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Newly Diagnosed and terrified

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Asovey View Drop Down
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    Posted: Nov 18 2017 at 1:49pm
Arial. I have just been diagnosed with triple negative infiltrating ductal carcinoma. To say I am a wreck is an understatement. I will meet with a surgeon on Tuesday to get,more information and with the Continuation of Care Committee at our hospital cancer center soon. I guess I will feel better after there is a plan. What I have read online scares me. I am 64 and had a normal mammogram in May of 2017. Found a denser area of tissue in my right breast in mid October. Had 3D Mammogram, ultrasound, mri and finally a biopsy last Tuesday. Found out results on Thursday. How do you get through these uncertain days? Did any of you have chemo before surgery? I just want this out of my body!
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2017 at 12:45pm
Asovey,

What you are feeling is exactly what we've all gone through.  I think the time from diagnosis to beginning of treatment (whether it's chemo or surgery first) is the worst time of your life.  For me, it was a nightmare of sleepless nights and anxiety.  It does get easier once you have a plan of action and begin treatment.  You feel like you are actively doing something to get rid of this beast.  TNBC is aggressive, but also very responsive to chemo.  Did they tell you how big they thought the tumor was?  Chemo is more often given prior to surgery if it's a larger tumor and if it has spread to the lymph nodes.  I can understand how you just want it out of your body.  Please talk to your doctor about something to help get you through these extremely tough days, something like Ativan to help with the anxiety.  I didn't ask or have anything and those days prior to surgery were hell for me.  I wish I had known to ask for something to help get me through that horrible period in my life.

Please keep us posted on how you are doing and what treatment plan they recommend.  

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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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2017 at 1:20pm
Thank you Donna for your encouraging words.  I totally agree that this time is the worst.I do have Ativan - and I am using it.  I can't imagine how you went through all this without something.  I will meet on Tuesday with my surgeon so I hope to know more after that.  Did you have Chemo first?  what were your side effects?  Did you have to go to the hospital to have it or was it in pill for.  My daughter was diagnosed last year with CML, which is a form of leukemia.  She takes a pill every morning and that is her chemo.  just amazing to me!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2017 at 6:58pm
Asovey,

When I was diagnosed in 2009 with Stage 1 TNBC, I had surgery first, then chemo.  At that time, chemo was usually given first to larger tumors.  The protocol may have changed since then and they might recommend chemo first, even if it's Stage 1.  Hopefully they will let you know the staging so you can make a good decision.  If ever in doubt, seek a 2nd opinion from another institution.  The side effects of chemo are manageable.  I went to a breast cancer center for treatment and did not have to go to a hospital.  All my chemos were through IV and not pill form.  You'll find the chemo nurses truly caring and helpful.  I'm sorry to hear about your daughter.  I hope she is doing well with treatment.

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 lsteuer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 20 2017 at 2:52pm
I also have been recently Dx and waiting for Chemo to start - probably in a couple of weeks.  I would love to talk with you about prescribed treatment and we can compare notes.  Not sure how to private message on this site though...
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Nov 20 2017 at 10:48pm
It always breaks my heart to see these first few days after diagnosis posts.  I am here to say I have managed my way through diagnosis, surgery, chemo, CT scan, radiation and follow up.  I am entering into my first mammogram post diagnosis on Monday.  I agree with Donna, the first few weeks are the worst.  Once a plan is in place you will feel better.  I am healthier than I was a year ago, more fit and in tune with "life" and trying to manage the unknown.  My husband and I are closer and my children truly are amazed at my strength.  

We are here for you and have experienced exactly what you are going through.  Lean on everyone in this forum.  I also was prescribed ativan and it really helped.  The unknown is the worst.  But, YOU WILL SURVIVE and get through this.  We all have on this forum :)  Be well, think positive and ask as many questions as you want!!!!!!!  Penny
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote lsteuer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 21 2017 at 12:41pm
My chemo is Adriamycin biweekly for 4 cycles then off 2 weeks then weekly Taxol for 12 weeks. Then we look at surgery depending on the tumor. I am waiting for the pet/ct scan so they can get more info. MRI showed a shadow on the sternum so they want to look at that too. Does this sounds like the treatmentanyone else has had. From my research this sounds right. Btw, my first ‘opinion’ Md found me not positive at the end of August- so glad I pushed as I knew something was wrong. Thanks ladies
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mermaid Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2017 at 2:07am
Hi Isteuer, That is similar to the chemo treatment I had, early May through October, but I had Adriamycin-Cytoxin, and then Taxol. I had "lesions" on the sternum that were not affected by the chemo, so they think that wasn't cancer; also "nodules" on my lungs, which was worrying because my diagnosis is TNBC "versus" small cell cancer (meaning they don't know which one it is), and small cell is commonly a lung cancer, but those didn't change with chemo either. The tumor did: it shrank from 22 mm to 1 mm by the time of surgery in November. The AC was awful for me--the meds made me sick and the steroids made me manic, and I didn't know I could advocate for myself to ask for less steroids; the Taxol was much much easier. It's different for everyone, and maybe just the Adriamycin without the Cytoxin is easier. I'm now trying to make decisions about radiation. It seems like forever ago that I started, but now that those parts are over and I'm looking ahead, the memories are fading, and I feel really healthy. Also, I asked for and accepted a lot of help, and it changed my life. I was grateful every day, as weird as it sounds. We are alive and lucky! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lsteuer Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2017 at 8:54am
Thank you for your response. Did you have a mastectomy?
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A lumpectomy. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2017 at 1:43pm
Thanks Donna:  I am still trying to figure out how this forum works.  Never done one before.  I agree, this is the worst time.  I saw my surgeon last week and this week I will meet with the Multidisciplinary Breast Cancer Team at our hospital.  They will make the final treatment plan decision.  The mass I have is about 4 cm so the surgeon said I will most likely have chemo first to shrink in down.  Then a lumpectomy and radiation.

