New TNBC diagnosis - my mother |
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KellyHM 
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Joined: Oct 22 2013 Location: FL Status: Offline Points: 17 |
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 Topic: New TNBC diagnosis - my motherPosted: Oct 22 2013 at 11:36am |
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Hi all, I am new here. Last Friday my mom was diagnosed with ductal carcinoma and was talked to about mastectomy options, etc. At her appt with the surgeon yesterday they dropped the bomb that she has TNBC and will have to go through chemo, etc first, before surgery. I don't understand why they wouldn't do them together, but am planning to ask lots of questions when I go to her oncology appt with her tomorrow. I am completely flabbergasted by this, and even though I know cancer doesn't discriminate, my mom has to be one of the healthiest people on this planet...eats right, thin, doesn't smoke, etc, so it just makes it even more shocking that she suddenly has this aggressive form of cancer that could steal her from me prematurely. Along with my mom, she has always been my best friend too.
 Tomorrow we go for her oncology appt and MRI, and to schedule the surgery to have her chemo port implanted and lymph nodes biopsied. We don't know the stage yet. Anyone who's been through this - if you have any suggestions on questions to ask, etc, I would appreciate it. I already have a list, but I'm sure there are things I'm not thinking of. Thanks in advance.
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Fats1976
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Joined: Dec 13 2012 Location: South Africa Status: Offline Points: 71 |
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Posted: Oct 22 2013 at 1:17pm |
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Hi
Welcome, you have found the best place possible, this forumn was my saving grace.... It really helped me help my mom, in the best way I could! Like your mom, my mom was diagnosed In September 2012, she first had a sentinel node biopsy, which came out negative, so we were told she was Stage 1,we also @ first were told mom, would be ok with a lumpectomy and radiation, after radiation she would be given a pill to take for 5 years to prevent recurrence! But then after Lumpectomy, we also got the news that her tumour was tnbc, we were told the pill, wouldn't work for mom and she would have to do chemo, this scared mom more than the sentence "you have breast cancer" So off we went to meet an oncologist who sent us for further testing, she had to have a bone scan, chest x-ray, ultrasound of abdomenthen we had to see a cardiologist to check her heart, to see if she could handle chemo, all the other tests were done to see if cancer had spread anywhere else! I can tell you now, you are in the scariest part of the Journey! Once all of this was done, we met again with the oncologist who then gave us her treatment plan! After this we were ready to kill this cancer "beast" It's been a year now! Mom finished all her treatments, End July 2013.... It's been a long Journey, but we getting there, and so will you! Keep records for your mom, go wth her to her appointments, Knowledge is power try find out all you can about her treatment! Keep posting your questions here, all these lovely people here, will advise and support yours and mom's journey! God Bless mom and you.... be strong, you and mom will be fine! Fats
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Mom Dx 9/12
Stage 1c No Nodes involved. Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED. |
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KellyHM
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Joined: Oct 22 2013 Location: FL Status: Offline Points: 17 |
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Posted: Oct 22 2013 at 1:46pm |
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Thanks for your response. It's good to know there are other people that have been through this I can talk to. I am hoping and praying the lymph node biopsies come back clean. It will make me feel soooo much better that way.
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Fats1976
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Joined: Dec 13 2012 Location: South Africa Status: Offline Points: 71 |
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Posted: Oct 22 2013 at 2:32pm |
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Kelly
Pleasure, as I said this site was GOD SENT, it helped me so much, I'm sure a lot of the ladies here will soon chime in on your post! Even if mom's nodes aren't clear! There is still lots of hope! Try stay off google for tnbc, all the stories are so scary, I soon realised that! Post all your questions here! I got a list of all the websites that were ok, from the breast specialist! Oh my to think I was where you are just over a year ago!!! We've come out stronger! And with a new appreciation for the little things in life! We met such beautiful and inspirational people on our Journey!Like you, love my mom so so much! Will do anything for her! She always did her best for me and 3 brothers and continues to do so, It's my turn to do something for her! Being here every step of the way, makes me happy! In the beginning the stress of mom's diagnosis all became to much for me, went to doc to get a very mild tranquiliser, to help me cope, so glad I did! It really helped me focus and keep it together for mom! Took it on the days I felt overwhelmed by all of this! Haven't taken any since July! So don't hesitate to take a "calming pill" if you need! Your mom needs you, Keep calm, Pray, have faith, be there for your mom, and we'll be here for you! Keep us posted! xxxxx Fats
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Mom Dx 9/12
Stage 1c No Nodes involved. Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED. |
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KellyHM
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Joined: Oct 22 2013 Location: FL Status: Offline Points: 17 |
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Posted: Oct 22 2013 at 2:43pm |
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They put my mom on Xanex so she can sleep and I have my own "calming pills" if I need them, although I try not to take them if I don't have to...probably why I was awake in the middle of the night for 2 hours last night. There are so many things to take in that my head is spinning. I am a veterinarian, so at least I understand most of the medical lingo and can formulate good questions.
