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Newly diagnosed

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Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13777
Printed Date: Jan 25 2021 at 12:28am
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Topic: Newly diagnosed
Posted By: jenniferlcw
Subject: Newly diagnosed
Date Posted: Jan 08 2021 at 11:28am
Hello! My name is Jennifer, and I'm from northwest Ohio. I'm 48 years old and was recently diagnosed with TNBC, Stage IIB. After noticing pain in my right breast and a growing palpable lump, I moved up a previously scheduled mammogram. I was diagnosed after an ultrasound, biopsy, and breast MRI, which confirmed that I have a tumor about 3-3.5 cm that has not spread into the chest wall or into the lymph nodes. I'm currently awaiting results of genetic testing, although I have no family history of breast cancer.

My treatment plan begins with chemotherapy (4 rounds of AC, followed by 12 of Taxol), and I finished the first round on Wednesday, followed by a Neulasta shot on Thursday. I am feeling pretty good so far--just some fatigue and mild queasiness. I have been drinking a lot of water and taking meds as prescribed, supplemented with ginger gum, peppermint drops, and tea. I am thankful to have the support of my husband and daughter, who is a physician, as well as my extended family.

I look forward to connecting with you all!





Replies:
Posted By: Amrit
Date Posted: Jan 08 2021 at 12:09pm
Hello, I am 55 yrs old located in NW Arkansas. I was diagnosed of TNBC on Nov 3rd and later as BRCA1+. I have had MRI, CT, PET but none of the doctors have staged my cancer so far. My tumor in left breast is 3 cm in MRI and 1.8 cm in ultrasound. I think one of the doctors said that MRI overestimates tumor size. Not sure which diagnostic is used for staging the cancer or whether they do that after the surgery.

I started AC-T treatment on Nov 30th.  So far, I have had 3 rounds of AC with Neulasta in each round.  My 4th AC is scheduled next week.  Due to my BRCA1 mutation, I am heading to mastectomy, as well as removal of ovaries.  I am dreading these upcoming surgeries. 

I will be posting on this forum throughout my treatment. Thank you to all the members, who share their experience!!



Posted By: 123Donna
Date Posted: Jan 08 2021 at 12:23pm
Jennifer and Amrit,

Welcome to this group.  It's a place no one wants to be, but I hope you will find a warm and caring community to help support you.  This forum was my life saver during my journey.  It kept me sane and connected with people that understand what you are going through. 

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



Posted By: SagePatientAdvocates
Date Posted: Jan 08 2021 at 3:57pm
Dear Jennifer and Amrit,

I echo Donna's welcome to both of you. 

Wishing, both of you, much success with your treatment plans.

Jennifer, I think it is good that you will have genetic testing, despite "no family history of breast cancer." I personally think that, ideally, every woman under the age of 65, with breast or ovarian cancer, and other cancers, should have genetic/molecular testing. I believe that will happen in the next five years and eventually everyone will be tested even absent a family history. I have never had cancer (that I know of), yet I have the BRCA 
mutation that I inherited from my mother and passed on to my daughter. The mutations are often hidden on the paternal side.

Amrit, you wrote about having a mastectomy. If that is the case I would make sure you are speaking to a BRCA knowledgeable oncologist as the standard of care for a BRCA+ woman with breast cancer, as far as I know as a non-professional is to consider bi-lateral
mastectomies.

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


Posted By: cookie54
Date Posted: Jan 08 2021 at 7:14pm
Hi Jennifer, I am sorry that you find yourself here but glad you found us! This site has lots of great information that I have leaned on in the past 4 years. It sounds like you have your plan together and that always provides some relief to start treatment. Although there is also some fear and anxiety that most deal with at times.

I also had A/C at the time I was Stage I and no node involvement. I am glad you are feeling pretty well as I also did. Of course you will have your moments especially after Neulasta where fatigue and bone pain set in. Thank God for Claritan for the bone pain, that really helped me. Great that you are staying well hydrated and found ginger and peppermint to help with your nausea.

I also have no family history either but only 5-10% typically are hereditary. I decided on a bilateral mastectomy because I was tired of having breast biopsies! I had 8 biopsies over 9 year period due to very dense breast tissue and mammo's were always suspicious.They say that Lumpectomy vs Mastectomy the survival rates are pretty much equal. So everyone has to make their decision based on what they are most comfortable with.

