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Newly diagnosed/scared to death

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munchkinrn1 View Drop Down
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    Posted: Nov 13 2016 at 9:57pm
Hello, my name is Marci. I was diagnosed with two triple negative invasive ductal carcinoma in my left breast 9/23/2016.  I was told nothing was seen in my lymph nodes by ultrasound, but a couple of them were larger than normal.  I had a PET scan, that apparently showed a few positive lymph nodes, two of which are supraclavicular.  I found this out by getting papers from my doc to fax to insurance.  He has me down as a  stage 3c, which was quite a shock to me when I read it.  
I am scared.  I am 43 years old, with four kids, aged 24, 18, 16, and 6.  I am a nurse.  I am in grad school.  I do not know how to process all of this.  Right now, I am receiving Taxol and Carboplatin through my port, and an oral chemo, called Lynparza twice daily.  I need some serious positive vibes....
Marci
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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 13 2016 at 11:16pm
Hi Marci,

Being scared is a common feeling all of us have.  This forum has been a great support to help process those feelings.  How are you doing on chemo?  Are you still able to work?

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 AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2016 at 12:54am
My heart breaks for you, Marci, I remember all too well the terror I felt when I was newly diagnosed and while in treatment. I've spent hours and hours and HOURS on this computer and have read so many encouraging stories of women who were your stage and are years out now. The best thing I can tell you right now is that it DOES get better and that this site is always here when you need it. If you have any questions, ask away, this forum is chock full of answers! Please keep us updated on how you're progressing and I'm sending you my very best wishes Heart
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2016 at 11:03am
Hi Marci, glad you found this forum but I am sorry you had to find it. This has been a wonderfully supportive place for me, especially when I was first diagnosed. I 'lurked' and read everything without posting. With time, I realized that it was a safe place and I could ask my questions and get support. What you are feeling, as both Donna and Nikki have said, is very normal. The fear is very real and can be paralyzing. Just know that we will support you as best we can so don't be afraid to post and ask questions. How are things going for you now?

Sending you an e-hug today.
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote roserosie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2017 at 8:46pm
Hi Marci,

I was also diagnosed with tnbc 3c, and I was terrified, I was also 43 at the time. I was diagnosed is June of 2015, it will be two years this June. I have two children a nine year old ands 19 year old.
I went through chemo first, then surgery, 30 rounds of radiation. 8 out of nine nodes were positive and I had vascular invasion. You will go through stages and I was so happy to be going in for surgery I felt like I was near the end of the journey, well I was wrong. I opted for a double masectomy with tissue expanders, but I really didn't prepare myself mentally for the surgery, you just kind of go through all the motions.
My lowest point was after surgery, because I was just so excited to finally just be getting the cancer out that I didn't really think about the pathology report.
I was devastated to find out that I had tested positive with 8 out of 9 nodes after pumping poison into my system for months and that my tumor that was about 2.7 cm only shrunk by 25%. I begged my oncologist after going over my pathology report andI said please you have to have something else for me and she said No, we did protocol. I had the Ac and Taxol. My next meeting with my oncologist she was so happy to see me because they had just started treating women with residual cancer after going through chemo & radiation xeloda. She gave me the prescription and I did 12 cycles of xeloda, which I was so grateful for!! I would be lying to you if I didn't worry about my cancer returning, but I'm alive and my life is good, I'm back to work and life is once again moving fast and kind of hectic. It's returning to normal... It's a long road, just go for the ride! It is a journey and just embrace it in the most positive energy you can. Stay Strong because we are tough!!God Bless you. You are in my prayers, and you will get through this!
triple neg, 3.3 cm residual tumor 8/9 lymph nodes positive, radiation 25 with two boosts, now xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Patrickm Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 4:38pm
Hi Roserosie. My wife is stage 2b with a 4 cm tumor just taken out yesterday and 1 node positive (15 removed). Chemo was 2 a.c. and 12 weekly carbo taxol mix. Tumor shunk only a bit. She is brca negative and age 38 with 2 young kids.

We're looking at radiation and xeola as next steps. How did you handle the xeola and radiation?

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Post Options Post Options   Thanks (0) Thanks(0)   Quote roserosie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 6:24pm
Hi Patrick,

I thought Xeloda was a breeze, they started me with four pills in the morning and four pills in the evening, two weeks on one week off. I did that for about a month and then my hands and feet started peeling so the dr. started with one week on and one week off until I finished all 8 cycles. I didn't have any side effects except for the beginning and a little tenderness in the hands and feet, but key is to keep mositurizing the hands and feet. No hair loss either. 
I had left sided breast cancer so I opted for Proton radiation, its more direct and since your organs are on your left side I opted for this radiation, its suppose to be more direct. I'm too young to radiate my heart and organs and so is your wife. If she has it on the left side she should look into Proton radiation. I'm not going to lie, I hated radiation, its every day for five weeks and it was an hour to 1.5 hours on a table every day except for weekends but you get through it like everything else. My skin did get really red, like a bad sunburn around week 4. I kept putting cream and aloe and all kinds of cream on.
Its good that she only had one positive node. If she is going to consider proton radiation she can't have expanders in she will have to swap out her expanders for implants. If you need any additional info just message me. Good Luck to you and your wife:) 

