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My mom...TNBC...help!

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jsexton33 View Drop Down
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    Posted: Jun 21 2018 at 1:43pm
My mother is a 60 year old woman. She was diagnosed 2 weeks ago with TNBC. We saw a Surgical Oncologist yesterday that left us not knowing exactly what to do. Her mass is 1 cm and is grade 2. Ki-67 was 26.95. Physical stage 1 based on the outside. My mom just doesn't know whether to do Lumpectomy or Double MX. She didn't want to have to go through radiation bc being a nurse she has heard terrifying stories about it. But now i think she is second guessing what she SHOULD do. Doctor didn't tell her what needed to be done. Just let her talk about not wanting radiation and said well then i think your mind is made up. I'm wondering if seeing her medical oncologist will help decide as well. The surgical oncologist didn't answer any questions regarding chemo or radiation.   I just don't know how to help her with this decision and what is best case scenario for her and her cancer. Any help would be greatly appreciated.

Jenna
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parrynd1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2018 at 2:25pm
I’m so sorry your mom is going through this first and foremost. I can say for me one of the most frustrating things about treating TNBC that I’ve experienced is the doctors only being able to suggest what they thought would be the best course of treatment and being told that TNBC doesn’t have a standard of care outlining a clear course of action (take x medicine and get better). It’s very scary and each person’s cancer/situation is very different.

Do your research about all the options. Talk to the medical oncologist. Ask questions on the forums. Ask another doctor. Question what your doctor suggests.

In my personal experience I was diagnosed at age 28 with stage 3 TNBC, KI-67 was 90 something %, 3 tumors grade 3 at 4.5cm, 2 were .7cm, sentinel node positive. I was given statistics about neoadjuvant (chemo b4 surgery), adjuvant chemo (chemo after surgery), breast conservation surgery & lumpectomy or mastectomy, radiation, types of chemo, and clinical trials. I wanted kids and the potential to breast feed so we went with a clinical trial doing neoadjuvant chemo, breast conservation surgery, more chemo then 30 rounds of radiation. We went with what the path that statistics showed the most positive results. I was NED (no evidence of disease) for 4 months b4 we found a metastatic recurrence in my brain with more tumors in the breast that was a problem initially and just tumors all over the place. I can sit here now and say I wish I would have just chopped the girls off and maybe not be where I am, but I know we did the best we could with what we had at the time and that comforts me. You can only do the best with what you have at the time and that’s also very scary to deal with, but medicine is advancing so much and more focus is being paid to TNBC so we are getting more options than before so that is great news!

I think you have to do what is right for you (your mom in this case) at the end of the day. There isn’t a course of action that is guaranteed to work, but you can be educated and knowledgeable about all the options and what may work best for your mom’s specific situation. I would look into also genomic mapping of the tumor if you can. It helps the doctor determine what may work better for your moms specific cancer cells since TNBC doesn’t express like estrogen or other hormone positive tumors that have targeted treatments available. This will be important for treatment now and possibly in the future. I’ve had a poor response to AC, TC and radiation so this is something I wish I knew and did sooner. There is also going to be what ifs in hindsight I think so do what feels right and don’t let anyone push you into a surgery or treatment you/your mom aren’t 100% comfortable with. You don’t have to decide right now before thinking about it and doing your own due diligence even though it feels like you do. Go home. Think about what questions you have. What other options there are.

Radiation for me was easy peasy. Biggest pain was going everyday, lol. Because I chose to go I can say I have the peace of mind knowing I did everything I could the first time and that was one of the biggest reasons I chose to do radiation. It was just what I could live with at the end of the day and what I couldn’t. I’ve also had SRS on my brain and haven’t had any side effects from that so I’ve been lucky on that front.

TNBC traditionally responds very well to chemo! This is something that is treatable and has a great prognosis after 5 years clear.

This is just my 2 cents so I hope it helps

Wish you and your mom all the best
Dx TN IDC 9/016 Age 28, Stage 3c, Grade 3, 4.5cm, .7cm, 1/5 Nodes, BRCA -, KI-67 >90%, 6/6 I-Spy 2, 4/4 rounds DD A/C, Lumpectomy w/reduction, 3 nodes removed, weekly Taxol/Carb1/12
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jsexton33 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jsexton33 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2018 at 2:31pm
I'm so very thankful you took the time to tell me some of your story! I will be praying for you!!! I/we have done tons of research and had formed an opinion of course of action in what we thought. However we have not seen our general oncologist yet.   Hoping she clears some things up for us! Thanks again for all the information!!!!


