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WillowMother

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Re:Introduce Yourself - Monday, April 12, 2010 10:47 AM
Hello Rosepetal,

Welcome to the group that no one wants to join.  This group has helped me so much with questions I've had and just the knowing that I'm not alone on this journey.  I too had a very loving and supportive family but sometimes you need to talk to and listen to people who know exactly what you are going through.  We have all been in your shoes, getting the diagnosis and then all the information and trying to make decisions, it's so hard. What I can say is once you have your tests and talk to the oncologist you will have a plan and hopefully some options.  Take someone with you to the doctor appointments to help receive all the information, it can be a lot to take in.  If you feel comfortable with the doctors great, if not get a second opinion.  Once you have all the information the decisions might be easier to make.  You can then read/ask others on this board their experiences.
It got easier for me once I had a plan and moved forward with it.  It is doable.  I know you are scared,  My thoughts and prayers go out to you.  Stay in touch, let us know how things are going.  (((Hugs)))
<message edited by WillowMother on Monday, April 12, 2010 4:46 PM>
~Willow 49         
9/3/09 IDC Stage III 6cm. Nodes Positive ER+PR- HERs2 +
24wks Taxol/Herceptin/FEC                 
3/2010 Surgery Lumpectomy & Node dissection          
Rads x33  & Herceptin
11/15/12 Local Recurrence/Unilateral Mastectomy
DCIS & IDC HER2+
12/19/12 Beginning Navelbine & Herceptin      


Tricia Keegan

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Re:Introduce Yourself - Monday, April 12, 2010 4:42 PM
Hi Rosepetal,

Have you had a biopsy???

Bring some one with you for appts and we can help with any questions you may have.  You won't know the full picture until you get a patholgy report after surgery but read through the surgery/recon forums where you'll get differnet views on what to choose.

The early weeks are confusing but please know it will all get easier for you, and we're all here for you:)
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
sharonma

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Re:Introduce Yourself - Monday, April 12, 2010 4:48 PM
Hi Rose,
The bad thing is you had to join Komen, the good thing is you came to Komen.  We allknow that feeling of being recently diagnosed.  kind of like being hit with a brick.
Willow gave good advice to take someone with you to all you appointments to take notes and listen with a second set of ears. There is so much to take in and digest.  And don't hesitate to get a second opinion from either the surgeon (preferably a breast surgeon) or oncologist.  You need to feel comfortable and sure about your treatment decisions.
And most of all, please come here to get support, advice, and encouragement.  We are here for you!
Sharon 
dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  
lilstitch

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diagnosis: Invasive Ductal - well differentiated - Monday, April 12, 2010 5:02 PM
I saw the breast surgeon this afternoon and to my 'relief', was told that this was a non-aggressive cancer that will be removed after genetic testing and counseling are completed.
workmother

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Re:diagnosis: Invasive Ductal - well differentiated - Friday, April 16, 2010 3:33 PM
Hi. Hope I'm doing this right to post a message. I was told on April 1st that I have breast cancer. That was a little over two weeks ago. It is Invasive Ductal, Estrogen positive, Progestrone borderline, HER2 status negative. I was told by the surgeon who will be doing my lumpectomy that it is Stage I. All of those things are very optimistic from what I understand. Although no one has said it, I think it is grade 3. Figured that out myself from the words "poorly differentiated" on my pathology report and reading things on the internet. Grade 3 seems to be aggressive, so that has me scared - not that I'm not scared already!! I am scheduled for surgery next Tuesday. So happy they can do it so soon but I'm terrified; of the surgery itself and the irrational fear that I won't wake up, of the sentinal node biopsy and if I'll wake up with my lymph nodes removed and of them getting clear margins. Not to mention what treatments may lie ahead.

