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Lauralind View Drop Down
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    Posted: May 13 2013 at 9:52pm
Hi everyone. I am 52 years old and the day after my birthday 2 1/2 weeks ago i was diagnosed with tnbc. My breast lesion at time of biopsy was 3 cm. I have multiple inflamed nodes but only one was biopsied at that time which was positive as well. At multidisciplinary team meeting last Wednesday it had grown to 4 cm. I get my port placed tomorrow and Thursday I start neoadjuvant chemotherapy with Dense dose AC for 4 cycles followed by taxol for 4 cycles. Talk about a fun summer... Not! I'm pretty anxious about the chemo. I live alone and I just don't know how that's going to go. I feel fortunate that I work at unc and I have dr Lisa Carey as my oncologist. I did do the genetic testing but its not back yet.

I'm glad I found this forum I've learned so much reading about all of you here. Thank you for sharing your experiences it really helps!

Laura
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2013 at 10:17pm
Welcome Laura to the club, that no one ever wishes to join. I am glad you found us. As you are finding this is a very helpful place for many thing, support, advice, giggles, cyber shoulders to cry on and rant with & many more.
There are many tips that will come along shortly. I see you said you live alone, do you have friends or family nearby that can help?  If you need anything from pharmacy, store or a ride? There are many anti-nausea meds out there, so let your docs know if it is not cutting it.

One thing I did & I don't know if you weill have time if needed but I will mention any way. I strongly suggest if it has been a while since being to the dentist that you go and get a good cleaning and any cavities that need attention. Chemo can be havoc on our mouth. A gentle dry mouth wash would be helpful, many get dry mouth (me included). Drink tons of water b4 treatment & after.

More members will be posting soon. Hang in there, it is doable. Rest and think of you, do not push yourself and excercise can be very helpful during this. Of course paying attention to limits.
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2013 at 10:18pm
Happy belated birthday :)
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Lauralind View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lauralind Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2013 at 10:27pm
Thank you Natalie! I just recently finished a major teeth cleaning session so I'm good there. It's a little frustrating because this was the year I was Really going to start taking care of myself and I was doing good! Now this sigh. I do have a big network of friends and a SO. He. Did tell me this evening that he didn't think he could stay with me all the time .. Which was disappointing to say the least so I'm not sure now what I will do.
4/26/13 TNBC left breast 3.0 now 4.0 cm, positive node with multiple axillary inflamed nodes on pet scan. Stage 3 grade 3, genetic negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2013 at 10:29pm
Laura,

Welcome and glad you found this group.  Sorry about your diagnosis.  You are at a great place (UNC) and Dr. Carey is one of the best.  Keep us posted on how your are doing.  Can friends help you out with food or errands if you're not feeling well after chemo?  There's an organization called Cleaning for a Reason that will clean your house once a month while going through treatment.  http://www.cleaningforareason.org/

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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2013 at 10:37pm
Dear Laura,

welcome to our TNBC family...and a belated Happy Birthday.

Very sorry you are dealing with this but you are in excellent hands, in my opinion. Please tell Dr. Carey I say hi and if you happen to see Carey Anders please tell her I say hi, too.

good luck to you!!!

