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sunrise View Drop Down
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    Posted: Apr 21 2016 at 8:33pm
Hi everyone
I just found out I have TNBC, BRCA neg, 1.3cm, grade 3.  No lymph node involvement that they can feel.  I went and saw my oncologist today, he said i'm in a grey area where there is no right or wrong way.  He said I could have a lumpectomy with chemo and radiation after or a mastectomy with chemo after or chemo before.  I have no clue which would be better.  He said the reoccurrence rate for either one of  them is the same.  I'm afraid if I get a lumpectomy it will come back in one or the other of my breasts.  I go to another oncologist for a second opinion tomorrow.  Any help from anyone would be very much appreciated right now.  Thanks!!
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 21 2016 at 10:10pm
Hello Sunrise,
So sorry about your diagnoses.  You are at a good place for support and help. 
1. You could have a lumpectomy, chemo and radiation.
2. You could do chemo, then surgery and radiation.
3. You could do mastectomy, chemo and possibly radiation. 
 
To be honest, grey area, is an uncomfortable phrase to me.  Triple negative is such an aggressive and unpredictable cancer that lots of us get mastectomies, chemo and radiation. 
 
If you are doing reconstruction, or have involved lymph nodes, that plays into what decision you will want to make.  I know I have confused you even more, but hopefully have created some food for thought.  Others will be along to expound further.  Good luck and keep posting.
 
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 sunrise Quote  Post ReplyReply Direct Link To This Post Posted: Apr 21 2016 at 10:28pm
Hi Lillie
Yes grey area is very uncomfortable for me to hear.  I will have reconstruction, don't know if any lymph nodes are involved yet or not.  I had my mind made up after the diagnosis that I would do a mastectomy and chemo but when I left the Dr's office I was more confused then ever.  Its nice to be able to talk to other people with TNBC.  Thank you!!
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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: Apr 21 2016 at 10:58pm
Hi Sunrise,

Getting a second opinion is a great idea.  Have you been tested for the BRCA gene?  Have you had a breast MRI?  Many times when you are give the options, it comes down to a personal choice regarding lumpectomy vs mastectomy.  For some, a lumpectomy is the right choice and others it's a mastectomy.  How do you feel about the surgery options?  Is there one that feels like a better choice for you?  

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 KristyLee Quote  Post ReplyReply Direct Link To This Post Posted: Apr 21 2016 at 11:12pm
I think it's also worth asking if neoadjuvant chemo is a possibility. That's where you have the chemo first, then the surgery. One huge benefit is that you get to see exactly what the treatment response was. Did the chemo kill it entirely? If so, perhaps you wouldn't need radiation. That was my experience. There is a great peace of mind knowing that the chemo wiped the tumor out. On the other hand, if there is residual cancer, you know and can maybe take additional steps. Personally, I'm very glad that I was able to have neoadjuvant treatment. 

EDIT: I just re-read and saw that neoadjuvant is one of your options! Sorry I missed that. :)


Edited by KristyLee - Apr 21 2016 at 11:14pm
Dx 09/14 Stage 2 TNBC, Grade 3, 3cm, no nodes. BRCA1+ Neoadjuvant treatment: 4 AC/T, 12 Taxol, 4 Carboplatin. BMX Diep Flap Hyster 3/5/15. Path report PCR, no radiation advised.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunrise Quote  Post ReplyReply Direct Link To This Post Posted: Apr 21 2016 at 11:44pm
Thanks for all the input lady's.  all my genetic testing was neg so thats a plus. Thats what im having a hard time deciding is if I should so chemo first or after surgery.  My duaghter says first then you know how the cancer reacts but just thinking the cancer is there the whole time is the hard part.  

Sunrise
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunrise Quote  Post ReplyReply Direct Link To This Post Posted: Apr 21 2016 at 11:48pm
123Donna
I was leaning towards the mastectomy.  I got a call from the Dr. I was going to see tomorrow for a 2nd opinion but he has been on vacation and the flights out have been cancelled, so he may not make it back to see me tomorrow.  I hate to wait since this is such an aggressive cancer.

sunrise
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 9:22am
Hello Sunrise,
I wanted to come back and say that 'grey area' is where all of us began when diagnosed with cancer.  You don't have all the details.   You don't have a treatment plan yet.  You are in the fact finding mode and not sure which way to go.  We have all been there and we UNDERSTAND.
 
