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AllisonW35 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 06 2013 at 8:40pm
Alyca, I was diagnosed last November, about a month before turning 35. 1.8 cm, stage 1, grade 3, no lymph involvement. I am currently undergoing ACT chemo. So, the things I wish I had thought of back when I first received the diagnosis: you can get a second opinion on your pathology and with any mammograms, MRIs, etc, from MD Anderson or some other big cancer hospital if you want. You can also get second treatment opinions, which include having chemo before surgery, sometimes by having the physicians teleconference. Pre-surgery chemo wasn't an option for me because we didn't know the tumor was cancerous until it was removed. Grade 3 does mean aggressive but it also means that it usually responds well to chemo. My oncologist says I have at least an 85% chance of it not recurring since I am having chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Whatablessing2002 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2021 at 2:38am
Hello everyone 
My name is Maria and I was newly diagnosed with triple negative breast cancer  in December. My treatment plan for adenocarcinoma is 1st chemo 2nd surgery 3rd radiation. My doctors are saying that I may be able to save my left breast.  It is my hopes that I can but I'm not sure being BC runs in my family. I have so far had 2 rounds of chemo  I have an amazing support team but I would like to connect with others that are on this journey at the present or ones that have traveled and experienced the things or processes already. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2021 at 10:40am
Dear Maria,

Welcome to our TNBC Family,

You have come to the right place for support. The women here are exceptionally knowledgeable and caring. 

Have you had genetic testing? How old are you, please? I am asking because you mentioned that "BC runs in my family."

You also mention that you live in North Carolina. There are two excellent Breast Medical Oncologists who are in North Carolina and who may, if you are interested, try to find out what type of TNBC you have. There seem to be 6 or 7 different types. And it may be useful to find out which subtype you have. 

I am a patient advocate and have helped many hundreds of women on this site who have/had TNBC over the last 12 years. I am not a doctor and will not give you medical advice but I may be able to be helpful to you. If you would like to talk please send me a PM and I will send you my phone number. 

If you would prefer please write me at info@sagepatientadvocates.org 

There are no charges and I would be happy to talk with you.

Good luck with your journey. Also, my daughter was diagnosed with TNBC when she was 
36 years old, in 2004 and August will be 17 years that she is cancer-free. So please try your best to have a positive outlook. And again, welcome.

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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Whatablessing2002 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Whatablessing2002 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2021 at 2:28pm
Thank you so much for that warm  and encouraging invitation.  I just recently had genetic testing  and I just turned 46 in December. I am from  Lumberton NC which is in Robeson County. 
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alyca View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alyca Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2021 at 6:39pm
Hello!  Sounds like you have a great plan in place. I would wonder about getting BRCA tested--at your young age, and having a family history of breast cancer, that seems like a real possibility.

I had BRCA testing, which came back positive for a BRCA 1 mutation.  At the time, I knew of only 1 family member with breast cancer (an aunt, diagnosed at age 45).  I now know that there are TWO BRCA mutations in my family-one from my mom's side and one from my dad's.  We are a one in a million kind of family.  My older sister has a BRCA1 mutation and had prophylactic removal of her breasts and ovaries; my younger sister has a BRCA2 mutation and still has her breasts/ovaries.  I had my ovaries removed about 5 years after my cancer (waited so I could have 2 IVF assisted pregnancies).

Once I had BRCA testing come back positive, my doctors strongly recommended having bilateral mastectomies, which I did.  Definitely the right choice for me.
Diagnosed 3/1/13 with Stage2 TNBC with a BRCA1 mutation; B mastectomies/tissue expanders 3/25/13;5 months dose dense AC-T chemo;last dose 9/11/13. Breast implants 10/17/2013; Nipple creation 2/28/14
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2021 at 8:38pm
Dear Alyca,

Thanks for sharing. Wishing you and your siblings the best of luck.

Alyca, as difficult as the BRCA mutation has been for you and your family it could have been worse.

I have helped 3 women over the last 17 years who inherited both a BRCA1 and BRCA2 
from their parents and they, all, had many health issues. If parents each have the same BRCA allele a Certified Genetic Counselor might advise them to not have a family because if the fetus carries both mutations it will not survive.

In my unprofessional opinion, anyone with a BRCA1 or BRCA2 mutation who has breast cancer might consider seeing a Breast Medical Oncologist who is BRCA savvy. There are several BRCA Clinics in the United States. One is the Basser Center in Philadelphia (part of the Univ. of Pennsylvania), one is at UCSF in San Francisco and another is just starting at
Cedars-Sinai in Los Angeles. In addition, many of the top cancer centers in the U.S. have at least one Breast Medical Oncologist who is knowledgeable about BRCA.

My daughter is now 16 years NED (No Evidence of Disease) and inherited the BRCA mutation from me. She had TNBC at age 36 and had bi-lateral mastectomies and gynecologic surgery. I pray that she will not have a recurrence. She paid a heavy price,
physically and psychologically having the surgeries but at least she is here and healthy.

