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Just diagnosed Stage 1 ???

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Topic: Just diagnosed Stage 1 ???
Posted By: April-NJ
Subject: Just diagnosed Stage 1 ???
Date Posted: Jan 31 2011 at 11:29am
I just found out I am TNB, and I am besides my self they beleive Stage 1 with no lymphs but wont no for sure until surgery the waiting is driving me crazy.
 
What was your experieince? I have heard about having "chemo" before?  has anyone done this? 
Also how are you holding up, how long BC free?
 
I am doing a bi-lat Masc? will I still need Rads ?or does everyone with TNB need rad?
 
What can I expect and can you reccommend a good oncologist familair with TNB in North Jersey?
 
Thank you for your time!Unhappy
 
April



Replies:
Posted By: outnumbered
Date Posted: Jan 31 2011 at 11:39am
Hi April,
 
Welcome, I am sorry you have reason to be here, but take a deep breath.  This is do-able... And being here you will receive tons of love, support and info.   
 
Very often they do chemo before (neoadjuvant) to see if it is effective in shrinking it.  If you are a smaller stage I they might just do the surgery and then give the chemo. It really depends on you oncologist. As far as rads, it depends on the location and size of the tumor.  Please get several opinions and make sure your doctor is TN Savvy. 
 
I go to Deb Toppmeyer at CINJ in New Brunswick, and I am happy with them there.  I do not know how far north you are though.  Feel free to PM me. 
 
HUGS!


-------------
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008


Posted By: April-NJ
Date Posted: Jan 31 2011 at 11:47am
Thank you for your response I guess I need to find out what the doc thinks she never mentioned neo-adjuvent? just founf out this AM Im TN , maybe cause its Stage 1 they beleive and they dont beleive any node involvement?  But they cant be 100% sure until surgery and I dont like this waiting game and hoping nothing pops up in my nodes either.
 
I dont want to make the wrong choice as it can have LARGE REPROCUSSIONS, should I call the doctor about this neu-adjuvent chemo? I just dont know my head is about to explode, Im so scared I want to just cry.....


Posted By: SagePatientAdvocates
Date Posted: Jan 31 2011 at 12:26pm
Dear April,

welcome..I am very sorry you are dealing with this...we are here to try to give support..

First off, how old are you? sorry for the impertinent question but if you are under 45, even absent a family history of breast/ovarian cancer it might be wise for you to speak to a Certified Genetic Counselor, if you havenít already, for genetic counseling and possible BRCA testing...If you are over 45 with a family history of breast/ovarian cancer you should speak to a CGC, as well, in my unprofessional opinion.

You mentioned neo-adjuvant treatment. There is an excellent cancer center in Philadelphia and an excellent Breast Medical Oncologist there..I would suggest you consider seeing her.

Dr. Susan Domchek
Abramson Cancer Center
Univ. of Pennsylvania
Philadelphia

http://www.penncancer.org/patients/find-a-doctor/85/index.cfm - http://www.penncancer.org/patients/find-a-doctor/85/index.cfm

Abramson is also a site for the I-SPY 2 clinical trial. I am not suggesting you join this trial. I also have no idea if you meet the criteria but it is a neo-adjuvant trial..I am not a medical professional and please do not take any of my thoughts as medical advice.

Here are some links to the trial-

www.ispy2.org

http://clinicaltrials.gov/ct2/results?term=I-SPY+2 - http://clinicaltrials.gov/ct2/results?term=I-SPY+2

all the best,

Steve






-------------
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


Posted By: CinciMom
Date Posted: Jan 31 2011 at 12:49pm
Hi and Welcome April:
I was stage 3 (with lymph node involvement)  when diagnosed in 2007, and have had 2 recurrences since, but as of last fall I am cancer free!!!  Having more reconstruction this Wednesday.
I did have 3 months of chemo before my bi-lat mast. then radiation, then 4 more months of chemo after.  Even with the radiation I had a recurrence in a lymph node on the radiated side.  Then a year and a half later another lymph node on the opposite side.  The dr left radiation up to me on the opposite side.  I did  not do radiation again.  Honestly I would get a 2nd opinion regarding the radiation, especially if you do not have lymph node involvement.  Radiation is not easy and it makes reconstruction difficult. 
 