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: May 13 2013 at 10:49pm
I can only speak for myself, but with the AC I felt fine the day of treatment it was like....hmmm days 2-4 were a bit crummy but still functioning. Your SO might surprise you, people handle this in all sorts of ways.
This is still the year to take care of yourself, it is just in a much bigger way. Be proud of yourself for fighting this beast. Nurture yourself, it is the best you can do for you right now :)
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2013 at 12:18am
Lauralind, chemo isn't a cakewalk but certainly doable. Of course everyone reacts differently. I was a single parent without family close by. I had many friends but honestly what helped the most I felt, was acupuncture. I didnt start it until a week after the first chemo, then I scheduled appts, directly after chemo. The difference between the first chemo and the subsequent ones where I went directly to acupuncture were immense. I worked thru chemo. Being a hairdresser I loved coming home to go be by myself in my room to regroup. Good luck, keep us posted. How fortunate to be seeing dr. Carey.
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 Rocklady Quote  Post ReplyReply Direct Link To This Post Posted: May 15 2013 at 6:08pm
Was diagnosed with TNBC on 3/14/13. Did all the testing MRI, Brca which was neg. Finally had my lumpectomy and 4 lymph nodes removed 2 days ago. Also had a mediport put in. I am sleeping in a recliner so that I don't turn on either side. A few questions, how long did you all sleep in a tight bra and how long before you laid flat in bed again?  Also how long should I wait to start lifting my arm up? I have been babying it since it's sore from the node removal. Guess I will be starting chemo in one month and trying to keep an open mind about how I will feel. I am scared though. Thanks for letting me vent a bit.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2013 at 9:56am
Welcome to our club, we are so sorry you have the reason to join <hugs>
It is the axila node removal that hurts the most and heals the slowest! With only 4 nodes removed perhaps you don't have the dreaded drain? If you have the drain, it usually stays in 4-7 days, it's best not use that arm til it's out. If you don't have the drain be sure to keep a close look at least twice a day for swelling, redness and feeling hot to the touch. Continue to take your temperature each day for a week! I had my lumpectomy & full axillary dissection on a Friday. Saturday night I felt.... Dreadful, but Dr said that was normal. Sunday morning I had 105 temp which finally got my (lousy, burnt out) surgeons attention. Anyhoo, barring infection, I was back sleeping in my bed 2 days after that scare, with 3 pillows keeping me a bit elevated. I stayed in the tight bra for a full two plus weeks - perhaps that has something to do with breast size? I'm a small D cup, if they'd been smaller id probably been able to ditch the bra at night sooner.
Have you received your full pathology report from surgery? Tumor size, grade and if nodes were clear? The TNBC in and of itself will mean chemo, not fun but completely "doable". I made friends with a woman on this site right when I was diagnosed, our situations were the same and she was 5 months ahead of me. The first great news she gave me was that with todays amazing anti- nausea meds you should NOT be throwing up on chemo. It's not like the movies anymore, where you spend a week hugging the toilet, there'll be days you feel lousy but you shouldn't be retching. That meant a lot to me!!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2013 at 1:44pm
It is probably different for everyone. I had 13-14 nodes removed. Oh my, so surprising that I forgot but time does heal. I slept in my bed from the beginning, so assuming I layed fairly flat right off. I went back to work as a hairdresser 8 days later. I didnt particularly do my "arm excersizes" as I was maneuvering at work all the time. I think I only wore that net bra thing till the end of the first week. It is important to move your arm so your shoulder retains all its mobility.
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 MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2013 at 11:37pm
Rockylady,  I had 10 (all) lymph nodes removed and had a drain. (2/13/13)  I was not allowed to do anything until the drain was removed which took about 12 days.............at the time I was not happy. I had to keep the bra on for these 12 days.  I continued to use the bra for a while as it hit under where the surgery site was located...........my regular bra hit exactly on the line and was much tighter and far more uncomfortable. (I am a size "G")  I asked for a couple extra at my first appt. after surgery so I had some changes.   I found putting a small pillow under my arm was a help.  I slept up in bed after my second day with no problem.  I did sleep with the pillow under my arm! The day after the drain was removed I started doing the exercises from the DVD that was given to me in my original folder.  When I saw the physical therapist the following week she was happy that I could move my arm completely over my head with no problem.  I was actually surprised that it took a good month until it felt more normal.  I expected it would be easier than it was............I did have a stitch that came out of the surgery site about 2 1/2 weeks after.........I was having pain at the surgery site and it got a bit red so I called and they ended up pulling the stitch out (it was supposed to be internal and dissolve).......they put me on antibiotics and once this healed I improved pretty quickly.  The nurses at the surgeon's office were great and I called them from time to time with questions.  I would call with any questions.  As for the chemo coming up.......everyone is so different........go with an open mind.......again question everything.......call if you are having problems.........I have found everyone is so helpful and they all want you to do as well as you can. 
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GailF Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2013 at 11:07am
Hi all,
I'm a new member.  Just got the diagnosis of tnbc yesterday.  This is overwhelming news and I am honestly a bit anxious but I have a great support system.  I met the surgeon last Monday and have my first appointment with the oncologist on Monday (all at the Faulkner Dana Farber in Boston).

I will have more news about the path report after my appointment and then I will be post more.  I am sure that I will have many questions and are so thankful that this forum is available.  