I do have Ativan and believe me, I am using it.  

Hoping for better times ahead!

Ann  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2017 at 1:46pm
I, too, would love to keep in touch and see how things are going with both of us.  I will try and figure out how to PM, but I am new to this forum thing!Smile

Ann
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Nov 26 2017 at 1:49pm
Thanks Penny!  Still trying to figure out how this forum thing works.  Have never done one before.  A story like your makes me feel encouraged.  Hope your mammo goes well!

Ann
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Post Options Post Options   Thanks (0) Thanks(0)   Quote vickiesmacher Quote  Post ReplyReply Direct Link To This Post Posted: Nov 28 2017 at 8:33pm
HI, this is my first post. Actually I dont know how to post so I thought I would reply to this.
I was diagnosed in late Sept invasive duct cancer grade 3. Biopsy showed triple negative. Had lump surgery on Nov 10. Stage 1, not in lymph nodes! will be starting chemo mid Dec. My husband keeps waiting for me to cry, break down, freak out. Not happening. Just want to get on with it.

Pls tell me how to post and I will ask my questions.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 28 2017 at 8:59pm
Hi Vickie,

Your post worked!  I'm sorry about your diagnosis.  Your surgery was on my birthday so I hope that brings you good luck!  All of us respond to this diagnosis in our own way.  Some cry, others not so much.  There's no one way to do cancer.  You do it however gets you through it.  There's no right or wrong.  You'll find this group very supportive and understand what you are going through.  

To start a new thread, go to the forum heading, like Welcome New Members.  There will be a button in the top left that says "New Topic+" .  Click on that to start your own thread.  You'll have to create a topic and post.

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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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2017 at 12:31pm
I sure wish I had your attitude!  I am still in the shock and awe phase, but I am crying less.  I am just learning this forum stuff to, but if I remember I posted my question from the forum home page.  Give that a try.

Ann
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Motherofall6 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2017 at 3:52pm
Originally posted by vickiesmacher vickiesmacher wrote:

HI, this is my first post. Actually I dont know how to post so I thought I would reply to this.
I was diagnosed in late Sept invasive duct cancer grade 3. Biopsy showed triple negative. Had lump surgery on Nov 10. Stage 1, not in lymph nodes! will be starting chemo mid Dec. My husband keeps waiting for me to cry, break down, freak out. Not happening. Just want to get on with it.

Pls tell me how to post and I will ask my questions.


We have similar diagnosis, I start chemo last week December , do u know yet which chemo and how many
diagnosed 10/27/2017
triple negative breast cancer
stage 1 grade 3
lumpectomy 11/10/2017
radiation
chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Nov 29 2017 at 6:50pm
Hi Vickie: I meet tomorrow with the multidisciplinary Breat Cancer Team at our hospital, I will know more after that. We are having a second opinion done at Mayo and maybe MD Anderson in Texas. I just want to get this show on the Road! Everyone I talk with says you feel better once a plan is in place. Let’s keep in touch. My personal email is: Soveyann@msu.edu.

Ann
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lisashell Quote  Post ReplyReply Direct Link To This Post Posted: Dec 05 2017 at 10:57pm
I am so scared and horrified. I was just diagnosed and I am getting all of the tests this week to r/o any spread. I am having a port placed Monday and start chemo Tuesday. My pathology was typed wrong and I just found out I am triple negative yesterday. Just looking for some good stories about triple begat e and some encouragement.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Lisa s Quote  Post ReplyReply Direct Link To This Post Posted: Dec 06 2017 at 12:05am
i was newly diagnosed in April. Triple neg 2.5 cm tumor with more suspicious area.   Had chemo,lumpectomy and 2 nodes removed. all were clear after chemo. I had a complete response to treatment. I will be starting radiation next week or so. treatment is doable! I worked some and felt ok most days. Not a day goes by i don't worry about recurrence. I guess the trick is to literally live one day at a time.
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