I am happily maried for 20 years this Sept. I have a 15 year old daughter and a 12 year old son. I feel like I'm stuck in a bad dream every day. Then I actually feel guilty that I'm so scared when I read about other people who have much worse diagnosis then me. I'm overwhelmed by so many feelings. I decided toot keep this secret, so I told people I work with. I'm a teachers aide at a school. I also told my friends and told them it's not a secret. I know people mean well but I have people telling me they are bringing me over dinners next week and leaving me plants on my doorstep. I'm not dying for goodness sake!! It's all too much. Thanks for listening...
Tricia Keegan

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Re:diagnosis: Invasive Ductal - well differentiated - Friday, April 16, 2010 5:27 PM
Hi Workmother,

Hi & welcome,

I'd like to reassure you a little on a few things you mentioned.   I was stage 2 but her2 positive which is very aggressive...I'm doing great almost five years later.  We have a lady here who had 22 lymph nodes positive 23 years ago and is still doing great and never had a recurrance:)     Don't let grades or numbers bring you down, these are stat guidlines and we're all individuals and respond differntly to treatment.   
I also had a lumpectomy and nodes removed but it really was'nt that bad at all so hope you'll relax a little on that.  Check out the surgery/recon forum and you'll get lots of tips from others who have gone though this. 
You have every right to be scared as cancer is a scary diagnosis for anyone but you'll see from the posts here that it's also do-able and you can come out the other side and live well and put this behind you.  Take one day at a time and stick to reputable sites on the internet for research like komen and www.breastcancer.org
If you go to the welcome forum above this one you'll see an explanation of a lot of the terms you'll see on your path report and this may help you too:)
One thing, do take what help is offered or needed. People want to help but not sure how to, by cooking for you they're showing their support while you're going though a rough time....not because they think you're dying lol, but can understand why you'd say that!!!
Many of us who had chemo were so grateful for this during chemo but if you don't need it just thank people and say you'll be sure to call on them for help if you do!
Good luck with the surgery and if you post your date on the surgery forum you'll get many people praying and wishing you well.  xx
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
KarinLee

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Re:diagnosis: Invasive Ductal - well differentiated - Tuesday, April 20, 2010 9:15 AM
Hi All...I hope I'm doing this post right to introduce myself.  My name is Karin Arthur and I live in Oak Harbor, Washington. I just turned 50 in January and I swore that this year was going to be the start of a wonderful, healthy and happy decade for me and my husband Ron.  Turns out, I didn't get a good birthday present.  Back in 07, a mammo showed microcalcifications that I was not aware of until my annual (yes I was a very bad girl and didn't have one for 3 yrs) until 12/09.  Had I known, I would not have been tardy.  When I got the dx from my first biopsy of dcis, grade 0; when the surgeon gave the dx I remember him saying grade 0 and non-invasive and benign, best kind to have, 100% survival rate over and over a few times.  It didn't sound bad at all and then he started saying surgery, radiation and tamoxifen. I thought to myself, ok didn't sound bad but the treatment is like I really have cancer! Then of course I hit the internet to try and educate myself. That's when the proverbial brick hit me.  I do have cancer.  I had a pity party for a couple of days, cried alot and then decided I had to take myself by the bootstraps and get this thing done.  IRon has been wonderful and so supportive.  I researched for the best BS I could find that my insurance would cover (Thank GOD I have insurance!).  I can't image others without insurance going through this! I was advised to go to a big city, research hospital with BC specialists which is Seattle.  I thought it was overkill with a low grade dcis but turns out good thing I did.  I decided on Swedish and have hooked up with a great interactive team. The original plan was to do lumpectomy & breast reduction (yes I've got the girls:) radiation and tamoxifen. BS tested for ER and came back positive. Then the radiation oncologists got ahold of me and life has not been the same.  As I sit here holding my sore pin cushioned breasts, I swear biopsies were designed and used in ancient torture chambers!! Torture aside, looks like they're afraid that I have multiple hyperplasia/dcis and dcis areas in the RB and a new dx of dcis in the LB. I'm waiting to hear results on the last two MRI guided biopsies. Does anyone really know what they hyperplasia/dcis is?  I havn't been able to find out much on the internet and most of it is not in lay terms. I've gotten pretty good at gleaning info from technical stuff but this one has me stumped on "what does that mean to me."  Sooo, looks like this may change my surgical options.  I decided early into this that I am not attached to my girls and if I have to do a BLM and reconstruction, that's ok with me.  The reduction would have improved the effectiveness of the radiation and helped my back/neck/shoulders.  But with the BLM  hopefully I won't have to have radiation, and less worry with recurrance, and I really really don't want radiation.  Also, it would be nice to have them back up where they used to be...lol! We'll see.  I meet with the BS again 4/21 to replan. Also, I had a conversation with my younger sister yesterday.  She found a pea sized lump that they ultrasounded and turns out it is a cyst; however, they have found dcis granules in one breast. They are going to follow up with her in six months.  Do any of you think she should have an immediate biopsy? Just when I thought I had no history of BC in the family!!  I have been visiting the forums and learning alot from your conversations.  Thank you all for listening and I hope to join more conversations.
Karin Arthur
Karin A
Dx: RB three areas in two quadrants with Hyperplasia/DCIS, Grade 0, ER/PR+.  BRCA I & II gene negative. Bilat Mast w/immed reconstruction 6/15/10.
Tricia Keegan

