New Posts New Posts RSS Feed - Survivors Needed
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Survivors Needed

 Post Reply Post Reply Page  <1 1617181920 24>
Author
 Rating: Topic Rating: 1 Votes, Average 5.00  Topic Search Topic Search  Topic Options Topic Options
Wade View Drop Down
Senior Member
Senior Member


Joined: May 15 2011
Location: SE Michigan
Status: Offline
Points: 108
Post Options Post Options   Thanks (0) Thanks(0)   Quote Wade Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2013 at 2:19pm
Hello all,

My wife just had her 2 year checkup - and there is no evidence of disease. She had an excellent response to the chemo - well, she was kicked in the butt by the treatments - but so was the tumor.

Her lumpectomy was in October 2011. She is feeling much better now, and has resumed all her normal activities. 

We hope all the best for all the ladies here.

Wade
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; November 2018 NED
Back to Top
nonna1642 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 17 2012
Location: California
Status: Offline
Points: 216
Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2013 at 6:13pm
Hi Wade,
Happy to hear your wife made her 2 year checkup with no NED.  I made my 3 year last May  Tell her to go out & enjoy life and always keep a positive attitude.  The best to both of you.
 
 
nonna
Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3611
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2013 at 8:17pm
Congratulation to Susie and to Wade's wife.  
 
God Bless,
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 - 11/2018-12 yrs NED
Back to Top
denise07 View Drop Down
Senior Member
Senior Member


Joined: Jun 26 2010
Location: pa
Status: Offline
Points: 997
Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2013 at 6:55am
Wonderful News folks!!!!
DX Idc 10/07,st2,gr3,2/6 lymphnodes
Back to Top
bondande View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 01 2009
Location: ohio
Status: Offline
Points: 167
Post Options Post Options   Thanks (0) Thanks(0)   Quote bondande Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2013 at 9:38am
My 5 year mark will be March 4 2014... On 12/12/12 I had diep flap reconstruction. I figured if GOD has decided to keep me here for a while and has made this available to me I was going to do it. Something I never thought I would do before. I believe in GODS promise of double for your trouble .I did it, it was scary, but I'm so glad I was brave enough to go through with it. GOD kept his promise.   He always does. Maybe not how you would think he would do it but he does do it! Blessings to all going through this trial. Bon
age55,Stg2a,Gr3,3.8cm tumor,mod.rad.mast.lft brst3/4/09,4ac,4taxol,33 rads.done11/2/09.BRCA1+oophorectomy1/5/2010,mast.rt brst 2/18/10,NED,bonescan 8/16/10,NED,catscan11/29/10NED catscan 3/17/11 NED
Back to Top
Stephsaulnier View Drop Down
Newbie
Newbie


Joined: Nov 06 2013
Location: Boston
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stephsaulnier Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2013 at 12:24pm
I just found this site. Not quite a survivor yet. Just had double mastectomy and still have more taxol and radiation to go. Stage 3 grade 3. I have been overwhelmed with the recurrence fear. It is consuming me. I am 35 years old with two young children. I look at them and cry every day. My surgeon seems so negative and gave me the impression she feels I am at a high risk for recurrence. I had a 5cm tumor and a 2 cm tumor. 5 out of 6 nodes positive with a lot of lymphatic invasion. She said it was very aggressive. My concern is I was told they only follow up with symptoms. No scans. I would think that I would require many scans since it was so aggressive. Are there any survivors out there with similar stats?? Seems most long termers had no nodes and smaller tumors.
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3611
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2013 at 6:35pm
Dear Stephanie,
 
Welcome to our Wonderful Support Group.  I am so sorry you have a need to find us, but we're right here for you. 
I suspect your surgeon doesn't want to commit to success, so the alternative is failure.  Please believe me, there are many ladies here who have started with 2 tumors and several involved lymph nodes.   Stage 3 is not a death sentence.  Triple negative is aggressive, but chemo can kick the cancer to the curb.  What does your whole treatment consist of other than Taxol and radiation?
 
