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Any triple negative survivors out there?

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1852
Member

Re: Any triple negative survivors out there?

Hi mooks sorry to hear of your diagnosis if you haven't already you may get better response on the secondary group which appears very active .DEN

Mooks
Member

Re: Any triple negative survivors out there?

Is anyone stage IV triple negative with liver mets?
Shi
Community Champion
Community Champion

Re: Any triple negative survivors out there?

Jennifer 👍👍👍😘😘😘brilliant news your biopsies are clear and take it steady now from m lumpectomy and Amb, don’t try and do too much ch too soon. Get your creams in for radiotherapy good ones are moo goo from Amazon, dr organics aloe Vera and tea tree gel from Holland and Barrett, e45, Aveno keep in fridge and one in handbag and cream, cream, cream. Also drink loads of water during roads too. Get vest top from m&s or H&M or anywhere as you’ll have to go without bra during rads and also get air to it as much as possible when you are at home, think let the floaty kaftans. So you leased for you darling 💕💕shi xx
Jennifer29
Member

Re: Any triple negative survivors out there?

I got the results back, all biopsies were clear which is good but they can’t explain why the cyst has disappeared so they going to just going to keep an eye on it.
Also had my lumpectomy and snb on Friday so another hurdle out of the way, time to recover now before radiation xxxx
Unicorngirlmummy
Member

Re: Any triple negative survivors out there?

Oh Jennifer, 8 biopsies 😔 I hope you don’t have to wait too long for your results. Brilliant news for your other results though. I have my fingers crossed that the news will be just as good when you get your results. The waiting never gets any easier sadly 😕 Big hugs xx
Shi
Community Champion
Community Champion

Re: Any triple negative survivors out there?

Jennifer 😘😘sorry to hear you’ve ended up having 8 biopsy’s today and glad you are looking at it with positive 👍👭😁it’s better to make 100% sure which they are doing and have to send you ❤️❤️❤️That you got some good news too today even though you had to have other tests. Keep 💪💪💪💪beautiful lady 😘😘😘💕💕shi xx
Jennifer29
Member

Re: Any triple negative survivors out there?

Hi girls. Results today showed a complete response and no cancer can be seen! Great news. However, the benign cyst I have in my other breast (originally told was a fibrodenoma) has shown significant change since last MRI 4 weeks ago, making the doctors wonder if it was misdiagnosed originally and this cyst in fact was cancer - or its shown changes due to lack of oestrogen as periods have stopped, they aren’t sure if it’s one or the other... So had to have 8 biopsies!! to be safe 🙁 to make sure it’s not cancer. Anybody have a similar experience? Obviously now I don’t know what to think and worried xx
Mishy18
Member

Re: Any triple negative survivors out there?

Jennifer aa the saying goes time is a healer and its true, really is i still have wobbly days although alot feeer than when i first finished active treatment its usually when i see something in tv ir read about something you have been through a massive thing as we all have and once the hospital appointments start dying down you will probably benefit from some counselling to help you come to terms with everything xxx
Jennifer29
Member

Re: Any triple negative survivors out there?

Unicorngirlmummy — yes you’re right it’s going to take much more time than I expected however I don’t mind being off work 😅 all of this has made me slow down which is what I needed to be honest.
At least your periods returning shows you that your body is trying to work as it should do xxx
Jennifer29
Member

Re: Any triple negative survivors out there?

Bel regarding periods and hormones - yes I am in the UK and I will ask my nurse tomorrow because I do think they should be doing these tests. I already have a child and I did freeze 10 eggs before chemo, so I’m not concerned about the fertility part really as I do still have the option with the eggs. For me it’s more about getting my hormones balanced because before my periods stopped - even when I first started chemo I was no where near as anxious as I have been lately, so I do think it’s linked along with losing my hair and everything like that has affected my self esteem as well x
Unicorngirlmummy
Member

Re: Any triple negative survivors out there?

It does take time, you do long for your old carefree life. To make plans without thinking ‘I might have a hospital appointment that day’. The side effects from chemo will fade, you’ll gradually get stronger I promise. Enjoy that sun lounger ☺️ Xx
Jennifer29
Member

Re: Any triple negative survivors out there?

Thanks Bel, you’ve exactly described how I feel... for example I was so active before, including exercising most days of the week and I honestly thought when chemo was done, after a few weeks I’d be back to doing a bit of walking at least because one of my big hobbies is hiking but I can’t even do a bit of housework without getting out of breath and my joints especially my ankles are so sore. The only thing that helps me at the moment is rest usually on my sun lounger lol. So yeah I know it’s going to take much more time than I expected. I thought I’d be back at work mid August but now I realise that’s just not going to happen. Xx
bel
Member

Re: Any triple negative survivors out there?

