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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: Nov 05 2009 at 1:19pm
Dear DonnaL,
 
While I cannot answer your questions as to the trial I can welcome you to the site. Clap I will also send you a private message with my email, so that I can forward the directions for accessing all the resources we have here on the site.
 
The amazing women and men on the site will provide you with all the love, compassion and support you will need for this unplanned journey. It is my daughter Lori who was dx in June of 2007 with TNBC, and they helped me help her through that very difficult time.
 
Lori had opinions from 3 oncologists before she made the final decision as to exactly what treatments she would take, and I know that most of the members will encourage you to seek more than one opinion also.
 
So...again welcome!!
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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dawnmarie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dawnmarie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 4:52pm
Hi everyone....I am new to this site. I had a lumpectomy on my left breast on 10/26/09 and just had follow up with surgeon this last Thursday who recommends a double mastectomy. Reason for the double is that I also have a lump in my right breast which seems to be growing rapidly now. All I have at this point is my pathology report that shows I am a triple negative. Doctor recommends no constructive surgery during the mastectomy until we know where I stand. Have any of you ever had a double mastectomy without having to go thru the chemo process?  He said we would have to see if the margins are clear following surgery. I think I am dreading the thought of chemo more then the surgery itself.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 5:14pm
Hi Dawn Marie,
 
HAve you seen an onocologist?  Trip Neg ususally responds better to chemo than other BC.   I was told that (I will be having chemo before my surgery to shrink my tumor) the chemo wil kill any "mircoscopic" cancer cells that might have travelled away from the breast.  All my scans were clear, so ther is no mets, bit I feel good knowing that any little bits that mght have travelled away will be killed w/ the chemo, since Trip Neg has a higher rate of spreading. I have only heard that you don't need radiation with a mastectomy, nothing about not needing chemo.  Did you ever get a 2nd opinion?  I spoke w/ 2 surgeons and 2 oncs, and they all recommended the same course of treatment, so that made me feel more secure.  Keep us posted!!  Laurie
I am healing!
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dawnmarie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dawnmarie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 5:28pm

I have not seen oncologist...so far just the surgeon who is recommending the double mastectomy first and then follow up with chemo if necessary. I have Blue Shield HMO and know I have to go thru the process of authorization but so far the surgeon hasn't said anything about that.

I am following up with him this week prior to surgery. what kind of questions should I be asking? I am still in a state of shock with all this, crying, depression over losing my double D breasts ...the thought of returning to work knowing everyone will be looking. What do I need to buy before the surgery to appear normal to go back to work???? doctor said I would be out approx. one week.

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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 5:29pm
Dawnmarie,

I had a bilateral mastectomy, Stage 1, clear margins with no node involvement (0/5 nodes tested).  Because I had TNBC, my onc told me chemo was the standard course of treatment.  Without chemo, she said I had a 25% chance of recurrence, with chemo about 13%.  With TNBC, there is a greater chance the ER+ types that a stray cell could have escaped throught the lymphatic or vascular system.  Chemo sucks, but it seems the only insurance policy we have since other adjuvant therapies, like tamoxifen, aren't available to us.  Chemo isn't fun, but you can get through it.  There are many on this site that can help you along the way, especially with side effects.  Did they tell you what chemo regimen they are considering?

Donna

PS:  You can post your details in your signature line so that others know what dx, stage, size, tx, etc.  Just go to your profile and edit your "signature".
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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dawnmarie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dawnmarie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 5:50pm
they haven't discussed the chemo with me yet .... so far just the double mastectomy with possible chemo follow up. all I have at this point is my pathology report on left breast mass that was removed by lumpectomy: size of invasive tumor 1.8 x 1.5 x 1.0 Histologic type: Invasive carcinoma Histologic grade: High grade, ER, PR & HER-2/neu Negative.
the one in my right breast doesn't feel as large but I have decided not to wait and have that looked into because it does seem to be growing. At this point I want it all removed quickly first & foremost. I assume my surgeon will refer me to oncologist following my surgery.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 5:55pm
Dawnmarie,

I didn't have any problems with the insurance company paying for the bilateral.  Most insurance companies will pay for this, especially when they know you're TN.  When your surgeon mentioned you'd be out of work for a week, I'd question that statement.  It was almost 2 weeks before I got all the drain tubes out.  I was able to work from home during my recovery and chemo, but even if I only had the mastectomy, I'd say I would have been out for at least a month (4 to 6 weeks) before returning to work. 