We all had the recurrence fear and most of us still do; but time helps.  Please keep posting and let us know how things go with you.  You might also want to post on the new member thread.  A lot of girls visit that thread.
 
Take Care and God Bless,
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 - 11/2018-12 yrs NED
Back to Top
MLindaG View Drop Down
Senior Member
Senior Member
Avatar

Joined: Feb 16 2013
Location: Pittsburgh PA
Status: Offline
Points: 380
Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2013 at 7:27pm
Steph,  It is so hard when you realize that you can't control what is happening to you.  I lost my first pregnancy at 33 weeks along when I was 29 years old.  It hit me so hard. I cried every time I saw a pregnant women. I feel like that prepared me for the TN Cancer diagnosis!!  I'm sure I would have been equally upset if I was your age with children.  What you are going through is normal.  A couple of things that did help me is to focus on positive things..........I went to a hypnotist in our area that holds group sessions for cancer patients (no charge).  He talks about the mind/body connection and gives you CD's to listen to - visualizing the white blood cells getting rid of the cancer..........it is a very positive affirmation type of CD.  I listened to it when I went to bed every night for a month and then occasionally after that as I couldn't sleep (It always put me to sleep! )  or just needed some positivity.  I also got a lot of cards........I would write down on post cards some of the best positive thoughts from these cards and if I was waiting for a test/Dr. appt. etc. and was feeling a bit anxious or negative I would read these cards and get my mind thinking in a positive way.  I watched as many funny movies as I could.  I also took up a couple of hobbies.......I got into sewing and made my grand daughter a couple of play dresses..........I also made a few outfits for her 18 inch doll.  I also started knitting which has been fun!  I also started a picture project.......I'm putting all the pic's of mine (starting in 1953 when I was born - and right now I'm up to 1992) and my kids - scanning them into my computer and hope to give all the kids all the pic's on an external hard drive.  I tried to get my mind off of me and negative thoughts and get into positive healing thoughts.  Did I have some down days........of course I did but I do feel I had more positive than negative.  Surround yourself with positive people.  I am not a long term survivor - finished my rads end of May........I know the whole "no scanning in the future" is kind of unsettling.........I've talked to my onc many times about it with no success.  Why did they do your surgery before all your chemo was complete?  Did they not see the tumor's shrinking?  Praying for you to find some peace.  
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.
Back to Top
debB View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 14 2011
Location: Central Illinoi
Status: Offline
Points: 692
Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2013 at 7:51pm
Hi Wade!

So glad your wife had a clear two year check-up!! I had my check up last week and waiting for the all clear. I have to go back to the surgeon for an ultrasound for some tender spots. Because of a few nagging problems, they did a CT, which was clear, so I am anticipating a clear ultrasound as well. I am so glad you posted because I have wondered about you guys!!


Steph,

Did you have some chemo prior to your surgery so they could see how the tumors responded? You could check into possible clinical trials to see if there is something more that you could be doing in that arena. Also, LBBC (Living Beyond Breast Cancer) website has a TN section and in there is a talk that was given, along with the slideshow, on recommended lifestyle changes after treatment for TN. Make the changes you feel you can live with after treatment.

We have several long term survivors around with similar involvement, so don't think that recurrence is a given! Feel free to tell us more about you and your story and keep us posted. Hang in there!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
Back to Top
Stephsaulnier View Drop Down
Newbie
Newbie


