make it on the calander and we had a hair cutting party. All of her neice and nephew where there and they all help cut and shave Aunt TT hair. Do not hide anything from them be honest it will make them stronger. My children any time they see a breast cancer ribbion the alway say "look breast cancer". Hope this helps. We even have picture from our hair cutting party. Remember take one day at time. Fight! Colleen
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Posted By: trip2
Date Posted: Oct 27 2008 at 2:34pm
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Hi Colleen,
What a great idea, thank you for sharing how your family handled informing the children.
I hope your sister is doing well now. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Oct 27 2008 at 4:49pm
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Oh good lord- send me into a burning building any day just don't ask or tell me to have another MRI. Not a twenty minute experience I'll be repeating- ICK!! I asked the tech what she saw in the 4400+ pictures and left it open for her to answer- wasn't expecting her to so when she came out with "nothing in the left breast or lungs" I was a bit shocked!! The doctor will review the results by Wednesday so I'll post more then.
PA examined biop site and found nothing...I am not running a fever nor have swelling or discoloration and have found the jolting pain has subsided. I am monitoring for symptoms. For now I am content believing its the "pacman" created during imagery meditation to eat cancer cells.
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 |
Posted By: Lauriejn
Date Posted: Oct 27 2008 at 5:10pm
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Colleen, Cookie and Pam- Thank you for the responses. Two books were delivered today "Butterfly Kisses and Wishes on Wings" and "Tickles Tabitha's Cancer-Tankerous Mommy"- most excellent books for younger kids and discussion. The most important part for me is my little peanut is surrounded by people she loves and who love her when I have the surgery and the weeks following.
All is good. 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 |
Posted By: Lauriejn
Date Posted: Oct 28 2008 at 8:17am
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Per the surgeon, he spoke w/radiologist and reviewed the MRI pictures quickly - he won't get final copies until next week - The left side is clean, the lymph nodes are not enlarged or clumped however the tumor seems larger than originally thought - 4-4.5 cm. Surgeon did mention that the MRI does tend to enlarge (seems like he may have been blowing sunshine in my general direction) Is it possible that the tumor has grown that significantly over two weeks?
This potentially changes the stage.
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 |
Posted By: trip2
Date Posted: Oct 28 2008 at 9:01am
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So Laurie, does this mean your doc doesn't have a full report yet?
I know it isn't easy but I would try and not get too worried. You need to know what the final conclusions are for that scan.
Stay busy as you can for distraction, go shopping, out to lunch, read a funny book or watch funny movies. Fingers crossed nothing will have changed.
Keep us updated, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Oct 28 2008 at 2:48pm
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Pam, no he doesn't have the full report and won't until early next week. I am glad he called to give me some news and honestly it got me thinking and researching more so I can hit him up with more questions tomorrow...First question- were any dead cancer cells found in the biopsy. For me, its important to know how quickly this tumor is growing. It is grade 3 and maybe the doctor didn't release all the information. I am still having surgery next week and with more info, I may decide to have a bilateral done instead of the right only.
Means I need to work harder to get NED.
 On another note, I read the books mentioned above (pg 3) to DD this morning before going to work and what an effect- she thanked me for buying them to help her learn (she is only 3 going on 20) What a ticket.
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 |
Posted By: Lauriejn
Date Posted: Oct 29 2008 at 5:31am
My doctor loves me  I've taken up faxing him questions. At least I got a chuckle out of him. MRI results due early next week.
Peace! ------------- 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 |
Posted By: ReneeST
Date Posted: Oct 29 2008 at 7:26am
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Hi Lauriejn,
Stay on the Internet, but read things written within the last 2-3 years. For me, the reports and articles before 3 years tells me I am going to die tomorrow. So much has been gained in recent research.
Initially, my tumor was 1.2 cm with the biopsy, ultrasound and mammogram. The MRI moved it up to over 3 cm. What I was told is that laying face down in the MRI tray, the breast tissue stretches - becomes elongated. Thus the large size of a tumor.
My hospital had a team approach - the surgeon, Oncologist and Radiologist met with other teams to discuss each case. They also have a Breast Cancer Nurse Coordinator who coordinates the appointments and gets answers quickly from the docs. It has worked out very well for me!
