So stressed Triple neg 5cm need positive stories

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  • iserbrown
    iserbrown Member Posts: 5,552
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    Pleased to read that you are on your way in more ways than one!  Good on you and please when technology and your time allows drop in so we can help you through the maze of it all!
    Take care xx
  • melclarity
    melclarity Member Posts: 3,502
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    Agree!!! So glad you're navigating and you're OK!! So much support here, its really humbling!!! and honestly, these ladies will all help carry you...me included :) Hugs Melinda xo
  • mum2jj
    mum2jj Member Posts: 4,330
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    Hi again, so glad you are harvesting your eggs.  That's a good thing and you will be glad you did later.  Like you say then concentrate on your chemo and surgery. Recon is something you can think about later if you wish.  There are loads of us who have been down that path too.  Don't worry about getting back to everyone personally, we have all been where you are.  Just do what you have to do and we will be here for  you when you need us.
    huge hugs
    Paula xxx
  • Tripple QLD
    Tripple QLD Member Posts: 18
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    lisboy said:

    Dear Hopes and Dreams
    i don't post much anymore but came on here and saw your post and felt compelled to answer you. I had triple negative multifical,ie 3 small tumours and 3 positive nodes. I am now 2 years post diagnosis. It seems hopeless and incredibly scary at the start but this is treatable!! Big gains in research and lots of worldwide focus on triple negative breast cancer treatment. It helps to read other survivorship stories and there are plenty of them with similar and bigger size tumours than you have. It s hard to find histories on this site and unfortunately a lot of great blogs seem to have disappeared. If you go to breast cancer.org you will find a whole section on triple negative with threads all about women who are thriving  up to 10 years and more after a triple negative diagnosis. Another credible site is tnbc foundation. Tnbc foundation site also has discussion forums and up to date research posted on it. 

    There are many other women on here who are doing well several years down the track and I'm sure they will also post. I understand totally how you feel, and it is important to know that not only can you survive but statistically you are likely to survive. Don't buy into all the doom and gloom on the web about tnbc. A lot of it is lazy reporting quoting statements from years ago.
    You have a treatable disease and you can get through this!
    I wish you all the very best and take care,
    Lisa

    Thankyou Lisboy im pretty sure in these 2 months of waiting i have read every Study, Forum, Cancer site on the net.... and it has proved very helpful as my Surgeon is very impressed with my knowledge of EVERYTHING to do with my case and attitude for someone of my age (luckily i am a very smart googler and i know what to read and what not to read and how much weight to give it based on a whole lot factors like who rote it, when, scientific evidence etc ) . Having said that i got so Down the night i wrote this because i took the wrong person with me who wasn't helping and was, in front of the surgeon, demanding i give up on kids and just start chemo all because my surgeon said "I'm not going to beat around the bush, You are in TROUBLE, that is a big cancer" and i think hearing that my friend had an awakening and went a bit off the rails ( i had had other surgeons and drs visits prior so i knew my situation)  Needless to say i wont be taking that person to any of my stuff again as i thought they could handle it but obviously not. Anyway i have surgery booked for Wednesday then egg harvesting injections start next week then multiple ultrasound nearly daily towards day 12 then harvesting on day 12 or 14 then chemo starts 1 week after that so ill be so busy i dont think ill have time to worry about much at all lol. I find it funny how you learn who believes you to the extent you are saying about your diagnosis and who has to hear it from a professional before it sinks in for them....i have a few around me unfortunately but some good ones too. thanks again i am feeling better and just cant wait actually to get this breast off and be done with the pain its been giving me for 2 months now. 
  • Tripple QLD
    Tripple QLD Member Posts: 18
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    gurneys said:

    Hi, I was triple neg, 1.8 cm. 1 year on and I'm all clear. Lumpectomy, chemo then bilateral mastectomy (my choice, preventative as also BRCA2 pos).

    As the others have said, don't buy into all the hype you read online about triple neg. My doctors weren't concerned about it being triple neg at all and now I've been given the all clear. If you are concerned about your fertility, speak to your oncol about the effects of chemo on your eggs. That was one of the first things my oncol raised with me.

    Breathe. It's a lot to take in at the beginning and filtering through all the info. Feel free to ask any questions though.