Hi Jennifer,

Biggest bit of advice I can give is to be patient and accept you'll take a while to get back to normal. And you really can/will. I wasn't patient, longed for my life post treatment to immediately snap back into place. And was disappointed when it didn't. But, honestly, you need time to digest the magnitude of what you've been through. It's huge, and even more so when you're as young as I was/you are. I don't know re the periods, as I never did any testing and they just came back,  but I'd totally insist on getting levels checked if that's what you want. Sometimes, I find, you have to push the NHS (assuming you're in the UK) for stuff!

xx

 

Unicorngirlmummy
Member

Re: Any triple negative survivors out there?

I was older than you, 41 when the bloods showed that, about April last year. I’d finished chemo in the January. Then out of the blue at the end of July, they came back with a vengeance!!! No warning like I used to get, & very regular which they never used to be xx
Jennifer29
Member

Re: Any triple negative survivors out there?

Unicorngirlmummy - so you can still have periods even if you’ve got into menopause, sorry I’m not clued up on any of this xx
Unicorngirlmummy
Member

Re: Any triple negative survivors out there?

Hi Jennifer, even though my bloods showed that I’d gone through the menopause last year, my periods returned just over 7 months after the last chemo xx

Bel, I’m so happy to read your post. Fantastic news xx
Jennifer29
Member

Re: Any triple negative survivors out there?

Thanks Bel, yeah I don’t think I’ve really thought about how big of an affect this has had on me, it makes sense why I’m having anxiety really, I’ve just been so focused on getting better and trying to do more and move forward that I’ve not really thought about the impact of all of this on my mental state.

Regarding the periods, do we have our hormone levels checked or fertility checked or do we have to request this as I think it’s very important but no nurse or doctor has yet mentioned it 

xx

Mishy18
Member

Re: Any triple negative survivors out there?

Sorry about the typos im blind as a bat!
Mishy18
Member

Re: Any triple negative survivors out there?

Hi Jennifer glad i could help my treatment was op chemo rads too, a little different to yiu but the injection doesn't hurt in boob jyst a little stingy, and the wle was fine what was most uncomfortable for me was where the nodes were removed from aa for aches after chemo i had joint pain during chemoi had fec 2 doxetaxol and 2 abraxane although i also have an inflammatory arthritis im 47 so bit older than you so my joints might have improved by now without it! lm sure yiurs will improve over time as you are young periods again thats a tricky one mine haven't returned yet but again my age is probably alot to do with it mune stopped after 1st chemo yours def could come back as its still early days fir you your onc should discuss fertility with you maybe you could make an appointment to chat about it, good luck with your surgery and keep positive you have yearly mammos for 20 years which is fantastic and im sure your team will be able to answer any concerns you may have in between
We are all in similar situations but the best thing for anyone to hear is positive stories about after treatment ends which are inspiring to us all xxx
bel
Member

Re: Any triple negative survivors out there?

Hi Jennifer,
My treatment structure was a bit different to yours as I had lumpectomy, chemo, then straight into radiotherapy. I don’t recall experiencing joint pain, but by the end of all that treatment I was exhausted and also pretty low in my mood. I think that’s quite normal, and I seem to recall it took a few months for all that to pass. Remember, you’ve been through something massive - on every level, emotional and physical - so it will take time to come back to your norm. And everyone will be a bit different. So be patient, and trust you can return to feeling as good, if not better than before. Since having bc I’ve looked after my health even better than I did before & these days I reckon I’m actually physically stronger & in better health than I was before.

With the periods, I was told it would be pretty unlikely that I’d permanently lose them at 31 & go into menopause. I think mine came back a few months later, but again everyone’s different. I’ve heard acupuncture can be helpful with that.

Bel x

Jennifer29
Member

Re: Any triple negative survivors out there?

Sorry girls to keep bombarding you all with questions...

My op is on Friday, it’s a lumpectomy. I’m more nervous about the lead up than the actual surgery, apparently they have to inject this dye behind my nipple whilst having a mammogram, with no local anesthetic, I’m so nervous about this it’s going to really hurt. Mammograms are uncomfortable enough without a needle going into your breast. That’s then followed by another needle into the lump. 

Im going to talk to doctor tomorrow but can any of you tell me about it, am I over reacting does it really hurt? xx 

Jennifer29
Member

Re: Any triple negative survivors out there?