I agree with the genetic counseling. 
 
As far as the chemo goes, yes you can do it. 
 
Good luck, and God Bless,
Coreen


Posted By: jody
Date Posted: Jan 31 2011 at 12:56pm
Hi April, I was diagnosed with stage 1 with no node involvement.  My doctors had me do surgery 1st(this is when they determined no node involvement). Then I had 6 rounds of a/c chemotherapy and then about 33 rounds of radiation.  I will be three years out from diagnoses this April!  I am just letting you know what I ended up doing so you can compare with others.  You will find with TNBC that there is no real standard on treatment yet for us.  I know women who were the same stage as me who also where given a taxol, I was not.  It is good to get several opinions and see which option you feel is best for you.


-------------
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California


Posted By: jody
Date Posted: Jan 31 2011 at 12:59pm
Hi again, I forgot to mention that I had a lumpectomy (although If I had known more about triple negative back then, I would have had a mastectomy).  And thus far, thank the lord, NO reoccurance.

-------------
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California


Posted By: Charlene
Date Posted: Jan 31 2011 at 1:15pm
I was diagnosed Stage 1 TNBC in 3/10.  Even before surgery (lumpectomy & re-excision) both my surgeon and oncologist predicted no lymph node involvement and they were correct.  So, I think they have a pretty good idea from the beginning.  I had chemo after surgery, 4 rounds of Taxotere & Cytoxan.  After that, 30 days of radiation.  I had no problem with radiation at all.  I had the BRCA testing even though I am 60, because I believe they are learning more about differences between those who carry the genetic mutation and those who don't.  I also wanted my daughter to have this information for the future.  So far, no sign of recurrence but I guess the possibility of that is something we all have to deal with for the rest of our lives.  The best of luck to you!

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED


Posted By: April-NJ
Date Posted: Jan 31 2011 at 2:14pm

Wow Thanks Ladies, regarding Rads, do you only need tht with Lumpectomy as that is what I had thought? I am doing Bi Lat Masc so I am assuming no Rads, but is TNBC a different animal and needs rads as well, even if you do a Bi Lat Masc?

Thanks! 
 


Posted By: April-NJ
Date Posted: Jan 31 2011 at 2:18pm
Oh and to the age question of 43


Posted By: April-NJ
Date Posted: Jan 31 2011 at 2:19pm
Oh and YES I am doing the Genetic testing schedule for tommorow at 2pm.


Posted By: Charlene
Date Posted: Jan 31 2011 at 2:23pm
I think that is the general rule, either mastectomy or lumpectomy/radiation.  I'm sure there are exceptions, though.  I had a friend who had one positive lymph node and the oncologist wanted radiation even after a mastectomy.  She eventually declined.

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED


Posted By: zoomommy2
Date Posted: Jan 31 2011 at 2:52pm
April,
You are fortunate to be on this forum before treatment/surgery.  I didn't have nearly as much info then as I do now.  With a lumpectomy you have to have radiation.  With a mastectomy and negative nodes, you usually won't have to unless the tumor is 5 cm or larger.  I had a 3cm tumor and no nodes and wanted to avoid radiation, so that entered into my decision to have a mastectomy.  You won't know for sure if you would need radiation until after surgery.  Best of luck with your surgery and treatment, whatever it turns out to be.
Lee in Denver


-------------
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda


Posted By: Lillie
Date Posted: Jan 31 2011 at 3:20pm
Dear April,
I was diagnosed in June 2006. I had a left mastectomy (my choice). I had a sentinel node bioposy (3 nodes removed). The surgeon said the preliminary results on the nodes were (all clear). But, upon further (FISH) testing at a different lab micro cancer cells were found in one node. A week later I had an axillary dissection and 9 more nodes removed. Same (FISH) test was done on those and no cancer was found. I eventually received a Stage IIb from the oncologist. 2cm tumor, 1 affected node, Triple Negative = Stage IIb for me. I entered a clinical trial. It was 4 DD adriamician and cytoxin every other week and then 4 DD taxol and gemzar every other week. I DID NOT have radiation based on location of tumor, mastectomy, clearance of tumor from chest wall during surgery. A lot of ladies do have radiation even with a mastectomy. (With a lumpectomy, radiation is almost always given.)
My treatment was pretty (standard of care), except the gemzar was added as part of the trial.
Good luck with what you choose. Keep posting and we will help all we can. I am approaching 5 years since diagnosis this June 9th.

