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Jbtnbc54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jbtnbc54 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2021 at 1:32pm
Hi... 
I'm 54, married, no kids except the 4 legged variety (dogs), with a variety of food allergies (dairy, peppers, white cane sugar, and I seem to do better if I eat gluten free).  

I was diagnosed with TNBC ( I will volunteer to kept a list of acronyms if anyone wants to give me some. I could use a list when reading through the forums.) On 06/03/2021, after being originally being diagnosed with E/P+/HER2- on 12/29/2020.  (I still want to know how or why that happened.) BRCA negative.  I had Verzenio (oral chemo)  and Anastrozole  (estrogen inhibitor) treatment in February and I knew by April it wasn't working. In May, just after Mothers Day, the superclavicle tumor blew up my lymph nodes in my neck. This week I had radiation on it.  There has been some improvement, I think, though the lymph nodes are still swollen.   In the middle of this, I'm going on vacation to see family , and when I return, chemo (Paclitaxel and Gemzar).  Frankly, intravenous chemo scares the crap outta me. 

I am determined to live a long life one day at a time,

These days I'm looking for recipes for high protein soft foods to make the journey through chemo palatable and nutritious.  

Grateful for this forum and a place to share information.  I really do thimmk that the more information we have we can support each other in defeating TNBC. 
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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: Jun 12 2021 at 2:43pm
Hi Jbtnbc,

I'm so sorry you received this diagnosis, but glad you found this group.  You'll find lots of support while you navigate all of this.  Was your original diagnosis diagnosed incorrectly?

Here's a link to a thread discussing helpful abbreviations.  Most of the info is on the first page.


Keep us posted on how you are doing.

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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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2021 at 12:19am
Agree with Alishan. I worked right through chemo and radiation without much trouble.  It is totally doable.  ~ Penny
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Gerald View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Gerald Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2022 at 12:35pm
Hello,

I am the adult son of a current TNBC patient.  I am new to this forum.
First - a nod of respect and empathy to all families who find themselves in this awkward situation.  My heart goes out to you.  Thanks to those who offer understanding on this forum.

my mom:
dx 10/21, neoadjuvant chemo started 11/21.  Diagnosed at stage 1B, gr 3, KI-67 = 50%, BRCA neg.

currently through 4X DD AC and 2X DD Taxol.  2X DD Taxol yet to go

At this point, I am still bewildered by the physical, emotional, social, and financial upheaval associated with TNBC and its treatment.  I still feel like "a hog starin' at a wristwatch".  I have read a few of the posts here and some of the studies on the ncbi site ... those are sobering.

One of the side effects of the month during Taxol is bone pain.  I'm not sure if this is from the taxol or the neulasta injections.  If others here have suggestions on bone pain relief, I look forward to your wisdom.


To paraphrase a recent celebrity:  "There seems to be more than enough suffering to go around ... but there is also hope and strength."

To paraphrase my non-celebrity dad:  "Well, we are still here ... so we just keep going."

Kind Regards,
Gerald




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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2022 at 1:25pm
Dear Gerald,

I am a patient advocate and have helped many on this wonderful site over the past 10+ years.

I would be happy to talk with you and I have a couple of questions for you about Mom.

Please send me a PM with your phone number and I will give you mine as well.

Or please feel free to send an email to info@sagepatientadvocates.org

If you are o.k. with having a Zoom call, I have some time today and would be happy to talk with you.

I am not a medical professional and will not give you medical advice but I hope our discussion will be useful. There will not be any charges.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Maggie Warrior View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maggie Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2022 at 11:19am
Hello,  I was just diagnosed with TNBC about two weeks ago.  I'm still on the merry go round of collecting test results and docs trying to figure out the right treatment.  I am at Stage 1b group 3.   Presently the plan is to start with chemo and then surgery.  I am leaning more towards a mastectomy of the left breast, but I could also be a good candidate for a lumpectomy.  My head is still spinning from all of this!
Maggie Warrior
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2022 at 12:14pm
Hi Maggie,

My diagnosis was over five years ago and I still remember the first few months of just total chaos.  I understand how you are feeling.  I too wanted a mastectomy but after meeting with my oncologist, he strongly encouraged a lumpectomy.  I am so grateful I went that route.  I was able to successfully have the lumpectomy and then after all my treatment, I was able to have reconstruction to the non affected breast that helped even me out.  Looking at me today, you cannot tell I had any surgery at all.  My advice is one step at a time.  Put a good solid plan together with your team and execute.  I also adopted a psychological plan to not "pre-worry" about things that are down the road.  Meaning, I picked a date on the calendar and said "this is the day I will worry about X".  Not before.  

Please know, this gets better over time and you will settle into your new normal.  I hope this helps. 

Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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rickles View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rickles Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2022 at 6:14pm
Hi Maggie, I was diagnosed with TNBC 7/2021. I had a lumpectomy followed by four doses of Adriamycin/Cytoxan. I have completed 8 of 12 doses of Taxol. Then I will have 20 radiation treatments. I am doing well and have been very pleased with my care so far. I believe the risk of getting TNBC in n the same breast is very low so a lumpectomy should be a good chose. Good luck. Take one step at a time so you donít feel overwhelmed.
Diane Byrnes 
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 11 2022 at 6:45pm
Sorry you are dealing with all this Maggie. It's very difficult in the beginning as there is lots of information and decisions to be made. You will definitely feel better once your plan is in place! Then you will take one step and one day at a time and chip away at this. I promise you will get there in time.