Hi ladies I have another question... I’ve asked my nurse when should I expect my periods to return after chemotherapy as they have now stopped and she said it’s likely they will because of my age, but I could go into early menopause and chemotherapy could have caused infertility. Please could you tell me what are your personal experiences with this? And is there anything I can do to help it happen as I just want to be healthy again. 

Thank you xx 

 

Jennifer29
Member

Re: Any triple negative survivors out there?

Ann-m, thank you I am definitely feeling better now hearing all of your responses and how well you’re all doing it is giving me lots of hope and reassurance! Big hugs!
Jennifer29
Member

Re: Any triple negative survivors out there?

Hi bel, aww thank you so much for sharing this with me, sixteen years is a long time! I am feeling better hearing this as you were in the same situation as me. Can I ask, what was the recovery process like for you with chemotherapy, physically, with joint pain and fatigue in particularly. I think this is what is making me so stressed as I feel like this sick person who can no longer do everything I could before. Thanks so much x
Jennifer29
Member

Re: Any triple negative survivors out there?

Thank you Mishy18, my Doctor has said I will have mammograms often until I’m 50 years old, so that’s over 20 years of regular checks so that makes me feel a lot better. I’ve just been worrying myself sick and I know it’s not good for me so now I’ve stopped looking on Google and reading scary stories and that’s why I’ve come on this forum to hear stories from women going through the same. Good luck with your mammogram I hope it’s all fine xxx
Mishy18
Member

Re: Any triple negative survivors out there?

Jennifer just to add your in a very good place in terms of how things are treatment these days is very good and lots of the stuff on Internet is quited dated and usually not relavent only listen to your team, mine were very pleased with my outcome and as the others have said you will begin to feel better about everything in there are lots of success stories just look at bel!!! As our lovely cc Shi has said keep focussed and stay strong 💖👍
bel
Member

Re: Any triple negative survivors out there?

Hi Jennifer,
I was in a very similar situation to you SIXTEEN years ago! 31 years old, aggressive but small triple neg tumour that hadn’t quite made it to the lymph but had started to head that way. Anyway, I’ve been fine ever since! Tho I well remember the fear, and especially how weird it felt to finish treatment (lumpectomy, chemo & radio) and feel like there was nothing else holding me up. I think that’s normal & it does shift, just as the whole fear thing slowly does as more time passes. And sounds like you’re doing great with all the nutrition, supplements, reducing stress etc., something I too embraced as I figured it can’t do any harm & may well do a lot of good.
Best of luck
Bel xxx

Shi
Community Champion
Community Champion

Re: Any triple negative survivors out there?

Claire ❤️❤️❤️Thanks for sharing your story you beautiful amazing lady 👍👍👍your writing reminds me of the beautiful Emma hannigan who had to join the stars but continues to inspire and sparkle her magic jennifer 😘😘😘a great book that’s helped me is Patricia prijatel’s book surviving triple negative breast cancer. Keep focused, keep positive, keep 💪💪💪and ❤️❤️❤️❤️ Oh and 💃🏻💃🏻💃🏻🕺🕺🕺🕺💃🏻💃🏻💃🏻💃🏻 And and 😁😁😁😁 💕💕💕Shi xx
ann-m
Community Champion

Re: Any triple negative survivors out there?

Hi Jennifer,
It looks like you are in the best position you can be & there’s no reason why you shouldn’t be absolutely fine.
It does take some time for the mind to settle & google can make the anxiety gremlins flare again.
Loads of us have made some lifestyle changes after a bc diagnosis, so do what you’re comfortable with & try not to overthink it all.
Sending hugs
ann x
Mishy18
Member

Re: Any triple negative survivors out there?

Great read Claire very honest its probably good to get it all down in words our journeys are all very similar and probably very different too, thanks for sharing yours very pleased to hear that everything is going great for you now and loving the new hair 👍
Jennifer welcome, i was surgery 1st then chemo and rads i had cancer in node and vascular invasion as well as tumor the Internet is a scary place when you start googling stuff i was told by my onc that chemo works really well on TNBC as its aggressive in nature and chemo is better for faster growing cells, im sure you will be fine i know we haven't got the other drugs to fall back in but your team will look after you if you had any worries or concerns you would be seen very quickly i hooe this helps a little im finished treatment completely in Jan, now just waiting on my results from 1st mammo and feeling alot more confident xx
Jennifer29
Member

Re: Any triple negative survivors out there?