So glad you have a solid support system, I am blessed also! I wish you all the best with your treatment plan. Hang in there, take one day at a time and before you know it you will be finished. Hugs(())
Andrea/Cookie54



-------------
8/2016,IDC,Stage IA, Grade 3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX;Reconstruction Saline implants
6/20,StageIIIC,Grade3 ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes
Radiation 11/20-12/20



Posted By: cookie54
Date Posted: Jan 08 2021 at 7:51pm
Hi Amrit, I am also sorry you find yourself here but glad you found this site that is full of great information. I am 54 and was diagnosed at 50  and live in South Jersey. I had a bilat mastectomy so I understand your dread of surgery. I find that when I just take it one treatment and one surgery at a time it is certainly more manageable! I would be glad to help if you have any questions regarding your mastectomy. 

My experience wasn't too bad. Yes the drains are uncomfortable but they usually come out
about 2 weeks post surgery. I also had reconstruction with implants so I found the tissue expanders to be uncomfortable, if you are going that route.

You should get a better idea of stage after surgical pathology results. I wish you all the best going forward. Keep your chin up, you can do this one step at a time! Be well, hugs(())
Andrea, cookie54


-------------
8/2016,IDC,Stage IA, Grade 3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX;Reconstruction Saline implants
6/20,StageIIIC,Grade3 ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes
Radiation 11/20-12/20



Posted By: Amrit
Date Posted: Jan 11 2021 at 8:56pm
Thank you Donna, Steve, Andrea for useful information.  I received my last (4th) round of AC treatment today. This is a milestone for me! I will be meeting my onco surgeon for the assessment next week and later start 12 rounds of paclitaxel. 
Thank you for your support!




Posted By: SagePatientAdvocates
Date Posted: Jan 12 2021 at 9:52am
Dear Amrit,

We all wish you much success as you embark on your treatment plan. Good luck!!!!

Just one suggestion. Please ask your medical oncologist for a referral to a Supportive Care physician if one is available to help you through various issues like GI issues, pain management if needed, nausea control and fatigue.

From my experience often the medical oncologist or oncology nurse wants to micromanage those issues and often they don't have the time to do as good a job as a Supportive Care physician who is trained in all of the issues I mentioned. Hopefully if you are being treated at a large cancer center that resource will be available.

Be safe, please, regarding Covid.

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


Posted By: Amrit
Date Posted: Jan 12 2021 at 10:36am
Excellent suggestion, Steve.  I will ask my oncologist about it. At this clinic what they have is a phone-in consultation with physicians 24-7.  I have used this service a couple of times and they call back within 10 - 15 minutes. 
Thanks!
Amrit


Posted By: Rebecca333
Date Posted: Jan 12 2021 at 8:26pm
Hi all, I was recently diagnosed with TNDC Stage 2-3.   I am 69 yrs old.  This is my second time with cancer, first one was Uterine @ 59 yes old. I have a huge family history of breast cancer on the maternal side.
I haven't started treatments yet.   I want the surgery first but Dr's  are leaning towards chemo first.  I would love some advice.


Posted By: SagePatientAdvocates
Date Posted: Jan 12 2021 at 8:49pm
Dear Rebecca333,

Welcome to our TNBC Family. I don't know that anyone here can give you advice. From my experience, and I am a non-professional, most women with TNBC, with Stage
II-III disease, are advised to have chemo first.

Have you had genetic/molecular testing? With your "huge family history" you should have had the testing already and that might affect your treatment plan. Not necessarily chemo first and then surgery but the type of surgery that would be recommended and possibly the type of treatment.

If you would like to talk please send me a PM (Private Message) and I will send you my phone number or invite you to have a Zoom conversation. There will be no charges and the conversation will be confidential.

You can also email info@sagepatientadvocates.org

My sincere condolences regarding your family history and, also, your new diagnosis of TNBC. I have a horrible family history of breast/ovarian cancer and cancer of the pancreas. I inherited the BRCA1 mutation from my mother and passed it on to my eldest daughter who was diagnosed with TNBC at age, 36. Thank God she is cancer-free 16 years later.

We will be here for you. 

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


Posted By: Rebecca333
Date Posted: Jan 12 2021 at 10:13pm
Hi Steve thanks for responding.  I have not had the gene test yet.  Friday I meet with the geneticist.  I'm so glad you shared your daughters story, it gives me hope.  I guess right now it's all just a little overwhelming.  I will definately stay in touch. 
Rebecca 


Posted By: SagePatientAdvocates
Date Posted: Jan 12 2021 at 10:45pm
Dear Rebecca,

Glad you are having testing done...Please make sure they will test your for all the genes that are associated with breast cancer, not just BRCA. There are also other markers that may be helpful in the future such as PDL-1 and TMB. A good geneticist is a good place to start. The inherited mutations can generally be done with a blood draw or saliva. Some of the other tests require tumor tissue. If enough tumor tissue is available from your original biopsy that would be ideal. 

good luck...and if you weren't overwhelmed, Rebecca, I would say that was abnormal. It is good that you are seeking support and trying to gather information. Knowledge is power.

