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cgiver View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cgiver Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2021 at 11:44pm
Hi all,
Iíve been reading for a few weeks and finally making my first post. My 43yo wife was diagnosed end of January with TNBC 1.4cm right breast no clinical node involvement. Itís Grade 3, no LVI. Her last MRI says 2.1 cm so I guess we are somewhere between Stage 1 and 2. Thankfully I found this board early on and was able to connect with Steve (SagePatientAdvisors). This man is a saint and has helped tremendously. I canít thank him enough.

With his help we have been to MD Anderson in Houston and enrolled in the Artemis trial which will provide bio marker and molecular testing on the tumor while my wife starts ďstandard of careĒ AC chemo. They monitor the success and if itís not as hoped they use the testing results to try to either adjust the 2nd phase chemo plan and/or direct to a clinical trial.

We have also been to Siteman in St. Louis with another great oncologist that specializes in TNBC and will provide the standard of care chemo locally.

Hopefully we get the response we hope for through AC/T, if not we are encouraged that there are more options to add pre and post surgery to help. I feel like we are in good hands at both of these top cancer centers with fantastic DOCs recommended by Steve.

Chemo starts a week from today. We were also offered other trials that used T+Carboplatin and immunotherapies up front instead of AC but are opting for AC first to maintain synergy between Artemis and Siteman, then consider adding other therapies after AC depending on how things look.

Itís been a scary few weeks with lots of anxiety, itís getting a little better now but I imagine thereís always the next worry through every stage. I feel bad my wife has to lose her hair and deal with all this right as summer is rolling around again. But we are starting to accept and trying to stay hopeful that nodes do not become involved, chemo does a good job and we come to a clear decision on the best type of surgery. She has no known breast cancer mutations but has one variant of unknown signifigance in BRCA2.

Best of luck to all here, thanks for all the info thatís been so helpful in my research. 


Edited by cgiver - Mar 09 2021 at 11:46pm
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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: Mar 10 2021 at 8:11am
Cgiver,

Hello and welcome to the club no one wants to join.  I'm so glad Steve was able to help you and your wife.  He's truly an angel to our community and has helped so many of us. I'm from St. Louis too and you are definitely in good hands at Siteman.  The Artemis trial seems very impressive with molecular testing.  Wishing you both good results as she begins treatment.

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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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: Mar 10 2021 at 8:14pm
Hi, Sorry that you and your wife are in the TNBC club ,none of us want to be here. Glad you found this site as it it filled with wonderful support and information!

 I know it is definitely a scary time in your lives but it sounds as if you have a great plan in place. I agree that the hair loss is a bummer and challenging in the summer. It was definitely a tough loss for me too. I just always reminded myself that my life was more important than my hair and I accepted it as time went on.

Best wishes on great response to her plan!


8/2016,IDC,Stage IA, Grade 3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX;Recon Saline implants
6/20,StageIIIC,Grade3 ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes
Rad11/20-12/20
Xeloda 2/21


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Post Options Post Options   Thanks (0) Thanks(0)   Quote SPH0611 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2021 at 2:27pm
Hi! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SPH0611 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2021 at 2:32pm
Hi! Letís try this again. Newly diagnosed with Tnbc 2/4. Had double mastectomy on 3/4. Went for post op today and found cancer was in one sentinel node. I am terrified! I know chemo and radiation are in my future and Iím okay with that but itís the bone scan and CT scan coming up that has me overwhelmed. Iíve been keeping a positive outlook but this has knocked me down. Any words of advice? Iím reeling. I live in the DC area and I believe have access to excellent doctors but is there an expert for this cancer? Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2021 at 2:50pm
Dear SPN,

Sorry for your Sentinel Node results. 

I responded to you previously and would still welcome contact from you. The best plan for me would be a Zoom call. Unfortunately, I am doing some surveillance tests tomorrow a.m. but I could speak with you, if you would like, in about two hours or tomorrow night, or over the weekend. 