Hello everyone I’m new to this forum I hope you’re all okay. I am looking for any reassurance? Here is my situation... i was diagnosed with tnbc, early stage I had just turned 29 yrs old, was told it’s grade 3 so had the ability to spread to the lymph nodes although it hadn’t as I found it so early - the tumour was only 18x9mm very small. I’ve had to have chemo 6 rounds of EC-T and get my results of my final MRI next week to confirm how much it’s shrunk, it can’t be felt anymore, which is good and then I have my lumpectomy in 2 weeks followed by radiotherapy. My doctors are confident everything is going according to plan.
But now the chemo is over I am worrying that I’m not safe anymore as apart from radiotherapy there’s no further treatments and I just have to hope and believe it wont come back. The problem is I’ve done soooo much research online to the point where I’ve scared myself and feel I have to be in control and do so many things such as changing my lifestyle, diet, take supplements, detox, get rid of stress and so on but I actually feel more stressed thinking and worrying about all this. 😞
Please help! Xxxx
Claire123
Member

Re: Any triple negative survivors out there?

Firstly, read this http://rockuptocancer.weebly.com (I was on same chemo regime)
Secondly I was EXACTLY the same as you re work (I nearly had myself DEMENTED trying to make the right decision) - and all I can say is thinking about it so early in my journey, wasn’t the right time - I’m 18 months on and look at it and feel completely differently now - I’ve realise (for me) I need to go back (reduced hours) and see how I feel - if it’s not working for me then I’ll be taking a career break or trying something new
Shi
Community Champion
Community Champion

Re: Any triple negative survivors out there?

Bullie rule, thanks for sharing this 💕💕Shi xx
billyrule
Member

Re: Any triple negative survivors out there?

Breaking news for TNBC June 18, 2018

 

A combination of Keytruda (pembrolizumab) and Zejula (niraparib) has shown promising and durable response rates in triple-negative breast cancer patients, regardless of their BRCA mutational status.  A pill a day is working for many testers.

 

 

https://breastcancer-news.com/2018/06/18/zejula-keytruda-promising-response-rates-phase-1-2-trial-br...

Shi
Community Champion
Community Champion

Re: Any triple negative survivors out there?

Hi mishy ❤️❤️ 👭👭👭💕💕Shi xx
Mishy18
Member

Re: Any triple negative survivors out there?

Sorry posted without say Bel thank you for the post very good to hear how long it has been since you had it, sometimes people only ever find out about the worst case scenario and rarely hear a success story, i wish all you ladies who are just being diagnosed or starting treatments well and hope that you will be reasurred by our posts xxx
Mishy18
Member

Re: Any triple negative survivors out there?

Hi everyone, hello Shi, was diagnosed last year end April with Tnbc had some high grade tn DCIS as well as the tumor 38mm with vascular invasion and 1 19mm cancerous node
I haven't aoart from thst original stuff been told too much about the TN stuff like you Shi but its great to hear that people do survive this cancer type and are doing well years down the line i class myself as a survivor its my birthday tomorrow the 1st one totally cancer free and im so happy last year i was grateful i had caught it early enough to be having treatment with a curative intent but this year i am feeling good about it all and confident its a scary place to be in when 1st diagnosed and started treatment but it gets better and there is light at the end of the tunnel 👍
Shi
Community Champion
Community Champion

Re: Any triple negative survivors out there?

Bel, just wanted to say thank you for posting. I had vascular invasion and no node involvement with the tnbc last August and no one has really explained it to me other than when I asked about it the said don’t worry about it, so I’ve tried not to, so reading your post has given me hope and comfort, thank you 💕💕Shi xx
1852
Member

Re: Any triple negative survivors out there?

Hi swallows I can't help with information regarding braca test but others will be able to . I had a mastectomy in 2014 followed by chemo . I had two lumps one only small both triple neg .no spread so just chemo . You will still be in shock once you have seen onc and know your plan your mind will settle to getting through chemo . When you get your date I recommend you join the forum with others going through chemo I found doing this helped . Take care of yourself DEN 🎀

bel
Member

Re: Any triple negative survivors out there?

Hi swallows,
Sorry to hear about your diagnosis. Just wanted to offer you my ray of hope: I was diagnosed 16 years ago, aged only 31, with a small (12mm) but aggressive tumour, which hasn’t gone to lymph but had started to head that way (they called this vascular invasion). The tumour was triple negative. Anyway, despite subsequently learning I do carry the brca 1 mutation (eventually I had a preventative mastectomy), I’ve never had a recurrence of the original tumour nor a new one. Wishing you all the very best.
Bel x

swallows
Member

Re: Any triple negative survivors out there?