Day at a time...
Gail
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Post Options Post Options   Thanks (0) Thanks(0)   Quote arabella Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2013 at 9:18pm
Hi Gail!  
Sorry you had a reason to find this site, but it is great that you found it and  the best place to be when you've received this diagnosis which can be so scary to hear.  The following thread might be of some help to you at the moment before you meet with  your doctor on Monday:


Best of luck to you and please keep us posted as to what's happening with you.

Kaye
Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GailF Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2013 at 10:09pm
Thank you Kaye for reaching out. I have family and friends but it so important to be able to connect with other women who are actually dealing with or have experienced the same anxiety and fear that I am feeling. I am so grateful to have this forum.

The link you sent had such good questions to consider and ask at my doctor appointment Monday. I am bringing a copy with me.

Gail
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2013 at 10:21pm
Dear Gail,

just wanted to welcome you and let you know we are here for you.

Dana Farber is an excellent place for treatment.

Dana Farber is normally very good about it but if you are < 60 please please make sure you are tested for the BRCA mutation.

good luck to you!!!

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2013 at 6:55pm
Gail,

Glad you found this website. You will find many caring and knowledgeable women and men here.

You are already ahead on this challenging journey.......being able to say "Day at a time" when just
diagnosed shows your strength and ability to deal with this diagnosis.   Be assured most (if not all)
are overwhelmed and anxious when first diagnosed.

Yes, the thread on choosing your treatment team/questions to ask has lots of great information.
You will have many questions on your list to ask your physician.
You might like to consider including the following with your questions:
      - What are the pros and cons of chemo first?
      - What are the pros and cons of surgery first?
      - What are the pros and cons of each chemo option?
      - What are the pros and cons of each surgery option?
      - Confirm/request a referral to a Certified Genetics Counselor for a BRCA* test consult.
      - Confirm that a Vit D3 ** test has been done.
               (At some centers, one might be told, a VIt D3 test is not necessary.
               Consider stating that you are aware that some TNBC have low VIt D3 at diagnosis and
                   you would want a plan to increase your level if you should be low.)
      - How do I contact you for any questions after my appointments?
      - How much time do I have to make my decision?

*On BRCA testing:
   http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA
**On Vitamin D3:     See especially page 26
   http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html


Another thread has some good videos from Sloan-Kettering on support for newly diagnosed:
http://forum.tnbcfoundation.org/support-for-newly-diagnosedvideos_topic9641.html




With caring and positive thoughts,
Grateful for today.............Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GailF Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2013 at 8:26pm
Judy,  

Thank you for all that great information.  I have my list of questions to discuss at the appointment with the oncologist tomorrow.  I'll post my findings after my appointment.

One day at a time...

Gail
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2013 at 8:50pm
Hello Gail,
Just wanted to welcome you to the site.  You have received so much good information from some of the sisters, so I will not add to the list.
Just know that we are here for you and for each other.  As you said, it is great to have a Support Group who have experienced, or are experiencing what you are going through now.  WE UNDERSTAND.  I am glad to hear that you have a good support system with you in MA. 
 
I look forward to future posts from you and God Bless your journey.
 
Love,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote GailF Quote  Post ReplyReply Direct Link To This Post Posted: May 20 2013 at 9:11pm
Hi all,

Thank you for your comforting words of support.

Just got back from my day in Boston at Dana Farber.  First, they had to rule out a very small cyst on the other breast with an ultrasound and it was determined to be benign Smile.  Met with the oncologist and sat and talked (with my sister taking notes) for almost two hours and she answered all our questions and gave me lots of information.  I love it when they draw diagrams because I retain information better when it is visual.  I do have a copy of my pathology report.
The oncologist and surgeon recommend the chemo prior to surgery.  It was very important for me to find out any options for clinical trials and it turns out that there is one that I would be a great candidate.  The research nurse came in and joined our group to discuss the particulars on this trial, which will involve two additional biopsies.  The biopsies are not a concern for me.  

I have the protocol information and consent forms to start the trial and will go forward and sign them. I will be scheduled this week for the screening tests this week and start the first chemo infusion next Tuesday, once a week for 12 weeks, then a different chemo for 8 weeks, once every other week.

I am just so relieved to have a plan in place for this first step.  I am very happy with my oncologist and also the wonderful research nurse.  The facility is comfortable with such lovely competent people.  I know that I am in good hands.  

Today was a good day.

One day at a time....

Gail

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