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Sarah99 View Drop Down
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    Posted: Mar 11 2010 at 6:10pm
Hello,
 
My name is Sarah and I am 31 years old. I was diagnosed in Sept 09 with triple 3 neg so had a lumpectomy (with lymph nodes removered as had spread) and chemo but during chemo was told that the cancer was back in the same place so I have to have my left breast taken off on monday.
 
Today I had a CT scan which was clear but was told that the cancer is so aggressive that I have a 20% change of survival and with chemo poss 35%.
 
I am so scared and have no one to talk to who has been through this. Please does anyone have a similar experience or any advise?
 
Thank you.
 
Sarah
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Paddler View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Paddler Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 6:22pm
Sarah ... you have found a very supportive community here. Lots of folks will chime in here before the day is over. So please do not feel that you are alone.
 
I can't speak to your situation, but others can and will. 
 
I just wanted to make sure that you had at least one encouraging response to your note as quickly as possible.
 
Take care
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 6:26pm
Hi, Sarah.  Welcome to our community.  I'm so sorry you are dealing with so much, and at such a young age.  Do you want to say a bit more about your situation - like how many positive lymph nodes when you initially had surgery, and what type and how much chemo you have had?    We'll help you through treatment choices and the emotional trauma of it all, which all of us have shared.
Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 7:27pm
Sarah, if they haven't found spread beyond your breast and axillary lymph nodes, that sounds like an extreme prognosis to give you.  Like Denise said, please post the type of cancer you were diagnosed with (invasive ductal, lobular, inflammatory, etc.)  size of your tumor, the grade (most of us are 3, the most aggressive), and the number of lymph nodes involved. Were they only the nodes in your arm pit, or did they find them in your clavicle or chest area?  Also what chemo type you took and the schedule you did it on.  Did they test you for the BRCA genes?  At your age and with a recurrance they should.  If they haven't, you need to see a genetic counselor immediatly, preferably before your surgery if you are planning on only having one breast removed.
 
 There are some very smart people on this board that can help you figure out the truth.   Remember, doctors are only "practicing" medicine - they can be wrong - it's really not that unusual!
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 Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 7:42pm
Sarah,  They said I have a 20% - 30% chance of surviving this...  they couldn't even check my nodes as they were taken out 10 years ago, with a different type of breast cancer. but it was in the lymph channels..  They can't even tell me if I am stage IIB or III something.. yet they tell me, there is a 70% - 80% chance it will be back within two years.
 
Let me say this.. I was also hung up on the statistics, and sometimes still am... but those are statisitics, at best they are a few years old,   and there is no reason you can't be part of the 20% or 30% that it doesn't come back to.  Someone has to be... why not us that have foudn this site.
 
also, they don't know you, they don't know what your cancer will do or what your body will do with it...   so try, and trust me I know how hard it is,  to get the stats out of your mind... I was 39 the first time I was dx with BC,  49 the 2nd time...  I was doing chemo on my 40th birthday and again on my 50th...   so hang in honey...  do everything you can to fight it, if you believe in prayer, pray,  and reach out to us anytime. Autumn
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 8:00pm
Hi Sarah,

Please tell us the size of your tumor, how many nodes involved?  Did they give you a Stage when diagnosed?  What type of chemo were you on?

There are still lots of options for you right now.  Statistics are statistics.  It doesn't mean it will happen to you.  Please stay positive and give us more information to help you.

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: Mar 12 2010 at 7:09am
Good Morning Sarah,
I am so sorry you have to deal with this, being just a youngster. ( I can say that at 68)
But thankfully you have us! You will find no kinder, caring,  knowledgeable people anywhere. We love one another even though few of us have  met. Please leave the statistics in the hands of the statisticians. No one knows! It's as simple as that. Most of us were just stumbling around in the dark until we came here and everyone pitched in helped to make things clearer and put them in perspective. So like so many have said before me...breathe.....try to relax....If it's spiritual support that you think might help, we have that too with Spiritual Support thread. Please join us there as well.
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 Sarah99 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2010 at 12:05pm
I was so touched to receive so many messages. I am so glad that I found this website!
 
I was diagnosed with a Grade 3 invasive cancer. After lumpectomy I had 4 sessions over 8 weeks of AC chemo and then was supposed to have 12 weekly sessions on Pacletaxal (cant spell it!!)
 
I found another lump after 3 treatment of Pacletaxal and so the chemo was stopped. I have now been prescribed 6 sessions over 18 weeks of chemo after my op but I cannot remember the name although they said it has horrible side effects.
 
I hate stats and now wish I had never asked!!
 
Thank you all so much for replying and I am so chuffed to be welcomed to the group.
 
Any advise is greatly received.
xx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sarah99 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2010 at 12:11pm
I forgot to say that it was in my central lymph node and there were specks in the others so they were all removed - only found under my arm. My first tumour was about 2.5cm and the most recent is 8mm.
 
