Go To Main TNBC Website


  New Posts New Posts RSS Feed - And Another TNBC Newbie
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

And Another TNBC Newbie

 Post Reply Post Reply
Author
barbbell View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 10 2011
Location: New York
Status: Offline
Points: 8
Post Options Post Options   Thanks (0) Thanks(0)   Quote barbbell Quote  Post ReplyReply Direct Link To This Post Topic: And Another TNBC Newbie
    Posted: Jun 10 2011 at 5:48pm

Hi everyone. I'm Barb from upstate New York and was diagnosed on April 4th with TN, Grade 3 and at the time lymphvascular invasion wasn't present.  I had the 1st lumpectomy on May 3, waited over a week only to find out they didn't get clear margins, had the re-excision on May 25th.  The tumor was small but lymphvascular invasion is present.  I am scheduled for a CT scan on the 17th, and then 33 radiation treatments starting a week or so later.  They said I had to wait for the last surgery to heal.  Over two months have passed with no treatments.  And I'm concerned that chemo is not part of my treatment.  The oncologist said because of the tumor size, chemo isn't needed.  My sister has done much reading on TN and is very concerned that I'm not having chemo, and wants me to get a 2nd opinion.  My sister also had breast cancer, but not TN, and was treated at the Charles Wood Cancer Center in Glens Falls, NY.   

I typed a post a few minutes ago but think I put it in the wrong place.  I didn't start a new topic and typed my message as a reply to another person's. Sorry. 
 
Oh....the surgeon did a sentinel node biopsy which was negative.
 
Because I have lymphvascular invasion, and TN, I'm feeling extremely anxious.
 
Steve very kindly replied to my incorrectly placed post.  Thank you. 
 
 


Edited by barbbell - Jun 12 2011 at 9:25pm
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2011 at 7:01pm
Barbell,

I also replied to your other post.  Please get a second opinion by someone knowledgeable with TNBC.  I think the big red flag is you have invasive TN and lymphovascular invasion.  You're not being negative and definitely need to be aggressive in treating TNBC.  Do you know the size of your tumor that was removed?  You mentioned it was Grade 3 but not the size.

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
barbbell View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 10 2011
Location: New York
Status: Offline
Points: 8
Post Options Post Options   Thanks (0) Thanks(0)   Quote barbbell Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2011 at 9:03am
Donna,
 
I've been trying to do this with family and friends and avoided any cancer support groups.....guess I was being delusional.  According to the 1st biopsy report, the cancerous tumor measured 8 x 7 x 6 mm. It showed macrolobulation and no significant shadowing or through transmission of sound.  I don't know what most of that means.  Adjacent to the cancerous nodule was a smaller solid mass measuring 3x3x2 mm; it was benign.  When I met with the oncologist last week, she told me the only worrisome part of my cancer was the lymphovascular invasion but she feels that because it was caught early, the cancer hasn't spread.  When I expressed concern, she told me that I needed to get past this and get on with my life. 
Back to Top
nilufer View Drop Down
Newbie
Newbie
Avatar

Joined: Apr 23 2010
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote nilufer Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2011 at 9:30am

Barbell-

 I agree with others that a second opinion would be good.  My tumor was .5 mm and I had no lymphovascular invasion. The first oncologist I saw did not think chemo was necessary, but he did give me the option of having it. After help from people on this forum, I also got a second opinion. This oncologist (as well as several others he discussed my case with) strongly recommended chemotherapy and I got 6 rounds of Taxotere and Cytoxan.  He said because the tumor was grade 3 and TN, that we needed to do everything possible to prevent recurrence. I agreed with that.

 I also don’t like that your oncologist dismissed your concerns.  Many doctors understand that a second opinion is appropriate. We have the right to make decisions about our medical treatment when facing this disease.

 I wish you the best of luck. You have come to the right place for information and support.

 Nilufer

Age: 51, dx 3/10, IDC, Stage I, grade 3, 5 mm. lump, lymph nodes 0/3, taxotere/cytoxan x 6, rads x35 finished Oct. 2010
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4454
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2011 at 10:07am
Dear barbbell,

You wrote "When I expressed concern, she told me that I needed to get past this and get on with my life.”