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


Posted By: CMDW
Date Posted: Jan 13 2021 at 5:38pm
Hi Rebecca-

I am answering because I feel my situation is similar to yours in some ways, although I was healthy until age 66-when I was diagnosed with TNBC (now 68 years old).  There is quite a bit of cancer in my family, but not breast cancer (uterine, pancreatic, esophageal).  My comprehensive cancer genetic screenings have come back negative.  

I had a team of three top docs-oncologist, surgeon and radiologist-who met as a “tumor board” and agreed that chemo first was the best option for me.  I had 4 AC and 12 Taxol, then lumpectomy, the 30 rounds of radiation.  

I am a little over one year after completion and all seems to be well.  Met with my oncologist today and he said that since there was no evidence of disease at the time of surgery, my prognosis is good.  The objective is a “complete pathological response” to the chemo.  Your medical team needs to be sure the chemo is working, as well as shrinking the tumor before surgery.  I had never heard of treatment first, but apparently it is done regularly under certain circumstances.  Not advising you at all-just offering encouragement as I am a similar age to you. 

All the best, Cindy


-------------
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO


Posted By: SagePatientAdvocates
Date Posted: Jan 13 2021 at 7:50pm
Dear Cindy,

I hate the internet for important conversations because words can be misinterpreted.
So, please understand that I am writing the following in the gentlest possible way. 

Cindy, you wrote that you "never heard of treatment first." Maybe you meant never heard of surgery first. I think of surgery an/or chemo as treatment and in some instances I have seen women have surgery first and chemo second. In most cases with TNBC I have seen chemo first followed by surgery.

Congrats on your PCR!!!! MANY studies have shown that women who have had a PCR (Pathologic Complete Response) especially with TNBC have much better results than women who don't.

Here is a large meta-analysis published last year.

https://pubmed.ncbi.nlm.nih.gov/32046998/" rel="nofollow - https://pubmed.ncbi.nlm.nih.gov/32046998/

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


Posted By: CMDW
Date Posted: Jan 13 2021 at 10:09pm
Thank you, Steve, for clarification.  I was attempting to use an alternate word for chemo as to not overuse that term.  I did mean that prior to having cancer myself, I had never heard of having chemotherapy before surgically removing the tumor.  Now I know that it is frequently done.  It seems counterintuitive at first-to leave something harmful in the body and slowly shrink it rather than excise it.  But I understand the logic now.

Thank you for the link!  Cindy


-------------
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO


Posted By: DebbieW
Date Posted: Jan 20 2021 at 6:36pm
Hi. I am 48 years old, and was diagnosed late Dec with breast cancer in my right breast during a yearly medical checkup. I had a lumpectomy 6 Jan and yesterday, the histopathology diagnosis was TNBC with pT1c pN0 pM0, AJCC Stage 1A, Grade II. My tumour is 1.1cm and has not spread to the lymph nodes. I have a family history of cancer (breast cancer - maternal aunt and grandaunt, colon cancer - grandfather, mother), while I had precancerous cervical cancer 13 years ago (clear so far since then). 

I am still trying to wrap my mind around everything and come to terms with it all. According to my surgeon, I would definitely need radiotherapy, with chemo as a consideration. I have an appointment to see the oncologist tomorrow to discuss the course of treatment. My greatest concern is chemo. Is it essential for TNBC? I am confused about information that I have read so far. Some articles say that chemo is effective for initial treatment, but TNBC cells are often able to repair the damage to the cancer cells, making it immune to treatment. If so, is chemo still always recommended for treatment post-surgery? As the only caregiver in my family with an aged mother and two younger children, I really dread being incapacitated due to the treatment...

Thank you so much for listening.


Posted By: 123Donna
Date Posted: Jan 20 2021 at 6:45pm
Hi DebbieW,

Welcome and I hope you find this forum helpful and supportive while you go through treatment.  There is some great information listed on this site.  I know you are worried about chemo, but it is doable.

A very good source for information are the NCCN Guidelines.  Please take a look at page 54, Guide 11 for TNBC.  It says if the tumor is larger than 1cm chemotherapy is needed.

https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf" rel="nofollow - https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf

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



Posted By: DebbieW
Date Posted: Jan 20 2021 at 7:24pm
Thank you very much for the warm welcome, Donna.
I guess there is no avoiding chemo then. Does it mean that radiotherapy is not required? According to my surgeon, I still require radiotherapy as I only had a lumpectomy, not a mastectomy. In any case, I will update after my appointment with the oncologist. Praying for the strength to go through this. The thought of recurrence terrifies me.

