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    Posted: Aug 24 2020 at 5:28pm
please help me - I am 38 just been diagnosed with TNBC and feel like Iíve been handed a death sentence. Positive node biopsy also. I have a one year old and I donít want to die. Iím so scared. I had resigned myself to having BC but this is just the worst news I didnít want. I want to see my son grow up...
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Dear Helpscared,

TNBC can be a tough breast cancer to treat BUT it is not a death sentence. Often TNBC is sensitive to chemo and hopefully yours will be. 

I think it is important that you see a Breast Medical Oncologist who is knowledgeable about TNBC. If you send me a PM or write me at steve@sagepatientadvocates.org I can try to help you find a knowledgeable oncologist or even several. I will send you my phone number so we can talk and there are no charges.

My daughter was diagnosed in August 2004 with TNBC and she is alive and well and NED
(No Evidence of Disease). 

I think it is important to try and think positive, enjoy your little boy and put together a good medical team including good genetic counseling, if you haven't had it.

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 Penny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2020 at 6:17pm
Please don't fret just yet.  I went onto this post 4 years ago with the same fear and all worked out very well.  Every diagnosis is different and there are plenty of long term, thriving survivors on this board.  The job in front of you is doable.  Get with a doctor you trust and build your team.  Enlist a family member or close friend to go with you to appointments as a second set of ears, listening and jotting down notes.  Someone very wise told me the way to get through this is faith, mental attitude and science, in that order.  Keep positive.  Compartmentalize the worry.  Don't worry about step 5, think about step 1 then step 2 and so on.  Educate yourself and read this board. You will find quite a bit of information and know which respondents can provide you with what you need today.  Fear is not your friend.  Breathe, take a mental break.  You are on this journey and this post is your first step.  Good for you finding this place.  Post back often and let us know how you are coping.  You can do this.

Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Helpscared Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2020 at 6:25pm
thank you Steve and Penny. By the way I am in the UK. They are talking chemo then surgery, also genetic testing. There is no bc in my family but both parents died of pancreatic and brother survived bowel.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2020 at 7:20pm
Dear Penny,

You're most welcome. I carry the BRCA mutation and I have several relatives who died of cancer of the pancreas. Breast/ovarian cancers are the two main cancers women who have the mutation are susceptible to. BUT, the fact that you have such early-onset breast cancer means that there could be a genetic mutation present, despite no breast/ovarian cancer in your immediate family and it is very good that you are getting tested. Hopefully you will get a comprehensive genetic test not just one for BRCA.

I am very sorry you lost both your parents to such a difficult cancer. 

There are several excellent TNBC Breast Medical Oncologists in London.

good luck to you!!! Please try to find the beauty in each day!!! Probably fairly easy to find with a one year old little guy.

Great post, Penny.

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 Helpscared Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2020 at 12:11pm
hello all, a few days on and I am feeling a little brighter. My oncologist assures me the cancer is relatively early stage and the treatment plan is curative. Of course there are no guarantees but I am feeling encouraged.

My protocol is four cycles of paclitaxel/Carboplatin and 3 cycles of EC. From what I have heard from others here (in the UK) this is a relatively unusual/new protocol - how does it sound to yíall?

Then surgery - lumpectomy is likely possible because of the size (2.7cm) and axillary clearance due to at least one positive node. But we may do double mastectomy if my BRCA tests come back positive.

Also I found out I am androgen+. This was the one thing my onco didnít explain so clearly, other than to say it ruled me out of one of her clinical trials. Any thoughts on how this may affect my prognosis or treatment?

Thank you and wishing you all good health.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2020 at 7:47pm
Dear Helpscared,

There is a wonderful Breast Medical Oncologist at Memorial Sloan-Kettering Cancer Center in NYC. She is an expert in TNBC and has done a lot of research on Androgen + women and TNBC. Your oncologist may not have a trial that you qualify for but I believe there are other trials and treatment that may benefit you. And I am not a doctor or medical professional and won't give you medical advice but being AR+ may open new treatment possibilities to you.

https://ascopubs.org/doi/full/10.1200/jco.2016.71.3495

Dr. Traina is a very close friend and I may be able to arrange a consult for you IF you are interested. Please send me a PM if you are or contact me at
steve@sagepatientadvocates.org

There are no charges to you and SAGE does not have an financial relationships with any drug companies, cancer centers or oncologists.

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 Daisy4762 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2020 at 6:29am
I have changed my username - this is Helpscared, no longer quite so scared so changing names Smile

Thank you so much for this, Steve! What I might do is see what info I can get from my team when I next see them on Thursday, before potentially taking up your very kind offer.