Please send me a PM if you are interested. There are two breast medical oncologists who are TNBC knowledgeable and whose contact info I can give you but I would need to speak to you first.

Alternatively, please send me an email at info@sagepatientadvocates.org 

Please try to take a deep breath and re-group. TNBC can respond very well to treatment and hopefully that will be the case with 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 gigi21 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 13 2021 at 8:48pm
Hi.  I'm newly diagnosed, 3/8/21.  I'm blessed that my doctors are moving very fast to get scans and results back.  My next appt is on Tuesday, which should get me results from the PET and MRI.  I'm scared, what if them moving so fast is actually a bad thing.  The doctor is treating me as triple negative because the ER percentage was slow low and other two, of course, were negative.  I don't have history of breast cancer in my family.  

I noticed on another post about Vit D... My Vit D level was 12.
I've been on 50k units of Vit D for a week now and can't believe the difference.

I'm trying to stay positive and not think too much.... but it catches you of guard at the worst times.  The worst thoughts I have are...of course what ifs... but how in the world do we pay for this?  Do we have the right doctor?  Do I get a second opinion once I have the scan results?  Which way to go?  What are clinicals and what can they do for me?

Any direction on these questions would be great.  I know once I get a treatment plan that I will have more, but I have to start somewhere.  

Thank you
GiGi
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Gwen60 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 22 2021 at 11:37pm
I was diagnosed a month ago today. I was told surgery in three weeks followed by radiation with a possibility of chemo. I got a letter in  the post for another surgeon appointment on May 5 so nothing happening til after then. The waiting is hard. Have others with TNBC not had chemo?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Molasses Quote  Post ReplyReply Direct Link To This Post Posted: Apr 23 2021 at 1:46pm
Gwen60
I'm new here too but from what I understand Chemo is the best choice for systemic treatment for triple negative cancer.  I have been to a Univ hospital and radiation is also in the cards if lymph nodes are involved.  But after chemo.  Get a second opinion.


Edited by Molasses - Apr 23 2021 at 1:47pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Christandiva Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2021 at 2:44pm
Hi,

I was recently diagnosed with Triple Negative Breast Cancer in Feb 2021.  I recently had a double Mastectomy and they removed a 6 cm mass.  Prior to surgery I had a number of imaging done including a MRI with contrast and all lymph nodes, chest wall was clear.  The path report post surgery showed negative lymp nodes as well.  

I am now almost 3 weeks post surgery and they requested a CT SCAN AND A 1.4 mass showed up.  The surgeon wanted to do surgery again but I was so distraught she though about it and said go to Radiology and they can do an ultrasound and needle biopsy.  I headed to Radiology to get that fine but the head of Radiology didnít recommend a biopsy because she said she had seen it a lot and was 98 percent sure it was a reactive lymph node.  I left but not knowing created anxiety.  I decided to go back last week and the Radiologist called me yesterday and said it was cancer ...TOTALLY HEARTBROKEN.  It now looks like one lymph node positive but they say all the others are negative.  I no longer trust then.  The surgeon lied and told me she took out 1 lymph node and found out from her PA she took out 4 lymph nodes and gave me a copy of my path report,she also mentikned that my insurance company would not pay for a CT SCAN AT the onset of my diagnosis and I called the insurance company and they said they would pay anyone it is medically necessary, she also mentioned that I only need low dose and no CT scan  the Oncologist she referred me to they never discussed my case and she dies not appear to be well versed in TNBC.

I have an appointment outside of that medical group with a Breast Oncologist who focus on triple negative on May 3rd.

I just pray that will start my road to healing.

I will live and not die and I will see the goodness of the Lord in the land of the living and I will see our daughter grow up and become a responsible adult.  I am healed by his strips and medicine..IS MY EVERYDAY PROCLAMATION.

Thanks for your support 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Christandiva Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2021 at 2:46pm
 Hi,

I was recently diagnosed with Triple Negative Breast Cancer in Feb 2021.  I recently had a double Mastectomy and they removed a 6 cm mass.  Prior to surgery I had a number of imaging done including a MRI with contrast and all lymph nodes, chest wall was clear.  The path report post surgery showed negative lymp nodes as well.  

