New Posts New Posts RSS Feed - New to TNBC
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

New to TNBC

 Post Reply Post Reply
Author
EvilTina View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 20 2021
Location: Astor
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote EvilTina Quote  Post ReplyReply Direct Link To This Post Topic: New to TNBC
    Posted: Jun 20 2021 at 7:12am
Hello I have recently been diagnosed with triple negative breast cancer.  I will be having all of the follow up tests to find out if it has spread beyond my breast and lymph nodes this week.  I get my port the following week.  So far I have been very positive about this but as my family begins to do their own research about my condition I see them actively trying to spend time with me (which is normal) but they all seem to be going the extra mile.  It scares me to think that I might not live another 5 years to see my grandchildren grow up.  How do you all cope with this?  Iím only 53, too young not to enjoy the life I worked so hard to keep, earn, and enjoy.
Back to Top
Marymom View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2019
Location: Ny
Status: Offline
Points: 91
Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2021 at 4:06pm
EvilTina,
SoÖI have not posted in awhile.  The same thing happened to me when first diagnosed.  The phone calls the visitsÖI was like - hmmmmmÖ.what is going on.  What was going on was love.  My crew researched as well.  Honestly, we all did and then we just started with the one day at a time view of it all.
This site saved me.  Donna and Steve are an amazing resource for us all.  I still read the posts everyday.  I have not posted in awhile because of technology and constantly forgetting my sign on info and that is not because of treatmentÖ🤨I have had a bad memory for years.
As I enter my fourth year since being diagnosed, stage one, no nodes and grade three.  I slowly realize all the things in the beginning that I thought I would never seeÖI have seen and then some.  I am filled with gratitude every single day.
Stay strong and soak in all that love that surrounds youÖlet them continue to go that extra mile.  Sounds like a long running good family♥️
As ever, Marymom
Back to Top
EvilTina View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 20 2021
Location: Astor
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote EvilTina Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2021 at 5:17pm
thank you Marymom, Iím trying to stay positive but itís a lot of information at once. Today being Fatherís Day felt more like the family was catering to me than than my husband their dad. I donít want the kids to feel like Iím fragile every time we get together. Iím not, Iím the strong one, the matriarch of this family. Iím not about to let them down. 
Back to Top
Amrit View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 27 2020
Location: Fayetteville AR
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote Amrit Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2021 at 9:01pm
EvilTina,
I was diagnosed of TNBC in October 2020.  In Nov., I had a roller coaster of diagnostic tests-MRIs, ultrasounds, PET-scan, node biopsy then port placement.  In April, I finished chemo and in May I had double mastectomy.  I am still recovering from all that.  Initially, its hard but it gets better! You will get through this!  Hope you have a good team of doctors.  And I agree with the previous post that this site is a great resource, especially, Donna and Steve! 
Best,
Amrit
11/3/20 IDC 2cm, brca1+, AC-T neoadjuvant treatment, bi-MX 5/26/21
Back to Top
kirby View Drop Down
Senior Member
Senior Member


Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1060
Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2021 at 5:15pm
EvilTina,

 I don't come on the site often and post even less. I was dx 20 years ago when my daughters were 9 & 13. I was rather lucky....TN hadn't been named yet so there wasn't the big fear/scare factor that there is now. the beginning time of the unknown is the worst. I would stay up after the kids went to bed reading Susan Love's Breast Book cover to cover trying to garner any knowledge possible. The best advice given to me was to allow myself 15 minutes daily for a cry/pity party, whatever. Having that permission to not always be strong truly helped. 

You will get thru this, 

Kirby
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
Back to Top
EvilTina View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 20 2021
Location: Astor
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote EvilTina Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2021 at 6:19am
thank you for your response and encouragement. Can anyone advise whether they have used the cooling caps to prevent hair loss during chemo. If you did use them was it hard to get used to the freezing head and how difficult is it to manage keeping the caps cold during the chemo process. Iím getting ready to begin chemo the first week of July so I am trying to consider all my options. I currently have a long beautiful hair and Iíve never considered what I might look like without it and how I might feel not having hair. Also were you ladies able to continue working during the entire process? So far Iíve missed a lot of work just going through the testing phase. I have a lot of PT time stored so that isnít the issue.  Any advise is welcome.