I wanted chemo first to ensure that it was working, shrinking the tumor. I couldn't get anyone to budge on this issue and went ahead with surgery first. That's something for you to talk with the Oncologist about, leave the other two out of the decision.
Also, has anyone mentioned getting a port-a-cath or PowerPort placed while you are having surgery? It has helped to save my veins for chemo.
Lastly, I consulted with 3 Oncologists (after surgery, dang it) and all no longer use Adryiamycin. They agreed, looking at the path reports and surgical reports, that 4 doses, 3 weeks apart, of Taxotere and Cytoxan given at the same time would do the trick.
With the clinical trial, would they cover the costs of the drugs?
------------- 56 yo Seattle, WA Stage 1, Grade 3, 1.3 cm IDC Lumpectomy Aug 2008 SNB neg;4 rds Taxotere & Cytox. BRCA-2 Variant. 16 Rads Jan 2009 "Canadian Study" www.reneesbumpintheroad.blogspot.com |
Posted By: Lauriejn
Date Posted: Oct 30 2008 at 3:58pm
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Renee- thank you for responding. I'm not sure I've had time to think whether chemo prior to surgery was an option. I want this beast out of my body and November 7 cannot come soon enough. The tumor has grown. We say we know our bodies best...I found the tumor when it was tiny and now I'm feeling this thing reaching up under my nipple. 5 weeks and I'd say its doubled in size. Calling surgeon tomorrow to voice concern at how quickly its grown. Not liking this turn at all. I will meet with the onc after surgey and healing begins so says the surgeon. I believe a port will be "installed" in December. Oh Happy Holidays! Odd, my companion/fiance is in the pharmecutical industry engineering this stuff I'll be taking soon and none of the trials are held in our area. Unfortunately, Boston is the closest location and that is over 3 hours away. Oh, I spend 80% of my days on the internet for work so not seeing info is out of the question!! I will be more careful at receiving newer items. Good advise! 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 |
Posted By: krisa
Date Posted: Oct 30 2008 at 4:44pm
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Laurie, (my daughter's name) Tumors can grow fast-especially grade 3-TNBC, by the time my tumor was removed from when it was discovered, I believe it almost doubled (28 days). People would tell me over and over again, to take my time in making decisions because the cancer had been there for years and years and a few more months would not make a difference-I BEG TO DIFFER! Maybe some breast cancers have been there for years and years and you have more time to make decisions, but not with my breast cancer...I was like you and wanted the cancer OUT ASAP. |
Posted By: Bunnysmama
Date Posted: Oct 30 2008 at 5:48pm
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Hi Laurie, I was 37 when I was initially diagnosed (I'm now 39) and my daughter was just about to turn 3. From my experience, I can tell you that her biggest concern was not that I was "sick." She wasn't (and still isn't) old enough to be able to understand the degrees of sickness or that anything could be worse than when she has a cold. The most difficult thing for her to understand was when I lost my hair during chemo. That was a change she could actually see and could verbalize, and it was very upsetting to her. Even now, almost two years later (hooray!) she mentions on a fairly regular basis that she doesn't ever want me to lose my hair again and that she can't wait until it grows out long "the way it's supposed to be."
Having been through treatment with a young child, I'd be happy to talk to you more if you'd like. Just let me know.
Best wishes!! ------------- Dx 11/06 @ age 37 IDC Stage I, Grade 3 BRCA2+ |
Posted By: trip2
Date Posted: Oct 31 2008 at 8:26am
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Hi Laurie,
You might consider asking your surgeon to put your port in while you are having your mastectomy and that would save you from having another surgery. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Oct 31 2008 at 8:43am
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I didn't realize the port could be placed that far in advance!! Surgeon stated chemo would not start until early December/late November. Excellent- thanks Pam!!
Bunnysmama- My daughter has picked out a matching purple wig we can wear on weekends. She feels its a game and I'm willing to let it be one at this point
Thank you everyone for the solid advice and comments.