Joined: Nov 06 2013
Location: Boston
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stephsaulnier Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2013 at 8:34pm
Thank you all for your responses. I did four rounds of AC. The surgeon said the only reason she wanted to do surgery before finishing chemo was to allow my skin more time to heal prior to radiation. I was told there is no difference in prognosis whether surgery is done before, after or during chemo. The thing that concerns me is my oncologist only did a quick physical exam, just palpitating tumor, prior to each chemo session and no scans were done right before surgery. I always asked how they knew the chemo was working and she said it only mattered if the tumor grew which she felt it wasn't. Other than that they don't change the chemo regime.
Lillie, finishing the taxol and radiation will complete my treatment however they are adding weekly Cisplatin chemo to my radiation for six weeks. It's a clinical trial. But sometime after the taxol I have to have my nipples removed since the path report showed cancer there and a completely separate dcis on the opposite nipple. I feel like after that they throw you to the curb. My oncologist keeps saying she will monitor me closely for years but that just consists of asking me now I'm feeling basically.
The internet can be a blessing (finding the women on this site) but it has driven me crazy when I become obsessed with stats. And of course I can only dwell on the negative. I had a brain tumor two years ago which is the type that can come back. I just finally stopped questioning every headache and now it will all begin again but only I'll be questioning any ache anywhere. Sorry for being so negative. Just scared right now. My surgeon just seemed so negative and made it sound like tumors as aggressive as mine was are hard to keep from coming back.
Back to Top
nonna1642 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 17 2012
Location: California
Status: Offline
Points: 216
Post Options Post Options   Thanks (0) Thanks(0)   Quote nonna1642 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2013 at 3:51pm
know it is hard not to be negative, but having a strong positive attitude can help.  All the people on my team talked about having a positive attitude even the radioligst who did the ultrasound biopsy after my mammogram in 2010.  In 2007 they did an ultrasound at the same spot for a less then 7 mm & said it was a benign cyst.  I missed my mammograms in 2008 & 2009 but on a nuclear stress test  in Feb. 2010 at my cardiologist office it showed up & they told me to get it checked immediately.  I had a mammogram in March followed by an ultrasound biopsy that showed a 5 - 7 cm mass.  I had a CT scan,  MRI of pelvic & brain and a Bone scan before my surgery because they wanted to see if it went anywhere else.  I had my surgery in May 2010 of a left mastectomy along with removal of my 3 sentinel lymph nodes followed by chemo of TC and radiation..  My question did they do all these tests before your surgery when you were first diagnosed?  Even tho they failed to do an ultrasound in 2007 because of my history of abnormal mammograms ever since 1992 when my 1st needle localization biopsy turned out to be a failure & they were never sure if they missed what they went in to remove or not & my missing 2 years of mammograms I am still here 3 years later.  So please try to stay positive and if you have to get a wig have fun with them  The ACS where I live gave them for free so I had an auburn, blond & a brunette one.  No one knew what color my hair would be each day or style.  Take care & keep us posted.Smile
nonna
 
Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
Back to Top
lisab View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 27 2007
Location: United States
Status: Offline
Points: 169
Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2013 at 11:12am
Awwww, Steph, I feel bad for you.  I just hate that you are having to deal with this terrible disease and at such a young age with children to care for and now you are worried about whether or not your onc is doing the right things for you.  

Here's my suggestion for what it's worth.  When I first got cancer, I had an oncologist I loved.  She wanted me to have the AC regimen (at that time we had no idea what triple negative BC was).  I went for three other opinions about chemo because my tumor was so small and there was no lymph node involvement (at least that's what the tests showed).  All three doctors said chemo was more than likely not going to give me much additional guarantee of no recurrence, that radiation was probably enough.  Now, remember, this was almost 10 years ago.  I went for gene testing and found out then that I was triple negative so I elected to have a complete hysterectomy and double mastectomy, and my cancer returned.  I went back to my original oncologist and even though I have a lot of respect for her, I just didn't feel I was getting the care I needed and most importantly, wanted.  So, I chose another oncologist, who I honestly credit (along with my radiation oncologist) with saving my life.  So, I guess to summarize - if you aren't happy with your current doctor, go to another and another and another until you are satisfied you are getting the care you need.  Take advantage of everything and anything there is to offer to help you through this.  I wish I had some magic potion to fix all of this for you - I truly wish you did not have to go through this.  If you have the time, research other oncologists in your area or even in not so near areas.  Your peace of mind that you are getting the right treatment and care from your doctor is truly what can help you overcome this dreaded cancer.  Please stay in touch.  