triple neg, 3.3 cm residual tumor 8/9 lymph nodes positive, radiation 25 with two boosts, now xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 6:34pm
Hi Patrickm: Is your wife " triple negative" ?(TNBC)  ?
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Yes.    Original diagnosis in Sept of 2016
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Patrickm View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Patrickm Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2017 at 4:15pm
Great information.   How many months are you out of radiation?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sunny day Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2017 at 2:46pm
Hello everyone, I have started Xeloda last week(4 pills in the morning and 4 pills at night, One week on and one week off ) in my 6th day I developed a terrible headache and major nausea. I called my oncologist and he said to stop taking it to see if the headache would go away, and it did( thank God). They are thinking of lowering my dose, does anyone have any experience with that?
    I want to say thank you for everyone on here, for being so nice and helping with all the questions I have.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Patrickm Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2017 at 2:48pm
Thought about the tpiv 200 clinical trial for residual disease?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ohheycaity Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2017 at 5:44pm
Hi, my name is Caitlin. I just found out today that I am triple negative. I am 25 years old. I don't know my game plan or the ins and outs of what we have to do. Once she said that I was (I read about it and hoped I'd be positive), I kind of went on autopiolet. I believe I will undergo chemo shortly after they do my PET scan (suspicious spot on liver, 3 on breast, swollen lymph node on right side...current cancer positive side). I was recently diagnosed with breast cancer Jan 25th. Everything has kind of been moving fast but I want to absorb as much information as I can and still try to stay positive. The spot on my liver, I was told if it is positive, I am stage 4. This spot was actually found last year, I had an MRI and it was dismissed as benign liver cysts. I am hoping this is truly the case and this wasn't overlooked. I feel like this was in August...by now my fast progressing case would have symptoms in the liver? I have no problems and the size is not abnormal. I was told the spot is small.

Edited by ohheycaity - Feb 03 2017 at 5:45pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2017 at 11:43pm
Hi Caitlin, I just wanted to welcome you even though this is the last place you want to be, I know. I'm so sorry you're dealing with this at your young age, Triple Negative has no rules when it comes to that. As far as the liver spot goes, I had a similar situation last March when my MRI came back "inconclusive" so my oncologist suggested a biopsy or a repeat MRI after 3 months. I was so freaked out that I refused both and when I saw him in Aug (5 months later) he said I'd be having symptoms by then had the spot been cancer related. Try to keep positive, the worst part is the waiting phase you're in now and once you get your treatment plan locked in it will help. I hope you keep us posted on your progress and don't be afraid to ask anything and everything here, this is an amazingly knowledgeable and supportive group! Also, you'll probably get a lot more replies if you repost and start a new question under TNBC Talk or one of the other threads, it might get missed here easily. Hang in there, you can beat this! Best wishes xo
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocky Quote  Post ReplyReply Direct Link To This Post Posted: Feb 04 2017 at 8:56pm
Hi Caitlin,

Again welcome seems like the wrong sentiment. Just to reinforce the message, let me say that You are truly in the worst phase , having to wait for information. Hang in there! In the beginning it's seems too Monumental to deal with. Somehow step by step we get through it and beat it!

Hang in and stay strong!
Rocky (laura)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Michelled2422 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2017 at 9:30am
My heart goes out to you. I was diagnosed in April 2017 and it has been a roller coaster ride of emotions. So get essential oils,Valium and a few close friends you can call. During my chemo treatment I would just start crying for no reason...and I would call my frinds and it was ok. I also did reiki/energy healing. And remember every time you turn around there will be something else...when all said in done it will be 1.5 yrs to get to reconstruction. I did work and would call in if I was sick but my biggest regret was I should have taken time off at the end of my chemo...week 10-12 of taxol. Hang in there. I am on round 2 of 8 of xeloda.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wintersolstice Quote  Post ReplyReply Direct Link To This Post Posted: Feb 12 2017 at 9:23am
Hi all, am new to this forum. I was treated for TNBC 16 yrs ago and was fine until 3 weeks when I was diagnosed with another primary tumour which is also TBNC. Am currently waiting for my CT and Bone scans and then hopefully start chemo Asap. What's scaring me now is that my vit b12 levels are very elevated and data on the internet about that isn't good news. Just wondering if anyone has experience of this?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2017 at 5:47pm
Winter: I don't think your" vitamin b12 level"  is important, what is important is if you had a PET/CT scan showing some metabolic activity. I am saying this, because my wife has had lot of tests, but I'm not a doctor...

You said : " I was diagnosed with another primary tumour which is also TBNC.'"

You might provide this forum for an update  and I am sure others have some help/


wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote wintersolstice Quote  Post ReplyReply Direct Link To This Post Posted: Feb 16 2017 at 7:14pm
I meant to say TNBC. Had TNBC in 2001 when my youngest was 1 week old. 13 nodes removed al clear. Had surgery, chemo and radiation and had no probs til 3 weeks ago when diagnosed with TNBC again. It's a completely new tumour rather than metastatic spread. Am having chemo first this time then surgery and am waiting on results of genetic test. Had AC last time but having Taxol x12 this time, just wondering if it's tougher?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rocky Quote  Post ReplyReply Direct Link To This Post Posted: Feb 17 2017 at 5:28pm
Taxol was tougher for me but everyone seems different.   Some hospitals use cold mittens or socks to help prevent nueropathy, ( mine did'nt). I've read mixed reviews, but why not give it a go. nueropathy can be permanent.   Wearing cold booties during chemo doesn't seem to difficult to do. Best of Luck Hang in there!

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