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 |
Posted By: Cookie
Date Posted: Oct 31 2008 at 9:13am
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Laurie:
Also, make sure to talk to the doctor who is putting in your port prior to insertion. Make sure it isn't put in a spot where your bra strap will bother it. ------------- COOKIE 3- 9 Richardson Clean Nodes 4.5 cm Clean margins Stage pT2, pNO, PMX (spot on right lung showed up in routine chest x-ray too small to biopsy)Lumpectomy 1/14/08 |
Posted By: trip2
Date Posted: Nov 01 2008 at 9:20am
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Hi Laurie,
Absolutely you can do that. That is what I did last year, my surgeon's idea and it was a few months before I even started chemo. It is so much better since the surgeon will be right there where the port will be placed.
Let us know how you are doing! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Nov 04 2008 at 4:37am
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The surgeon will not put the port in the same day. We discussed at great length his reasons and I'm okay with his why he won't do it. If/when I need the port, he will put it in at that time.
So anyways, I'm moving my posting over to the talk forum and will post after the surgery sometime after Friday. I find it so bizarre that I'm looking forward to having this surgery. Praying for quick healing, no infections (ie MRSA) and no other damage done by the "beast".
To Fellow soon to be survivors: Do not let fear take over...Fear stems from thoughts however thoughts are not tangible. When you find yourself in "panic mode"- relax, breathe in- feel the breath move down into your lungs and breathe out feel it coming out your nose/mouth. Your thoughts will be quieted and calmness will return. Guaranteed!!
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 |
Posted By: Lauriejn
Date Posted: Nov 08 2008 at 11:04am
I am home from surgery. All things considered, it went well. 3 sentinals came back positive so surgeon did full node dissection. He was very surprised how normal all the nodes looked. I had found 2 lumps around my clavical/neck the night before surgery  and surgeon biopsied day of surgery. Pathology will be back Wednesday on everything.
Sore but happy to be home!!
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 |
Posted By: Louise
Date Posted: Nov 08 2008 at 12:30pm
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Hi Laurie,
My name is Louise, 53 years young, public school teacher, lumpectomy in July, Stage I TNBC Grade III....no lymph node involvement. I'm 9 weeks into 24 weeks of chemo, and I've been lucky. My side effects are easily remedied so far.
I'm writing to tell you about my 4 year old (Oct. birthday) granddaughter, Karleigh and my 6 year granddaughter, Alexis. I wait for them to ask questions and give them simple answers. If they ask another question I give them another simple answer. Karleigh wanted to know about my bald head and my Groshong catheter line. I told her I was taking medicine, and it made my hair fall out, but it will grow back. I told her the line is how I take the medicine. Alexis has two grandmothers with breast cancer..........she just tells everyone "my grandmothers have breast cancer". Karleigh recognizes the pink breast cancer ribbon and says "Look, it's the ribbon for breast cancer people." She begs her mother to buy anything with the breast cancer ribbon so she can give it to her "Wezie" (me) My 3rd graders at school also require the simplest of answers to their questions. To tell you the truth it all reminds me of explaining sex to my children when they were growing up........keep it simple when they begin to ask questions. Their questions will let you know how in depth you need to go.
Laurie............it's going to be okay. Try not to agonize over the unknown. Immerse yourself in the gestures and words of love you will experience in the coming months from family and friends. Stay away from depressing blogs....look for the positive places. I have two favorite sayings I want to share with you.....
"For every adversity, there is a seed to a greater benefit."
and..........
"Just when the caterpillar thought its life was over it turned into a butterfly."
God bless you and your family,
:)Louise
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Posted By: trip2
Date Posted: Nov 08 2008 at 3:49pm
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Hi Laurie,
So glad you are home! Let us know when you get your results Wednesday. More waiting huh?? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Nov 08 2008 at 5:05pm
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louise,
I did a search and I did welcome you...but that was months ago. So...welcome back
My daughter Lori teaches second grade and she loves it....absolutelty loves it!! Her stats are at the bottom of my post.
Your favorite sayings are keepers, and you sound as though you have a great attitude. Your answers to your granddaughters are right on target. Keep it simple...and if they want to know more....they will ask.
If you need any tips for the chemo, even though you are 9 weeks in to it, we have chemo and rad tips which are from the gals here on the site. Just go to the TNBC New, Resoruces & Tips Forum, and click on the last page which right now is page 17. They are yousr for the printing. Also, if you have any tip which is not already there, please tell me and I will add it/them. Always room for more, as every little bit of advice coming from one of you ladies is the best advice anyone can get.
Please post and tell us more about yourself.
