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newly diagnosed TNBC

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Danzig482 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 10:24pm
Laurarev- I couldn’t help but laugh at your ‘how can that be’ comment. I’ve been researching myself stupid since Wednesday when they told me I’m TNBC.  The one thing I thought I could control while I play this waiting game with doctors and insurance, with my diet. I had the exact same reaction 😂😂. It appears room temp water and wood chips are the only thing that haven’t been listed as bad for me at this point 🤢
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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 9:30pm
I am going to meet with a social worker at Sloan the day before my surgery next Monday. I would like to talk to the kids this Friday after their last day of school, so I’m going to have to see if I can ask the oncologist this Wednesday if he can set me up with a social worker at his hospital (I am doing my chemo at a more local hospital than my surgery)  I would like to get some advice so they aren’t scared. 
Thanks for your reply Donna:)
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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 9:19pm
Thank you Marymom. I am going to look into purchasing that book! I have been reading as much as I can on the internet, but not sure if I’m getting all accurate information. I also heard that mushroom are good, and not to eat meat or dairy (and of course, no sugar) 
I am meeting with a social worker at Sloan the  day before my surgery when I go to get the seed and the dye. I will inquire then about a nutritionist. 
Thank you so much for your reply
Laura 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 8:06pm
Hello,

I am sorry you are joining this site.  But, it is a good place for information, hope and encouragement.  I also went to Sloan...I was diagnosed December 2017 and had a lumpectomy, 4 ac and 12 taxol and 4 weeks of radiation.  My tumor was 1.6 cm and no nodes involved.  My only side effect from chemo other than hair loss was being very tired.  I slept a lot.  

So, you are asking about food.  My doctor suggests no meat.  I tried that...but the beans and carbs were keeping weight on me.  So, I do a little bit of organic chicken each day and I have heard the mushrooms are good for you.  I marinate and cook assorted mushrooms and enjoy them every day.  I avoid sugar as well. I do not eat cheese, drink alcohol or use milk. There is a good book out there, that you can get from the library by Patricia pritjatel ( I hope I spelled that right)  “Surviving triple negative” and it was helpful.  

Stay positive, it is scary in the beginning...a lot of important decisions and you can get overwhelmed.  But, I feel great and I read a lot and have learned a lot.  Stay strong, read and inform yourself and sloan has nutritionists and intergrative oncologists too.  Tap into those resources.

I will keep you in my prayers.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 7:35pm
Hi Laura

I'm so sorry you are dealing with this diagnosis.  It's very scary to hear those words and see how quickly your life can change.  The period from diagnosis until you begin treatment is the worst.  I'm sorry your doctor said cancer doesn't hurt.  There are quite a few members who will tell you this is exactly how they found their cancer.  The best advice is if it doesn't feel normal, get it checked out.  I'm glad Sloan Kettering is doing an extensive genetic test on you.  Many people only think the BRCA genes are associated with breast cancer, when that's not true.  They are finding many more genes connected with breast cancer so a full gene panel will help you identify if there is a genetic connection. 

Can you ask your oncologist office if there is a social worker you can talk to?  They may have some age appropriate advice for speaking with your children.  Other members with children similar age might be able to share how they broke the information.  My children were in college so I was able to talk to them as an adult and be very honest with the situation.

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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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jun 16 2019 at 9:16am
Good morning everyone  my name is Laura. I was recently diagnosed with TNBC.

 I am a 46 year old, single mother of a 13 yr old boy and 11 yr old girl. I had a clear ultrasound, mammo, and MR in jan 2019.  Two months later I felt what seemed like a bruise on my right breast. I looked for a black and blue mark but saw nothing. I waited a couple of weeks for it to feel better, but it still felt like a bruise. Within about 3 weeks I could feel  a small lump where the bruised feeling was. I called my OB and he said I most likely had nothing to worry about as I just recently had clear testing in January and breast cancer doesn’t hurt. He said it was most likely a clogged milk duct or a cyst and to give it a little time to see if it goes away. I am an elementary school teacher and I was planning a trip to Florida for spring break. He told me there was no rush to get it checked and to go on vacation and we would do a diagnostic ultrasound when I returned. 

Well I had the ultrasound on May 13, 2019 and I’ve been on this roller coaster ride since then. On May 21 I went back for a needle biopsy. The doctor called two days later to tell me it was cancer. It was Memorial Day weekend so I wasn’t able to meet with a surgeon until 10 days later who informed me that I had TNBC. I had never even heard of this. 

My sister had stage 0 estrogen positive breast cancer two years ago and is doing great, thank God. I have been to many appointments over the past two weeks, I feel like it’s been two years. I am being told this cancer is very different from hers in that mine is “rare and aggressive” the tumor is small measuring 13 mm, but the proliferation rate is high at 67%. The surgeon and oncologist have decided I will do a lumpectomy first on June 25 followed by ACT chemo (maybe one more thing in addition to that... not sure what it was called) and then radiation. We will not know until surgery if it is in the lymph nodes, but they’re thinking it’s not. 🙏🏻 I am very scared to say the least. 

My maternal grandmother also had breast cancer in her 40’s but she was in remission for 25 years. My sister had the myriad BRCA test and was negative. Sloan Kettering is doing an impact test on me which will look for 89 mutations. 

Does anyone know of a specific diet we TNBC patients should eat. Everything on the internet is so confusing and it seems like there are foods we should or shouldn’t be eating that differ from the other types of breast cancer. For example, I’ve read that avocados, broccoli and salmon are not ok to eat. How can that be?? I’m so confused. I just want to be as healthy as possible as I begin the fight of my life. I’ve started juicing carrots, celery, turmeric, ginger, beets, and sweet potatoes. Do you know where I can find a list of foods specifically for TNBC. 

Also, any advice on how to tell the kids? I went through a very tumultuous divorce two years ago. The kids have been through so much already and I want to handle this as gently as possible. So sorry for the very lengthy post. Any advice would be so greatly appreciated. 

Laura 
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