I am now almost 3 weeks post surgery and they requested a CT SCAN AND A 1.4 mass showed up.  The surgeon wanted to do surgery again but I was so distraught she though about it and said go to Radiology and they can do an ultrasound and needle biopsy.  I headed to Radiology to get that fine but the head of Radiology didnít recommend a biopsy because she said she had seen it a lot and was 98 percent sure it was a reactive lymph node.  I left but not knowing created anxiety.  I decided to go back last week and the Radiologist called me yesterday and said it was cancer ...TOTALLY HEARTBROKEN.  It now looks like one lymph node positive but they say all the others are negative.  I no longer trust then.  The surgeon lied and told me she took out 1 lymph node and found out from her PA she took out 4 lymph nodes and gave me a copy of my path report,she also mentikned that my insurance company would not pay for a CT SCAN AT the onset of my diagnosis and I called the insurance company and they said they would pay anyone it is medically necessary, she also mentioned that I only need low dose and no CT scan  the Oncologist she referred me to they never discussed my case and she dies not appear to be well versed in TNBC.

I have an appointment outside of that medical group with a Breast Oncologist who focus on triple negative on May 3rd.

I just pray that will start my road to healing.

I will live and not die and I will see the goodness of the Lord in the land of the living and I will see our daughter grow up and become a responsible adult.  I am healed by his strips and medicine..IS MY EVERYDAY PROCLAMATION.
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I was diagnosed a few weeks ago and am having a hard time.  I'd like to connect...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 24 2021 at 8:41pm
Dear gigi 21, 

I am sorry for my delayed response but I had some surgery a few weeks ago and the results were good and I am now fully recuperated.

Dear gigi 21, Gwen 60, Molasses, Christandiva, mariejean74, 

I have been actively involved on this wonderful forum for the last 12 years and have never seen so many women posting on the Newly Diagnosed Forum within such a short period of time. I have helped many hundreds of women, with TNBC, over the last 12 years and would like to help any of you that would like my help. 

I need to explain to all of you that I am not a medical professional and will not give you medical advice but I am hopeful that I can be a good resource for you by suggesting Breast Medical Oncologists who are highly experienced in TNBC and hopefully will be able to see you in clinic, if you are willing to get a second opinion or even multiple opinions.

Would like to interact with each of you via Zoom consults. You can send me a PM with your email address and best contact phone number. Or it may be easier to send me an
email at info@sagepatientadvocates.org

I will reply to all of you as quickly as possible and set-up the Zoom conferences. It is fine to write to me today or tomorrow as well as next week. I have an extremely busy Monday so it will be difficult to talk to all of you Monday but I am willing to start the conversations
tonight or tomorrow and starting Tuesday the 27th I will have more availability.

Also, please note that there will be no charges from SAGE Patient Advocates or myself for services and also as a matter of policy SAGE does not accept monies from oncologists, cancer centers, or drug companies. Also, I will never discuss individual cases on the Forum; all information is kept confidential.

Looking forward to hearing from anyone who would like to reach out. Due to Covid, I have not been on a plane for the last year except for my recent surgery. I am a people person and have spent six months each year for the last five years traveling around the country accompanying people I have been helping to various cancer centers and going to various cancer conferences. Zoom is not as good from my experience as an in-person meeting but much better than a phone call. Gives us a chance to get to know each other.

with my love to all here,

Steve 


Edited by SagePatientAdvocates - Apr 24 2021 at 9:06pm
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 Vivian Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2021 at 7:37pm
Hi Steve, I am so glad your surgery went well and everything is fine with your health now! You have been a cornerstone on this forum. I am simply happy to hear your good news.

Hi Gigi 21, Gwen 60, Molasses, Christandiva, Mariejean74, I am so sorry for the same reason that brings us to this forum. But this community can give us so much encouragement, support, and knowledge. We are at the right place.

