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SO WORRIED

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Re: SO WORRIED

Hey

I've just found out I am TN - this site has been great at helping me understand what it means. Like many others, doc didn't mention it!! I've had 2 ops now, 2/13 nodes positive and just waiting on ONC appointment and getting things started.

thanks for posting and helping me understand xx
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Re: SO WORRIED

Hi everyone, just wanted to chip in that I'm another TN girl. I finished all my treatment a month ago and have been really struggling emotionally, even though my pathology and response to treatment was good.

Reading the replies above reminding that "online comminities may not be a representative sample of the population and possibly more likely to be people with issues seeking support than jo bloggs who is just getting on with life" was a real help. It's easy to get swept up in all the negative horror stories, which many times have resulted in me being a panic stricken emotional wreck. I've read some positive stories on here too and they have helped to calm me down a bit. Googling is definitely never a good idea. I am trying to learn to remember the good points about TN and focus on the fact I beat it once, with good results and there is a lot in my favour too. I'm also trying to remember to contact BCN or other medical professional when I'm worried, instead of always turning to the internet - your medical team knows YOUR case and are in the best position to advise.

As for chemo, everyone reacts differently in terms of side effects. I suffered quite badly, but knowing it was doing its job got me through it and looking back now (5 months on) I'd say it was manageable. Rather than freaking out over the fact they're giving it to you even though you're cancer free, try to think of it as a positive - it's a preventative measure and better than not having it in the long run. If there were any odd cells left, the chemo will annihilate them.

Lots of love to you all x

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Re: SO WORRIED

Aw thanks Maggie.
Funkilala ... the new outlook is all thanks to everyone on here who has given me hope. Especially Maggie 1964, she put me on tbe positive path again.Thank you all xx

Re: SO WORRIED

Well done TWB.
Loving the new outlook!

X

Re: SO WORRIED

That's my girl xx
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Re: SO WORRIED

Hi everyone, saw onc who was very nice. He explained everything to me, he was so thorough I hardly had to ask any questions. He didn't overload me. BUT NOT GOT A DATE YET. Had op 1st November!!! Having FECX6, didn't have to mention cold cap, he started to explain as soon as he had explained about chemotherapy, don't know why but I thought I'd have fight for it!!! Had ECG weighed (lost a stone) measured and blood test. Feeling really good now.Just want start date. Will be in touch everyone xxx

Re: SO WORRIED

Hi Tomorrow will b...

I'm TN but I only really found out the details from reading the Forum, though I confess I did a bit of Googling but would have been best avoided.

I had my onc appointment on the Thursday. I had to have an ECG to check my heart before starting treatment. I was anxious to start chemo asap as my cancer was quite aggressive. As they did ECGs on Thursdays the nurse booked me in for that afternoon and I started chemo the following Monday. I only know my own experience. I don't know if they have standard timescales other than the NICE guidelines recommend starting chemo within 31 days of surgery. My panic was that I had to have 2 lots of surgery which meant I had to wait double the recommended time but I was told that delay wasn't an issue (though it was mentally for me).

Good luck for tomorrow. Let us know how you get on. We can offer lots more support and advice and there'll be threads for those who are at the same stage as you and you can share experiences and support each other.

Flori
X

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Re: SO WORRIED

Hi everyone, 1st appointment with onc tomorrow, nervous and forgotten everything I was going to ask !!! How long do you think before I start chemotherapy ?
Everyone, big big thank you for the support you all gave me when I found out I was t n . xxx
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Re: SO WORRIED

chattykatty I LOVE YOU !!!!!! wow you areso right.Thisi is the attitude im going to takefromnow on. Thank you.

carabel Ihad a majormeltdown too. Thanks to all the lovelyladies on here like yourself im smiling again .