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


Posted By: Karen Monique
Date Posted: Jan 31 2011 at 3:53pm

Hi there

I'm a newbie to this whole experience, as I did my mastectomy on December 7, 2010, 2 weeks after receiving my diagnosis. I'm also stage 1, TNBC. The doctors have ruled out radiation for me, but it's highly likley I will have to undergo chemo with taxotere. Is there anyone on this post who has not done chemo or radiation after mastectomy and is doing very well years later?
 
Karen


Posted By: jody
Date Posted: Jan 31 2011 at 4:24pm
Hi Karen, I am not a doctor, however, myy understanding about this particular kind of cancer is that it can not only travel thru the lymph nodes but can also travel thru the blood, thus one of the STRONG reasons for Chemotherapy. Even if your lymph nodes came back clear it can still be there even @ stage one.  It is basically become the standard for any stage of TNBC for that reason and also bcuz there are no other drugs currently available for us TN's like Tamoxifan and such.

There is more info in the resource section of this foundation that are very helpful, plus alot of women on this sight who are alot more knowledgable then I am.  Of course YOU have the ultimate say in your treatment, but chemotherapy is not as bad as they say it used to be and it ups your percentages, it's duable!  Take care and let us know how you are doing!


-------------
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California


Posted By: trip2
Date Posted: Jan 31 2011 at 4:58pm
Hello April and welcome,
 
A couple of other things you might find helpful...click on the Resource link near the top of the page.  There is a helpline, info re tnbc and other items that might help in your research.
 
Also I would suggest you begin to get copies of your test results such as labs, surgeries, path, etc., so that you can start a file at home.  This is handy for going over when you feel comfortable and in pulling info you might want to learn more about tnbc specifically for your situation.
 
Many of us during the early days after a dx have found taking a mild sedative such as xanax really helps calm the nerves.  It's a very emotional time when one doesn't realize what all is going on and what is to happen.  It is normal to be anxious.  Even using something to sleep can be helpful.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: sue
Date Posted: Jan 31 2011 at 6:57pm
Welcome April. Handshake 

You will get so much helpful advice and feedback here from very caring, concerned people.  

See my info. at the bottom of my post for my diagnosis, etc..  I had a lumpectomy with a re-excision and sentinel lymph node biopsy of 8 nodes, all negative.  I have had 3 treatments of Taxotere and Cytoxan chemotherapy with one more to go February 9 for a total of 4. This will be followed by radiation x 33 treatments 4-6 weeks after the last chemo. 

I am so glad I have one place for everything related to this issue.  In the beginning my head was spinning and it helped to have the reports and everything in one place to refer to time and again.  

Wishing you the best with everything.  

Sue 






-------------
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          


Posted By: abcmom
Date Posted: Jan 31 2011 at 7:11pm
Welcome April, sorry you have need to be here, but glad you found us before surgery, etc.  I didn't find this site until after mine and everyone on here is so knowledgable and like a family, so caring and loving.  I was stage II with no node involvement.  However I did not know I was TN and my stage until after my mastectomy.  I chose mastectomy because of my age and family history and the size of my tumor compared to my breast size.  Please do not hesitate to ask anything.  We are here for you!