Lisa B.
Diagnosed June 2004. Lumpectomy and radiation. BRCA2+. PBM w/DIEP Recon March 2005. Mets in chest wall June 2007. Chemo (Gemzar and Carboplatin) with radiation completed January 2008 - 5+ years ago.
Back to Top
Stephsaulnier View Drop Down
Newbie
Newbie


Joined: Nov 06 2013
Location: Boston
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stephsaulnier Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2013 at 12:40pm
Nonna, Thank you.  I did have all the pre-staging scans prior to treatment and they were all clear.  And I went boring with my wig!!  Just the plain old look I had before.  lol

Lisa, Thank you as well.  I have a second opinion booked at a different hospital.  I hope they tell me I am doing everything right and agree with my doctors treatment so I don't have to deal with switching docs mid treatment. BUT I definitely will if I feel more comfortable there.  I need to trust my oncologist as I will hopefully be followed for many years to come.  Part of me wishes I wasn't so obsessed with the internet and stats.  Sometimes less is more.  I have a friend going through the same exact thing and treatment.  She didn't even know that TN had a higher chance of recurrence. 
Thank you all for you advice.  It's nice to vent to people that get it. xoxo
Back to Top
lisab View Drop Down
Senior Member
Senior Member
Avatar

Joined: Sep 27 2007
Location: United States
Status: Offline
Points: 169
Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2013 at 12:52pm
Dear Steph, I am glad you are going for another opinion and I totally understand not wanting to change doctors mid-treatment, but one thing I so remember my current oncologist telling me from the very beginning - "if you feel you need another opinion or two, please do so; it won't offend me at all."  That, to me, was a good doctor.  

As far as scans, I had them intermittently during my chemo treatment and then every 3-6 months for two years and then none at all - just 6-month checkups where we would talk about any issues and a complete breast exam.  

I forgot to mention to you and my blood tests have always showed my tumor markers to be all over the place, so my onc says he doesn't put much faith in them for me, at least not now.  I remember so well having metastatic cancer and my tumor markers saying I didn't.  Go figure.  

Also, something else I forgot to recommend.  It has been proven (at least the last time I checked) that the recurrence of TNBC is less likely if you have chemo the first time around (which I didn't).  So much has changed over the years and thank God, research and studies and clinical trials continue.  

Keeping you in my thoughts.

Lisa B.
Diagnosed June 2004. Lumpectomy and radiation. BRCA2+. PBM w/DIEP Recon March 2005. Mets in chest wall June 2007. Chemo (Gemzar and Carboplatin) with radiation completed January 2008 - 5+ years ago.
Back to Top
Nana Mimi View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 14 2013
Location: Framingham, MA
Status: Offline
Points: 34
Post Options Post Options   Thanks (0) Thanks(0)   Quote Nana Mimi Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2013 at 10:07am
Hello to all Sister Survivors,

At my last onc visit which was 6 weeks post chemo and radiation I told him I was going to consider myself a survivor as of that very moment!  I do not want to waste one more minute -  never mind 5 years - worrying or thinking about it!  It has taken me the past several weeks to put my life back together but it seems to be getting better every day!!!  This has been a wonderful place for information and support and I hope I will remember to drop in and visit every now and then.  

P.S.  I finally met another TNBC woman - in person!!!  Since my dx I had not met or talked to anyone (outside of my treatment team and you all) who had even heard of TNBC.  A month or so ago there was a brief report about it on TV but that was it.  Hopefully with more awareness there will be more progress in finding better and more effective treatments.  There is a cure for cancers of all kinds if we only had the will and funding to find it!  Medicine is big business and although I try to ignore the conspiracy fanatics I can't help but wonder... 
65 yrs old. Dx 5/13. IDCIS. TNBC. Lumpectomy 1.1cm clean margins. SNB 0/3. Stage 1. Grade 2. 4/4 rnds TC. Rad X 33. Done!
Back to Top
sueez View Drop Down
Newbie
Newbie