Goodluck to all of you wonderful ladies.
xxx
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Re: SO WORRIED

Hi thanks lulu for your comment...I too am tn, in fact I put the thread up about tn survivors....only because like so many of us I goggled and could find any positive about tn. I also asked to be buddied up with someone in a similar situation to me...but they said it wouldn't be possible...this terrified me I went into meltdown thinking no one survived tn. Fortunately some of the responses to that thread and others has helped me calm down a bit. As lulu said we do have some positives to turn to...nose from hormone treatment, 5 years reoccurrence rates go down then 8 years pretty rare.
i have just finished my rads yesterday, I have been told that as far as they are concerned I am now cancer free. I celebrated end of treatment with a bottle of champers and a big box of chocs...
i am now going to concentrate on enjoying life to the full. Before cancer I worked, mums at my daughters school didn't know I was my daughters mother as I was never there to drop off or pick up. Cancer has made me realise life is too short, I'm giving up work, enjoying my children and we are going to have fun....so F**K Cancer.

Re: SO WORRIED

Hi tomorrow will be
I am another TNBC girl. I also was only told I was ER and HER2 negative. I discovered this meant TN after googling and scaring myself silly. When I spoke to my surgeon he confirmed that all it meant for me was that hormone therapy and herceptin would not benefit me and that TN does respond very well to chemo. He also explained that the chance of recurrence drops significantly after 3 years and is very rare after 5 years. In fact my mum, who also had TNBC has just reached her 3 years mark and is doing fine.
I finished chemo in July and radiotherapy in September. Chemo was not easy but it was doable and I managed to work most of the way through treatment. The support on this site has also been fabulous and has helped me through it.
Good luck with your treatment and try to keep that smile!

Xx

Re: SO WORRIED

Glad your feeling a bit more positive about things... It is hard getting your head around it all and there is so much duff informstion out there too.... But with your pathology im sure your consultants will be very optomositic.

good luck with the chemo in january xx
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Re: SO WORRIED

Thank you Lulu,yor message has really helped me and actually put a smile back on my face. I had a major meltdown yesterday, so thank you again. Yes my grade was 3 1.6cm but clear margins and s n clear so without the tn excellent news. I see onc 17th Dec ,looks like I will be "starting chemo in Jan" girl. MANY MANY thanks once again, it means so much to me x

Re: SO WORRIED

Hi tomorrow will b

i am another tnbc girl..... My hosp dont tend to use the term tnbc and just said i was neg for ER and Her2. But because id reas things on here long before my diagnosis i asked if it was tn and this was confirmed.... At first i was terrified as after reading info from 2006 whn tnbc was just becoming a known type if cancer but had this stigma of poor prognosis. However much of that was based on the fact that they didnt know tnbc existed so didnt treat it specifically but did the standard one size fits all tretment which unsurprisinly didnt help with tnbc..... However since then they have done lots of research and know that tnbc responds particularly well to chemo and to certain types of chemo and more info and treatments are becoming available all the time.

i also discovered that 'poor' prognosis wasnt correct it was a 'good' prognosis but a bit poorer than hormone pos bc.... But cerain things are associated with tnbc such as the fact it is nearly always grade 3.... Occassionally grade 2 but have never heard of grade1 tnbc.

there are benefits to having tnbc too.... no need for hormones and their yukky side effects and that after around 5 years recurrence is very rare and by about 8 years they consider you cured as a recurrence at that stage is virtually unheard of.

i think i would rely more on what your onc and surgeon has said than on individual patients perspectives..... Remember hey will see hundreds of women with the same diagnosis but people using online comminities may not be a representative sample of the population and possibly more likely o be people with issues seeking support than jo bloggs who is just getting on with life.

take care xxxx
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Re: SO WORRIED

Saffronseed...thank you for your message. You are so right,no one knows what is ahead of us , as said you we must live fortoday. Thank you for sharing your story...you are an inspiration. God bless .
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Re: SO WORRIED

I have triple negative secondary breast cancer and am currently on my 5th infusion of Taxotere chemotherapy. All is going very well indeed - no nausea, tingling in my feet and fingers and of course I am now bald, but use a wig. My tumours have shrunk and some have completely disappeared. I am now told I can have a mastectomy and although I will not be cured, my cancer is currently manageable and I am in it for the long haul. The current plan is for my chemo to be continued after the mastectomy. No-one can imagine the fear that overwhelms you when you get the diagnosis - I still feel as if I am in a dream, and I was diagnosed at the end of August. However I think of myself as living with cancer, it dying from it. All the best