I believe I am to be enrolled in the UK's Peronalised Breast Cancer Program (PCBP). I am not sure if this is something that has been discussed on the forum? If not, I can provide more info. One thing I am pumped about is that they are taking a new biopsy from me, and implanting my tissue into various mice (thank you and sorry, mice!). These 'avatar mice' will be given various drugs and if applicable, my treatment will be changed in line with the mice's response, and/or noted for any future recurrence. So I am excited that my team sounds like they have their finger on the pulse. I am in Cambridge, England so there is amazing research on my doorstep. I will ask them about Dr Traina's research to see if it's something they could offer.

Thank you again,

Daisy.
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Dear Daisy,

My grandmother used to say.."if it's meant to be, it's meant to be." It's 3:40 a.m. in San Diego, where I live, and I am generally an early riser, but not this early and I decided to look at the computer and I saw a message on this topic and there you were and somehow you felt confident enough to change your name to Daisy. So, one of my other weaknesses is that I am a slow typist. It's now 4:40 a.m. But, the past hour was really a pleasure. I hope this post will be helpful to you, Daisy.

You made my day in the middle of the night. Having TNBC can be a difficult diagnosis and I hope your team in the UK will recognize Dr. Traina and her hospital Memorial
Sloan-Kettering Cancer Center in NYC (ranked number two cancer center in the U.S.).

https://www.beckershospitalreview.com/oncology/10-best-hospitals-for-cancer-care-ranked-by-us-news-world-report.html

Here is Dr. Traina's bio to show your team. Please look at her publications and also clinical trials she is/has been involved with. She got a special award at a TNBC fundraiser some years ago and I had the pleasure of introducing her. I am afraid I lost it, emotionally, when I did because she lost her Mom to breast cancer when she was in high school as did I. When we first met, due to our losses, we formed a special bond and I have referred probably over 75 women to her over the years, many from this wonderful site. She is a very special oncologist/researcher/woman and dear friend. One of her particular research interests has been TNBC.

https://www.mskcc.org/cancer-care/doctors/tiffany-traina

In 2011 I attended the first TNBC conference in London, given by Breakthrough, and I was the only patient advocate in attendance. Had to go through a lot of hoops (special thanks to Hayley Dinerman) to attend. At that time patient advocates were a bit of a novelty in Europe. Thankfully, that has changed. The conference was led by Alan Ashworth and Andrew Tutt both brilliant researchers/physicians. When I first met Dr. Ashworth he was at ICR. Alan co-founded the Univ of California San Francisco (UCSF) BRCA clinic and is, now, President of UCSF Cancer Center. Andrew Tutt is at Guys hospital/ICR in London.

https://www.uicc.org/events/breakthrough-breast-cancer-triple-negative-breast-cancer-
conference-2011


https://http://cancer.ucsf.edu/people/profiles/ashworth_alan

https://www.guysandstthomas.nhs.uk/our-services/consultant-profiles/cancer/clinical-oncology/andrew-tutt.aspx

I am not familiar with physicians in Cambridge but have been very impressed with physicians in the UK so I am sure you have an excellent team. 

Daisy, I would suggest printing out some of the info in Dr. Traina's publications listed on her bio and perhaps her work will resonate with someone on your team. 

I hope to hear from you in the future and sincerely wish you success in continuing the battle.

Some years ago I posted actively on another breast cancer forum and I went to their first conference and a woman came up to me and told me that she had flown to the conference to hear all the talks and meet me but that she was too overwhelmed, emotionally, to stay.
She told me that she had just completed her PhD and was a researcher and really appreciated the thoroughness of my posts, and all the links, and I said that many had told me that my posts were too long and that I needed an editor. "No, keep writing the way you do. it's very helpful to me." As you can see, I followed her advice and I still very much need an editor but would rather err on the side of thoroughness. My apologies to those here who have to wade through my verbosity.

I had my name on my nametag and I looked at hers and it said "Guest." She saw me looking at the tag and said "I am sorry, I want to remain anonymous." This was pre-GINA days when people could be denied health insurance with the BRCA mutation or a pre-existing diagnosis of breast cancer. I pray those days don't come again.

In any event, I shall always respect your privacy, Daisy but I am so delighted you 
changed from Helpscared. And good luck on Thursday.

The last thing I shall say is something I tell everyone I am helping and that is 
"please try to find the beauty in each day." I think a positive attitude is important.

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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Dear Daisy,

p.s.

Yes, please tell us about UK's Peronalised Breast Cancer Program (PCBP). I believe that is the future of cancer care. But it can be challenging, from my experience. Here most of the personalized cancer treatment programs use molecular testing large panels like
Foundation Medicine, Tempus and Caris. What does this program use?
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 CMDW Quote  Post ReplyReply Direct Link To This Post Posted: Sep 01 2020 at 8:14am
Good morning, Daisy-

You bring up an interesting topic.  My mom died of pancreatic cancer and I had TNBC.  I have been wondering about a correlation. I have tested negative for all known cancer genes, but might there be a connection?  I recently read an article about a drug (trial) that is being used for these two cancers specifically.