Will you be having tissue expanders with the expansion implants placed in during the surgery?  With these you're breasts will look somewhat normal, but not as large as your normal breasts.  Each saline fill will expand the temporary implants.  If you're not having this done at the time of surgery, you can always purchase a special mastectomy bra where you can place a prophylactic implant inside the bra or camisole.  My husband's aunt had a mastectomy with no reconstruction and she purchased them to place inside her specialty bra.  She's very active and happy with her new look. 

I was never bothered about people staring at me knowing I had a mastectomy.  I was always upfront with them and even joked that I was mad at my breasts since they tried to kill me.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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dawnmarie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dawnmarie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 6:14pm
lol thanks for that humor about the breasts....
My surgeon advises against reconstruction during the masectomy until we know whether or not I will be needing further treatment. Implants I guess tend to get in the way of things.
He said I will have surgery with drains and stay overnight....he made it sound like the drains would be removed the following day....is that not the case???
I am a single 50 yr old woman and work full time on an hourly basis. I do not have sick time but I do have about 3 weeks vacation time saved up. I'm not the type that likes to stay home when sick as it tends to only make me feel worse..so I am hoping for just that one week downtime.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 6:29pm
Dawnmarie,

My ps placed 3 drain tubes on each side.  I know some women only have 2 on each side.  The end of the drain tube reminded me of little grenades.  I'm sorry, but you have to keep a sense of humor about all of this.   You will need to measure the drainage and record the total each day.  Once it gets below a certain level, the drain tube is removed.  Will you be having someone stay with you when you come home from surgery?  I'd seriously recommend it.  Not only do you have the drain tubes to contend with, but you'll be on pain medicine.  Keep a log or diary of all the medicines you take throughout the day, plus your temperature.  It's very easy when you're on narcotics to forget when you took your last meds.  My DH was very good about checking the drain tubes and "stretching" the tubes several times a day to help the fluid drain.  I don't think I could have done it the first week by myself.  I never had surgery before this (except tonsils out when I was 5) and very squeemish.   When I took a shower we used a lanyard that went around my neck and had all the pins for the tubes attached to the necklace.  It made it easy to keep them out of the way. 
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 6:30pm
Dawnmarie-
 
I have an HMO and most of them want you to get a 2nd opinion, and any good doctor should be more than ok with that.  I would do that before you schedule the next surgery.  Breat surgery is not a medical emergency, you have time to get 2nd opinions and make the decision that feels the best to you.  It will help to put your mind at ease.  You can choose your own onc, and ask your primary care doc to refer you there.  Ask if there are any clinical trials that they have available to you.  YOu can also look that up yourself on many cancer websites.  Take charge of your treatment plan, it will help you feel more in control.  Make sure that you give yourself plenty of time to heal after any procedure.  You need to be a warrior now, Give yourself time to mourn, but keep yourself stong and positive, and be your own advocate.  Let people help you when they offer.  Put yourslef first.  You can get throught this!! 
Laurie
I am healing!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 6:32pm
Sorry about the typos
I am healing!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dawnmarie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 7:13pm

At this point I am very anxious and scared as I am watching the lump in my right breast grow. I trust my surgeon at this point and knows he will do whats best for me. I just don't want to waste anymore time with this ticking bomb in me. I am preparing a list to take with me on Thursday of questions to ask.....any input on this would be great.

I don't have anyone staying with me after surgery though I suppose I could but following my lumpectomy I felt better alone.....time to cry if I wanted and time to just sleep if thats what I wanted to do.  Sometimes I just don't want to hear people talk......I enjoy living alone and having that time and then there are times when I want to speak to people about this but they just don't understand and say well its only your breats......but my breast are double D's and a very Big part of me which they don't understand.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dawnmarie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 7:15pm

P.S. my boss was so upset that I got the runaround las time that he himself has called the insurance company and demanded that there would be no further hassles and/or wait time where I was concerned. So my account has been red flagged for all  go aheads

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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 7:29pm

Dawnmarie,

Do whatever makes you feel best!!  We will always support you.  I am glad that your boss stood up for you with your insurance, that is one more thing that you will not have to worry about!!  I am glad that you have a doctor that you feel good about.  Keep coming here for support.  Also I would recommend you visit the Network of Strength website.  They have a 24 hour help line that you can call anytime and they will match you with someone with a similar dx and situation that has been through what you have been through.  There are lots of great women on that website that have helped me alot in my darkest moments.  Just remember to stay positive.
 
Laurie
 
I am healing!
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dawnmarie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dawnmarie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 8:04pm
Thank you Laurie  :) I trully appreciate all your help and words of wisdom...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LaurieB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2009 at 8:39pm
Here are some questions posted on the Network of Strength website
 
Be sure to identify your needs before communicating them to your doctor and his or her health care team. Below are questions to consider asking yourself before your next appointment.
  • How much information do I want to be told about my diagnosis or health status?