I am new to this TNBC world and am still trying to reckon with what has been thrown to me. I will share my personal experience and hope my sharing is helpful in a way to you.

I completed my treatment (chemo, surgery, and then radiation) last July. My Vitamin D3 was 19.6 last June and my doctor prescribed 50k Unit/week for 8 weeks. The number went to 42. I am taking 1000/day now to maintain the level. Like you, Gigi, I am feeling so different in my energy level and bone health.

Gwen60, I read the NCCN guidelines and heard the discussion about whether or not to have chemotherapy. My impression is that if the tumor size is less than 0.5cm, then skipping chemo can be considered. You can discuss this with your doctor. Here is one of the previous discussions on this forum: https://forum.tnbcfoundation.org/to-chemo-or-not-chemo_topic13435.html  And another also has a lot information thatís worth reading: https://forum.tnbcfoundation.org/no-chemo_topic13190.html I myself didnít have the luxury of skipping chemo since my tumor was 1.6cm. I was given the choices of ACT and the gentler TC; I chose ACT and has not regretted.

Christandiva, I feel so bad for whatís happening to you. It is outrageous to get misleading/false information while you are fight for your life. I am sure Steve can help you by connecting you with the right doctors.

Mariejean74, we are here for you. Keep fighting and know that you can be through. We can make it.

 

Best wishes to you all,


Vivian

Dx 12-27-2019 TN,Stg 1, Grade 3 Ultrasound 1.5cm/MRI 1.8cm, node-,BRAC-.
DD AC x 4, ultrasound cCR;
DD T x 4
Lumpectomy:5-28-2020; 0/2 nodes. pCR.
Radiation: 20x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2021 at 8:27pm
Dear Vivian,

You epitomize why I love our TNBC family. Despite your recent personal experience you took the time to reach out to everyone who has posted recently and offered support, in a knowledgeable way. Vivian, thank you so much for doing that.

My general thoughts for everyone who has written recently is to make sure, as best you can, that you are seeing a Breast Medical Oncologist who is very experienced in TNBC. Also, at times a woman only sees a Breast Surgical Oncologist and follows his or her advice to have surgery first. I think it is important to also see a Breast Medical Oncologist to make sure that surgery first is the recommended course. There is, often, no 'easy' here. But I think having more input from TNBC knowledgeable oncologists-both medical and surgical may bring more clarity and the two professionals may differ and perhaps you need to gather more input, if possible. Again, not an easy process.

with my love to all here,

Steve

p.s. and Vivian thanks for your good wishes about my health. I did not want to post about my personal surgery prior to the procedure because I felt that most here enough on their plates without worrying about me. Thanks to all of you who have reached out to me.
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 Vivian Quote  Post ReplyReply Direct Link To This Post Posted: Apr 25 2021 at 9:17pm
Thank you for the kind reply to my post, Steve. And I agree with you especially on seeing a Breast Medical Oncologist before making decisions. The first time treating the cancer is the best chance we've got. It's never too much to get at least a 2nd opinion, from a reliable source. Here is an excerpt from an online article that I ran into:  

Cancer responds best to treatment the first time.

When you treat a tumor for the first time, there is hope that the treatment will destroy the cancer cells and keep them from returning. But if your tumor keeps growing, even with treatment, there is a lower chance that more treatment will help. This is especially true for solid-tumor cancers, like breast, colon, and lung cancer, and sarcoma. 

(https://www.choosingwisely.org/patient-resources/care-at-the-end-of-life-for-advanced-cancer-patients/#:~:text=Cancer%20responds%20best%20to%20treatment,that%20more%20treatment%20will%20help.  

Nothing is guaranteed in cancer treatment. We do what we know is the best for our own situation. 

Best,

Vivian

 




Edited by Vivian - Apr 25 2021 at 10:06pm
Dx 12-27-2019 TN,Stg 1, Grade 3 Ultrasound 1.5cm/MRI 1.8cm, node-,BRAC-.
DD AC x 4, ultrasound cCR;
DD T x 4
Lumpectomy:5-28-2020; 0/2 nodes. pCR.
Radiation: 20x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2021 at 9:02am
Steve, don't hesitate to mention your surgeries or whatever. Remember people want to reach out and wish you well the same as you reach out to so many. 

