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Oncologist said it will come back

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sweetjolieblon View Drop Down
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    Posted: Jan 15 2012 at 10:31pm
I have Invasive Ductal Carcinoma but grade 1 as it was not in the Sentinel Node.  It was small, 0.7cm.  Grade 3.  Triple Negative.  The first day I saw my Onc he said right off the bat "Triple Negative is bad." but I already knew that.  He said it comes back and he stated then "and it WILL come back."  That remark startled me.  I was started and completed Taxotere and Cytoxan 6 cycles a cycle every three weeks.  I was fortunate and did not have any really serious side effects mostly nausea, hair loss.  I have had bilateral mastectomy (March 2011)and reconstruction.  But it haunts me what he said so infatically "and it WILL come back."  My surgeon tells me that should it return it will probably return along the suture line and I check religiously.  My Onc follows me and also my surgeon.  I just cannot get this one remark out of my mind.  How do you deal with this.  Sometimes, deep in the middle of thed night I wake and find it on my mind.  I try not to think about it and not dwell on it but no matter what I do it creeps in.  Any advice?
Joan-Diagnosed March 2011-IDC Grade 3 Triple Negative, Sentinel Node Negative,Lumpectomy margins not clean, Bilateral Mastectomy with reconstruction
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2012 at 11:20pm
Dear Sweetjolieblon,

I am sorry to write this but your oncologist is sadly misinformed in my opinion and you should get a second opinion. Since I am not mentioning your oncologist by name, I am comfortable saying what I am saying, so please don’t tell us his name.

TNBC often comes back but it doesn’t always come back. So, anyone who can say something so inaccurate would not be my choice to be my advisor and anyone who also predicts where it will come back....Simply, outrageously, incredible.

I thought a lot about using other words but this physician has done you a great disservice and I don’t think he is entitled to a polite reply.

I don’t know if you have the ability to travel to another center but I would urge you to do so...

I am sending you my contact information and would be happy to talk with you, if you wish..

In the meantime, please ask him to give you the scientific study reference that backs up his ridiculous statements.

Please don’t let his words make you crazy with worry. Again, I am not saying it will not come back but hopefully it will not. My daughter had TNBC 7 years ago and she is cancer-free. Hopefully it will never come back for her and for you.

TNBC can be very sensitive to chemotherapy and once you pass the 3-5 year mark you actually have a better chance of long-term survival than other forms of cancer.

good luck to you and don’t let this doc ruin your life.

all the best,

Steve

p.s. the place to get a second opinion would be a major cancer center (NCCN or NCI) that have experts on TNBC. I believe we can help you find someone.


Edited by steve - Jan 15 2012 at 11:22pm
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
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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: Jan 15 2012 at 11:26pm
Wow, what a thoughtless oncologist.  Sure there are many that have a recurrence, but if you read some of the long term survivor threads, I think there are many more that survive without any recurrence.  You had a very small tumor, chemo and mastectomy.  I think you treated it very aggressively.  I'd work to put the careless words of one person out of your mind and replace it with all the positive affirmations.  Have you considered a class on mediation?  Many cancer support communities offer free programs.  Maybe they can help train your brain to acknowledge the statement, but then teach it to release it (harmful thoughts) and allow it to flow out of your body where it can do no harm.  We suffer so much with anxiety and worry about this disease.  I just wish people, especially medically trained, could realize how they're offhanded statements affect us.  How would they feel if they were in our shoes?  I don't know if this helps, but want you to know that I understand.

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 cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2012 at 11:27pm
sweetjolieblon, 

Even deep in the middle of the night when you wake up and are afraid you are not alone. I have been up late and posted here about my thoughts and fears as well.  What a thing to say to new patient! My husband and I had a similar experience when the first surgeon i saw called my husband at work and told him i did not have long to live and more than likely was already Stage 4. There are many women here still living with and without recurrence and i have to believe that offers us hope. I know others will respond to your question with some good thoughts and what is helpful to them. 