    Best of luck

    Sherril


    Hi Gurneys, thats been half of the problem i havent ever seen my oncologist but when they all had their big pow wow meeting (all the drs and sugeons do about my case and how best to proceed) my breast care nurse is my only go to person and she said "i asked the oncoligist and he said "  "if she wants kids she NEEDS to save her eggs harvested NOW so i recommend surgery first to allow time for this" so my BC nurse said that she got the impression from him that i wont have any eggs left after chemo. HOWEVER my Fertility DR said "we can give you a drug to shut down your overies for overie preservation" (which i already know about and have been asking for)  so now i am a little confused as I know about that drug and have asked multiple times about it but my BC nurse doesnt seem to know and neither does my surgeon so now im thinking the fertility dr will be doing it???? This is the frustrating part about not getting to see all of my drs myself but hey it is the public system. My surgeon says "im not and oncologist so i dont know" so basically only my ONCO can tell me but i wont see him untill just before cheom but I"ll defiantly be following it up with him and my fertility Dr when i see him next week. I sometimes feel like ive been the most organised and knowedgable and THEY are all just catching up....??? LOL.
  • SJLY
    SJLY Member Posts: 4
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    Hello, I am new here, also recently diagnosed and 32yo. I just wanted to let you know I didn't have time to have IVF as they wouldn't wait that long to start chemo, but I desperately wanted to do something and I was offered to freeze a whole ovary. It's experimental, so there aren't really any stats on success rate, but there has been 1 live birth in Australia to date. The good thing is, the procedure was done the next day and chemo could begin right away. Even though there are no guarantees, i felt better just doing something. If I had the option of IVF, I would 100% have done it. Good luck to you. I am so sorry you are going through this and wish you all the best for your treatment. 
  • ccasper
    ccasper Dragonfly Posts: 190
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    Welcome @SJLY sorry you have joined us. Interesting about the ovary. Glad you were able to do something. I didn't only as I have a son already and they wanted to start chemo straight away too. Feel free to inbox me if you ever want to chat x
  • FranP
    FranP Member Posts: 396
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    syly i was diagnosed with a 4cm triple neg aggressive high grade3 cancer and brac1 pos in 2007 and had partial mastectomy and 15 lymph-nodes removed then aggressive adjuvent chemo and radiation... i'd had a hysterectomy when 33 but they had left an ovary in so i wouldn't go into early menopause and i have since had this also removed. i am ten years cancer free this year so far so good . i take nothing for granted and i am ever vidulant  and body aware. have my yearly mammograms and ultrasounds and biopsies if required . i deceided not to have a double mastectomy ( my choice) but my surgeon said if i got another cancer he would remove then then if need be , but depends if it did come back where it was i guess but as i said i am ten years and for me every year is special and every day is a bonus . i grab life with both hands and live to the fullest of my capabillities. and sometimes go a little beyond them but i am living for so many of my friends as well . i hope things go as well for you too . xxfranp
  • Karenhappyquilter
    Karenhappyquilter Member Posts: 242
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    So many words of wisdom above.  I wanted to add we find out we are much stronger than we think.  There is good support.  We have great doctors, nurses, radiation people, physios and hospitals, we are so lucky wth our health care system. It's not perfect, but pretty good.  You are young and strong, you will get through this, but it will be hard some days.  Take the medication, especially for nausea and constipation, don't laugh, you don't want to be constipated.  You have your life in front of you. There are great times ahead. Very best wishes Karen 
  • FranP
    FranP Member Posts: 396
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    in my last posting feb 20 it read i had vidulant chemo meant to say adjuvant chemo think my spell check was on holidays lol hope you are feeling a bit better. everyone here is wonderful and you can say and ask anything no mater how silly or embarrassing you my feel as we have all been there,  
  • iserbrown
    iserbrown Member Posts: 5,552
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    Fran you summed up very well what this forum is about - we all get it and we all try and help or make you laugh if we can!  The so called friends, we all come across those, very insensitive but if the boot was on the other foot, look out!  I had a dear friend of 40 years which I lost through this process and now I am not interested in revisiting that friendship.  This BC keeps giving, but it's places like this forum that helps us to get through and become focussed on the now and not the what if!
    Take care and sending you a virtual hug xx :smiley:
  • Monicasfootsteps
    Monicasfootsteps Member Posts: 13
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    Hi I'm a TNBC and started chemo last week.  I'm not sure whether to do the BRCA or other gene testing or not?  my grandmother died of cancer aged 53 in the 60s, but apart from her I know nothing about my grandmother's family cancer histories.  Never ever met or heard anything abiut them. Not sure whether I should check or not. I'm 50, and TNBC normally happens to younger women too, not women in their fifties??..or ?.Confused 
  • mum2jj
    mum2jj Member Posts: 4,330
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    You may have a history there? I am the first in my family to have TNBC so haven't had testing, however have just enquired about meeting with a geneticist as there is a strong family history of every other type of cancer in my family.  I don't think I will qualify for free testing.  Does anyone know how much private testing is?
  • socoda
    socoda Member Posts: 1,767
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    I think @Melclarity had private testing?