There are a number of researchers working to come up with a 'fix' for the BRCA mutation. That would be truly marvelous. 

The other unsolved mystery is why 70% of BRCA+ women, have TNBC when they have breast cancer. The converse is not true. 70% of women with TNBC do not have the BRCA mutation. But is there some connection between BRCA and TNBC that could help us understand both BRCA and TNBC?

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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MelissaG Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2021 at 4:10pm
Hi there,

My mom was recently diagnosed with TNBC and I'm trying to be the best advocate for her that I can. I worry she will hop on the internet and fall into a rabbit hole of fear, so I'm hoping I can be as supportive and educated as possible.

She was diagnosed about 2 weeks ago with well to moderate differential, invasive mammary carcinoma with mixed ductal and lobular features and the tumor is 6 millimeters (so .6 centimeters). After discussion with her surgical oncologist, she is moving forward with a lumpectomy and during that surgery they will check the lymph nodes to see if it has spread. I guess from there it will determine if chemo is necessary, but they are not recommending it before the lumpectomy. Regardless of chemo, she will need 15 rounds of radiation. About 10 or so years ago, she was tested for the BRCA gene and it came back negative, however she is now going to do additional genetic testing.

I guess why I'm here is to find out others experiences. I'd love to be able to share stories of strength and survival. We'll know more in the next few weeks (her lumpectomy is scheduled for March 4), but am curious to hear what path others have gone down.

Thank you all in advance for your support and for this forum.
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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: Feb 24 2021 at 9:03pm
Hi Melissa,

Your mother is lucky to have you to advocate for her.  A good support system is so important and really helps while going through treatment.  You said your mom was tested years ago for the BRCA gene.  Now they are finding many more genes associated with breast and ovarian cancers besides the BRCA gene.  Additional genetic testing is so important.  It appears they caught it early and hope all goes well with her surgery next week.  Keep us posted.

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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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 24 2021 at 10:40pm
Dear Melissa,

I totally agree with Donna that your mother is lucky to have you advocate for her.

Has your mother seen a breast medical oncologist who is TNBC savvy in addition to a breast surgical oncologist? 

And has she seen a breast radiation oncologist or is the breast surgical oncologist managing her care?

Happy to talk to you privately, if you wish...You can send me a PM and I can send you a Zoom invite or you can write to me at info@sagepatientadvocates.org 

I am not a medical professional and will not give you medical advice. And there are no 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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Silver View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver Quote  Post ReplyReply Direct Link To This Post Posted: Feb 27 2021 at 5:35pm
Hello,
I was diagnosed a month ago with TNBC and I have already started chemotherapy. I am an American who lives in the Netherlands and it is important to me to be about to write and read about my own experience in English. I am still waiting to hear the results of the genetic test to find out if I carry the BRCA 1 or 2. I have had a slow-thyroid for many years, and I was wondering if there might be a correlation to this and contracting breast cancer. I had gone to an endocrinologist in December thinking that might be the cause of my not feeling well, but a month later I had an MRI where they found a tumor that is 1.2 cm. Before that I had cysts and it was commonly acknowledged that I should be monitored but for some reason I went off their radar. Did you know that women who have dense breast tissue are twice as likely to get breast cancer? 

Would you good to receive some support from the other side of the Atlantic! Thank you. 

Dark Cloud with Silver lining 
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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 27 2021 at 5:56pm
Dear Silver,

You asked if it is known that women with dense breast tissue are twice as likely to get breast cancer? I have read that it is definitely more likely that women with dense breast tissue get breast cancer more often but have not seen studies were it is twice as likely.

What is very important though is that women with dense breast tissue who get breast cancer do not have shorter survival.

https://www.cdc.gov/cancer/breast/basic_info/dense-breasts.htm#:~:text=Women%20with%20dense%20breasts%20have%20a%20higher%20chance%20of%20getting,%2Ddense%20(fatty)%20breasts.

We are happy to support you if that is what you mean. 

Also, there seems to be a link between thyroid cancer and breast cancer. Not sure what you mean by a "slow-thyroid?"  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4770576/

We all wish you the best as you fight TNBC and we will always 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amrit Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2021 at 11:38am
Dear Silver,

As I was waiting in a clinic on the day of my biopsy and watching their informational TV channel, I heard exactly what you said that women with dense breast are more likely to be diagnosed with breast cancer.  But I did not know the relation with thyroid. 

I was diagnosed with TNBC back in October with 2cm tumor.  I am undergoing AC-T chemo treatment.  I have completed 4x AC and 5x T.  My onco-surgeon said that TNBC generally responds well to chemo.  I am hopeful!!!!