Joined: Oct 08 2008
Status: Offline
Points: 27
Post Options Post Options   Thanks (0) Thanks(0)   Quote sueez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2013 at 11:21am
I am also a survivor very happy to keep it in everyday No one is given tomorrow . i have been clean for 4 years and im a 3c lost everything and regained it all back by the grace of god and more. remember there is alot of us and were busy with life thats right there is life after cancer yes its with me everyday and still im  winning love my family ,animals babies , trees just anything living thats one gift cancer gave me focusing on the living  loving life even when i cant pay my bills and the tires flat what i went through what we all went through makes me grateful no matter what is thrown at me please know that im friends also with a stage 3c just like me and shes 15 years love love love to all Tongue
Back to Top
sueez View Drop Down
Newbie
Newbie


Joined: Oct 08 2008
Status: Offline
Points: 27
Post Options Post Options   Thanks (0) Thanks(0)   Quote sueez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2013 at 11:45am
Big smileIm also a stage 3c  had chemo first then surgery, radiation and reconstruction you should have been given the same and pet scans every three or six months my tumor was huge given know hope met a stage 4 and she walked me through it my # is 863-670-4410 you can call me night or day get a different doctor if your not getting emontional support from him or her and yes for the first year being a stage 3c you should be getting pet scans every 3 or 6 months  remember your fighting for yourself and your babies please second opions are a good thing dont be scared focus on those babies thats what got me through it and people like me and now you. god bless you call me anytime im 4 years cancer free just for today
Back to Top
Stephsaulnier View Drop Down
Newbie
Newbie


Joined: Nov 06 2013
Location: Boston
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote Stephsaulnier Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2013 at 12:01pm
Sueez, wasn't sure if your response was directed at me but I'd love to chat sometime. And congrats on being 4 years out. Sounds like your wonderful attitude has a lot to do with that. It's definitely helpful to hear many success stories as unfortunately google searches on TNBC can be very depressing more negative than helpful. I try to keep in mind that I am not a stat. Thanks again.
Back to Top
sueez View Drop Down
Newbie
Newbie


Joined: Oct 08 2008
Status: Offline
Points: 27
Post Options Post Options   Thanks (0) Thanks(0)   Quote sueez Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2013 at 7:08pm
my message was directed for you your not alone anytime you can call me someone was there for me.really happy I could make you feel better it means alot to me and others god bless you and your family
Back to Top
paulak62 View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 14 2013
Location: lyndhurst, nj
Status: Offline
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote paulak62 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2013 at 8:11pm
Hi, I'm new here. Was looking for something. Found you all! I was dx May 31 2001. Wow! Seems like an eternity ago. I just recently had a huge scare. Went for mammo and they found some calcifications in my non surgical breast. Found out yesterday that it was B9! When I was originally dx I was a mess. ER/PR neg.Her neg. DNA anapoloid. High grad ductal carcinoma with prominent lymphoid component(carcinoma with medullary features.  Abundant mitoses and histological and nuclear grade 3. Had A/C and Taxol then 7 wks of rads. It all really blew my mind. But after 12 years I am STILL HERE!. If you love your drs. listen to them, PLEASE! I questioned my onc the whole way through and he threw it right back at me. I am so happy I did what he told me to do. I consider him my "cruise director". I still do! I was very very bad and haven't gone for testing in a few years. (denial I suppose) Well this scare I just recently had is putting me back on track. There is no reason for my lackadaisical attitude. I honestly think I was just scared! YOU CAN DO this! I have been with a support group from the onset and there are so many of us that have been thriving. Ladies, it is the hardest thing I have ever done. To the partners supporting, it will be the hardest thing for you too but you will get through it with love, patience and support. I reach out because I want to help someone else out there just as I have been helped. Be strong! If there is anything I can do to help  I want to be there for you. <3 and prayers to all of you! HeartHandshake 12 years+



Edited by paulak62 - Nov 15 2013 at 8:57pm
Back to Top
 Post Reply Post Reply Page  <1 1617181920 24>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.