  • How do I want my doctors to communicate with me about these issues (for example, “Don’t beat around the bush” or “With tender loving care”)?

  • Under what conditions do I need to talk with my doctors (quiet, uninterrupted, with a tape recorder or a family member present to capture information)?

  • What is most important when I consider my treatment options (for example, living longer, minimizing side effects, avoiding pain)?

  • Is there anything I can do to make communication with my doctors easier?

The following questions are ones to consider asking your doctor:

  • Why do you recommend this treatment or procedure?

  • How might it help me?

  • What are the possible risks?

  • What are the side effects? Which ones require immediate medical attention?

  • How long does it take? How often do I receive it?  How is it given?

  • Are there more or less aggressive options available?

  • What are the symptoms that usually develop with my type of cancer diagnosis, and how are they treated?

  • How will each of these options affect my quality of life? Will I be able to do the things I enjoy? Can I work? Take care of my kids? Go on vacation?

  • What lifestyle changes would you recommend I consider during my treatment?

  • How and when will the effectiveness of this treatment be evaluated?

  • How do you like to make decisions?

  • How will you present information to me?

  • How can I reach you in an emergency?

  • What happens if I choose to receive no treatment?

Treatment (Oncologist):

  • Will you obtain and review with me the treatment information on my type and stage of cancer from the National Cancer Institute's Physicians Data Query (PDQ) program?
  • How long do I have to make a decision on a course of treatment?
  • What test results did you use to base your treatment recommendation? Are there other tests that can help refine our treatment options?
  • If I consent to this treatment what are the chances of recurrence?
  • Am I a good candidate for any clinical trials?
  • If I feel I need to either reduce the dosage or stop chemotherapy what impact does that have on my recurrence and survival rate?
  • What will the treatments cost me? Does my insurance cover the treatments you recommend?
  • What tests will need to be done while I'm undergoing treatment? How frequently will these tests need to be performed? When will they be done? What are you looking for with each test?
  • After I've completed treatment, can I expect the cancer to be completely gone?
  • How long will each chemotherapy infusion take? Can I drive myself to and from each treatment?
  • What should I wear to chemotherapy treatment? Can someone be with me during the treatment?


Treatment (Surgeon):

  • What kind of surgery will I have? How long does the surgery take? Exactly what will be done and/or removed in the operation?
  • What are my options regarding breast reconstruction? What will it cost me? Will my insurance cover reconstruction?
  • How long will I be in the hospital? Can I drive myself to and from the hospital?
  • Why do you recommend this procedure? What are the chances of success? What is a successful treatment? What are the risks associated with this surgery? Are there non-surgical options?
  • Will I have normal sensation in my breasts after treatment?
  • How long do I have to wait for the surgery results? Who will give them to me? May I have it in writing in addition to verbally? What kind of breast cancer do I have? Has the cancer spread to any lymph nodes or other organs?
  • How long does it take for a full recovery? What is meant by "full recovery"? When can I return to work? What side effects should I expect?
  • What do the terms "clean margins", "lymph node involvement", and "pathology report" mean?
  • What is "lymphedema"? Is there a way to prevent lymphedema?


Treatment (Radiation Oncologist):

  • What is the goal of the radiation treatment you're recommending? Are you working toward reducing the tumor or eradicating it?
  • What should I expect to feel during and after treatment? Are there activities I should avoid either before or after radiation treatments?
  • How long is each treatment? How many treatments will I need? How often will the treatments be given? Can I drive myself to and from treatments?
  • What should I wear to a radiation treatment? Can someone be with me during the treatment?
I am healing!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote maryjahn Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2009 at 3:30am
California state disability covers you for a year to take time off of work and you would receive 2/3 pay--if you were to lose your insurance because of this you are covered 100% by MediCal--they will also take up the difference of what insurance doesn't pay if you choose to continue to work.  I felt that the stress of my job would interfere with my recovery and opted to go on medical leave.  I had no vacation time, sick pay or insurance though I had a very well established career.

I week is questionable so i would get 2nd & third opinions--California has the best care and hospitals in the nation--you might consider City of Hope or Huntington Hospital (a non profit) in Pasadena and Santa Monica has amazing facilities and I hear Cedars Sinai is also good.  You don't say exactly where you are in S. California, but these are the best and state of the art for breast cancer and well may be worth the drive.  You have options for people driving you to and from your home (there are many free services--ask your dr) but you want to have some home care of a very close friend.  You have to have the tubes drained and if you have chemo you are going to need help!