What I will say is, you want to hit triple negative breast cancer aggressively.  You want to feel in your head and heart that you did all you knew to do for a good outcome.  I know all the friends here on this site and your doctors will lead you to the best decisions.  My first instinct when diagnosed was a mastectomy and I don't regret it at all.  A lot of ladies go for double mastectomy, especially if reconstruction is in the picture. 
Good luck and let us know what decisions you make.
Love,
Lillie


Edited by Lillie - Apr 22 2016 at 9:22am
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 Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 11:04am
Hi Sunrise,

Lots of good advice here!  Sorry for your diagnosis.  I just passed one year since my diagnosis, and I promise, it gets significantly easier as time passes.  The first month was a complete whirlwind for me, but it rapidly calmed down after that.

It's important to note that the reason there's a grey area is that study after study has proven that some of these things are truly equivalent in terms of survival.  The two main choices it seems you need to make are:
1.  Neoadjuvant or Adjuvant chemo (chemo before or chemo after surgery), and
2.  Lumpectomy with radiation or mastectomy.

My understanding is that there is no proof that neoadjuvant or advjuant chemo is better in terms of survival.  However, I think there are a few pluses of neoadjuvant.  Sounds like you are familiar:  opportunity to shrink or even eradicate the tumor so that if you do have a lumpectomy, the surgery is made even more minor; the knowledge of whether the chemo was effective or not (this is a HUGE plus if you are lucky and have a pCR as it comes with loads of reassurance and positivity.  Speaking as someone who ended up with residual cancer, it can be a little less clear--the downside for me has been the crushing knowledge that the chemo did not get rid of all of the cancer.  However, I am still grateful for that knowledge, because there are some "bonus" treatment options at that point, that will hopefully improve outcomes, so I'm glad I can take advantage of that.  If I had my chemo adjuvantly, I wouldn't have known it was ineffective, and I wouldn't be taking my bonus chemo now that has the possibility of saving my life).  Other advantages include the possibility of participating in neoadjuvant clinical trials, etc.  It seems to me that more than half of the TNBC women who have been diagnosed recently pursue neoadjuvant (I think there has been a trend in this direction.....people who were diagnosed even just 3 years ago seem less likely to have done neoadjuvant).

As for the lumpectomy with radiation vs. mastectomy choice, clearly this is another personal decision, as ALL studies have shown these to be equivalent (for BRCA negatives).  So you shouldn't worry that you are being "less aggressive" if you go the lumpectomy route.  They are equal.  The radiation is proven to mop up leftover cancer, and you can feel good making either choice, knowing they have equal odds. (Obviously, if you have a concern about new primary cancers occurring, esp if you are BRCA positive, that's a different story).  There are reasons why for some people mastectomy definitely makes sense, even beyond the BRCA+s:  if the size of your tumor is large relative to the size of your breast, you are unlikely to get a good cosmetic result with lumpectomy.  If your tumor is multi-focal, lumpectomy may not work out.  If your tumor is located near the nipple or another awkward location, lumpectomy may not work out.  I'm sure I'm forgetting other circumstances where your doctors would advise mastectomy.  But if none of those are factors for you, you should feel free to make the choice you prefer, without worrying that one was a "smarter" choice.  Mastectomy is a major surgery, and you will see if you read these boards that many people have a host of surgical complications (and/or complain about long-term issues such as numbness, body image issues, etc).  Certainly the recovery is much more extensive.  But for some people, they just can't get past the mental thought that they "want the breasts gone", so it may absolutely be worth it if it provides peace of mind, even if the studies indicate that you should have the same peace of mind with lumpectomy.  I'm sure if we asked everyone about their choices, we could come up with a long list of pros/cons for each choice, but you can feel safe that if the doctors say your circumstance doesn't require one or the other, that either is an appropriate choice. 

Good luck with your decisions.  Once you have a plan in place, you will feel SO much better.

Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunrise Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 12:10pm
Tulips
Thanks for your reply, things have been a whirlwind these last couple of weeks so much information thrown at you at once.  I'm so glad I found this sight it helps reading everyone else's posts.  My brain hurst from thinking and trying to figure out what I want to do.  But I know I need to make a decision now so I can get it all moving and get rid of this cancer.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 1:15pm
Sunrise,

Tulips has given you some great advice and information.  The period between diagnosis and treatment is the most overwhelming time as you've just gotten this terrible news and you have all this stuff being thrown at you and you are trying to navigate through the world of cancer and treatment decisions.  It's amazing we can even function, much less make important decisions regarding our treatment.  Good luck!

