Triple Negative IDC

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Triple Negative IDC

by mdailey on Thu Feb 01, 2018 01:26 AM

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Late last year a routine mammogram discovered a 8 mm mass in my left breast. From all accounts I was very fortunate - small tumor caught early. Earlier this month I had a lumpectomy and it was a breeze. Surgeon called to let me know that no cancer was found in the lymph nodes so naturally I was over the moon. Today I met with the oncologist expecting to start radiation in a few days only to be told that while my cancer was caught early that I was diagnosed with a highly aggressive form of cancer known as triple negative. The tumor nearly doubled in the weeks between the biopsy and the surgery and now I will require chemo on top of radiation. My head is spinning and just wanted to reach out and see if anyone has any experience with this type of breast cancer? From the minute I was diagnosed I was very positive and upbeat about my prognosis mosrtly due to the fact that when I asked the surgeon about chemo she said that it would not be necessary but today I am falling apart. If anyone has anything to offer in the way of experience with this type of cancer I would love to hear from you.

RE: Triple Negative IDC

by Crabbie on Thu Feb 22, 2018 03:52 AM

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I have TNBC and my favorite older sister died of it 7 years ago! I am VERY nervous but decided to go the alternative route. I've had no surgery or radiation and only ONE dose of chemo that was extremely painful so I quit it.  I am worried because I do know it's aggressive!

RE: Triple Negative IDC

by peace123 on Sun Mar 04, 2018 10:02 AM

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My Daughter was diagnosed last September 2017 with Triple neg breast cancer. She decided to go to Mexico for alternative treatment. Very expensive. Three weeks later she came back looking great.She did everything they said to do at home but her tumor grew larger. She then raised the money to go to a Doctor in Reno who does a blood test and sends it to out of country to see which chemo works for her body. They found 2 out of 10 types worked for her type of cancer. She was in Reno 3 weeks (also expensive) came home and the results were amazing. She was on about 50 vitamins & minerals, some medications. She also had wonderful results. But it went to her lungs and brain after a short time. This type of cancer is very agressive as you know. Skip the alternative and go to chemo & radiation. This cancer is very hard to kill. I think if she had gone to Reno first it may have put her in remission. She is at Kaiser now but all they have is a very few types of chemo. So do your research and pray for a miracle. Prayer helps. If you need to talk you may respond.

RE: Triple Negative IDC

by mdailey on Sun Mar 04, 2018 07:13 PM

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My apologies for not replying sooner. I am sorry to hear about you sister and of course your current situation. Choosing chemo was not an easy one especially since I was diagnosed very early but after talking with a few Drs it really was the best option for me. The original Dr suggested four rounds but a specialist at one of the big centers strongly suggested six so that is what I am prepared for. It's going to be a difficult couple of months but I wanted to do everything I could to provide me with the best possible outcome. My first treatment was nearly three weeks ago and I had a rough couple of weeks. Not actually from the chemo for the most part although the exhaustion and lack of appetite were no fun. My wonderful ($950 per mo PPO) insurance company declined the Nuelasta shot my Dr said I needed and is the standard of care according to the American Cancer Society. They said they wanted to see that I needed it and after coming down with a 101 fever finally approved Nupogen because at that point it was too late for the Neulasta. Nupogen is a series of 5 shots given daily and causes terrible flu like symptoms so instead of having 1 crappy week I had 2. This week has been good although I still have no energy. Hopefully my insurance co will approve the Neulasta this time around so I can have 1 bad week and 2 okay ones. Any chance you will reconsider the chemo? You are in my thoughts and prayers.

RE: Triple Negative IDC

by trinitybc38 on Wed Mar 07, 2018 10:33 PM

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I'm in this similar situation. Was completely in good spirits as well , surgeon also said the same thing that there should be no need for chemo or radiation. Then "BANG" they used those words at my follow up. Now I'm finding it really hard to stay positive. Doing research helps a bit but I find the more I read the more confusing I'm getting. Positive and negative information, how the hell are you suspose to keep an open mind. I had my husband with me at all my appointments due to the fact that I/we as the patients are like " a deer in headlights" . They come after us when we're down. Trust me you're not the only one who is falling apart.

How are you feeling now? What did you end up doing for treatment if any?

RE: Triple Negative IDC

by Linda1814 on Thu May 10, 2018 01:00 PM

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My mom was diagnosed with triple negative IDC and is having a simple mastectomy next week. She is 83. This is her second breast cancer diagnosis. She had IDC (but it was hormone responsive, not triple negative) 18 years ago. She had a lumpectomy and several lymph nodes removed then as well as radiation and chemo. She doesn’t want radiation again but hasn’t ruled out chemo. I guess we’re waiting to see what is determined from the actual surgery. She is Stage 1.

RE: Triple Negative IDC

by judyjetson831 on Thu Jul 05, 2018 08:47 PM

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Try taking claritin with your Nupogen shots. It reduces the flu-like aches and pains.

RE: Triple Negative IDC

by jesichashope on Sat Jul 14, 2018 03:37 AM

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My daughter Jesicha had triple negative.  She went through many different types of chemo and radiation, two major surgeries and still it progressed.  
As we later found out triple negative does not respond to the normal list of chemotherapy drugs because it is not hormone related but rather toxin related. She had a piece of her tumor sent out to find out what toxins were hidden inside, the results were alarming. 
Her story is long and all documented, if you want to read it to learn what she did go to jesichashope online and then go to about Jesicha --- it is well detailed. I hope it might help someone. 

RE: Triple Negative IDC

by geraldine01 on Fri Sep 07, 2018 02:53 PM

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Hi, I saw your post and was wondering how you were doing so far.  Yesterday was eight years since I was said to have had triple negative breast cancer and went throught the same thing you did.  Today I am well but have develop a lot of issues such as high blood preasure.  The hot flashes are off the chart.  It has been a long eight years but i give God thanks everyday because my cancer was in stage 3b and the lump has triple after 3 weeks before I had started my chemo.  

After being 8 years cancer free my hair has not grown back yet and it is kind of sad.  I have paches and its very thin.  I guss I cant have it all, so I am very thankful.

RE: Triple Negative IDC

by jesichashope on Mon Sep 10, 2018 09:26 PM

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geraldine - I am glad you have gotten to 8 years, the average survival is about 3 years so you are ONE LUCKY LADY. 

God Bless your life. 

Not sure about your hair - you can try to use some silica as a supplement and gelatin supplements - both help in giving the body back what it has lost. You can use black castor oil shampoo and conditioner - this helps in growing hair and thickening it. Hope this might help. 

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