New Posts New Posts RSS Feed - New to TNBC
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

New to TNBC

 Post Reply Post Reply Page  12>
Author
Lawsonval View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 13 2019
Location: WA
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Topic: New to TNBC
    Posted: Oct 21 2019 at 10:01pm
taking TC, one last dose this week, then on to rads.  Chemo has not been fun, but close to the end
Back to Top
Lawsonval View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 13 2019
Location: WA
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2019 at 10:00pm
Tumor was 7 mm, no node involvement, being treated in Bellingham, 100 miles north of Seattle, negative on genetic mutation.
Back to Top
fkooei View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 21 2019
Location: London
Status: Offline
Points: 2
Post Options Post Options   Thanks (0) Thanks(0)   Quote fkooei Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2019 at 5:38pm
You said your tumor was small so I think you mean 1.0 cm?  Are you getting treated in Seattle?  There are a couple of great cancer centers in Seattle.  Have they tested you for genetic mutations?  If not, ask them to give you a test. 
Back to Top
Lawsonval View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 13 2019
Location: WA
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jul 28 2019 at 5:23pm
The nurse coordinator managed to get me moved up, so I now have visited radiation and medical oncologists. Radiation seems pretty clear.  Chemo still sounds pretty intense. Doc is recommending 4 doses, 3 weeks apart, of Cytoxan and Taxotere. Also found out that these are paired with steroids, which can raise your blood sugar, andI am a borderline type 2 diabetic. After seeing the statistics, where in 10 years, 15% will metastasize and die without chemo, while 10% still will with chemo, I really am struggling with this decision. Any other thoughts from the group?  Thanks for the help.
Back to Top
AnneB View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 21 2019
Location: Arizona
Status: Offline
Points: 2
Post Options Post Options   Thanks (0) Thanks(0)   Quote AnneB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2019 at 12:18am
Thank you for posting this.  <3
I'm curious - what made you decide on a bilateral mastectomy vs a lumpectomy?
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4996
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2019 at 7:10pm
Basically, after years of watching women post similar results, I've learned that the answer is 'go for it', don't hold back on treatment but stay aggressive. If you don't go the chemo route and you have a recurrence it will be that much harder to fight.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
Penny View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 28 2016
Location: Sacramento
Status: Offline
Points: 157
Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2019 at 12:33pm
Mine was the same... 6mm - and my uncle is a radiology oncologist - he said don't mess with it and do the chemo.  That was his guidance for me.  I was glad it was 6mm instead of 5.  NCCN says over 5 strongly consider chemo.  So, I am two years through this and lump/chemo/rad and reconstruction is complete.  And, I am feeling great!  I hope that helps you.
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.

Back to Top
Lawsonval View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 13 2019
Location: WA
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2019 at 12:23pm
Lumpectomy surgery is completed, 7 mm tumor, clear margins, no cancer in sentinel lymph nodes. So T1aN0, but aggressive, 8/9 . BUT when the doctor goes through the decision tree for TNBC, it says Consider Chemo, its in the grey area, its in the middle between NO Chemo and Yes Chemo.  I can't get in to see the medical oncologist for a month. Asked for second opinion, and will get a referral.  But how do people make this decision when you end up in the middle like this?
Back to Top
mainsailset View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 4996
Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2019 at 10:20pm
Hi Lawsonval
   I live in WA state too, the north central part, so quite aways from Seattle. Best thing that happened to me was to go to Fred Hutch for a 2nd opinion, they ended up signing me up for a NIH clinical trial and then I was able to get my chemo and treatment at their Mt Vernon satellite office.
   You can PM me if you want to talk about being distant from Seattle and how it impacts treatment.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13184
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2019 at 8:46pm
Lawsonval,

Usually the cutoff for recommending chemo is 5 mm.  

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

Back to Top
Lawsonval View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 13 2019
Location: WA
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2019 at 4:55pm
Ladies, I have spent my last few weeks reading and educating myself about TNBC, with many thanks to all of you on the forum.  I have a small 7-9 mm tumor, which is shaped like the lead in a color pencil. It can only be seen looking across the breast, and cannot be seen in any test method so far looking through the breast vertically.  I am having a lumpectomy and sentinel node removal next week. No evidence of sentinel node involvement (though who knows what surgery will say).  Can any of you help me with an article explaining how risk ranking is done to determine if chemo is recommended.  Or is it always recommended for triple negative?
Back to Top
Danzig482 View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 16 2019
Location: Virginia Beach
Status: Offline
Points: 14
Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 10:44pm
ok- pm I can see - new post , nope! Lol but thank you I donít know that Iíll need to do a new post. Just trolling (in a good way) for useful info.
Thank you!
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13184
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 7:49pm
When I click on your name on the left side, I see "Send Private Message", but I'm on a desk top, not mobile.

The other way to send a private message is go to to the "Member Control Panel" link in the upper left side of the screen.  You'll see an option for Private Messenger (about half way down).