As the Church Lady (Dana Carvey) on SNL used to say, sarcastically, “now isn’t that special?”

In my opinion, the mark of a truly excellent physician is one who welcomes a second opinion, if s/he feels the second physician is an excellent resource. 

I, personally, am doing surveillance for pancreatic cancer based on my BRCA mutation and family history. I am seeing a Dr. James Abbruzzese at MD Anderson who is Chairman of the GI Oncology dept. there. I told him that I read about work being done by a Dr. Michael Goggins at Johns Hopkins regarding BRCA and pancreatic cancer and I wanted to see him to get a second opinion. Dr. Abbruzzese said “he is an expert in pancreatic cancer and by all means go and see him..please ask him to email me his conclusions..Good idea for you to see him and I might even learn something.” That kind of openness was wonderful for me to hear. I did go. Both physicians are on the same page and I don’t feel the trip was a waste of time or money even though the original game-plan was reaffirmed. I felt reassured that I was on the right path.

Barbbell, you have every right to question a physicians recommendations, ask questions and get a second opinion. This is your life and these decisions are important. I normally don’t write this strongly but I believe your physician has a certain arrogance that is unwarranted. The outstanding Breast Medical Oncologists I know are all humbled by TNBC and feel that aggressive treatment is required, even with small tumors.

Here is some information on lymphatic vascular invasion


Simplistically, it is my unprofessional understanding, it means that the cancer may be in your blood stream so radiation therapy may be useful for the cancer that is in your breast but if the cancer is in your ‘system’ than systemic chemotherapy may be warranted. Hopefully the chemo will kill the cancer that may already be circulating in your system. Radiation therapy, solely, will not accomplish that, it is my understanding.

I believe most experts in TNBC will tell you to have chemo. I would further encourage you to follow the advice of a TNBC expert as what chemo you should get. The fact that your physician is recommending no chemo in the face of possible lymphatic vascular characteristics, to me, diminishes that professional’s opinion regarding the type of chemo protocol you should follow..

Barbbell, I rarely write so strongly but the statement above about “getting on with your life” really put me over the top..I agree...I think you should get on with your life..with a new Breast Medical Oncologist who is TNBC savvy.

sorry, I imagine I may be upsetting you with my strong words but I am very bothered by not only what you have been told but the way you have been told. Knowledge is power and you have the absolute right to seek knowledge/information intelligently, which is what a second opinion is all about.

good luck to you..

all the best,

Steve




Edited by steve - Jun 11 2011 at 10:12am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
Back to Top
barbbell View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 10 2011
Location: New York
Status: Offline
Points: 8
Post Options Post Options   Thanks (0) Thanks(0)   Quote barbbell Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2011 at 10:35am

Thank you, Steve, for the information and support.  Perhaps I have waited too long before seeking a 2nd opinion.  I wanted to trust my doctors and listening to friends and family who said I was lucky the tumor was small, that they got clear margins, clear sentinel node, I felt I was doing the right thing.  But now after reading the posts from people with this type of cancer, I'm feeling extremely anxious.  I guess all I can do at this point is, wait until Monday morning, call my oncologist and request a referral to another oncologist for a 2nd opinion.  Someone wrote that there is a small window after surgery until chemo needs to begin.  I contacted the cancer center in Glens Falls, NY which isn't a teaching hospital like the one I'm going to now, but it has a good reputation.  And even there the wait to see a doctor will be a couple of weeks.  I will also call the doctor you referenced from NYC.  Thank you, Steve.

Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2011 at 11:03am
Barbell,

I'm so glad you're taking everyone's advice.  We don't want to scare or alarm you, that is never our intention.  We just want to share what some of us have learned the hard way about this disease.  If your doctor has your interest at hand, then maybe they can help you get in to see another oncologist for a second opinion quicker.  If you let them know where you'd like to go or the doctor's name, they could call and try and setup the appointment for you.  This may be a stretch if this doctor truly doesn't think you need chemo and should "get on with your life".  