Best of luck to you--I have my final report on the 12th and I will know the final details of my mastectomy.  It really angers me that people think having your breasts cut off is like getting your hair cut off--it is a body part and I am very fond of mine and I am not looking forward to losing them. 

Maryjahn
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2009 at 6:26am
LaurieB,
Welcome to this great place. The questions you posted are wonderful. Maybe you add them to the Resource forum. This would be great for all newly diagnosed. I wish I had them when I started this journey.
I am at a place now that I feel the need to discuss with my surgeon and onc their not sharing with me the diagnosis of TNBC. They told me about er, pr, her neg stuff but didn't give it a name. I found that out by myself.
I am not a confrontational type person and am not looking forward to talking with them. I feel like they will put me on the defensive. I don't want that.
My husband says I look for things to worry about and I guess he's right but I think it was my right not know or anyone's right to know what they are dealing with and to be given all the info so that all the right decisions are theirs no matter what they are.
Tomorrow I am going to attend my b/c support meeting. I live in a small community and I don't think I'm going to find many tnbc patients but I will try. I would love to start a support group for just us. Our dx is so different from the "normal" b/c.
I too, am so tired of people saying that your lucky it's just breast cancer. That can be cured. It's not their fault but someone needs to speak out and let people know that IBC and TNBC is not "just" breast cancer. No cancer is "just" anything. It's all ugly.
I seem to have jumped up on my soap box, so I will step down and hush...LOL
Have a wonderful Lord's day.
Love, Hugs and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2009 at 5:40pm
Hi DawnMarie and welcome.
 
My daughter was diagnosed over 2 yrs ago and she had a single mastectomy.  Then after her chemo and rads she had the other breast removed and had recon so you can do that part later on.
 
I too would suggest a second opinion.
I personally had a good surgeon both times I was diagnosed but he was so wrong in his knowledge of bc and what I might face for treatment.  A surgeon's focus is surgery.  Once you meet your Oncologist with your pathology in front of them then they can tell you what treatment if any you might need.
 
You can buy post mastectomy bras which are quite nice.  They come with little puffies that you can slide in pockets.  They also have pockets for the drain bulbs which can be a real nuisance.
 
 
 
 
There are several places if you google for these camisoles.
 
You want to gather up loose fitting tops, big t-shirts, loose button shirts, silky camisoles are nice.  Your chest will be touchy so you won't want tight clothing for awhile plus you will the bulbs to deal with under your shirt.
 
It would be good if you could atleast have someone check in on you everyday.  Maybe bring some supper or run errands for you so that you can rest and heal.
 
Also do you have any cancer in your family?  You should see a Certified Genetic Counselor to see if you possibly should be checked for the BRCA 1/2 mutations.  Many BRCA 1 gals have TNBC.
 
Best wishes and let us know how it comes along for you.
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katherine Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2009 at 10:40am
Hello to all and thank you for creating and updating this site; it is a relief to have found it.
 
It has been a strange 10 day journey...  I visited my GP last Wendesday to ask about a lump and have already had a biopsy and all of the associated tests.  My surgery is scheduled for this Friday and, while I am thrilled that everything is happening so quickly, I am at a loss for information.  Honestly, I have not had time to take this all in much less find out what the hell I'm up against!
 
I found that I am:
*Stage 1 with possible node involvement, 11 mm
*Grade 3
*Triple Negative
*CK576 Negative
*EGFR Positive
 
Also,
43 years old
Mother of two boys, both of whom I breastfed for 1 full year
Healthy, active and not overweight
 
Proposed lumpectomy and node investigation.
 
One of the biggest problems I have is that I am an American living in Switzerland for my husband's work.  All of the info I have received is in French and I am not proficient enough to understand any of it!  While many of the doctors speak very good English, the support staff does not -- and why should they?  This is their country!  But it makes things VERY difficult for me.
 
I have so many questions but the ones which spring to mind first are:
 
1.   Mastectomy vs. lumpectomy -- HELP!!!!!!!!!
2.  What trials should I ask for?  Names of drugs?
3.  What am I REALLY looking at?
4.  Does anyone have any contacts in Switzerland?
5.  Is there a standard formulae for chemo and radiation for our type of cancer?
 
Again, thank you for being here.  It is SUCH a relief to know that I am not alone...
 
With love and hope,
Katherine
 
Diagnosed 7 November 2009 (age 42) with grade 3 TN IDC (2 cm) and TN DCIS. Two lumpectomies (for clear margins), 3x FEC, 3x taxotere and god knows how many rads.
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