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My Mom was just diagnosed...need a little help

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CancerInTheHouse View Drop Down
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    Posted: Jan 05 2012 at 8:09pm
My Mom was just diagnosed with TNBC and honestly I’m all over the place. I’m scared because I am reading so many conflicting things about the survival rate.  I’m sad because I know this is going to be a long tough road for her and it breaks my heart to think that she has to go through any of it. I’m mad because I don’t understand why this has happened and it's making me question my faith in everything. I’m full of anxiety because I feel like if I can just learn enough, donate enough, do SOMETHING enough that I can make it better and by not being able to I am a failure as her child. I feel terrible because she’s on the other side of the country and I don’t know what I can do to help. With all of this, what makes me feel the worst is that I feel like I don’t have the right to have any of these feelings because I need to be strong for her. How can I spend time worrying, or being scared, when my focus needs to be on her, what she is (and will be) going through, and how to make life as great as possible every single day? Even re-reading this it’s all about me – my feelings, my problems – I feel so selfish. I’m trying to be read as much information as I can, to be as well informed as possible – but I’m overwhelmed.

For those of you with TNBC, what could your children do to help make things better, or easier, or just brighten your day? Thanks in advance for any replies.
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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: Jan 05 2012 at 8:51pm
Hello Cancerin The House,
Could you give us some of your mother's stats, such as, size of tumor, stage, lymph nodes involved, grade, and so on.... This would help us give you some answers.

As for helping your mother, please know that all of your feeling are legitimate and you are entitled to them. But, communicate with your mom. She needs your support in what ever way you can give it. Send her cards.
My daughter was with me for my surgery but I didn't see her again until 5 months later after I had finished my treatments. She called, she sent cards, just to let me know how much she loved me. I really didn't need her physical presence every day during my treatment. She needed to be with her two teen-age daughters and husband.
My grown son lives about 30 minutes away and I saw him off and on. He would come and take me to get my treatment, or bring me lunch at the infusion center, or take me home afterwards. To be honest, I always felt that I had to put up a front for him because I didn't want him to worry (or so I thought). Just a few thoughts about how I handled the situation.

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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overwhelmed View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 8:51pm
Cancerinthehouse,
I am so sorry. What a wonderful daughter you are. You are already there for her. TNBC is scary and it all seems to be gloom and doom. But, even though it is a more aggressive bc, most survive it. That you already know that this isn't a lumpectomy and radiation will help her so much. Most never realize that TNBC is a bit different. That you are here educating yourself on TNBC is what she needs most.  I think the best thing you can do now is help her map a course of treatment. Once she starts that is the path she will likely stay on. Where in NC does she live? Lisa Carey at UNC is one of the top oncs in TNBC. Imaybe your mother can go to her.

One thing I would auggest to everyone with TNBC is to treat it aggressively. Dose dence with taxol first seems to be the way to go. I think radiation is necessary regardless of stage and node involvment. So, even with matectomy go for chemo and rads. I am not a dr, but I think we should be as aggtessive as possible with TNBC.  It doean't behave like most breast cancers, so treat aggressively even if caught early.  That's what I woulddo if i knew then what I know now.

I hope all goes well for you mom. You are here, soitMs clear you are already going to be the support she needs as she fights this. 

Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2012 at 9:01pm
Lillie is so right, we try to protect our family, so talking about our fears is difficult. Let your mom know that no matter what, you want to know her what she her fears.  If she can turn to you no matter what, she will have support you may never understand the importance of. We often donMt have the support, and I've found peopleare so anxious to move on, they never understand that TNBC is different, and it takes longer for us to move on.
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2012 at 9:12am
Hi CITH,
My response is a little different.  When I was diagnosed my husband and my daughter, who lives near, were devistated.  I'm not saying they shouldn't be but I needed them there for me at that time.  I said so and they found a caregiver support group that let them be present with their fears without being paralyzed.  When they were crying evertime they came in the room, I felt like I had to take care of them.  It was such a relief when they could say, "what do we need to do next".  I don't want to sound harsh but when I saw them in so much pain, it broke my heart. I don't think they could have just hidden the way they felt.  They needed to get past their fear also.  When they could do that, they were in a place where they could really help me.  I hope this makes sense.
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wade Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2012 at 11:14am
Hi CancerInTheHouse,

My wife was diagnosed in May of 2011 - we have three daughters ranging in age from 22 to 27, and they expressed many of the same feelings to me that you talk about in your post.  Our eldest daughter felt especially bad, as she lives a fair distance away.