Jenna
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2018 at 11:39pm
Welcome Jenna! I'm so very sorry this is happening to you and your mom. So glad you found us!
Her medical oncologist should be WAY more helpful. They should provide you with different treatment options, the pros and cons of each one, and with the studies that show the typical outcomes for the various treatment options. If they don't give you copies of those, the reasons they're offering them, ask for them. I can tell you are an amazing daughter that wants to help your mom you might want to start looking into a second medical oncologist to see for a second opinion. If your aren't being seen at a research facility or an NCI designated hospital, you may want to seek a doctor at one. Many of us have found clarity - or life saving treatments! - when we've sought second opinions. You can get most any care suggested by any doctor at your facility of choice, by the Dr. of your choice. Any good doctor will support you seeking a second opinion. Has she started all of the testing yet? She'll be getting some combination of scans, MRI, CAT, PET, bone, etc, and you should ask to see a genetic counselor to get genetic testing done as well. All that info, plus seeing a couple of medical oncologists - and meeting with the radiation oncologist to see what she has to say - will help y'all better understand what's the best treatment for her.
I know that sounds like a LOT, but these are life changing, life saving decisions so it's worth doing all that you can before making the decision. Y'all feel an extreme since of urgency (with good reason) but you can get it all done in time for her to start treatment soon enough. As a mom I can tell you from experience that your support and help is the best thing in the world for your mom! The love and support of my kids and amazing husband let me know that despite going thru all of this cancer nightmare (twice) I'm a very very lucky woman. We're closer now than I could've ever imagined and I'm very grateful. You are awesome! And take care of YOU, it's very traumatic for you as well, get sleep, eat right and don't skip your own doctors appointments! And stay in touch, we'll be thinking about you and your mom.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jsexton33 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2018 at 10:21am
Well this whole cancer thing hasn't gone as i would have hoped.   My mom is very angry with me b/c I want her to get a second opinion and she isn't listening. We have now seen the Surgical Oncologist whom has scheduled her to see the plastic surgeon doing the rebuild at Double MX. We see him July 2 and the Surg Onc hasn't sent her information to the general oncologist. I was hoping the General would want to start chemo b/c the surgical onc doesn't want to. I just don't understand. I'm worried the "cancer babies" that have been sent out will set in and metastasis. She keeps getting frustrated at me, but i feel like I have done the research and there are different ways to handle this! At this point all I can do is be there for her and walk hand in hand with her through whatever happens. Just wish I felt better about it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote parrynd1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2018 at 10:46am
A big part of going through a cancer diagnosis, I’ve noticed for me and mine, is that family and loved ones go through it just as much as the person with the disease even if it’s in a different way. Everyone feels it. I would hope your mom talks to the medical onc before making such a big decision so she knows all her options and information score deciding. At the end of the day it’s her life and she is the one who has to be ok with her decisions and course of treatment. It can be very frustrating if you have differing opinions since you both want to do what you think is best.

I sometimes think it’s harder for my family since I am going to doctors and getting treatment. I am actively fighting while they just have to watch. I can say that it’s incredibly hard as my grandmother had cancer 3 times over her life. Each one was different. I couldn’t force her to do the treyi thought was best but I could be there for her and show her as much love as I could and try to be understanding. It doesn’t hurt to give information about treatments and options and keep an eye out for things happening in the TN community though.

I’m wishing you and your mom the best and sending some hugs your way. Hang in there!
Dx TN IDC 9/016 Age 28, Stage 3c, Grade 3, 4.5cm, .7cm, 1/5 Nodes, BRCA -, KI-67 >90%, 6/6 I-Spy 2, 4/4 rounds DD A/C, Lumpectomy w/reduction, 3 nodes removed, weekly Taxol/Carb1/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kcbc1990 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2018 at 11:56pm
I am so glad I found this website and forum. My mom was just diagnosed with TNBC yesterday. She is 65. We have an appointment next Tuesday with a surgeon and we don’t know the options yet. What treatment plan did your mom decide to go with? We spent all day yesterday and today trying to find doctors, researching, and discussing everything we’ve heard and read. We feel overwhelmed with everything. Any info would be helpful. Prayers for your mom and Everyone else who is going through this.
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