-------------
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11


Posted By: April-NJ
Date Posted: Jan 31 2011 at 7:27pm
Hi Ladies Thank you for all your replies, still pretty down in the dumps, but like to hear all the stories , In regards to Jody comment, is that true, it can travel throgh the blood so even if your nodes are clear it can still be elsewhere, I have never heard that?
The Doc explained to me that having TN shouldnt be viewed as being bad or being good, it just means there is a particular way to treat this type of cancer and YES I would need chemo, as before she had mentioned "I may not" have to , but now def yes, and I wouldnt need to take a pill everyday ((tamixofin).  She also said she still believes its early stage and no node involvement with that said and me doing a Bi-Lat where she thinks is a good choice, I will be no more at risk then someone with any other kind of BC as I am doing a Bi Lat if no nodes are involved,  but wont have the luxury of taking a pill veryday to prevent reoccurence, so by that I assume I will be going to the doctors ALOT for follow ups?
Thoughts on what she told me?
Also on what Jody said about being in the blood?


-------------
Diagnosed 1-14-11- Stage 1 -TNBC -Grade 2 -1.5 cm tumor R Breast - Nodes Clear ,BRCA-Neg -Dbl Mascetomy 2-21-11 w/ Immed recon (expanders) 3 -DD A/C - 12 weekly Taxol Done 9/8/11


Posted By: April-NJ
Date Posted: Jan 31 2011 at 7:32pm
@ Karen 2 weeks after diagnosis! wow, Its Been 3 weeks for me and still no surgery appointment im going crazy here! Calling Doc tommorow to tell them to get moving my Plastic Surgeon said he will do what it takes to get me in asap even if he has to do an afternoon surgery, but still no word from the Breast Surgeon who has told me they are working on it! auughh the waiting is the worst I just want this ticking bomb out!
How long did you ladies have to wait for surgery from DX? also I am doing immediate Recon so they may be delaying a bit, anyone here do immediate recon, I am doing TRAM Flap 


-------------
Diagnosed 1-14-11- Stage 1 -TNBC -Grade 2 -1.5 cm tumor R Breast - Nodes Clear ,BRCA-Neg -Dbl Mascetomy 2-21-11 w/ Immed recon (expanders) 3 -DD A/C - 12 weekly Taxol Done 9/8/11


Posted By: trip2
Date Posted: Jan 31 2011 at 7:50pm
Here is one link showing cancer can spread not only thru the lymph nodes but through the blood also.
http://en.wikipedia.org/wiki/Metastasis - http://en.wikipedia.org/wiki/Metastasis
 
I had a couple of links for this info but don't have them anymore.  You might check the TNBC News/Resource section, there you will find alot of info.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: April-NJ
Date Posted: Jan 31 2011 at 7:54pm
I really didnt want to know.....guess I shouldnt of asked......

-------------
Diagnosed 1-14-11- Stage 1 -TNBC -Grade 2 -1.5 cm tumor R Breast - Nodes Clear ,BRCA-Neg -Dbl Mascetomy 2-21-11 w/ Immed recon (expanders) 3 -DD A/C - 12 weekly Taxol Done 9/8/11


Posted By: 123Donna
Date Posted: Jan 31 2011 at 8:30pm
April,

Hello and welcome.  What Pam said is true, unfortunately.  It's one of the reasons why chemo is almost always recommended for TNBC, even with negative nodes.  The good news (I guess) is that TNBC usually responds well to chemo.  We don't have any adjuvant therapy like Tamoxifen that will work on us. 

Have you had the chance to review the brochure about TNBC?

http://www.tnbcfoundation.org/tnbcguide.htm - http://www.tnbcfoundation.org/tnbcguide.htm

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



Posted By: jody
Date Posted: Jan 31 2011 at 8:56pm
Hi, yes, but again i am NOT a doctor, but my understanding is that TNBC is also vascular which means it can either travel thru the lymph system as well as the blood stream.  That is one of the reasons they hit it hard with Chemo.  Anyone with more knowledge can chime in here if they can give more info then I am.

Also, most women when finished with treatment usually see their doctors about every three months for 6 mo. to a year and then every 6 months for a year or so.

I am so sorry that you are having to digest all this, but we on this site have BEEN THEE, so feel free to lean on us for as much support as you need <3


-------------
diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08       La Verne, California



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