My Diagnosis is Barely A Week Old

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allisonbrimstone
allisonbrimstone Member Posts: 4
edited January 2019 in Just Diagnosed

Hi, I'm Alli.

I was diagnosed Friday December 28,2018. I have stage 3b breast cancer of the left breast . I am ER,PR,andHER2 negative.

I do ot know all ofthe lingo  or  abreviations  just yet so bare with me. I am getting a pet scan on the 7th of January. And will be recieving chemo soon. I don't really know what to say but thank you to  everyone for sharing their experiences and advice.

I am  42,  I have 2 children , girls, nine and eleven. My youngest has ASD (Autism Spectrum Disorder). I am in a twelve year relationship with my fiancee

Comments

  • dtad
    dtad Member Posts: 2,323
    edited January 2019

    Hi there. Sorry you have to be here but welcome. I'm sure you will find this community both comforting and full of knowledge. Try to stay off google. It is not your friend. Being diagnosed with breast cancer is never easy but it must be even more difficult during the holidays. The beginning of this journey is the hardest. I promise you that it does get easier once you have a treatment plan in place. We are all here for you. Good luck and keep us posted.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    I disagree about Google.

    I think it is really important to be well informed. The main thing to make sure of is that the article you are reading is recent (last year or so) and from a good source. I am also triple negative. I have had an excellent response to chemo and just had a lumpectomy last week. Waiting for pathology this week.

    While I really like and respect my oncologist, there are a lot of valuable things I found out from Google, not from my oncologist. I think every patient is different, and doctors respond to what you present to them... Some say "you are stage 3A" and some don't even mention stage unless you ask them. I like knowing the brutal truth and I like knowing it up front. I like knowing what I am facing. I am a good nerdy researcher and i am good at synthesizing what I read and I would rather be prepared.

    When you know there are not a lot of followups beyond chemotherapy, you will get stronger in your resolve to do everything possible RIGHT NOW. It makes you tougher during chemo and more focused.

    The GOOD news about TNBC is that if you knock it down, it VERY OFTEN stays down. If you get a complete response from chemo, you have a very good chance of dying of something else decades from now. If you are cancer free 5 years after treatment, it is very unlikely to ever come back. That is something pretty rare in cancer! The initial chemo also tends to work the best on TNBC and kill it.

    You have a lot of control over lifestyle habits that can help or hurt you. You can eat a clean, low carb diet free of sugar and alcohol, you can exercise intensely, take supplements, etc-- all this will strengthen your body and benefit you. I strongly recommend consulting with an integrative or naturopathic MD who is experienced at supporting a person going through chemo... and who knows the nutritional tricks that will help... like Magnesium at bedtime for constipation... There is a book called Life Over Cancer, by Dr Keith Block in Chicago, with a wealth of information.

    I fasted (fasting-mimicking diet) prior to every chemo because it reduces SEs and fortifies the immune system... and I found out about that on Google. I took Metformin and melatonin (thanks, Google). I ate vegan-heavy ketogenic (w/ low animal products), I took hyperbaric oxygen, and did infrared saunas, and used heat on my tumors intermittently (hyperthermia). These practices are all complimentary to the chemo and can weaken your cancer (making it more vulnerable to chemo) and chip away at recurrence rates. Most physicians do not mention these practices. When I asked my MO to prescribe metformin, he agreed readily, knowing that it was a validated benefit-- and I thought, hey, how come you did not suggest this???

    I think an informed consumer does a better job of helping herself!

    I wish you all the best with your treatment and will be hoping for a complete response to chemo for you!

  • hapa
    hapa Member Posts: 920
    edited January 2019

    I agree with santabarbarian. If you can discern between a valid and not valid information source, the google away! Just make sure the articles you read are recently published and from a reputable source. Always read the original journal article, not a watered down summary. The journal article will have multiple authors that are doctors and researchers at hospitals and/or cancer centers. Stick to ones from well known cancer centers that were published in the last few years. You may learn some things that you're not happy about, but I think it's better to be informed.

    Just reading some of the things women post on here that their MOs have told them surprises me. It seems not all doctors base their advice on research. Lymphedema is one area in particular where a lot of the current advice is based on absolutely no research and a lot of the recommendations don't even make sense.

    Just be prepared for the possibility that you may not be able to make heads or tails of an issue by googling articles. I consider myself fairly well educated and some of this stuff is too dense for me to understand. Not to mention, a lot of the questions I want answers to haven't been studied yet, and a lot of the reputable articles that the medical community bases their recommendations on for whatever reason don't come up at the top of google searches.

  • allisonbrimstone
    allisonbrimstone Member Posts: 4
    edited January 2019

    Thank you for  the advice  I wish you all the best in your journey and recovery

  • allisonbrimstone
    allisonbrimstone Member Posts: 4
    edited January 2019

    I do my best to stay off of google as much as possible  about it  butI do look things up  and I try to find crediable  sources , but I mostly look here for advice. Thank you for the advice  I wish you all the best on your journey and recovery.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2019

    Hello and best of luck to you Allison. Lots of us here are happy to help however we can.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited January 2019

    There is a thread "Calling all TN's" that you can hop on to ask TNBC questions.

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