Debbie


Posted By: jenniferlcw
Date Posted: Jan 20 2021 at 7:59pm
Thank you, Steve. The results of my genetic testing recently came back and showed I am negative for genes associated with breast and gynecological cancers. I'm not sure yet what I'll decide as far as surgery goes, but for now I'm focusing on doing whatever I can to manage the effects of chemo. I appreciate the welcome and support! Smile

Jennifer


Posted By: jenniferlcw
Date Posted: Jan 20 2021 at 8:02pm
Hello, Amrit. I'm glad to meet you! How are you doing with your AC treatment? I am doing 4 rounds of AC every 2 weeks followed by 12 consecutive weeks of Taxol. I'm not sure about my surgery decision yet. I look forward to learning more about how you are doing.

Hang in there,
Jennifer


Posted By: jenniferlcw
Date Posted: Jan 20 2021 at 8:08pm
Thank you, Andrea! I appreciate how you shared your decision to get a bilateral masectomy. You're right about Claritin. I am taking Claritin and Pepcid for bone pain (both suggested by my CNP) and so far it's doing the job. Right now I find myself going back and forth on the surgery decision (lumpectomy v. masectomy, to reconstruct or not), even if my tumor shrinks quite a bit. 

Take care,
Jennifer


Posted By: SagePatientAdvocates
Date Posted: Jan 21 2021 at 12:15am
Dear DebbieW,

Donna has given you an important reference.

Have you had genetic testing?

I know it may be impossible for you to travel with your circumstances and Covid but I think it might be useful to get a second opinion. There is a very good Breast Medical Oncologist in Singapore who is an expert in TNBC. I don't know if she is doing any video conferences but I can try to find out.

If you would like to speak please send me a PM and I can set-up a Zoom conference. There are no charges but I am not a medical professional and the second opinion would come from the oncologist in Singapore. 

welcome to our TNBC family.

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


Posted By: DebbieW
Date Posted: Jan 21 2021 at 2:24am
Steve,
Thank you very much for your warm welcome and kind offer.
I have sent you a PM.
Am truly glad to be a part of this community. Thank you for having me.

Debbie
 


Posted By: Amrit
Date Posted: Jan 21 2021 at 10:21am
Dear Jennifer,
I finished 4 rounds of AC, am still recovering from the 4th treatment. Next, I start weekly Paclitaxel. One thing I want to share about Adriamycin infusion is that when the nurse gives the infusion through a syringe, I used to chill my mouth with a few ice cubes.  I did that for all 10 - 15 minutes during the infusion, and avoided drinking anything warm for another 30 minutes. Once I had a bit of throat irritation, so instead of drinking the melted ice, I used to just spit it our in a bag.  This probably helped me in avoiding mouth sores.
Hope you are drinking a lot of water after the infusion to flush out the drugs and avoid urinary irritation. Wish you all the best for your treatments!
Amrit


Posted By: SagePatientAdvocates
Date Posted: Jan 21 2021 at 1:57pm
Dear Amrit,

The other remedy for painful mouth sores is 'magic mouthwash.'

Here is an article from Mayo Clinic that helps explain-

https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071" rel="nofollow - https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071

Anecdotally, I have seen it help more women than not. Your local pharmacist should be familiar or medical oncologist.

with my love to all here,

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


Posted By: tjpecknh
Date Posted: Jan 22 2021 at 7:39am
I will be having surgery first (Monday) as my tumor is <1cm. Once pathology comes back I'll decide on if I'll have systemic chemo before radiation.

Terri


Posted By: DebbieW
Date Posted: Jan 22 2021 at 9:21am
My oncologist has arranged for 6 sessions of chemo (3 rounds of FEC, then 3 rounds of FEC + Docetaxel every 3 weeks) followed by 20 sessions of radiotherapy. 

1st chemo starts 6 Feb. Have arranged it to be done on Saturdays so as to minimise any disruption to my work and my children's school schedule. Pray the side effects will be manageable. 

Debbie


Posted By: Namay
Date Posted: Jan 22 2021 at 6:45pm
Hello my name is Nathalie and am from Alberta, Canada.  Recently diagnosed with TNBC and don’t understand why I am getting my mastectomy first in a couple of weeks as so many get chemo first. It worries me as I want the cancer out ASAP.  I don’t understand why I wasn’t even given the option Shocked


Posted By: 123Donna
Date Posted: Jan 22 2021 at 6:59pm
Hi Namay,

Can you give us a little more information on your diagnosis?  Stage?  Tumor size?  Any nodes infected?  Location?  Etc.  If we have a little more information, we may be able to understand your situation.

Here is a great source of information on breast cancer:

https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf" rel="nofollow - https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf

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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