I am glad you surgery went well. 

Your dedication to this site and helping is admiral. 

Kirby

ps. For the newbies, the beginning is the worst part, not knowing, not trusting etc. I wish you the best. 
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: Apr 27 2021 at 9:46am
Steve,

Hugs my friend.  You have provided us all so much support over the years and I hope you know we want to support you too.  I'm just reading about your surgery and hope you are healing and feeling better.  Please lean on us too as we've leaned on you throughout the years.

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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Dear Kirby and Donna,

Thank you, both, for your very kind emails and thanks to those who wrote me privately.

I don't want to distract from this important thread but after receiving such wonderful support from you and others I think I will write about my surgery in the Talk forum and bring everyone up-to-date because in thinking about it, my decision may be helpful to others in their lives.

I have a super busy day with Zoom calls today but will try to get my thoughts down by tonight.

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 Molasses Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2021 at 11:58am
Hi Everyone!

I am 55 and just got my diagnosis on 04/09/2021 of IDC TNBC.  I had a strong family history on my maternal side of breast cancer so I wasn't shocked.  This was my third excisional biopsy in about 6 years.  My tumor is Grade 3 and my R Breast biopsy turned into a "lumpectomy" because the surgeon just went ahead and removed all of it; and achieved thin, but clear margins.  Mass was 1.8x1.0cm.  I was a bit surprised I am TNBC because I am white and over age 55 and BRCA negative, but here I am.  I was diagnosed at a regional local hospital but am only 2 hours away from UAB (University of Alabama Birmingham) so I went there for consultation.  They added a MRI with contrast and located a suspicious area in my L Breast too (which was not picked up in my mammogram) so I am awaiting ANOTHER biopsy before I have my major surgery.  My intention is to opt for double mastectomy with aesthetic flat closure, but will still meet with a plastic surgeon regarding delayed reconstruction just in case I have a drastic change in mind once I'm flat.

The anxiety riddled situation I am in is WAITING almost a month (Scheduled May 12) just to have the MRI guided biopsy.  I am on a waiting list for earlier if someone cancels but the problem is I have no idea if my lymph nodes are involved and the surgeon will not schedule until she knows if she has to take one or both sides for the sentinel node biopsies. Unhappy  I know I am blessed it was caught fairly early and I had clear margins...and my nodes look okay in MRI and in Ultrasound, but since my tumor is Grade 3, if it is in my lymph nodes waiting a month could be catastrophic.  That seems like a problem with large University based medical centers-the waiting involved.  But my local regional hospital has no coordinated care between surgery or oncology and did not order the MRI with contrast (as they probably should have since I had strong history, dense breasts, and they were really puzzled by what they saw).  He didn't do a sentinel biopsy on my R breast at the time either I guess because he either didn't think it was cancer, or he didn't get consent from me.  There was no mention of pathology being consulted before he closed me to check it first-but he did have radiology scan the tissue to see if he retrieved the indicator device they implanted the day before surgery. Sigh.

Anyway, just putting my diagnosis out on here as a way to say hello.  So far I have been told if my nodes are negative and I have a DMX I will have 3 months of chemo that must begin within 9 weeks of surgery if at all possible (12 weeks is the max).  If my nodes are positive, I will have 5 months of much more difficult and frequent chemotherapy and then radiation.  It is hard for us to all compare our treatment regiments because they are all tweaked due to the size and stage of our tumors, but for what it is worth this is my situation.  

Of course I am upset about all of it but I know I am lucky in many ways.  Especially because I have insurance (for now), and my kids are older (single parent), and I have some genuine support from family and a few friends.  I am grateful to all the women who have gone before me that have contributed to the research that has developed treatment that I am about to receive.

Greetings to all of you fellow newbs out here in TNBC land. Heart
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