Sarah
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Post Options Post Options   Thanks (0) Thanks(0)   Quote scared Quote  Post ReplyReply Direct Link To This Post Posted: Mar 12 2010 at 12:39pm
Hello Sarah,
 
Welcome to this site, you will be getting support here from good people and let me say that I hope the best for you.  I am sure the entire ordeal is pretty scary.  First thing is that the mastectomy is not as bad an operation as you may think it is, we stayed overnight in the hospital and was released the next day.  After the first day home my wife was able to deal with the pain with over the counter drugs (Advil).
 
You are pretty young, with the tumor not as bad as my wife's tumor and they gave her an 85% rate of survival with three nodes positive.  Be strong, and get a second opinion of the diagnosis survival rate.
 
I would also stress getting some help mentally dealing with the diagnosis of TNBC.  My wife is seeing somebody two years after her diagnoisis and it helps.
 
Wishing you the best,
 
Dave
Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HairSprayMom Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2010 at 12:43pm
Hi Sarah,
 
I was 37 at DX and also given some crappy stats. I am with you as that I have a 70% chance of recurrance with the agressive and rare type of cancer I have (Metaplastic Carcinoma). I look at it like this if I am living my life by stats then I am just not living. I BELIEVE I will be on the 30% side with NO recurrance! Dang it! It is very easy to focus on the negative, I got caught up in that about a year ago and I just had to quit it. I need to be living my life, not worrying non stop about loosing it. I refuse to give in and we are all here to support and hold you up when you need it!
 
XO,
Regina
39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote anmnw Quote  Post ReplyReply Direct Link To This Post Posted: May 07 2010 at 10:27am
Hi Regina,
Glad to hear you are well!
My 57 year old sis in law has metaplastic BC.. had dbl mastectomy, 2 rounds chemo & radiation -after scar tissue surgery in Dec. just had another to remove aggresive regrowth mainly for pain - they didn`t get it all.Still waiting on lab results but it appears to be localized to left arm/pit area. Dr`s said we`re done -start looking elsewhere - small town Ohio. Since this is rare type BC just found this arena. We want to move fast so ANY pointers etc would be much appreciated!!
Thanks,
Anne
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HairSprayMom Quote  Post ReplyReply Direct Link To This Post Posted: May 07 2010 at 10:56am
Hi Anne,
 
We hit mine with a radical Mastectomy on the cancer side as my tumor was in the chest wall, I also did a prevenative MX on the other side. Then I did 8 rounds of dense dose chemo (only treatment for us trip negatives) over 5 months. 1st 4 rounds of chemo every 3 weeks Taxotere/Cytotoxin, 2nd 4 rounds of chemo every 2 weeks Adramyacin/Cytotoxin. I had a pet scan a year ago and I was NED (No Evidence of Disease) at that time. I decided after the stress of the scan that I would not do that again unless I felt there was a reason to. There is so little known about Metaplastic Carcinoma as well as Triple Negative, it sucks to be in this Special Club.
 
XO,
 
Regina
39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rds007 Quote  Post ReplyReply Direct Link To This Post Posted: May 07 2010 at 3:24pm
Hi Sarah! I totally understand your fears! I am 30 years old and am newly diagnosed...I didn't even ask my dr my prognosis, but of course reading online, the stats have me scared out of my wits! I know that even within the specific subtype of TNBC, there are many other factors to consider. And there are several different treatment protocols, dependent on those variables. There is a lot to consider with your dx, and it can be so overwhelming.
I am not just  incredibly scared, but mad, sad, and confused (as in "What?! Me? I have breast cancer??") as well. I'm sorry that you are going throught this, but you are not alone.  I hope we can help wach other get throught this togther...Hug
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tbell614 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 01 2010 at 11:31pm
I feel like I am living in a parallel universe.  My oncologist believes the additional radiation from follow up scans is a bigger risk than benefit and offered to do a tumor marker test.  None of my medical team wants to acknowledge "metaplastic" let alone TN.  I started radiation last week and when I had my radiation consultation, the radiation oncologist gently referred to how aggressive my cancer was but when I told him metaplastic scared me more than anything, he asked "why".  Does anyone have any links I can put in front of these guys that they would respect?  I have to admit I haven't come across anything concrete other than what I have heard from those of us who have it.  I want it to be addressed directly, without the verbal pat-on-my-head.  Thanks all!
Age 53; female;DX 11/23/09;3x negative, metaplastic; 1.5 cm;Stage 1;lumpectomy 12/23/09; reexcision 1/25/09;MUGA 1/25/09;TC completed 4/22/10. Radiation started 5/25/10. BRCA negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote anmnw Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2010 at 3:56am
Thanks  Regina,,
I guess I need to hear from a survivor at this point. My SIL has been bombarded with suggestions to the point I`m sure her head is spinning. How do you just offer information about test trials/locations to someone who is overwhelmed from info from every angle. The last thing I want to do is add to her stress but want to make sure she is aware of her options -especially since we have family in Boston and other cities where test trials are taking place who would like nothing more than put her up and transport her to hospitals., she is a proud women who doesn`t want to be a bother. But we have already lost one SIL to BC and don`t want to repeat our respect privacy code. At this point we have offered web sites and other other trial test info but I fear she and her husband are so over whelmed they haven`t had the energy to look into the options. Any tips would be most appreciated.     Thanks, Anne
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