All the best, 

Blair

Lump found 11/08 @51
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad., No recon. NED 1/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CindyKS Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2012 at 7:59pm
I do not nearly as much knowledge as many of the people on this site, but that does not seem correct to me.  I certainly was not told that.  Please take their advice and get a second opinion.

Cindy   
Age 42; Dx 4/10; IDC; 2.1cm; lumpectomy; ACx4-taxolx4 every 2 wks; Radx37, BRCA 1/2 neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2012 at 9:18pm
I likewise cannot believe that your oncologist made such a statement.  In addition to getting another opinion, please check out "Hormonenegativeblogspot.com."  There is a lot of encouraging information there--the person who manages the site is a 5 year survivor of TNBC.  When I was diagnosed, my oncologist showed me information from Adjuvant Online.  It stated that with chemotherapy, I had 75-80% chance of being alive and cancer free in ten years.  I understand that that is not a guarantee, but it certainly didn't say that I had a 100% chance of recurrence either.  I wish you the best.
Charlene
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2012 at 9:45pm
Dear SweetJoli,
It is uncanny how phrases (good and bad) can lodge in our minds and cause us stress or peace for years. I even remember some from my childhood.
"All You Have Is Chemo" rings in my mind still today. This was said by my oncologist over 5 years ago and it was a good statement. He wanted me to realize the seriousness of my situation and wanted me to take care of myself so that I would have every chance for the chemo to work and work well.
But; your oncologist was damaging your hopes and spirit by making such a negative statement to you.
Mine may come back, but I am almost 6 years from diagnosis. I hope you can find the strength and help to be able to 'get beyond' those words said by a very insensitive doctor.

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote janet c. Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2012 at 10:53pm
Sweetjoli,
I just want to tell you that even though tnbc is aggresive most people survive. The fact that your oncologist not only told you that you will definitely have yours come back and where it will come back seems crazy unless he somehow knows the future. If that is the case maybe he could tell you what lottery numbers will be coming out next drawing so that you could win. Please try to just live your life and be as happy as you can. Nobody knows when they will die we could get killed in an accident tommorow so let's enjoy every day. I wish you a very, long, happy,HEALTHY life.
Janet
dx 12/08 @47yrs.old TNBC stage 2a grade 3, 2.1cm. partial mastectomy sentinal node negative BRACA negative Cytocan/Taxatere x4 radiation 36 or 38rounds
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2012 at 7:27am
Dear Joli,
 
Wow...I can't believe what an insensitive, un-knowledgeable person, I hesitate to call him a doctor, he is.
 
Yes, some do have recurrences that is a fact. But it is not a fact for everyone. You've been very aggressive in your treatment. I pronounce you cured...just kidding...but I can say that as well as he can say you will have a recurrence. We both used the same criteria...stupidness.
 
I would also suggest that you are stage 1 due to the size of the tumor. Anything under 2cm is considered stage 1. I am stage 2 because my tumor was 2cm and I had no node involvement either.
 
Steve, is that right?
 
So sweetie, relax and please take Steve's advice. You do need another doctor and Steve is our Advocate Angel. He has helped so many on this site. I wish I were here at the beginning of my treatment, I could have used his expertise.
 
I would also like to invite you to join us at the Spiritual Support thread if that is something you might be interested as well.
 
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 12:22pm
I, too, am appalled that your oncologist would make that statement to you. My physicians never sugar-coated my diagnosis, but they certainly gave me the information that showed me that this diagnosis is treatable and has a good chance of survival.
If you decide to stay with your current onc, I would want you to have a frank discussion with him about the "statistic" he gave you. My doctor showed me studies and gave me direction to find information that completely refutes what your doctor told you. If he cannot do this, or if he is adamant in his opinion, then I would seriously consider finding another doctor.
I know what you mean about certain phrases coming back into your mind over and over. I am sorry this is happening to you. If he was your only source of information, then yes, you would have reason to worry. But you found this forum. You have done your own research. And you KNOW now that he is wrong.  When the unpleasant thoughts come to you, push them away. Let your own common sense and knowledge empower you.
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 05/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lee21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 12:34pm
Someone on this thread mentioned Adjuvant! Online for predicting recurrence and survival and the effect of chemotherapy.