Re: SO WORRIED

Hi tomorrow will be - as others will say you should not beat yourself or your onc over your path results - every single person is different and any cancer dx is the pitts and we all whatever our results have the fears you have. Whilst you may be TN it is not the end of the world and there are many many ladies who are living long healthy lives who are TN. The only difference for you will be that hormone theropy or targetted theropy will not benefit you so they tend to give chemo instead. The positive for you is that your cancer has been cut away and its gone (and thats what your surgeon meant by being cancer free) and you haven't mentioned spread to lymph nodes which is good news too. Your tumour was relatively small - which again is a postiive. Whilst I am not TN - I had a tumour that was 9cm - yes 9cm - it had spread significantly to my nodes and I had to have chemo and radiotheropy. I was completely distraught when I got my news (just like you) and felt that was it... but as others have said you get through it. Chemo is not too bad - its not nice, but once you are in the chemo zone (so to speak) time goes quick and you learn so much about your body and what it can tolerate and how much you can do. I am nearly 3years now the line now - diagnosed in January 2010 and I am fine, living a normal life and like others once you have had a dx you are never the same, but you find that new norm for you. You need to live for today and not worry about what might (or might not) happen in the future - you may spend all your time worrying for nothing! - they say that cancer 'may' come back (thats everyone whether TN or not) or it 'May not' so why worry about something that may not ever happen. lots of hugs and good luck with your chemo xxxx

Re: SO WORRIED

Hi TWB

Try not to drive yourself mad with why he did not tell you about TN. In reality, I think they don't say it as they fear they will scare us/overload us with incomprehensible info. They do not always realise just how scary not knowing stuff can be. You may have had chemo either way anyway. It's quite common these days even when everything has been removed. Focus on getting through the chemo and not on endless what ifs... I am glad you are going to ring the helpline.

xxx
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Re: SO WORRIED

Funkiala,
Thank you for your message. When I asked my BCN why I was not told she just said that when iwas told l could not have hormone therapy,hat is what he meant and i must speak to oncologist . Iam going to TRY to put the tn bit to the back of my mind and concentrate on the fact that i am cancer free. Dreading chemo but got to stay positive. The highs are high but the lows sure are low.
Going to ring helpline later for a bit of advise.
Thankyou so much.
xxx

Re: SO WORRIED

Hi tomorrow will b........

I am sorry to read you're struggling at the moment. I just wanted to remind you that if you need to talk things through or to have a little extra support please don't hesitate to give the BCC helpline a call. Here you can share your feelings and concerns with a member of staff who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

Re: SO WORRIED

Oh sweetheart!
Try not too worry to much. I cant offer any more advice on top of what you have been told by the wonderful ladies before me but may i suggest something? Ring your BC nurse first thing tomorrow and either talk to her on the phone or ask for an appointment to see her asap. I'm not sure how easy that would be with travel and stuff but I do know that she will answer all your questions and put your mind at ease.
Think about the cancer free bit and dont focus on the TN stuff until you speak to your BC nurse and you understand more.
Hang in there

Funki x
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Re: SO WORRIED

Thankyou Lauralable for your kind words. Why was i not told. why did my surgeon say its all good news cancer free . No mention of triple neg. He said I had to have chemo because it was a grade 3 . I am so sad and angry that i came out of his office with his words ringing in my ears....all good news. My poor family and friends still think its all good, I have not the heart to tell them.Sorry for the rant . Thank you for you support . Like everyone im going crazy with worry as nothing has been explained to me. Worried what the onc will say ! my daughter will be with me . xxx
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Re: SO WORRIED

Hi tomorrow will be, try not to stress (I know that's easier said than done!) I'm TN too and when I stumbled across this forum months after I was diagnosed I panicked too, I had no idea what it meant and saw that thread too about the survivors. I had a proper panic attack, pretty much had a breakdown at my Onc and was so worried, now I've had some time to think about and all and deal with it I've realised we've all had a rubbish deal and yes sometimes TN isn't the best news but neither are lots of other types or diagnosis. Your obviously not long diagnosed, its all so new and fresh, you need to give yourself time to deal with it all. Chemo isn't fun but its def doable, I've not long finished 4 months of it and its tough at times but manageable. Good luck 🙂
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Re: SO WORRIED