Hi everyone,

 

I was diagnosed with triple negative breast cancer yesterday. 22mm, no node invoolvement, clearish margins. Tissue beyond is changing they said. I am glad now that  had a mastectomy now, although with lumpectomy, they could have offered me radiatherapy as well. I am 53, so  we was expecting the common, hormone receptive breast cancer, not this one. I have oncologist in two weeks time. I have only one child, a daughter who is 13 a I had her when I was 40. I have some family history but am not close to my aunts and they live abroad so am never really sure what is happening with them or my cousins. I asked for a BRCA test as I am worried about my daughter now.

 

I read somewhere that if you get the BRCA and it comes back positive, there may be another drug they can give you along with the Chemotherapy and also that you could join a trial? I will go back and check where I read this and let you know, but I can't remmeber at this moment.

 

Is there anyone who can send a ray of hope? I am shell shocked too and really worried, but glad I found this site.

 

 

 

Shi
Community Champion
Community Champion

Re: Any triple negative survivors out there?

Evosam, hope you’ve managed to make decision on brca testing lovely, keep 💪💪💪💪💕💕💕Shi xx
Mummy_1980
Member

Re: Any triple negative survivors out there?

 
Shi
Community Champion
Community Champion

Re: Any triple negative survivors out there?

Evosam 😘😘😘having the test is your choice my darling but I know other tns who have had to fight to get the test. I was lucky my trust offered it me so I took the test as I wanted options if I was carrying it. Thank god mine came back negative. It’s such a lot to get your head round but it could give you options if you do carry it. Keep 💪💪💪💪you are doing amazing ❤️❤️❤️💕💕Shi xx
Dee1945
Member

Re: Any triple negative survivors out there?

Thank you for your encouraging Post.
Dee
Dee1945
Member

Re: Any triple negative survivors out there?

Thank you for your encouraging  Post. Our daughter is a 2 time triple neg cancer survivor. It has been 3 years since her double mastectomy. 5 years since her lumpectomy. After both she had both chemo and radiation. The first go round there was no Braca but the second time there was.

  Again thank you for your encouraging  Post.

Gratefully. Dee

1852
Member

Re: Any triple negative survivors out there?

Hi pam how you doing its a long time since you posted hope you doing ok can't believe it's nearly 4 yrs this summer I know you go on Facebook (I don't do Facebook)  . Hi to everyone else hope all going well for you all its good to see some names I know are doing ok let's hope it continues . Best wishes to all 🎀

bel
Member

Re: Any triple negative survivors out there?

Sorry to hear about your diagnosis, Evosam. I was diagnosed with triple neg 16 years ago aged 31. I wasn't tested for BRCA at the time as we had no other family history, but some years later 2 cousins, both in their 40s, developed BC, and I was then tested and found to have BRCA1. I'm not sure how old you are, but I believe that if you are below a certain age (like 45?)  & have been diagnosed with triple neg it's now fairly routine to be offered the BRCA test. But given your family members only died of the disease late in life, I guess there is a good chance it wasn't caused by the mutation, as they say a particular cause for concern is when family members are diagnosed young. 

 

Personally, if in doubt I'd have the test. I'm glad I did, even though it's not much fun finding out about the mutation. But it does empower you to make choices. I had a double mastectomy & reconstruction 18 months ago and I am very glad I did this and have now reduced my risk of a new BC massively. I'm also very happy with the results of the surgery, something I hadn't anticipated! 

 

Good luck! 

bel
Member

Re: Any triple negative survivors out there?

Sorry to hear about your diagnosis, Evosam. I was diagnosed with triple neg 16 years ago aged 31. I wasn't tested for BRCA at the time as we had no other family history, but years later 2 cousins, both in their 40s, developed BC, and I was then tested and found to have BRCA1. I'm not sure how old you are, but I believe that if you are below a certain age (maybe 45?)  & have been diagnosed with triple neg it's now fairly routine to be offered the BRCA test. But given your family members only died of the disease late in life, I guess there is a good chance it wasn't caused by the mutation, as they say a particular cause for concern is when family members are diagnosed young. 

 

Personally, if in doubt I'd have the test. I'm glad I did, even though it's not much fun finding out about the mutation. But it does empower you to make choices. I had a double mastectomy & reconstruction 18 months ago and I am very glad I did this and have now reduced my risk of a new BC massively. 

 

Good luck! 

evosam
Member

Re: Any triple negative survivors out there?

I was diagnosed today with TNBC, left breast 35 mm, no node involvement, clear margins.  Appointment with Oncologist in 2 weeks, chemo starts then in around 4-6 weeks, then radiotherapy.  Not sure whether to have this BRCA test done, I know my paternal grandmother died from breast cancer in her 70's and my maternal grandmother died from ovarian cancer at 85, but no other females in the family. Oh forgot to say had Lumpectomy 5th May.