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tnbcsucks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tnbcsucks Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 8:59am
Good morning ladies, I just completed my radiaiton a few weeks ago and my radiolgist prescribed silvadene...used a lot on burns as well as radiation burn.  It worked wonderfully. Also try to get some air to it...sounds silly  but I would lay on the couch and hold it up when no one was around so it would air out!  The things we endure during this process!!   After a few days the raw skin started to heal, so I was about a week in big shirts  :)
 
Keep up the positive thoughts!
TNBC DX April, 2010,Lumpectomy May 3.5cm with clear nodes,Stage 2, Grade III Started Chemo on June 7: 4 A/C every other week and then 12 weeks of Taxol. followed by 6 weeks of radiation.
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 10:12am
Hi there...
 
I don't get around all the boards like I should and sometimes I just need to catch up.
If you don't mind my asking, what is your given name? It's so easy to keep up with.
I know you've been here since June and I'm ashamed to say this might be the first message I've left for you. Please forgive.
It sounds like you've been doing pretty good on the tx side except for radiation burn. Fortunately I've never had that problem. I've tanned but didn't burn.
I also, want to take this opportunity to invite you to visit the Spiritual Support thread if that is something you might be interested in. If you have any trouble locating it just let  me know and I would be happy to direct you. I hope you have a great day..
Love 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 tnbcsucks Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 10:28am
Hi Carol, my name is Mary Jo.  Thanks for responding!
TNBC DX April, 2010,Lumpectomy May 3.5cm with clear nodes,Stage 2, Grade III Started Chemo on June 7: 4 A/C every other week and then 12 weeks of Taxol. followed by 6 weeks of radiation.
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 10:32am
Welcome Mary Jo...
 
It just seems to make us all a little closer when on a first name basis..
 
 
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 guygirl Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 11:17am
Carol, my name is Ellen and I live in Southern Maryland.
Age 50 DX: 6/3/10 IDC, Stg 1A Grd 3 1.9cm, KI-67 85%, lump. w/SNB, clear margins, lymph node 0/1, 4 cycles A/C (dose dense) every 2 wks, 4 cycles Taxol(dose dense) every 2 wks, 33 rads, BRCA 1/2 neg.
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 2:59pm
Hi Ellen,
I see that you and I have the same stats...except that I am 2A my tumor was 2cm. We also had the same treatment.
How are you doing now?
Have I invited you to join us on the Spiritual Support thread? If not, stop by...we a daily devotional and several prayer warriors that post there as well as on other threads.
Have a good day...
Love 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 illpraisehim Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 7:36pm
Good Evening ladies, I stumbled on this site and am so very happy to have found it. My name is Sheila, I am 38, wife, mother,daughter, sister and friend and I was just diagnosed with TNBC. As you all know, and have experienced... Hearing those words were mind blowing. I am amazed at all of your stories. (I surfed through the posts as much as I could). And I have to tell you all, the tips you have posted will definetly help me as I begin my journey. I had my first ever mammogram the day before thanksgiving as a result of feeling extreme sensitivity in my nipple area and heaviness in my left breast. As I told the tech about my "symptoms" she wanted me to wait until the next day so that I could have the mammo done while the doctor was there. During my mammogram, I felt in my being that something just was not right...The tech was nurturing and kept trying to reassure me that "I had nothing to worry about". Well, how wrong she was. Next, she took the slides was gone for about 25 minutes, comes back and tells me that I now need to do a sonogram and they are waiting to hear from my doctor so that I could have a biopsy ASAP. You all know the terror I felt!!! Well, the day after Thanksgiving, while everyone else is enjoying their grits and turkey first thing in the morning, I am having the biopsy procedure done. The mammogram showed that my lymphnodes were enlarged as well... I got the phone call Monday after Thanksgiving that I infact had cancer... I think I am still in denial. I think somebody made a mistake, because this can't be right! I am having crazy thoughts.... thinking my diagnosis was a death sentence. I DO NOT want to lose my life to this disease. As I read your testimonies, your tips, your strength and determination gives me hope. I haven't begun any treatments yet. I am scheduled to have my port placed next week. I am extremely unsure about if they are taking too long, is this spreading while we wait??? Soooo many unanswered questions. They were trying to figure if it has spread as there is a lesion on my spine. And because of its location, it may not be able to be biopsied. But then there is also that thought in the back of my head... Is it? Because as the first Oncologost said, if it is..it changes the treatment. I have now left him and started as a patient with Memorial Sloan Kettering Cancer Center. I feel scared. I can't sleep. I feel helpless. I feel powerless. Thank God feelings aren't fact! I know you have all dealt with all of the emotions I am feeling and then some. So I thank God for each of you who has posted some piece of information or advice on here as I will now have something to do when I can't sleep! And let me apologize now, because I know I will have boat loads of questions. I thank you all in advance.
xoxoxo - Sheila
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 8:09pm
Sheila,
I am so sorry about the diagnosis.  Like you, I knew I had cancer that day of my mammogram.  I could tell by their tone that they were concerned.  I had my biopsy four days later and left the next morning with my 13 year old for a trip to NYC.  I told them I didn't want to wait for the news, so I got it while standing on the steps of the Natural History Museum.  We did go onto have a great trip despite the news.  Then, I came back to find I was TN. 
 