My wife appreciated phone calls, just to chat. But she wouldn't always answer the phone, even for her kids. She would just be too tired to even talk on the phone. So don't feel bad if you call, and she doesn't pick up.

She also liked to get cards - not necessarily a get well card, but just a piece of old-fashioned snail mail seemed to brighten her day. 

That is all I can think of right now.  My wife will be finishing up radiation next week, and we hope this is the end of the cancer treatment. You may take comfort in knowing that many women with triple negative breast cancer have an excellent response to treatment. My wife's tumor was fairly large, roughly large walnut sized, and after chemotherapy there was no evidence of the tumor (determined by pathological exam of lumpectomy).

Here's hoping your mom's treatment works great, and she has an easy time of it.

Best regards,
Wade
  
Wife DX 5/2011@52 2.5x3.1cm;6/2011 DD A/C 4x,Abraxane 4x; Lumpectomy, SN biopsy 10/2011; 10/27/2011 NED; Rads start 11-22-2011, Rads fin 1-11-2012; 10-2013 NED; 07-18-2014 NED; 08/07/2015 NED!

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Post Options Post Options   Thanks (0) Thanks(0)   Quote CancerInTheHouse Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2012 at 1:39pm
Thank you guys so much for your posts! My Mom's tumor is 3cm - the grade and the stage will be determined after they remove some of her lymph nodes next week and test them (the needle aspiration and the PET scan were clear, but they want to make sure). She's getting treatment at UNC, but I haven't gotten a list of her doctors yet (will do so soon!). She will be starting weekly chemo at the end of the month - but we won't know what type until after the end of next week.


You know, I didn't really understand how different TNBC is until I started reading this forum - my friends and co-workers that know about my Mom keep telling me that their friends/family with BC have "just taken pills for their chemo" and it's been fairly easy....they just don't understand that all BC is not the same - it's frustrating but considering that two days ago I had no idea that there was a difference I can hardly be upset!

I remember the look on my Mom's face when I started crying when they first talked about the possibility of cancer (I happened to be in town for the holidays) - like she was so sad I had to go through this. I want to do everything in my power to not ever cause that look again and I want to be a source of strength for her....so thank you so much for all of your feedback. I'm going to find a caregiver support group so that I can learn how to be the kind of support that she needs the most.

Wishing everyone strength, courage and confidence for each new day!

p.s. I've been buying all the cards I can find, everywhere I go, so that I can start sending them - I think I'm single handedly keeping these cards stores in my area in business! I'm also trying the gather things together to send a care package every few weeks - just as another pick me up.

 


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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 06 2012 at 2:33pm
Cancer in the House,

UNC is an excellent cancer facility.  Dr. Lisa Carey is very knowledgeable in Triple Negative Breast Cancer.

Other suggestions for your mom.  She may need some help with housecleaning and cooking while going through chemo.  There is a service that provides free cleaning (once a month for 6 months) for breast cancer patients.  I know you're out of town, but maybe gift cards to some local restaurants where they could get take out on the days your mom isn't feeling up to cooking.

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 CancerInTheHouse Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2012 at 6:37pm

Thanks so much 123Donna! Her doctor is medical oncologist is Dr. Carey Anders – have you heard of her?

I love the housekeeping idea and the gift card idea is brilliant! :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2012 at 7:33pm
Yes, I've heard good things about Carey Anders. It sounds like she's in good hands and at a good facility.
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 Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 06 2012 at 8:27pm
Cancerinthehouse,
Sorry to step in here, you are a wonderful support from the start that I can see here.
As far as other resources? Google breast cancer coalitions in moms area, you can call and be her advocate that way. The typical documentation that these orginazations need is a letter from her treating doc that she is under there care. Very little effort and a great reward. House cleaning, meal delivery, rides to treatment, even copayments that have been accumulated.
Even googling breast cancer support in her area or in general can pruduce an array of non-profits that can help out in many ways.
Luckily I had a couple of my close friends start doing this stuff without my knowledge.
 
Keep up the good work, even you deserve your own pity parties now and then. Even joining in on hers can be theraputic for her and you both. Perfectly o.k. and acceptable, and very cleansing, ya get past the tears and then look for the funnies and laughter for even a little while. All my best @ being strong to you and you mom.
 
Natalie
 
P.S. sorry if I repeated or babbled. Chemo brain sucks, but it is clearing =]
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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