On a personal note, I have a 1-year-old and 3-year-old. My 3-year-old thinks the world rises and sets on his Nana, so I am terribly scared for what this experience is going to do to him. I was also considering more kids, but think I am going to have to put that plan on hold until mom gets through this. I don't think I could handle going through everything at once!
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KellyHM
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Joined: Oct 22 2013 Location: FL Status: Offline Points: 17 |
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Posted: Oct 22 2013 at 2:58pm |
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On another side note, I am an Independent Consultant for PartyLite Gifts and Origami Owl and have decided to do a fundraiser in which all proceeds will go to this organization. At least it makes me feel like I'm doing something instead of feeling helpless!
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Fats1976
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Joined: Dec 13 2012 Location: South Africa Status: Offline Points: 71 |
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Posted: Oct 22 2013 at 3:07pm |
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Can relate, I have a 6 year old and 2 year old! 5 and 1, when mom was diagnosed and Granny is their favourite.... :-) I wouldn't worry about the little ones, they won't understand much, I was surprised with my 5 year old he understood more than what I thought, @ times he'd shock me with certain comments, he listened in on all our conversations, the other day I was watching a program on tv, about breast cancer, he asked me turn it off, because it was making him sad! I then sat him down and spoke to him about what was going on with granny and that she was going to be fine! But for my mom the grankids, she has 5 boys, were her escape from cancer, @ times during chemo, she'd complain to me how bad she was feeling, and when I'd visit she would laugh and play with my boys! And forget everything! I run two businesses as well, and had my boys to care for and a home to run, so it was a crazy year! BUT we made it as you will also.... and then you can have the 3rd baby.... It's going to be ok! If you want anything or just someone to chat to, feel free to email me fdjjhb@mailbox.co.za....
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Mom Dx 9/12
Stage 1c No Nodes involved. Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED. |
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CAfree12
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Joined: Jul 26 2012 Location: Texas Status: Offline Points: 51 |
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Posted: Oct 22 2013 at 5:42pm |
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Hi Kelly,
I am a TNBC survivor and a long time (old) oncology nurse. These are some questions to get clarified:
1. How large is the tumor? The decision to do chemo first is usually based on that. If it's smaller than 2cm she might not need to do chemo first - just ask the Dr why...
2. How old is your mother? I'm assuming since you have little children she's in her late 40's or 50's. The oncologist will discuss pros and cons of different chemo regimens "recipes" based on her overall health.
3. Ask about the grade of the tumor - the higher the grade # (up to a 3) the more aggressive the tumor type and the more likely she should consider chemo. Grade is based on the cell characteristics so if they know its TNBC - they know the grade.
4. Yes all the pre-suregery testing is frightening because you don't know what they will find - but think of it is crime scene investigation - learn all that you can know before surgery so that you have a plan based on real information.
5. Take it one day at a time - process the information as it comes in - don't got too far down the road with the "what its" - only make decisions based on the information you have.
Remember that TNBC is only more aggressive if it gets out of control in the body. If this has been caught early and lymph nodes are negative, then there is a very real possibility she will be fine!
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Diagnosed Oct 2011 @ age 53, Stage 1c, grade 3, 1.5Cm, neg nodes;double mastectomy with TE, dose dense AC+Taxol; BRCA neg; treatments finished April 2012
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KellyHM
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Joined: Oct 22 2013 Location: FL Status: Offline Points: 17 |
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Posted: Oct 23 2013 at 8:47am |
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Thanks for the info! My mom will be 58 on Friday, Grade 2 (although only 1 point below grade 3), I believe the tumor is around 1.5 cm diameter, although they cut quite a bit out with the biopsy. She will be having an MRI this morning and we are meeting with the oncologist this afternoon. She got on Dr. Google last night (bad mommy if you're reading this!) and freaked herself out, but I directed her to this site b/c it is so much more positive than some of the other stuff out there. Her "to do" list for the day includes making a profile and posting, so hopefully she'll join us.
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CAfree12
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Joined: Jul 26 2012 Location: Texas Status: Offline Points: 51 |
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Posted: Oct 23 2013 at 11:22am |
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All of the details you posted KellyHM sound encouraging to me! I'm glad she is joining the site and tell her to CELEBRATE her birthday big on Friday!! |
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Diagnosed Oct 2011 @ age 53, Stage 1c, grade 3, 1.5Cm, neg nodes;double mastectomy with TE, dose dense AC+Taxol; BRCA neg; treatments finished April 2012
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Fats1976
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Joined: Dec 13 2012 Location: South Africa Status: Offline Points: 71 |
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Posted: Oct 23 2013 at 4:10pm |
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Hi Kelly,
How's mom? and You? Wow my mom is also 58, she had 1.8cm tumour... grade 3.... glad your mom wants to join this forumn! How did today's appointments go? Let us know!