Edited by EvilTina - Jun 23 2021 at 8:39am
Back to Top
Amrit View Drop Down
Newbie
Newbie
Avatar

Joined: Nov 27 2020
Location: Fayetteville AR
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote Amrit Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2021 at 10:53am
EvilTina,
I was given 4xAC followed by 12xT.  During AC, I couldn't work in the week of treatment but I could do some work in the following week. I worked from home during my chemo.  I am a teacher in a university, so my work involved teaching and research. However, during 12xT treatments, I was quite active but sometimes needed a short nap in the afternoon.
I did not use the cooling cap. All the best for your treatment!
11/3/20 IDC 2cm, brca1+, AC-T neoadjuvant treatment, bi-MX 5/26/21
Back to Top
kirby View Drop Down
Senior Member
Senior Member


Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1060
Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2021 at 3:51pm
I did work while having AC. I would have an infusion on Monday and be ready for work on Wednesday. I usually worked Wednesday thru Saturday. For the last 2 treatments I think I took Wednesday off or at least 1/2 the day off. Iím a hairdresser and work by appointment. I would also have to space my appointments doing 2-3 then have a break to go sit in a quiet place to regroup and gather energy. I also did acupuncture during tx and credit that with helping me thru. I didnít start acupuncture until a day or so after first infusion but thereafter booked it for directly after my infusion. I could definitely tell the difference between the first time and subsequent times. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
Back to Top
cookie54 View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2020
Location: 08012
Status: Offline
Points: 24
Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 23 2021 at 7:22pm
I didn't use a cold cap either. I had AC , had chemo on Thursday so that if I wasn't feeling well I would be down on the weekend. It worked well for me that way and took pto as needed. You will know what works best for you as you go along. Best wishes with your treatment.
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
Xeloda2/21,8rnds


Back to Top
EvilTina View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 20 2021
Location: Astor
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote EvilTina Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2021 at 10:55am
hi you ladies are using abbreviations that Iím not familiar with yet. AC, etc. please advise.
Back to Top
cookie54 View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2020
Location: 08012
Status: Offline
Points: 24
Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2021 at 9:15pm
Sorry, So "A" is Adriamycin "C" Cytoxan "T" Taxol and Taxotere. This is the most  common treatment that is typical for TNBC.
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
Xeloda2/21,8rnds


Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13444
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 25 2021 at 2:22pm
Originally posted by EvilTina EvilTina wrote:

hi you ladies are using abbreviations that Iím not familiar with yet. AC, etc. please advise.


There is a really good thread providing many of the abbreviations used on the forum:





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

Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4702
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2021 at 10:11am
Dear EvilTina,

Sorry, I was off the TNBC forum for a few weeks so I missed your thread and the wonderful responses you have received. The TNBC forum is populated by deeply caring participants and I feel it is an excellent resource for people with TNBC. There is a gentleness, kindness and a willingness to share knowledge/experience that permeates this site that I have always found very appealing.

A couple of thoughts-

My daughter was diagnosed with early-stage TNBC in 2004 and she had ACT treatment plus surgeries recommended for someone with the BRCA mutation i.e. bi-lateral mastectomies and gynecologic surgery. She is NED (No Evidence of Disease) 17 years later. I am telling her story to give you, and others, some encouragement. At times, TNBC is very responsive to chemotherapy with good results.

Regarding cold caps here is a link to a Mayo Clinic link-

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-cold-cap-therapy-
can-reduce-hair-loss-caused-by-chemotherapy/


I have helped many women with various types of breast cancer who have felt that the cold cap was a really important part of their treatment. It can be challenging and expensive, but it can work.

The cold cap was not available when my daughter had her treatment in 2004/5. She had beautiful, wonderfully thick hair and was given an exact timetable as to when she would lose it. It was further recommended to her that she see a hair stylist to shave her head prior to her losing her hair so that she could get a wig fitted. I went with her to the hair salon and one of the images I shall never forget was her wincing when the first of the buzz cut was done down the middle of her scalp. I think a little part of me was severely damaged at that moment and that is when I realized how painful cancer treatment can be on many levels.

I found a book called Turning Heads Portraits of Grace, Inspiration and Possibilities
by Jackie Hunsicker. It is a beautiful book and the basic, upbeat, message is "I may have lost my hair but I am still here and doing well, thank you."

https://www.amazon.com/Turning-Heads-Portraits-Inspiration-Possibilities/dp/0977007405/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr= 

I just checked Amazon and the book is now available in the Kindle edition for a nominal cost. I would definitely recommend it to those here who would like to have an inspirational book. I was fortunate to become good friends with the author who was a breast cancer survivor at the time we met. She was an extraordinarily lovely woman with a heart of gold. I miss her.

Welcome to our family, Evil Tina. If you would ever like to talk please feel free to send me a PM and I would be happy to send you my phone number and/or a Zoom invite. I am not a medical professional but have helped over 1000 people in the last 17 years and there are no charges.

