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Welcome From TNBC Foundation

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snugltz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: May 27 2017 at 1:49pm
I did have a mammogram every 6  months for 5 years.  Now its only yearly.  Also apparently many oncologists order a bone density.  Think chemo or something can damage your bones.  My previous oncologist (who quit and went to a place my insurance does not take) always ordered blood and tumor markers every 3 months for 3 year.  Then it was every 6 months.  My new oncologist does not do the tumor markers but does blood work.  Every 6 months still, even though it has been 7 years.
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jeffinn Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2017 at 11:40am
My oncologist says that research shows there is no difference in outcome between those who have scans and those who wait until they have symptoms and go to their doctor at that time. The oncologist says the scans may do more harm than good. He does no tests except a mammogram yearly for 10 years and I am to see the oncologist in 6 months then yearly for now (my blood work is done at that time).  My surgeon wants to see me yearly for 5 years (he does a good physical breast exam of the unaffected breast).    I was diagnosed with stage 2 triple negative breast cancer and had a mastectomy and removal of 12 lymph nodes in January 2016 followed by chemotherapy (5 nodes affected)in spring and in summer radiation(one larger and one smaller tumor). Last treatment Sept 7, 2016.  My problem is lymphedema in arm and hand from the surgery and peripheral neuropathy from the chemo.  I have linked up with the lymphedema association locally and have the correct massage therapist finally but I am unsure if anything helps with the peripheral edema (I do take pregabulin).  I can walk but cannot feel my feet.  I go to Curves for resistance exercises and strengthening.  I try to go to a pool for the compression of my arm and I do aquafit for lymphedema on my own after learning from a pool program run by the cancer support organization in the city an hour away from me.  I am feeling positive as my energy returns a bit more each day.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2017 at 3:13pm
Hi!  Just wanted you to know about something that I used that helped with the lymphadema.......something called a flexitouch machine.  It was suggested by my PT person.  I had lymphadema in my breast and it really helped to move the fluid out without having to go to PT.  It is a machine that helps to move fluid.  Check it out may be something you might consider as long term therapy.
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 Canapoli Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2017 at 12:39pm
Hi, I am trying to decide on type of surgery for early stage tnbc,but radiation with lumpectomy scares me more than mastectomy because of possible reoccurrence and possible stray cancer cells. What helped you decide? My drs don't want to do any scans post chemo prior to surgery so how do you even need know chemo is working? Just about to finish last treatment of dose dense taxol. Dx may 19 2017
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jasmine_501 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2017 at 8:59pm
I have TNBC, I've had Lumpectomy surgery, chemo and RAD's.  I go for my month check up after RAD's this coming week.  Then I go to every 3 months for 1 year.  I was diagnosed T1c, Grade 3, no Lymph Node involvement, all clear margins.  I am 65 years old and was 64 years old when diagnosed.  I had A/C and Taxol, strong density dose of 4 each every 2 weeks when able if counts were up.  I had 4 weeks RAD's with the last ones boost RAD's, don't remember how many at the moment 5 or 6, something like that.  I am trying to get used to living with the knowledge that I could have a reoccurence.  So I am trying to live one day at a time.  Just trying to get used to my new normal.Hug 

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Post Options Post Options   Thanks (1) Thanks(1)   Quote TriplePositiveGirl Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2017 at 9:10pm
I know it's hard, but it does get easier over time. You have a good chance of never having a recurrence by the way based on your overall stats. Try not to worry. I know that is easier said than done :)
Diagnosed Jan 2010; Stage IIa, grade 2, 3.2cm in rt. breast, no nodes and BRCA-. 4 cycles Carbo/Gemzar 3/10; Lump 6/10; 2 cycles carbo/gem after surgery 8/10; 35 Rads finished 12/1/10. NED.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meagan9 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 26 2017 at 9:54am
Hey, I'm so happy to find this site and see other people active on here! I'm a 43 year old single mom to a beautiful 6 year old girl. I was diagnosed with triple negative breast cancer on July 27th. I had a clear mammogram about one year ago, almost to today's date. In April, I found a lump that Dr's told me 'wasn't breast cancer, don't worry' because it was painful and the lump moved, and 'breast cancer lumps don't do that'. So unfortunately there was a long period of time between me finding the lump and the actual diagnosis that let my little lump grow to be the big thing it is now. Despite the misinformation at the beginning of this journey, I'm at an amazing hospital now and I LOVE my doctors and nurses. I'll getting my fourth chemo this week, still feeling pretty good other than some nausea and fatigue sometimes. It's nice to find a form with others going through this too. Stay strong!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 26 2017 at 8:19pm
Welcome Megan9,

