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Sister Newly Diagnosed/Chemo worried

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LittleSister View Drop Down
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    Posted: Sep 02 2016 at 4:14pm
Hi Everyone,

Have been reading and absorbing so many of the posts on here for the last week or so. My  sister was diagnosed with Stage 1, TNBC .7cm/no nodes.   
The oncologist she saw is suggesting chemo AC/T.  My sister said the side effects are frightening from these toxic drugs, especially the one called, the red devil.  She is 59 and is worried about the cardiomyopathy from the chemo and bone pain and neuropathy from the Taxol, not to mention lung problems and the lifetime effect.    She asked her doctor, if she did nothing, what the prognosis would be and he said he really did not know.    He also said at this stage the goal of the chemo would be a cure.   
We've read so many frightening things about the treatment and right now there is no way to know if there are even microscopic cells any place else in her body.  We can't help but feel the chemo may be necessary at this point but also wondering about the risks?  I know there are many different scenarios but if anyone has anything to share we would greatly appreciate it. 
Much thanks and best wishes to all. 
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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2016 at 4:46pm
Hi there
Reading your post I can't help but remember feeling the exact same thing as your sister. It was overwhelming to find myself in a room with doctors and nurses all talking in a foreign medical speak about drugs and treatments that were so profoundly harsh. And then they would turn to me and ask what I wanted to do...was just overwhelming.

So here's a couple of thoughts. Tneg is, in the words of one of my mentors, a sneaky, aggressive, nasty disease that is in it to win.

Often I've seen here where a stage I is treated less aggressively, choices are offered and decided thinking that it won't be necessary to choose treatments as aggressive as if you are a stage III. Be very careful with that perspective.

Yes, the treatments are harsh on your body, but they are tolerable. That's where your sister and you come in. Your job will be to keep really good records of side effects, to communicate those side effects immediately and completely and to get your sister to learn to trust herself that she knows her body best and she does get to have a say in what happens.

Get the paper records of every test, every visit and keep them in a 3 ring binder. Check them, they are your friends and don't be surprised if you find mistakes. Let the doctor know of the mistakes, that's part of the teamwork!

Every side effect has been experienced by someone before you. There are medications, exercise, common sense alternatives that will be available.

I remember asking if I didn't do anything if the tumor would go away. My onc team said NO, and the next time I came in it would be all the harder and more complex to treat. I hate that I just typed that, but it's a truth I had to face.

It's great that you have found this site and everyone here will understand all the fears that are surrounding you and your sister now. And we'll be here for you.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2016 at 6:09pm
mainsailset, 
Thank you soooo much for your quick response and for sharing your wisdom and experience. Your suggestions are wonderful, a big help. Thank you for taking the time to read my post and respond with such knowledge and helpful information.  
You have eased some of our anxiety.
With Gracious Thanks, 
LittleSister
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Katdoll View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2016 at 6:16pm
I would encourage her to get a second opinion, preferably at an institution that is affiliated with National Cancer Institutes. I had stage I with a 1 cm tumor. My oncologist gave me two options for chemo. One was AC/T and the other was Taxotere+Cytoxan. She gave the survival stats for both. Survival states were high for both, but a couple percentage points higher with AC/T. My sister had a smaller tumor, I believe 0.7cm like your sister, and she was given the same choices but at her tumor size, survival stats were the same, so she did Taxotere+Cytoxan. Things could be different for your sister, but there information is there and she will be more empowered to make the decision that is right for her with better information.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tamara Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2016 at 9:54pm
We have all experienced that fear of the unknown.

I was diagnosed in 2014 with TNBC Stage 1, grade 3 tumor at the age of 49.

I remember listening to the chemo options as the oncologist patiently went over them then I asked "what if I decline all chemo?" I will never forget his response - you won't be here!

I opted for the best chance at beating this disease - the red devil and Taxol - as I have 4 children and my husband to live for.
Scared of the chemo and all of the side effects? Yes I was, however, the alternative scared me more. I knew I had to fight.

I kept a folder with all information from diagnosis to last treatment and all follow up appointments - this information is important not only for me but for our daughter.

Between treatments I kept notebook of questions to ask the Dr. about various side effects I was experiencing. Everything from headaches, watery eyes, runny nose to insomnia from steroids. None too big or too small to ask about.

The list of side effects is long but not everyone experiences every side effect. No two people are the same and our bodies react to the chemo in different ways. Looking back, my side effects were minor compared to others - I was even able to work most days.

I was fortunate to have a very caring, compassionate, professional medical team that I trusted wholeheartedly! The doctors and nurses listened whenever I had a question or a concern. It is important to feel like an individual patient, not just a number.

Praying for your sister as she begins this journey none of us want to be on! This is the best forum I found for support. There were no other TNBC patients at the chemo facility while I was undergoing treatment so I joined this forum to ask questions, for moral support and understanding.

Looking back, I would not change my decision to fight this disease with the strongest medicine that gives me the best chance of long term survival.