This is an excellent forum where you will find lots of information and support! Wish you a successful treatment and full recovery!

regards,
Amrit
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2021 at 6:48pm
Yes, this seems to be a fact, that women with dense breast tissue are at greater risk. There was an article in the Dutch newspaper in which the Dutch radiologists were pleading with the Health Minister to allocate more funding for MRI breast scans as this is the best way to detect tumors when you have dense breast tissue. 

I would like to learn more about the thyroid and cancer but still need to research this more. When you have hypothyroidism, as it is called, your immune system is weak which could perhaps make you more likely to contract cancer. I'll keep everyone posted about this aspect. 

Silver, over and out 

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Silver View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Silver Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2021 at 6:56pm
Dear Steve, 
Thank you for the two articles. I work at a university with researchers where I edit the English of their academic articles and I always appreciate having scientific evidence. I had not thought of going to the CDC site so that was very nice that you pointed me in that direction. Yes, it is a relief to know that if you have dense breast tissue you still have the same chance of survival. The other research article on thyroid cancer and breast cancer I still need to download and secure access to it. My thyroid complaint is hypo-thyroidism. Please see my response below to Amrit. 

I'm still waiting to see the results of blood tests to determine if I carry the harmful variant of BRCA so will keep you posted. Fingers crossed that this is not the case as I have two daughters and three granddaughters. 

Silver over and out... 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 01 2021 at 11:53am
Silver, I have not heard of having hypothyroidism having a correlation to cancer. I was dx with hypothyroidism after having tx. It seems that that is not uncommon but has never been stated as result of chemo. 
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 (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 02 2021 at 8:14am
When I was in my 20's my ob/gyn dx me with very dense breasts.  At that time, there wasn't a mention of increased risk to breast cancer.  Even so, my dr started routine mammograms while in my late 20's.  Since then, they now know there is a direct increased risk. 

Regarding hypothyrodism, I was dx after finished treatment.  My family has a history of Hashimotos so I figured at some point I'd be dx with hypothyroidism.  Cancer treatment kicked the symptoms into high gear.  My TSH levels were 5 times higher than normal the year after finishing chemo.

I found this study:

Hypothyroidism and hyperthyroidism and breast cancer risk: a nationwide cohort study

Conclusions

We found an increased risk of breast cancer in women with hyperthyroidism and a slightly decreased risk in women with hypothyroidism indicating an association between thyroid function level and breast cancer risk.

https://eje.bioscientifica.com/view/journals/eje/174/4/409.xml




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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Phelangrace Quote  Post ReplyReply Direct Link To This Post Posted: Mar 03 2021 at 7:42pm
Good evening ladies. This is my first post and I'm so glad to have the opportunity to chat with other women going through a similar situation. I am going in for surgery on the 10th of this month. Lumpectomy and lymph node. My genetic testing has not come back yet and I'm anxious to see whats what after all the results are in and I know what my course of treatment will be. I do know that it is grade 3, stage 1.
Thanks in advance for your help.Big smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SPH0611 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 08 2021 at 4:57pm
Hi! Iím also newly diagnosed. Never wanted to be a member of this club! Not sure if this is the correct way to post but here goes. Iím 64 and was diagnosed on 2/4. Triple negative 2mm left breast no node invasion according to biopsy and MRI. Decided on double mastectomy and had that procedure along with reconstruction on 3/3. Feel good about that decision. Have appointment with breast surgeon on Thursday to get pathology results. First appointment with oncologist 3/16. Since this is a ďrareĒ form of bc do you all recommend finding an oncologist with expertise in treating this specifically? Iím blessed to live in the DC area where I have options. Just wondering if thereís a recommendation out there. So happy to have found you all! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 08 2021 at 7:05pm
Hi Maria,

With apologies it looks like I replied to your post of January 25th but did not see your second post which was January 26th. My only excuse, and not a good one, was that the 26th was my 77th birthday and to be honest, with all the cancer in my family, I never thought I would make it to this age but here I am. 

I would like to speak with you if you are up for a conversation. Please send me a PM or if you prefer send me an email @ info@sagepatientadvocates.org 

I can invite you to a Zoom call. I am not a medical professional but I have some good ideas in North Carolina for TNBC savvy oncologists. There are no charges.

Hope your treatment is going well.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 08 2021 at 7:17pm
Dear SPH,

One of Groucho Marx's (probably before your time) best lines was "I would never want to join a club that would accept me as a member." So sorry you have need to be here but I believe you have come to the right places. I have been posting here for 10+ years and our family is filled with people who really care and 'get it.'

I strongly believe you should see an oncologist who is TNBC savvy. I would be happy to try and help you with that search.

You can send me a PM or reach me at info@sagepatientadvocates.org

I am not a medical professional and will not give you medical advice but I hope to be of use to you. There are no charges. Also SAGE Patient Advocates does not accept monies from doctors, cancer centers, drug companies etc.

You did not mention genetic testing in your post. I hope you have done/or are doing that.

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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