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 |
Posted By: Nancy
Date Posted: Nov 08 2008 at 5:08pm
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Laurie,
So glad to hear that you are home. Take care of yourself, rest and let us know the results of the pathology report. We will be sending inspirational thought you way.
Many 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 |
Posted By: Louise
Date Posted: Nov 09 2008 at 5:53am
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Hi Nancy,
Thank you for your message. I stayed away from the internet for some time.........but, now I'm looking around again at the proactive sites. I appreciate the lead about the Resources and Tips Forum..........I'm headed that way right now. I will be doing 6 1/2 weeks of radiation at MD Anderson when I'm finished with chemo......hopefully, the end of February.
So, I'll appreciate advice concerning radiation. I hope your daughter is staying ahead of TNBC. I understand it affects young women more than people "my age". I admire these young women who are battling cancer while raising families and/or working. They are my heroes.
God Bless!
Louise
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Posted By: Lauriejn
Date Posted: Nov 09 2008 at 6:32am
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Thank you for the welcome homes!!
Hospital sent over a home healthcare nurse to check up on me this morning. I guess I'm healing very quickly and very well. The nurse asked a few times the operation date- no swelling, bruising and not a lot of fluid build-up. She believes the drains may come out this week. WOOOHOOO.
I'm off to enjoy a walk before it gets November appropriate.
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 |
Posted By: trip2
Date Posted: Nov 09 2008 at 11:53am
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Wow Laurie, how nice that a healthcare nurse came to check up on you.
I've certainly never had anything like that. I'm so glad you are healing quickly. That would be great if you can get your drains out this week. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Nov 12 2008 at 10:08am
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Hi Pam. I feel like I'm healing quickly. and hope the drains come out prior to the portacath being put in- next week for some much needed sleep. I've started a new posting on TNBC Talk area- posted the results of pathology.
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 |
Posted By: trip2
Date Posted: Nov 12 2008 at 4:27pm
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Alrighty laurie I will check it out, I am so behind in reading the forum!
Hugs ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Alison4ox1
Date Posted: Nov 15 2008 at 4:16am
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I have been diagnosed with Triple Negative Breast Cancer, initially size was 1.3 cm but after MRI sizing 5 cm. 1 node involved but no spread to other organs bone scan clear, liver scan clear and lung and heart clear. Having neoadjuviant chemo (FEC x 4 then possible Tax x 4) then surgery and then radiotheraphy.
Very Frightened have up and down days sometimes just sit and cry why me. Then I look at my 3 girls and want to fight.
No breast cancer in family as far as I can find could I be the first and do I need to be checked for the gene.
Love to hear from anyone with some positive words because everything I seem to read is so negative, frightened for when treatment stops and how to notice signs of recurrence.
Alison
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Posted By: anna921
Date Posted: Nov 15 2008 at 5:00am
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I'm sorry we frightened you Allison, but we're so used to discussing side effects and other issues that have crept up, we do forget that there are women who are just starting out. Look at it this way, isn't it already positive that were still here to discuss what we went through? We've beaten it, and so will you. We all have those up and down days and basically, it's healthy to have them. If you wouldnd't be scared, you wouldn't have a fighting spirit and you'd be worse off. I wollop in self-pity and so does everyone else with the same condition. I ask 'why me' and so do all the women here. But when we're done, we say 'cancer will not kill me, I won't allow it.' You look at your girls and say 'cancer will not take away my joy seing them, I will fight tooth and nail and not give in to the intruder'. I kept telling myself, and still do "cancer will not kill me, when I'm around 105 and not too steady on my feet nymore, I might get run over by the city bus, but cancer will not kill me." When did you start your treatment? Are there any side effect from the chemo you've not anticipated and have a hard time coping with? Let us know so we can help you work through it all.------------- August 2007, Stage III, 5+ cm, Grade 4F, 4 FAC with booster after 4 days, 12 weekly Taxol, radical mastectomy, 36 radiation treatments. Houston, Texas |
Posted By: sibu
Date Posted: Nov 15 2008 at 5:04am
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Welcome Alison! Glad you found us. You are in good company. We all have days where we sit and cry why me! We can all be encouraged that the majority of women who have tnbc, are out there living full lives and not on these boards. I would guess that we are more likely to reach out for support during down times, when we are in a frightened state. I have 3 children, too, and indeed they are the motivation to keep going some days. Hugs to you and yours, 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 |
Posted By: Nancy
Date Posted: Nov 15 2008 at 7:20am
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Dear Alison,
Your tumor is the same size as my daughter Lori's. However, they found another one behind the nipple after an MRI. Lori's feelings were the same as yours....why me....how me? She could not function for at least 5-6 weeks after dx.