I wish Sloan Kettering, UCI, Duke, or MD Anderson were in my backyard.  I really do believe you will get great care there and it could be that someone on this site will give you a tip on the onc to see.    Are they suggesting you get any scans?  I know it's difficult, but don't jump to conclusions before the scans.  If it makes you feel any better, a friend of mine looked as if she had positive nodes.  They were inflamed.  But when they removed them (and her surgeon was sure the cancer had spread because of they way they looked when he held them in his hand), there was no cancer.  This was done about 12 years ago, and she is fine today.  I believe my surgeon told me that they can get an idea of whether the cancer is in the nodes through the mammo, ultrasound and MRI, but the only way they know for sure is to test them.  I don't want to give you any false hopes, but lets hope the mammogram is seeing inflammation that isn't cancer.  I can also tell you that my surgeon removed part of my chest wall because she felt an area on the backside of my breast that was "gritty".  There was no cancer in the chest wall and I had 2 cm margins (even where it was gritty).  The onc said that sometimes tissue can be irritated because it is near the cancer.
 
I know everything you are hearing is so frightening now.  Try to take it a day at time and a test at a time.  Be informed, but realize that nothing is for sure until they biopsy or scan it.  I do let fears creep in here and there, but I try not to worry until I know for sure there is something to worry about.  It is the only way I will stay sane.  But, it's perfectly normal to have anxiety and not be able to sleep.  Perhaps you doctor can give you something for the anxiety or something to help you sleep.
 
Keep in touch and let us know how you are doing.  We are here to support you. 
 
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hhhh Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 8:10pm
Hi Sheila, 
Sorry for your diagnosis but as you will hear from lots of people here, TNBC is not necessarily a death sentence. In fact, I've heard that one member here had 22 positive lymphnodes and is a 22 year survivor! Also, when my mom was diagnosed in August I lost a bunch of weight, looked like a skeletor, couldn't sleep, literally woke up with racing thoughts about whether she was going to die, declined to participate in social activities, felt serious guilt when I wasn't by her side 24/7, and had to make a huge effort to even keep up with my personal hygiene! Well, now that we have all the answers and have begun treatment, I will say that the edge has definitely worn off. I'm not going to lie and say I don't worry anymore...I still do but I've been able to achieve a balance and thank God it's not all doom and gloom like it was before. I think you will get there too as soon as you begin treatment and the shock of all this wears off. My only advice to you is to be the best health manager you can be for yourself...ask questions, get opinions and second opinions and maybe even third opinions, and hit this cancer hard! God willing you'll be fine. Best of luck to you. 
Daughter of one of the most amazing women in the world...

she was diagnosed 8/2010, had lumpectomy, TAC X 6, rads.

52 yrs, stage 2A (3cm, no nodes), triple neg, grade 3
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Post Options Post Options   Thanks (0) Thanks(0)   Quote abcmom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 8:20pm
Sheila-  Welcome!  I am so sorry you have need to be here but glad you found us.  Please, ask all the questions you want.  We are here for you!  I am so thankful for everyone here.  You are in my prayers! 
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 8:28pm
Hi Sheila,

Finding out you have TNBC can be very overwhelming.  The time between diagnosis and surgery/treatment seems to travel so slowly.  I remember just wanting all the tests to be done on the same day so that I could get on with treatment the next.  It felt more like hurry up and wait though.  As others have mentioned, please ask your doc for a mild sleeping pill or anxiety pill to help you through this period.  Ativan is commonly prescribed for mild anxiety and to help with sleep.

Did they give you any idea the size of the tumor?  Many of us have an MRI after mammogram, ultrasound and biopsy.  How did they find the lesion on your spine?  Was it with a PET or CT scan?  Have you met with an oncologist or breast surgeon yet?  Are they recommending neoadjuvant chemo?  I'm sorry I just realized I'm asking you too many questions!

Feel free to post and let us know how you're doing.  This forum is wonderful and everyone here gets it.  We all can be honest and open with each other.  Wishing you the best.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2011 at 10:10pm
Sheila,  I relate with so much of your introductory post. In my case I had found a lump. Odd, never were my breasts ever lumpy and this seemed quite large, how could I have missed it before. Went for mammo, everyone said it is nothing don't worry but kept setting me up for more appts. Then had another mammo and was told to go for US. [ meanwhile everyone is telling me it's nothing] Had never heard of breast ultrasound so insisted for a supervisor to give me immediate explanations. The closest she could come was "it doesn't look good" then she showed me the formations and explained why. Next thing I know I am signed up for surgical biopsy. When I got home I wondered why I wasn't getting needle aspiration or "wait and see" like a friend of mine. It all happened so fast.
 