Just a word of warning:  version 8 only divides patients into hormone receptor + or - and does not include Her2 as a variable. Version 9 is supposed to take care of that.

Also, everything you read in journal papers or news articles are population based -- that is, how a group responds, not individuals.  In medicine, you cannot make sweeping generalized statements.  If you do, you will be proven wrong most of the time. Even conclusions from well-controlled, well conducted clinical trials apply to a group. There are always subgroups that do better or worse than the population average.
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MsBliss Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2012 at 6:28pm
You have to understand that most doctors are "fallible".  They are not gods, nor are they anywhere near perfect.  They do the best they can.  I consulted with 8 oncs formally, and one informally for a total of 9; one of them my bil, and within that group, I met some brilliant ones, and not so brilliant ones.  Even one of the most respected and lauded oncs I met with made a pretty dumb comment to me:  "The immune system has nothing to do with breast cancer."  I almost laughed in her face.

Look at my siggy line---my tumor was twice your size, and I did not have chemo or rads.  I just passed my three year surgical anniversary on March 24th.  I am enjoying very robust health; I know not to be arrogant, but I believe so far, so good.

The same goes true even for my veterinarian.  I don't give ANYONE the power over all information or action anymore.  I question, double check, and make proactive decisions about all health related matters for all of my loved ones.  I've learned this the hard way.

Why would you give anyone such power over your mind?  I say take away that white coat and see him as just a misinformed doctor who may have been overworked or just plain tired.  Purge those words and the image of him from your frontal lobe and move on.  Your cells do not need this added stress.
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CAfree12 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2012 at 4:01pm
As a newly diagnosed TNBC patient, and and oncology nurse, I've seen the stats and understand why the oncologist mentioned believes in their gut that this will come back.  I've done all I can to reduce my recurrence risk and was stage 1c - my oncologist knows how aggressive TNBC is and intends to follow me closely the next three years - after that she says my chance for full cure is very high!!  I/m not 3 months post chemo and truly believe I am cancer free!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2012 at 8:14pm
Hello CAfree12, (Gayle),
 
Welcome to the TNBC site, although none of us want to be here.  But since we are, you already know that this is a Great Support System.  I am sure that many who read your post will be totally encouraged.  If you, being an oncology nurse, can have the mindset that you have, it opens the door of many minds to be encouraged instead of discouraged.  I am now 6 years beyond diagnoses and feeling pretty good.  The first 3 or 4 years do hold more of a challenge to be positive, but I've got a feeling you will be around for a long, long time.
 
I want to let you know about a Spiritual Support thread that is active on this site.  Please stop by and visit, and even post if it something that interests you.
 
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 26 2012 at 11:50pm
Jolie,
How thoughtless for your onc to say something like that I find this very disturbing,I would not be able to get those words out of my mind either, yes tnbc is aggresive we all know that and my onc never did sugar coat any thing but he was always very positve and told me to think POSITVE THAT IT HELPS ALOT HAVING A POSITIVE ATTITUDE. Please consider finding another onc because you will be spending many years with your onc you don't one that is doom and gloom you will never be in the right frame of mind to heal you have to be comfortable with your onc or it will never work. Hope you are feeling well and good luck.
Hugs,
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Dec 02 2012 at 6:40pm
I DONT THINK DOCTORS THINK WHEN THEY OPEN THEIR MOUTHS SOMETIMES, I WAS IN SHOCK WHEN I WAS TOLD I HAD TN, ALL MY DOCTOR SAID IS WE HAVE GOOD CHEMO FOR YOUR LUNGS AND LIVER, SCARED THE CRAP OUT OF ME , I WAS STAGE 1 NODE NEGATIVE GIVE ME A CHANCE FOR PETES SAKE
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Dec 02 2012 at 6:41pm
MENT TO SAY ALL NODES WERE NEGATIVE
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