I underwent chemo first and had a ďcomplete pathological responseĒ.  A lumpectomy was still performed at the site of the tumor even though nothing was visible on MRI.  Please try to feel encouraged and look for the joy in each day.  Know that the next nine months or so will not be easy (some rougher than others), but just do what needs to be done and accept help from others.

Best wishes to you, 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote James123 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 01 2020 at 5:36pm
what is the trial being done for these two cancers 
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I donít know how to paste a link here, but itís from the site curetoday.com and the drug is called Eryaspase.  If you donít find the article, let me know and I will give you more info.  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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Daisy4762 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2020 at 7:26am
Thank you so much, Steve, for all your help - I love your detailed messages!

Tomorrow I am having a new biopsy taken and blood drawn to be entered into the PBCP trial. I am no scientist, but I believe the blood test is to check the full genome, and also the tumour's 'code'. More detail is here: https://www.oncology.cam.ac.uk/news-events/pbcp. It is reassuring to me that patients have had their treatments changed when this information has revealed something that can give a more 'personalised' protocol.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Daisy4762 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2020 at 7:33am
Cindy, thank you for your reply. I am sorry about your diagnosis and also about your mom. My onc did say there are some other genes she will be testing for besides BRCA so I can let you know if there is anything of note.

I am so pleased to hear of your amazing response to the chemo! That's fantastic. May I ask you if you did anything in particular that you think might have helped you achieve pcr? I am not usually one for hocus pocus remedies (sorry if this offends anyone to describe this way!) and I am fully aware that my fate is not entirely in my hands. But I have been reading a lot about things like diet, fasting, exercise etc and would be interested to know if you did anything in particular. For example, I was reading about boosting circulation via exercise to help chemo distribute into every nook and cranny (hmm, don't know if that's true) and also helping with the side effects by detoxing (seems a bit more plausible) with the goal that minimal side effects = no cancelled treatments. Like I say, maybe clutching at straws but very grateful for any tips!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2020 at 8:04am
Hi Daisy-

My best advice is to see a good integrative medicine doctor, if you can.  Mine was recommended to me by my oncologist when I was asking questions like yours.  I had to pay (not covered by insurance), but it was worth it.  This doctor specialized in oncology and sent me home with detailed suggestions on diet, supplements, exercise and alternate therapies (acupuncture, massage, etc.) that were tailored to me and my diagnosis.  He did not try to sell me anything even though he carried supplements and essential oils in his office.

Thereís too much to type here, but one of his tips that I think really helped was talking honey a couple times a day (in addition to salt and baking soda rinse) to prevent mouth sores.  I never had that problem.

I did get sent home without getting treatment twice during AC chemo due to low white blood count.  I donít think I could have done anything to prevent this.  

Your oncologistís office may have information on a cancer fighting diet.  If not, there is plenty of good information on line.

I did try to continue walking and other forms of exercise when I felt up to it.  Donít beat yourself up though when you donít have the energy.

You are tackling this proactively, which should help you in the long run!  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
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Thank you, Cindy, that is super helpful! The threat of mouth sores in particular has worried me actually. I had one mouth ulcer last year and was really sulky about it, so I can't imagine having a mouth full of the things on top of everything else! In his treatment for bowel cancer, my brother had a lot of neuropathy and his team were not the most sympathetic. I don't think the teams always appreciate that yes, you are saving my life, but not being able to walk or do much with one's hands is mentally as well as physically challenging. Anyway, thank you again.
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I am continuing to experience neuropathy in my feet almost one year after chemo.  It is not painful but annoying.  My integrative medicine doctor recommends therapeutic massage and/or acupuncture for this, which I am willing to try once Covid is less of a concern.  Until then, I am just living with it.  Continuing to walk every day, weather permitting and this is not a problem.

Stay strong.  You can do this!
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Madison5454 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2020 at 6:20pm
my mom died of pancreatic cancer at 66 and my grandmother at 58 from breast cancer. I am not BRAC positive. I have stage 1a in treatment now.  There must be a genetic link from pancreatic to breast cancer that we have not found for my pancreatic genetic test panel was negative too. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2020 at 6:25pm
Hi Madison,

There are newer genetic panels for pancreatic cancer which indicate that there may be other genes involved other than BRCA...and there are other genetic hereditary mutations for colorectal cancer and uterine cancer such as Lynch Syndrome.

Each year we are learning more.

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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