You'll find this a great place for support and information to help you during this journey.  I'm so sorry they ignored the signs when you felt the lump.  Sadly, I've seen others with the same story.  So good to hear you are happy with your doctors and hospital.  Please keep us posted on how you're doing.

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 Cheekbones Quote  Post ReplyReply Direct Link To This Post Posted: Sep 27 2017 at 6:17pm
Hi. I'm so happy to feel a little positive in your message. I'm 44 diagnosed August 2, had surgery Aug 31st. My first day of chemo will be in two days and I'm fighting off the sadness. Your upbeat spirit was just what I needed. Thank you
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjpjaj Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2017 at 9:07am
Hi Everyone.    My name is Pam and I was diagnosed with TNBC September 7. I came across this site while searching for information on anything about TNBC..   This is the first time I have really even been sick. My emotions are all over the place. I just turned 57 and never even thought I would be here in this situation. I know of no one in my family that has had breast cancer.   Got to searching on my daddy's side and found ovarian cancer was active on my dads side. Never knew that. My doctor of course is concerned with that fact so I underwent genetic testing.   I haven't gotten any results yet but was wondering if anyone else been positive with the BRCA gene? Looking for anything to help guide me through this hole I'm in. I feel so trapped.
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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: Sep 30 2017 at 1:36pm
tjpjaj,

Hi Pam.  I'm sorry you have a reason to be here, but hopefully you'll soon learn this is a wonderful community for support, information and understanding from others that have/are facing the same diagnosis.  

Here are a few links with some good information on TNBC and genetic testing:

https://tnbcfoundation.org/wp-content/uploads/2015/07/Guide-to-Understanding-Triple-Negative-Breast-Cancer.pdf





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 gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 01 2017 at 5:39pm
Hi Pam, please don't panic, my wife got breast cancer at 57 yrs old, in 2008, then again TNBC in 2015, emotions can be "all over the place" My wife is negative for the BRCA gene.
Her Mom had breast cancer, but in her 70's.

Her doctors have analyzed her DNA and cancer tumor and the found a mutation, but this is after all her therapies, even if they had this knowledge, they would have advised her to go thru the normal advised therapies, which was chemo, surgery, radiation, not necessarily in that order.

Hope this helps.

 
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 joantherese Quote  Post ReplyReply Direct Link To This Post Posted: Oct 08 2017 at 11:54am
I was diagnosed with TNBC in January 2017. Lumpectomy, heavy doses of chemo for 5 months and now due to end 7 weeks of radiation in one week. I'm worried about the future even though docs want me to relax and "live my life". Terrified about recurrence.      
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2017 at 5:38pm
joantherese: the doctors say "live your life" , but as a husband, I can tell you there is always a worry. I think the best calm is if you can have a PET -scan once a year...
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2017 at 10:11pm
Joantherese,

What you are experiencing is completely normal.  The fear after treatment ends can be one of the scariest times as we are no longer actively fighting this beast.  For me it felt like I was standing on the edge of a cliff and they are saying, "your'e done, go live your life".  Much easier said than done.  I truly think the people that are saying relax, go live your life, have never faced what we have.  Mediation, exercise, walking all help, but never completely eliminates the fear of recurrence.  Just want you to know this is the new normal we must live with.  

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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