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 sunrise Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 1:45pm
123Donna
Thanks, In my ideal world the Dr's would tell me exactly what to do.  I like my onc just wish he could tell me more about which direction I should go.  I don't think there is a Dr. in my area that only deals with TNBC. Tulips, congrats on passing your one year after diagnosis mark.  The Dr. said any direction i decide to go is equal to any of the 3 he told me but I keep thinking what if I make the wrong decision and there was a better direction to go then what I choose.  I'm usually a very strong woman and don't have difficulty making decisions but this decision is driving me crazy.

Jackie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 2:48pm
Hi Sunrise,
For sure this isn't an easy decision to make. As many have pointed out, some of the decisions are personal. For me, given that mine was not detectable by mammo, MRI or CT, and the large size of the tumour at the start,  it is a double mastectomy vs single. I am not comfortable going on with life after the surgery with 1 breast knowing how fast it grew in my left breast and that no diagnostic imaging could 'see' it despite it being the size of a baseball. You want to know that you've thrown everything at the TNBC at the start that you're comfortable with so that you don't wonder down the road 'well, if only I had.......". Listen to what the oncologist is saying, consider another opinion and then talk with those who are close to you that will support you. 

We are here to support you as best we can, in whatever we can too. Much strength,
The other Jackie
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunrise Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 3:35pm
Hi Jackie
Thanks for your input, Im leaning towards having them both removed just don't know if I want chemo before or after.  I see good sides to both.  This sucks!!  I love reading everybody's posts it helps me allot and clears my mind some.
Jackie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 3:56pm
Sunrise,

When I was dx in 09, neoadjuvant was mostly used for larger tumors, nodal involvement.  For early stage, surgery was usually given first, then chemo.  I've seen the trend the past few years towards neoadjuvant in all stages.  The advantage would be to know that the chemo was working and the tumor shrank or was undetectable.  The one disadvantage would be the chemo wasn't working on the tumor and it grows or spreads.  In that case, they could try a different chemo or proceed with surgery.  Maybe one question to ask your oncologist is if they know for TNBC patients receiving neoadjuvant chemo, what percentage did not respond and the tumor grew?  I'd be curious to know that percentage.

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 KristyLee Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 6:02pm
I asked that of my surgical oncologist during my first team meeting, how many early stage patients receiving neoadjuvant treatment had tumors grow or spread, she said she had only seen it twice in her career. 
Dx 09/14 Stage 2 TNBC, Grade 3, 3cm, no nodes. BRCA1+ Neoadjuvant treatment: 4 AC/T, 12 Taxol, 4 Carboplatin. BMX Diep Flap Hyster 3/5/15. Path report PCR, no radiation advised.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Minigerkin Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 6:07pm
Hi Sunrise - the ladies have given all great advice.  I know, they have guided and supported me with their wisdom!  Since node involvement is unclear - I would recommend as the advice above, get that second opinion and test for BRAC and get node biopsy.



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Post Options Post Options   Thanks (0) Thanks(0)   Quote sunrise Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2016 at 9:11pm
Minigerkin and Kristylee
Thank you!! Iam BRCA neg and they believe there is no node involvement. The Dr I had a 2nd opinion with had to cancel me today and can't get me in for a couple weeks. I do not want to wait that long so I will go with the dr I have I called him today and asked some question. I feel he put my mind at ease. I told him I would let him know Monday which way I was going. Thanks for all the input I will let you all know what I decide.
Sunrise
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2016 at 7:24pm
Hi Sunrise. There is a lot of info on here, maybe too much for you right now:
http://foodforbreastcancer.com/articles/patterns-of-recurrence-in-triple-negative-breast-cancer-patients

It does say the Triple Neg BC is more likely to recur in the other breast. <
Triple negative breast cancer survivors are also more likely to develop new tumors in the opposite breast (contralateral breast cancer).>

You might ask your doctor if it's a factor. My wife had a more aggressive TNBC in her other breast diagnosed last year and she says she wishes she had had a double mastectomy in 2008 rather than go thru (2) lumpectomies and she thinks it (TNBC metaplastic/squamous) could be a mutation from the BC in 2008 from chemo and/or radiation.
This is an extreme case I'm sure, and this cancer is only 1% of TNBC so you shouldn't worry.
The site also confirms that outcomes with lumpectomy are the same like others have said so well here.
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 Minigerkin Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2016 at 5:12pm
Sunrise - keep in touch and let us know what your decision is.  We are here to support you!
Minigerkin
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