You can also go to the upper right side of the screen and select "Memberlist".  You can search for the member name and then select "Private Message" about halfway on the right side of the screen.  Hope these options work for you.
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

Back to Top
Danzig482 View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 16 2019
Location: Virginia Beach
Status: Offline
Points: 14
Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 7:44pm
thank you - still donít see it but I think my mobile doesnít always show the same as a desktop screen
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13184
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 7:21pm
Danzig,

An easy way to send a PM is to click on the member's name.  You'll see a drop down menu and one option is Private Message.

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

Back to Top
Danzig482 View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 16 2019
Location: Virginia Beach
Status: Offline
Points: 14
Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 6:21pm
kellyless - euhus is one of my doctors for Thursday. I reaearched his whole career and life yesterday at the airport and am thrilled they put me with him. Feeling pretty lucky!

My vacation was for a month -  I bought a house in Nicaragua so that I could help the people of the village there and I try to go if you times a year. Sad i canít go because they count on me but I get plenty of vacations and can go soon enough. I did book my reservation biktoberfest in october, just upgraded my Harley in May 😍

The only Ďscareí Iíve had is the not knowing. Until the mris and scans come back who knows but Iím not expecting bad news. Prepare for the worst and hope form the best. My baby girl is coming down From Penn State tomorrow to meet me in Baltimore so that I can tell her the news and I think I might give her the option to go to the appointments with me. Having to tell my kids has been them worst. Justice took it well this weekend but heís older and independent. My college babe, l am gonna cry my eyes out when I tell her and sheís probably going to laugh and tell me to pull it together 😂

I am incredibly thankful i have the means and opportunity to go to Johns Hopkins. Itís four hours away but Iíll just fly up on my broom 😂 or stay short term. 

Thanks so much for the info. Is there a way to send a private message if I have a specific question for you?
Back to Top
Danzig482 View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 16 2019
Location: Virginia Beach
Status: Offline
Points: 14
Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 5:55pm
123Donna- Iím going to Johns Hopkins on Thursday. The stuff they gave me the diagnosis said it would take at least four weeks to even get noticed there but Machelle has been an absolute angel and got me right in. Iím pretty excited since I get to meet with a surgeon and oncologist same day.  Thank you!
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1120
Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 9:31am
I'm so very sorry Danzig, know that these early days are the WORST and you will get thru them. #1 - most important - go on the dang vacation!!! If it's longer than a week, shorten it to a week but GO. You re just going to get all the routine testing done at your local (ahem....sh*tty) hospital - scans: bone, heart, CT, MRI. Little things will show up on them that need follow up, (mine was a "thing" on ovary, lung,  back rib resulting in ultrasound =fluid filled cyst, xray=healed rib fracture I didn't know I had, ?? Don't remember lung test but was a scar from pneumonia 20 yrs prior, all NBD) little things that will terrify you but are 90% of the time nothing. The only deadline on this stuff is before you go to John Hopkins and get Real medical care. And you are so lucky to be able to go there!!! Seriously. I started the first time at a for profit hospital it was a nightmare just like you describe. A kind neighbor that had "normal" breast cancer asked to come speak to me after my diagnosis. She asked if I'd gotten a second opinion? No, I was to freaked! She explained, "I go to UT Southwestern. It's a Non profit research and teaching hospitals. How do I explain the difference.....it's like the doctors at (terrible hospital that rhymes with Taylor) are trying to pay off their Ferraris, at UT they're all trying to CURE CANCER". OMG was she right! My second opinion appointment was with Dr. David Euhus (now head of breast surgical oncology at JH). He spent an hour and a half with us and for the first the first time I felt like I was going to get thru this and live. Early July is soon enough, that's fine. You can even make a plan for chemo with local hospital, with a start date of a week after your two appointments at JH (you are going to get an appointment with a surgeon, hopefully Euhus as well because why wouldn't you?) I had a rare recurrence 7 years after the first time. I needed a second opinion, and I wanted MD Anderson. At the last minute our TNBC guardian angel Steve (he's here on this site) got me an appointment - the Thursday before I started chemo on Monday. My doctor at MDA suggested a different chemo regimin. He and my local doctor worked with my insurance company and got the change approved in One Day, I started chemo on time. It usually takes 6+ weeks from diagnosis to surgery or chemo to start so just.....breathe. Ask your doctor for some Xanax if your anxiety is awful. This is a marathon not a sprint so you need to take care of yourself. and go on vacation!!! It's going to be quite a whi!e before you can do that once treatment starts so GO! 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13184
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 8:06am
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

Back to Top
Lawsonval View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 13 2019
Location: WA
Status: Offline
Points: 15
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lawsonval Quote  Post ReplyReply Direct Link To This Post Posted: Jun 17 2019 at 1:53am
Iíve had mammogram, diagnostic mammogram, ultrasound and MRI, and biopsy, no cat scan or bone scan, nothing on ultrasound or mri except for breast lump. I am planning to talk with my surgeon again tomorrow as I didnít really understand the triple negative concerns until reading more about it.  Iím not sure about the genetic testing, and will have to ask.  My biopsy looks pretty dismal to me, after looking up the factors, and need to talk about that again with the doc too. I am going to get a second opinion.  I hate the uncertainty. I am 64, no family history of ANY type of cancer.
Back to Top
 Post Reply Post Reply Page  12>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

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