You can also write me at info@sagepatientadvocates.org 

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
Back to Top
LorraineHelen View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 07 2021
Location: Uk
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote LorraineHelen Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2021 at 8:35am
Hi
Newly diagnosed tnbc. Scared to death. Waiting MRI scan as CT inconclusive so has really scared me. Have had 3 weeks of chemo so far. Scheduled for chemo then mastectomy then radiotherapy. Also getting immune injections. I am finding this really hard as I now need to wait for MRI then results to see if spread then what happens to me. Reading around this subject is very depressing and negative. Feel completely alone and that I have had my future taken from me. I am very brave in front of my family but my head is mashed    How so I cope
Back to Top
EvilTina View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 20 2021
Location: Astor
Status: Offline
Points: 6
Post Options Post Options   Thanks (0) Thanks(0)   Quote EvilTina Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2021 at 8:55am
Hi, Iím also new at this.  Tommorrow is my 1st chemo day.  Iím 53, scared and feel like you do.  You go through life trying to be the best person you can be only to be slapped in the face with cancer.  Like what did I do to deserve this.  All I can say is keep fighting.  Yes we have a long hard road ahead, but that is life.  There are so many benefits yet that we haveníít enjoyed.  There is also a TNBC facebook group that I belong to that has been most helpful also.  Best wishes for a speedy recovery.
Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4702
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2021 at 9:19am
Dear LorraineHelen,

It was very painful to read your post. Sorry, you are going, understandably, through such agony. I want to tell you that you are not alone. If you spend some time going through the threads on this site I think you may be more hopeful. There are many success stories here including my daughter's experience that shows that at times TNBC is very responsive to chemo. She was diagnosed in August 2004 and almost 17 years later she is NED (No
Evidence of Disease). 

I would suggest you try to make sure that your Breast Medical Oncologist is an expert in TNBC. I have helped women in the UK for the last 10+ years and may have some suggestions for you that are useful. I am happy to set up a Zoom meeting at some point, soon, including today. It's 6 a.m. in San Diego, as I write this and 14:00 for you in the UK. Please send me a PM and let me have your email address or write to me at info@sagepatientadvocates.org

I am not a medical professional and will not give you medical advice. Nevertheless, I am hoping to be a good resource for you, if you would like to talk. There are no charges from SAGE or myself and SAGE Patient Advocates is an independent non-profit foundation that does not accept donations from physicians, cancer centers, drug companies etc. Nor do I, personally.

Wishing you good luck with your treatment plan.

warmly,

Steve


Edited by SagePatientAdvocates - Jul 07 2021 at 9:20am
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
Back to Top
LorraineHelen View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 07 2021
Location: Uk
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote LorraineHelen Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2021 at 9:45am
Thank you. I am just so so scared. I cannot find anything encouraging. My Consultant I believe is excellent and has worked around the World. She has me on a plan but will it work. I went from you have stage 2 dcis to you have tnbc to suspicious scans need mri. Need to wait for that then results how could it get any worse. When I go back no doubt it has spread then what. I have had three chemo sessions donít know if itís made any difference as yet donít feel any different. Could feel axillary node before canít feel it now so donít know if that means anything. Lump in breast I cannot tell any different. My mind is driving me mad. I had dealt with each section of bad news ok but this needing further scan and the implications from this is way to difficult to compartmentalise. I need hope there seems to be non anywhere.
Back to Top
cookie54 View Drop Down
Newbie
Newbie
Avatar

Joined: Oct 24 2020
Location: 08012
Status: Offline
Points: 24
Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2021 at 6:37pm
Hi LorraineHelen, I understand all the fear, we all are going through that but you just can't let fear take over! Fear ends when faith begins. You have to find a way to have your fearful pity moments but then move on. It's so important to keep a positive outlook even when things may seem dismal. Take each small positive thing to boost you up! 
The fact that your lymph node size has decreased is a great thing! So it's great that means your body is reacting to your treatment. Try to keep your mind busy, read, exercise, meditate use whatever outlet feels good to you. 

There are many times scans can be inconclusive and need additional imaging. It is easy to let your mind go crazy with different scenarios. There are some things that are best seen on MRI, Ultrasound etc. and need a different way of looking at it to best determine what it is. It doesn't necessarily mean it's something malignant.

Yes and please read the success stories! Also on the forum of breastcancer.org there are numerous categories and one is success stories. We are all here for you and understand how hard it can be to sort through all these emotions! Hugs and best wishes.
AndreaHug   



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
Xeloda2/21,8rnds


Back to Top
LorraineHelen View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 07 2021
Location: Uk
Status: Offline
Points: 3
Post Options Post Options   Thanks (0) Thanks(0)   Quote LorraineHelen Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2021 at 7:10pm
Thank you Andrea your kind words are encouraging. The fear is difficult but you are right I need to work through it. I will hold onto the positives and occupy myself. I have a wonderful family but struggle to let them see my fear. I am brave and strong in front of all of them as I donít want them to worry. I know I have to be positive and I try and tell myself all the time I can do this I can get through this but low moments are hard. You have helped and I thank you. Strangers in the dark holding out there hands is powerful. Thank you 😊
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.