I mentioned this before that when I was getting the run around about getting a second opinion appointment by the other onc's scheduler and was told it could be a couple of weeks, a quick phone call from my oncologist got me in the next day.  She was not only supportive but said this other onc was very good and she knew him and was happy to call him for me.  When I visited MD Anderson for a second opinion for radiation therapy, he referred me back to a radiation oncologist in St. Louis for treatment.  When I got home and tried to set up an appointment, I got the same delay with the gatekeepers for the doctors.  I was told it would be 2 weeks before I could get an appointment.  I needed to start treatment within two weeks!  I called back to MDA and talked to the nurse for the doctor.  He immediately contacted the doctor in St. Louis and I had an appointment the very next day.  I've found that a really supportive doctor will go out of their way to help you and get you that second opinion appointment.

Many doctors are humbled fighting TNBC.  It is more aggressive and as I have found out, doesn't play by the rules.  Wishing you the best and let us know if we can help out in any way.  You've found a wonderful community to help you in this fight.

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
krisa View Drop Down
Senior Member
Senior Member
Avatar

Joined: May 21 2008
Location: Portland, OR
Status: Offline
Points: 1090
Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2011 at 12:08pm
Barbell,
Your doctor has no idea if the cancer has spread to make that statement. None of us want to have Chemo( I sure didn't, nor radiation)
Glad you will get a second opinion.. Listen to your gut instinct.
Takecare.
Back to Top
unklez View Drop Down
Senior Member
Senior Member


Joined: Sep 05 2009
Location: New Jersey
Status: Offline
Points: 1000
Post Options Post Options   Thanks (0) Thanks(0)   Quote unklez Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2011 at 9:33am
Dear Barbell,
A second opinion would be helpful.
Regards,
Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads.
Back to Top
Jenny View Drop Down
Groupie
Groupie
Avatar

Joined: Apr 11 2009
Location: Boston Massachusetts
Status: Offline
Points: 42
Post Options Post Options   Thanks (0) Thanks(0)   Quote Jenny Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2011 at 1:01pm
Hi Barbell,

Everyone has given wonderful spot-on advice and I'm so glad you are heeding it!

I too had vascular invasion which worried me and I'm glad my doc's insisted on the chemo. 

I fell into a scheduling snafu after my surgery and wound up not starting chemo until 7 weeks after my surgery.   Like you, I was concerned about waiting too long for the chemo.  I asked my onc. when I was finally able to get in , if she thought  the 7 weeks was too long of a wait.  She was not concerned, but she did start my chemo within 2 days of our first meeting.  I was very relieved.

Good luck to you and I'm so glad your sister raised a red flag!

Jenny
Jenny
dx 2007,age 37, Lumpectomy,
Stage 1, grade 3, BRCA1+
4x AC, 4x Abraxane
6 weeks rads, 2008 bilateral oopherectomy, 2012 bilateral nipple sparing PBM w/ reconstruction.

Back to Top
barbbell View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 10 2011
Location: New York
Status: Offline
Points: 8
Post Options Post Options   Thanks (0) Thanks(0)   Quote barbbell Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2011 at 1:29pm
Donna,

Did you have lymphovascular invasion?

Barb
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 12867
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2011 at 3:21pm
Barb,

No, when I had the mx, they got clear margins, no nodes and no sign of lymph or vascular invasion. 

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
barbbell View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 10 2011
Location: New York
Status: Offline
Points: 8
Post Options Post Options   Thanks (0) Thanks(0)   Quote barbbell Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2011 at 3:37pm
I contacted the breast cancer center and will hear from the surgeon's nurse practitioner tomorrow.  But my primary care physician contacted me, I meet with her tomorrow and she is going to make all the arrangements with the Glens Falls cancer center.  I'm presently at a larger city center but Glens Falls has a good reputation.  Their logo is "big city treatment but home town care"...or something like that.  I downloaded the latest brochure on TNBC treatment and one of the doctors wrote that perhaps the standard for the size of the tumor should be lowered, when considering chemo.  I don't have the BRCA gene mutations but have a family history of all sorts of cancers.

I thank all of you for your support and posts.  Until you have it, you can't really understand the emotions that go along with this terrible disease.

Have a wonderful day everyone!Big smile
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3609
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2011 at 5:13pm
Dear Barbell,

I'm glad you have someone working to help you get a second opinion. I'm sorry you were misled from the beginning by someone who obviously was not educated about TNBC.

Good luck and keep up posted on your progress.

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 - 11/2015-9 yrs NED
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.