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123Donna 
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13385 |
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 Topic: Newly diagnosedPosted: Jan 22 2021 at 6:59pm |
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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: Donna
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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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Namay
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Joined: Jan 22 2021 Location: Canada Status: Offline Points: 1 |
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Posted: Jan 22 2021 at 6:45pm |
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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
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DebbieW
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Joined: Jan 20 2021 Location: Malaysia Status: Offline Points: 4 |
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Posted: Jan 22 2021 at 9:21am |
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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
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tjpecknh
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Joined: Dec 18 2020 Location: NH Status: Offline Points: 7 |
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Posted: Jan 22 2021 at 7:39am |
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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
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4624 |
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Posted: Jan 21 2021 at 1:57pm |
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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 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
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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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Amrit
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Joined: Nov 27 2020 Location: Fayetteville AR Status: Offline Points: 4 |
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Posted: Jan 21 2021 at 10:21am |
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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
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DebbieW
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Joined: Jan 20 2021 Location: Malaysia Status: Offline Points: 4 |
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Posted: Jan 21 2021 at 2:24am |
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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 |
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SagePatientAdvocates
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Posted: Jan 21 2021 at 12:15am |
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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
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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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jenniferlcw
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Joined: Jan 08 2021 Location: Perrysburg, Ohi Status: Offline Points: 5 |
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Posted: Jan 20 2021 at 8:08pm |
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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
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jenniferlcw
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Joined: Jan 08 2021 Location: Perrysburg, Ohi Status: Offline Points: 5 |
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Posted: Jan 20 2021 at 8:02pm |
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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
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jenniferlcw
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Joined: Jan 08 2021 Location: Perrysburg, Ohi Status: Offline Points: 5 |
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Posted: Jan 20 2021 at 7:59pm |
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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!
 Jennifer
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DebbieW
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Posted: Jan 20 2021 at 7:24pm |
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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
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13385 |
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Posted: Jan 20 2021 at 6:45pm |
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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. Donna
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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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DebbieW
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Posted: Jan 20 2021 at 6:36pm |
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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.
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CMDW
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Joined: May 10 2020 Location: Michigan Status: Offline Points: 42 |
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Posted: Jan 13 2021 at 10:09pm |
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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
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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
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SagePatientAdvocates
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Posted: Jan 13 2021 at 7:50pm |
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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. Steve
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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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CMDW
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Joined: May 10 2020 Location: Michigan Status: Offline Points: 42 |
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Posted: Jan 13 2021 at 5:38pm |
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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
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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
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SagePatientAdvocates
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Posted: Jan 12 2021 at 10:45pm |
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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
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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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Rebecca333
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Joined: Jan 12 2021 Location: Seattle Status: Offline Points: 2 |
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Posted: Jan 12 2021 at 10:13pm |
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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
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SagePatientAdvocates
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Posted: Jan 12 2021 at 8:49pm |
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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
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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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