Odds of recurrence are pretty much the same with either mastectomy or lumpectomy. Do what gives you the most peace of mind going forward. There is no wrong decision, just do what is best for you! Let us know how you are doing, best wishes.
 
8/2016,IDC,StageIA, Gr3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX implants,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca, surg
Xeloda2/21-7/21


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Maggie Warrior View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Maggie Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2022 at 3:16pm
Hello Penny, Diane and Cookie!  I appreciate your advice.  Penny, when you said, "I also adopted a psychological plan to not "pre-worry" about things that are down the road.  Meaning, I picked a date on the calendar and said "this is the day I will worry about X".  Not before.", really resonated with me.  I am a worrier!! I like to know things ahead of time so that I feel like I'm somewhat in control of the situation.   Not sure how well that's going to work with this diagnosis!  Ermm 
Maggie Warrior
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2022 at 12:42pm
Hi Maggie,

If I can do it, you can.  I am a worrier to the core and I absolutely was able to tell myself to worry on a specific date, and not before (or after).  You are in control of one thing during this process, your mind and spirit.  

I have also adopted this new mind set (now that cancer is behind me at 5 years) in my everyday life and I can tell you, I am much happier. That is what I learned for TNBC.  We live every single day, and leave this earth only once.  

Hang in there ~ Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Coddfish Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2022 at 5:46pm
Hello all, newly diagnosed today, age 65. 16mm tumour, no sign in lymph nodes through ultrasound, grade 3, triple negative. Outlooking wide area excision plus sentinel lymph node biopsy. Seeking inter operative radiotherapy. Donít know whether chemo will be recommended, depends on the results from the surgery.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2022 at 10:56am
Maggie, I had to get a mindset similar to Penny. Mine differed in that I decided I couldn't worry about what I didn't know. Worrying without knowing would only drive me crazy. I decided I needed to wait until I knew exactly what to worry over. 

A mastectomy wasn't even suggested when I was dx'd. I guess I could have insisted if I felt the need. Not much was known about TNBC at that point. It wasn't named until 5-6 years after my dx. I did do a report for a class at one point on those that had had a mastectomy in regards to feeling/sensation and the affect it had on life. I was given quite detailed information from online friends from a breast cancer group I still communicate with. It is truly a personal decision. I've also known several women that chose mastectomy several years after dx because of the continued  worry they had with each check up or ache and pain.

Coddfish, good luck with your tx. The beginning is the hardest, learning all about a subject we all really didn't have a desire to learn about or experience. 

Kirby
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (1) Thanks(1)   Quote rickles Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2022 at 7:04pm
Hi Codfish, 
 I was also diagnosed at age 65 following a routine mammogram last June. All the information can be overwhelming. I agree with our fellow support members to take one step at a time. If surgery is your first step then focus on what you need to do to have a smooth recovery. Do not hesitate to ask your doctor any questions or concerns you may have. If you are doing any research online make sure it is a reliable source such as TNBC, American Cancer Society. Wish you all the best.

Diane Byrnes

DX IDC, TNBC 8/2021 (age 65), Stage IIa Grade low, 2.2cm, 0/0 nodes, Lumpectomy & node dissection 8/18/2021, BRCA1&2 negative  Chemo AC every 3 weeks for 12 weeks, completed 11/30/2021, Taxol once a week for twelve weeks, will finish March 10. Then radiation 5 times a week for 4 weeks.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote pam5733 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 18 2022 at 7:44pm
Hi everyone,
Newly diagnosed on 1/24/2022. Had a lumpectomy on 2/15/2022 with lymph node removal for biopsy. Just received the result in my online portal and can't make heads or tails out of it. I don't understand any of the codes used and of course it's friday night and can't speak to my doctor until monday, but that's ok. I am trying really hard not to stress. Not sure what my treatments are going to be, meet with my medical oncologist on 3/8 to discuss treatment. I'm 62 yrs old and I live in Georgia. Hope everyone can have a good weekend, my heartfelt prayers are with all of you.
Pam :)
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rickles View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rickles Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2022 at 6:25pm
Hi Pam, I am sorry that you found out about your biopsy that way. I would think one would expect to hear the results from their physician prior to posting the results. Hopefully you will hear from your doctor on Monday. I noticed in one of the earlier blogs there was a website you can go to which explains the abbreviations. This may or may not help relieve some of your concerns. My prayers are with you.

Here's a link to a thread discussing helpful abbreviations.  Most of the info is on the first page.
Diane Byrnes
DX IDC, TNBC 8/2021 (age 65), Stage IIa Grade low, 2.2cm, 0/0 nodes, Lumpectomy & node dissection 8/18/2021, BRCA1&2 negative  Chemo AC every 3 weeks for 12 weeks, completed 11/30/2021, Taxol once a week for twelve weeks, will finish March 10. Then radiation 5 times a week for 4 weeks.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote pam5733 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 19 2022 at 8:11pm
Hi Rickles,
Thank you so much for the information and the link. Yeah, we have a patient portal that links everything in one, my dr appointments, lab results, test results, etc. I found out that my mass was cancer before my doctor did. I get emails when I have any test results, etc. letting me know that they are in my portal. I could have called my doctor, she gave me her cell phone number and told me to call her anytime. But I will just wait until Monday, I am sure she will be calling me. I wish you well on your journey and my prayers are with you, always.
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