TNBC responds very well to chemo Alison, as all the gals here will tell you. Lori's stats are at the botom of my post. We have tons of info here on the site, and Pam (trip2) posts new info every day. Lori had the BRCA testing and she is negative, However,what they are finding is TNBC gals may have other mutations. We have a topic on the "TNBC Talk" forum titled "First diagnosis received-Lumpectomy or Mastectomy", and you might want to read the posts there. The more info you have...the better decisions you will make.
We have gals on the site who are 7, 10, 14, 17 20 years out from dx. You are going to have the support of some incredibly intelligent, caring and loving women as you begin this journey.
I have 2 links to articles which you may want to read as to the Taxol/Taxotere.
http://www.medicinenet.com/script/main/art.asp?articlekey=88729 - http://www.medicinenet.com/script/main/art.asp?articlekey=88729
http://www.breastcancer.org/treatment/chemotherapy/new_research/20080417c.jsp - http://www.breastcancer.org/treatment/chemotherapy/new_research/20080417c.jsp
You also will want to have your D levels checked. This is very important. Here is the link for the correct test.
http://articles.mercola.com/sites/articles/archive/2008/09/20/warning-are-your-vitamin-d-test-results-valid.aspx?source=nl - http://articles.mercola.com/sites/articles/archive/2008/09/20/warning-are-your-vitamin-d-test-results-valid.aspx?source=nl
I want to give you some directions for the resources on the site, which are from the gals on the site. They are for your daily life.
At the top of every page you are on, are the words..about tnbc...about us...tnbc events..forums.
Please click on forums and then click on "TNBC News, Resources and Tips".
Then go to page 11, and click on "Directions on how to access our many resources". There is a
to the left of it. This will tell you exactly how to retrieve the information. There is another one for directions for adding your signature also. You may want to print these out to read. The chemo and rad tips, after surgery tips, and books to read are also on that forum, and are always on the last page. You have definitely come to the right place Alison,
and we will be here for you every day that you need us...just ask.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 |
Posted By: Alison41
Date Posted: Nov 15 2008 at 7:59am
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Thanks Anna sorry I did not mean that this website scared me it was others this one seems very positive and I shall be keeping up to date.
The first bout of chemo was not as bad as I thought no sickness at all but I did take the anti sickness drugs just in case.
The type is FEC combination of 3 drugs after 3 sessions they are going to do another MRI to see if the Tumor is shrinking or not.
I would like to keep in contact.
Thanks for the support.
Ali
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Posted By: Alison41
Date Posted: Nov 15 2008 at 8:01am
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Hi Nancy
What are the D levels not been asked about this one?
Ali
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Posted By: trip2
Date Posted: Nov 15 2008 at 11:59am
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Hello Alison and welcome.
Please just jump in with any questions or comments anytime.
As far as genetic testing the best thing is for you to talk to a certified genetic counselor. You can learn about this on http://www.facingourrisk.org - http://www.facingourrisk.org
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Nov 15 2008 at 3:34pm
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Ali- Keep taking those anti-nausea meds...it doesn't hurt to have them on board. I believe many of ladies would agree to take the meds before, after and during treatments to avoid the side effects or at least curb the side effects.
I find out on Monday what, when, how the txs for me will be.
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 |
Posted By: szabpan
Date Posted: Nov 16 2008 at 6:24am
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Dear Alison, I received six rounds of chemo (FEC) six years ago. But... you have to know taht chemos have accumulative effects: the most you receive the strongest you will feel the side effects. After the first I thought "why everybody said it was awfull". After the fifth I already knew the why.
Be strong; stronger than our common enemy
 .Hugs to you: Anna (another, from Hungary)
------------- dx: 2002 July; bilat. mastect.; 6 chemos (FEC protocol) without irrad.; 0/13 nodes pos.; BRCA1-2 neg.; Avemar for 3 years. |