  • Hi ,bit shaky,just spoke to nurse confirmedI am T N . Bit speechless at moment.
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Re: SO WORRIED

You are so right. Think it best to leave the forum for a bit to straighten my mind out . Cant help thinking why NOTHING was mentioned about the implications involved. skipped past them results as if unimportant, said the reason chemo needed was high grade (3).Thank you for taking the time to answer me xx

Re: SO WORRIED

It is more common to have chemo with TN even when you have clear margins and clean lymph nodes. If that is what you mean when you said you were told you were cancer free. Have you had your surgery? Maybe lurking on here is feeding your anxiety a bit too much. You are entitled to be anxious but it will make your head hurt and prevent you from thinking straight. Phone one of the nurses on the helpline - I have done this and it is very helpful.

x
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Re: SO WORRIED

when i got my results friday the first thing the specialst said was "its all good news, your cancer free" said bscause of high grade will hace to have chemo. surely he should have said something about the implications of the 2 negative results. was on cloud nine. If I had not of wandered onto this thread would never of been any wiser as i had not read anything about t n . Is it really as serious as im reading on here? Saw thread asking " is there any t n survivors on here. The worrying starts up again . Thank you for your replies. xxx

Re: SO WORRIED

Well, I am not sure I should diagnose you.... As I said it tells you what you have not got rather than what you have. It does sound like you do not have any of the sensitivities to hormones but you really need to ask one of your team. The relevance is mainly about treatment, so you might have a different chemo regime and you won't get follow up herceptin or other hormone therapy, because you don't need them.
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Re: SO WORRIED

Thank you Cressida, does this mean i am t n ? xxx

Re: SO WORRIED

Hi,

On the main page of this site choose "Primary Breast Cancer" from the menu at the side, then "types of primary breast cancer" from the new menu that appears, then you will see "triple negative" as an option. Not sure why it is so difficult to find. I have heard, however, that PR is no longer always tested for as it as quite unlikely to be ER neg but PR pos. Maybe this is why you can't find it on your report. Anyone with more knowledge on this? I think it is quite a recent development and I am not sure if it is the case in every hosp.

In this country doctors often do not use the term "triple negative" and prefer to say that you will not benefit from hormone therapies or something like that. They will know what you mean, so ask them. It is a definition that says more about what you have not got rather than what you have.

Try not to panic. Easy to say, hard to do. I have certainly paniced. You are entitled to panic. However, I have talked to lots of TN girls who have a had a very good response to chemo. Write down your questions and take a helpful family member or friend with you as the brain tends to turn to mush when scared.

Another hug for you. x
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Re: SO WORRIED

Thank you, Revcat to my rescue again. well i know im E R - and HER3 - but he did not mention PR RESULTS . SCARED to ask . Thank you again when i get the courage to ask ill post on here. Thanks for hug xxx

Re: SO WORRIED

Hi Tomorrow Will Be...

It is so scary isn;t it, when you hear all these terms and abbreviations you don't yet know about.

The three potneital 'positive' things are ER - oestrogen receptor; PR - pogesterone receptor, and HER2 - human epidermal gorwoth factor receptor. People who are strongly ER+ and/or PR+ can benefit from Tamoxifen or Aromatase Inhibitors; people who are HER2+ can benefit from herceptin. Triple negative means that none of these three factors 'feed' the cancer, so there is no 'extra' dedicated treatment (as yet) they can offer. So far as I can ascertain, TN (triple negative) cancer usually responds especially well to chemo.

Ask you BCN or your oncologist when you see them, I am sure they will be able to tell you. People with all kinds of cancer do really well, don't forget that what you read on here tends to be the people who have struggles.

Gentle hug. Once you have the information, you will be able to move forward again.
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SO WORRIED

Got my results Friday told cancer free but grade 3. 1.6 cm . Got to have chemo. Just wandered onto this thread about t n and now worried if I could be . Can any one PLEASE tell what are thr 3 negative results, is iy ER HER2 what would the 3rd negative be and would the surgeon have told me if i was when given results. oh god what does it all mean! iam now worried out of my mind. PLEASE HELP.