The good news and reason for my post is because all that was 10 years ago . Actually 10 years ago this month I found the lump. This was before they knew what TN was and just at the begining of sentinal node biopsies. My surgeon removed 13 nodes "to be safe than sorry." I had only 1/2 the chemo they now give. Many other differences in tx now too, now that they know what they are dealing with. The scariest parts are the unknowns that you are dealing with now. Pretty soon the picture becomes clearer.
 
Yes, there is a woman on board, she hasn't posted for quite a while but she was dx over 20 years ago with many nodes positive. I've had the pleasure of meeting her. She lives about 2 hours away. She is brca +.
 
So sorry you've had to join us. Good luck. Think positive and keep us posted. Feel free to ask any and all questions. Someone will always answer. Look in the resource area of this site for tips and questions to print out for your dr. , how to manage chemo, what to expect etc.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Galina2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2011 at 3:07am
Dear sisters,
 
we are in 2011 and I was also told that not only I AM TOO YOUNG (47 at the time!?!) and cancer DO NOT HURT !!!! So for that reason it is not cancer.  I was left for 6 months, compalining, crying of pain....
 
Yes, if cancer growth in the duct or just below the nipple, or strike a nerve, IT IS PAINFULL.
 
Have ALL LUMPS be CHECKED and removed promptly!!!!
Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08
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Post Options Post Options   Thanks (0) Thanks(0)   Quote illpraisehim Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2011 at 8:51am
[QUOTE=123Donna]Hi Sheila,

Did they give you any idea the size of the tumor?  a few centimeters, I will check to make sure... Can't remember right now.  How did they find the lesion on your spine?  PET scan I have met with both an oncologist and breast surgeon, but the breast surgeon referred me to the oncologist because they want to start me with chemo before surgery to shrink the tumors.  Are they recommending neoadjuvant chemo - not really sure what that is yet.... I am still researching terms and information.   Please ask me questions...  That will give me a better understanding of what questions I need to ask my doctors.
 
Thanks....
 

Sheila
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2011 at 8:59am
Sheila,

Thanks for your reply, you are learning all the new terms.  It takes time but if there is anything you don't understand, just ask us.  I had problems with all the abbreviations at the beginning too.

Neoadjuvant therapy is when they give chemo prior to the surgery.  It's useful to be able to gauge the effectiveness of the chemo as they can see if the tumor and positive nodes shrink while on treatment.  I guess they're trying to determine what the lesion on the spine is as it may change they chemo treatment regimen they might want to use.  Based on what they determine, you might want to ask if there are any clinical trials that might be a good fit.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2011 at 9:08am
Donna,
What time is your appt. today?
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 illpraisehim Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2011 at 9:37am

@ 123... (which happen to be my favorite numbers) My birthday is 12/3..... Anywhoo....  I did ask about Parp Inhibitors as I saw there was some information on that and the doctor said she would look into that for me.  I know she mentioned about having mestatised (sp) hence, the lesion on my spine would change the treatment.  The first oncologist (Dr. Lee) I went to wanted to have the lesion biopsied but after the other doctor looked at the films said that it would not be able to because of the location- and just wanted to start the chemo and treat it aggressively the three course treatment- But I left there to go to the Cancer Center.... So now, the new doctor (Sloan Kettering) is saying the same thing about the lesion, having it biopsied... I told her what Dr. Lee said, but she said if there is a possibility to have it done, I should do it just to be on the safe side...  So now, I havene't begun ANY treatment.  I go on 1/13 to have the port put in, and hopefully after that, we can just start.  Also sloan ketterin said the would just start me with Taxol....  I am wondering why the difference in treatments....  I remember Dr. Lee said if it was in my bones, they would only give me one agent......  So now this makes me wonder....

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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 07 2011 at 2:11pm
Sheila,
Hopefully they will be able to biopsy the lesion and you will prove them wrong and it won't be cancer.  Sorry that I didn't realize you'd had a PET scan when I saw your first entry. 
 
I do think you will come to love your port.  I wasn't sure about it at first and it did hurt a bit those first few days.  It's not pretty and it looks like you have an alien under your skin.  But, every time I go for chemo I am thankful to have it.  Accessing through the port is a piece of cake. 
 
I hope all goes well at your appointment today and that you have some answers.  I have friends whose family has gone to Sloan Kettering.  They have been happy with the treatment there, and it does seem that they are a center on the edge of what is happening.  Of course, I don't have any personal experience, but it is what I've heard.
 
The waiting is the hardest.  Here's hoping you'll have a plan of action very soon.
 
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote guygirl Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2011 at 3:28pm
I had my last radiation treatment today.  Thank you all for your prayers and support.  Now I am trying to decide on  when to shed the wig and trying to decide if I am going to dye my hair or not.  Not so sure I am ready to have a head of grey hair.
 
Ellen
Age 50 DX: 6/3/10 IDC, Stg 1A Grd 3 1.9cm, KI-67 85%, lump. w/SNB, clear margins, lymph node 0/1, 4 cycles A/C (dose dense) every 2 wks, 4 cycles Taxol(dose dense) every 2 wks, 33 rads, BRCA 1/2 neg.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 18 2011 at 3:36pm
Congratulations, Ellen! 
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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