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Mom Dx 9/12
Stage 1c No Nodes involved. Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED. |
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KellyHM
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Joined: Oct 22 2013 Location: FL Status: Offline Points: 17 |
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Posted: Oct 23 2013 at 9:25pm |
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Mom is doing better emotionally after being able to talky to her social worker, who happened to also have TNBC and is now 4 years out. I have had my moments, but am mostly still upbeat. The ontology appointment went well and apparently although the surgeon from Monday said it's TNBC, they are actually still waiting on the HER test to come back. She could still possibly be HER2+. Either way she is set to have her chemo port placed on Tuesday and her sentinel nodes biopsied at that time as well. She will most likely start chemo the following week.
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KellyHM
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Posted: Oct 24 2013 at 11:54am |
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HER 2 came back negative, so on with the original plan.
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Charlene
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Joined: Aug 14 2010 Location: Atlanta, GA Status: Offline Points: 613 |
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Posted: Oct 24 2013 at 1:02pm |
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Hi, Kelly,
Just want to wish you and your mother well. Please remember--there are many long term survivors of TNBC and your mother's case definitely has some positive characteristics to it. (There is a thread on this forum called "Survivors Needed" and it has many posters.) Reading all the gloom and doom stuff on the Internet is too, too scary! I hope your mother will join the forum. Best wishes! Charlene
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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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Fats1976
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Posted: Oct 24 2013 at 1:03pm |
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Hi Kelly,
Yip, I also had ups and downs.... at times I was positive, at times I was scared.... So is your mom having a Lumpectomy or Masectomy? Will she be doing Chemo first? My mom had sentinel node biopsy first, then she went on to have a lumpectomy with breast conserving surgery, and then two weeks later she started Chemo after 6 months she went onto radiation after a 4 week break....Please realise this isn't the only order of procedures some doc's prefer to do chemo first especially when the tumour is quite big or to see if chemo is working, we just trusted our Team @ Dr Carol Benn's Breast Care Centre! One of the top Breast Specialist's in South Africa, we felt happy and comfortable from the first 5 mins with her, She's amazing! Well you're on your way, over the initial shock and now ready to get this going, As soon as you start Chemo, which is like a blind date @ first.... You don't know what to expect. As soon as you know what chemo your mom is having, you can read up on it! And get lists of possible side effects.... and how to manage them! Anyway one step @ a time.... I could go on forever! Release the Fear and grab onto Faith.... all is going to be ok GOD willing! Stay well Fats
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Mom Dx 9/12
Stage 1c No Nodes involved. Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED. |
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KellyHM
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Joined: Oct 22 2013 Location: FL Status: Offline Points: 17 |
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Posted: Oct 24 2013 at 2:41pm |
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Mom will be having chemo before surgery, but will be having her sentinel nodes biopsied next week when they put her chemo port in. She will be having 4 treatments of AC every 2 weeks, then 12 weekly treatments of T. At some point she will have the lumpectomy, but has decided when she is done with chemo that she wants a double mastectomy and reconstruction so she won't have to worry about it popping up again.
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Fats1976
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Posted: Oct 24 2013 at 3:23pm |
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My mom did a different chemo, CMF Schedule A, infusions day 1 and 8, tablets day 1 to 14, then 2 weeks off, she did this for 6 months, was used as a mop up treatment,because tumour was removed when she did her lumpectomy and they were able to get good clear margins, and all further tests showed no cancer anywhere else! So it was our "insurance" in case there was one microscopic cell hiding somewhere! I questioned it @ first but had to trust their treatment plan, Her Oncologist has a terrible "bedside manner" but very good, we were lucky that his staff @ the oncology centre were Angels, I was told by the breast specialist, that in cases like these, we want the best, not someone to make friends with! Sounds like you have it all under control! Hopefully the lovely ladies on this forumn, that have done the same treatment as your will be doing, can give you some advice, on what to expect! Hope your mom has a awesome Birthday tomorrow.... Celebrate! Things could have been worse!
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Mom Dx 9/12
Stage 1c No Nodes involved. Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED. |
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KellyHM
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Joined: Oct 22 2013 Location: FL Status: Offline Points: 17 |
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Posted: Oct 29 2013 at 9:07am |
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Mom had a good birthday and we went to Seaworld and had some fun this past Sunday, since we won't be allowed out in the big crowds for a while once chemo starts. Mom got her chemo port put in this morning, along with her lymph node biopsies done and is in recovery now. Praying for negative nodes!
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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: Oct 29 2013 at 10:11am |
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Kelly,
So glad your family was able to have a much needed outting to feed that soul/bond. Prayers for negative nodes. Natalie
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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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Fats1976
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Posted: Oct 29 2013 at 3:05pm |
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Great Birthday!!!! Sounds like you all had a blast! Praying for Negative Nodes!!!! God Bless, Fats xxxxx
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Mom Dx 9/12
Stage 1c No Nodes involved. Lump clear margins 10/12. Started 6 months of cmf chemo 11/12. Ended 4/13. RADS 28 tx 7 boosts ended 7/13. 02/14 Scans NED. 10/14 Scans NED. 6/15 Scans NED. |
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