God bless,
Tamara
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2016 at 10:24am
Thank you Katdoll and Tamara,  Your input, information, suggestions and experience is greatly appreciated. It is all a huge help.  I am so glad I found this forum and I am humbled by the kindness and willingness of all of you to take time from your lives to respond.  
With gracious thanks and many blessings,
LittleSister
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Post Options Post Options   Thanks (0) Thanks(0)   Quote barrycarrot Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2016 at 2:56pm
Little Sister, I was stage 1 with a  small tumor as well. I did the ACT treatment. I tolerated everything extremely well. Some do, some don't. The worse part was losing my hair. I FELT good but looked sick. It grows back though. I weighed my hair vs. my life - pretty easy choice for me. And it was all worth it - chemo killed it and I had no evidence of disease afterward. I will pray the same for your sister. Hugs!
Age 38, DX: 12/10/15 Stage 1 TNBC, BRCA-, 7mm tumor in left breast, no nodes, ACT Chemo 1/4/16 - 4/15/16, Lumpectomy 5/16/16, PCR (Praise God!), radiation 6/22/16 -8/3/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2016 at 10:03pm
Thank you, barrycarrot for posting and sharing your experience. That's encouraging! So happy all went well for you!  We will keep you in our prayers for continued good health.Thank you for praying for my sister. 
So far she did one chemo on Sept. 19th and all went well. She had no side effects, except yes, her hair just started falling out. Her second chemo is this Monday already..hope the good streak continues and the outcome is as good as yours, that's the plan!
Little Sister
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2016 at 9:44am
Little Sister, when I read your initial post, it reminded me of how I felt when I received my diagnosis almost a year ago now. It was a whirlwind of information that I was expected to absorb and make a decision about instantaneously. My cancer was stage 3C, so chemo was started within 15 hours of seeing the oncologist. 

As the other people have mentioned, side effects are different for each person. The medical community has to tell you about all the possible ones. Just hearing them all can be overwhelming. Like your sister, I was terrified of the possible impact on my heart, but as my oncologist said, "I'm not worried about possible heart issues 10 years down the road because if we don't do this chemo now, you won't be here in 10 years". Now, 11 months after diagnosis, I am free of cancer!! There is hope. Yes, it can be tough going through the treatment but we're all here to support you and your sister, we'll do whatever we can. Ask your questions here, don't be shy. The people here are wonderful and so encouraging. The support is invaluable, people here know exactly what you're feeling/experiencing. 

Praying that everything will go well for you and your sister.
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 gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2016 at 6:06pm
You might want to consider having a 2nd opinion.


Edited by gordon15 - Oct 07 2016 at 7:41pm
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 LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2016 at 6:18pm
Thank you Jacklin for sharing your experience,thoughts and knowledge. Yes, it is overwhelming and scary when you first hear all these things and start reading the side effects.  So happy for you. Thank you for your prayers. We will keep praying for your continued good health.
Little Sister.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2016 at 11:19am
The NCCN guidelines for cutoff on chemo is any tumor 0.5 cm or larger.  There was another article posted a while back saying they should look at TNBC as if it was staged higher, meaning when deciding on treatment, a stage 1 would be more like stage 2, stage 2 more like stage 3.  TNBC is tricky and we just don't know who will go on to recur.  We've seen stage 1 ladies recur and stage 3 ladies have no recurrence.  

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 LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 1:44pm
My sister has made it through the 4 treatments of the Red Devil and cytoxin with minimal side effects.  She was extremely worried. She is now on her 7th of 12 Taxol treatments. To refresh, she was Stage 1, .7cm, no nodes.  She is doing extremely well so far into this. And now we are wondering, what happens next.  I did read that Joan Lunden had a lumpectomy instead of mastectomy and her's was a Stage 2 or 3.   Does anyone have experience or information about whether a lumpectomy or mastectomy  for this type of Stage 1.  Thanks for everyone's help and input on here when my sister first got this news and began chemo. It's been a wonderful help to us. I would love any input of this at all. Much thanks and blessings to all!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 2:36pm
barrycarrot.. I think my sister will soon be faced with the decision for a lumpectomy or mastectomy. I saw that you listed lumpectomy.  She fared excellent through the AC and now on the 7th Taxol of 12 and still doing well.  Wishing you the best. 



Edited by LittleSister - Jan 25 2017 at 2:37pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 6:27pm
< To refresh, she was Stage 1, .7cm, no nodes.>

is she "Triple Negative"?
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 LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2017 at 9:14pm
Yes, triple negative. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tamara Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2017 at 7:55am
I feel that the lumpectomy vs masectomy is such a personal decision and there is no right or wrong answer.
i chose lumpectomy - the surgery was done first, then I had partial radiation and finally chemo.
The lumpectomy decision was based on questions I asked my dr and I felt at peace with the answers he provided. I talked with my husband but this decision was far too personal that only I could make it.
I was stage 1, 1.8 tumor, grade 3 and no node involvement.
My personal opinion - as long as your sister feels at peace with the decision she makes then it is the right decision for her.
God bless,
Tamara
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pina Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2017 at 7:46am
Little sister, I am at the same position as your sister. Stage 1 TNBC ,1.2 cm, no lymph nodes involved. Just had the lumpectomy and will see both chemotherapy and radiation oncologists next week. Reading everything here and on The web. I am getting more afraid of the sides effects of the chemotherapy as I get close to the appointment.
But it is this site that is giving me the courage to understand that I need to go through chemio because I owe myself to put all the chances to beat the cancer. Will be thinking of your sister as I go through this week.

Edited by Pina - Jan 27 2017 at 7:50am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LittleSister Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2017 at 9:26am
Pina,   My sister had the chemo first  AC/T.  4 treatments with the A/C and then twelve weeks of Taxol.  I think a lot of her anxiety went away after the first treatment. 
She just finished her 7th Taxol treatment.    She was so afraid of the chemo after hearing all the serious side effects.  But she fared extremely well with mostly fatigue and low white blood cell counts but she just stayed away from people till they came back up.  She never had nausea and rarely needed the nausea pills.  She has five more Taxol treatments and then the discussion about the lumpectomy and radiation.  We wish you well! Supposedly sucking on ice chips before, during and a few minutes after helps with mouth sores and my sister also made an effort to rinse her mouth religiously..she never got mouth sores. 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pina Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2017 at 9:45am
Thank you so much . We only ear about the worst cases , it is comforting to ear that it is not always as bad.
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