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Re:diagnosis: Invasive Ductal - well differentiated - Wednesday, April 21, 2010 7:22 AM
Hi karin and welcome,

I'm sorry for your diagnosis but glad to know you have a great circle of support to help you.

I think hyperplasia means cells that may turn into dcis but for any reliable info go to www.breastcancer.org and just type the word in the search box at the top of the page.  Most of the info is explained simply there.

My best wishes to you and please keep us posted on how you get on:)
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
KarinLee

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Re:diagnosis: Invasive Ductal - well differentiated - Thursday, April 22, 2010 10:53 AM
Hi Tricia.  Thank you so much for your response.  It really is comforting to know someone else is out there that understands this stuff mentally and emotionally. 

I found out that the LB MR biopsy was benign, but RB had 3rd area with DCIS. Since I now have three separate areas in two quadrants, she's recommending a Mast on RB and reconstrux because half my B would be gone anyway and redux on LB.  She says that Bilat Masts with reconstrux is not always a guarantee of symmetry anyway. The quandry is and decision to be made is if redux, why not Mast on LB to reduce reocurrance?  She says the research says life expectancy is no different with redux vs Mast.  Bilat Mast is a personal choice and she would support my decision. She gave me an article to read which I hope I can scan and post here somewhere.   With my sister's info, we decided to test for the BRCA gene. It'll be the proverbial coin toss, negative = redux, positive = mast and hopefully a marker for my sisters and neices. I say I'm not worried about losing my breasts but I expect at some point I will have moments. I still feel like I'm on auto pilot, going through the motions of getting through this. I have breakdowns at the oddest moments like when I'm driving home from the grocery store and looking down and thinking my RB won't be there in six weeks and I just start bawling by myself in the car.  After I cry I do feel better.  I go for my gene blood test on monday and it will take 3-4 weeks for the results. I'm expecting my surgery to be around the first week of June.

I did have a talk with the RadOnc about the hyperplasia and he explained it to me.  In the ducts, you have two distinct cellular layers that compose the duct. Hyperplasia is where there are more cellular layers which is "atypical" and not the norm. Hyperplasia in itself is b9, however along with calcifications it's a slam dunk that it's cancer.  The path report said   "Foci of atypical ductal hperplasia with rare foci with changes compatible with ductal carcinoma in-situ, low to Intermediate nuclear grade, cribriform type, with scant possible necrosis and rare small calcifications. No invasive carcinoma"  ...(Thank God!)

I have been really bad about posting of messages, even on FB.  I think I'm still in the technological Blah Blah stage which I know I'll get through.  Sometimes I get so tired of just thinking about BC but I find this site so valuable for me I will try to post more. I hope someone will learn something from me just as I have learned from others.

Thank you Tricia!
Karin

P.S.....and I know that there are lurkers out there just like me before I jumped in.  Please don't hesitate!!


Karin A
Dx: RB three areas in two quadrants with Hyperplasia/DCIS, Grade 0, ER/PR+.  BRCA I & II gene negative. Bilat Mast w/immed reconstruction 6/15/10.
Tricia Keegan

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Re:diagnosis: Invasive Ductal - well differentiated - Thursday, April 22, 2010 1:12 PM
Thanks for the update karin, I know you have many tough choices and decisions to be made. 
If you haven't checked out the recon/surgery forum here , take a look as it may give you an idea of what to expect and what others are feeling about  bilat mast etc....
It's good news no invasive was found thank Goodness:)
Anyway, good luck in making your decison and hoping the gene test is negative!! x
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
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