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Any triple negative survivors out there?

Taran
Member

Re: Any triple negative survivors out there?

Tom, that's great to hear. Thank you!x
Marina
Member

Re: Any triple negative survivors out there?

Thanks for sharing your story Bel. Did you change your diet, take supplements or coffee enemas??
Also did they call it TN 14 yrs ago, I thought it was discovered/named more recently.
TomTS_BCC
Member

Re: Any triple negative survivors out there?

Hi Marina

 

I hope you don't mind me commenting too! But I wanted to share with you that lots of the volunteers we work with on our Someone Like Me service are a long way past their diagnosis. We do actually have a volunteer that was diagnosed with triple negative breast cancer in 2003.

 

Another of our volunteers Annie, actually celebrated being discharged from her hospital on Wednesday, now 5 years past her diagnosis. You can read a bit about Annie here and actually email her directly should you wish- https://www.breastcancercare.org.uk/information-support/support-you/someone-talk/someone-me/our-volu...

 

Again, I hope you don't mind me mentioning this.

 

Tom

bel
Member

Re: Any triple negative survivors out there?

Amazing news, warcol!

Marina, I did go back to work after treatment (I was only 32 at the time!), but I totally changed the way I worked & went from very long (& often quite stressful) office hours to working freelance, as the thought of going back to the full-on office world really didn't appeal. And I guess I thought (after everything), life is too short, and if I'm really stressed maybe it's not beneficial to my health. 14+ years on I am well with no recurrences - and who knows if that decision re work has anything to do with being well, but I'll bet it didn't do my health any harm (!) and it has given me a happier life/work balance. So I'd say try and find the balance that works for you, whether it's no work or part-time work, or a different job. This illness made me realise that I can't spend my life dreaming about/waiting for the future, as right now is all any of us (not just people like us who've been through cancer) have. Best of luck! Xx

Warcol
Member

Re: Any triple negative survivors out there?

Hi marina and everyone else
I've just returned from the hospital and been told I've had an almost compete pathological response to chemo! None of my lymph nodes were infected and there was a residual microscopic cancer remaining which has been removed and he got clear margins so I can move straight to radiotherapy! Only test I'm waiting for is the gene test so still may need a double mastectomy later on as a preventative measure but I'm over the moon xxx
Marina
Member

Re: Any triple negative survivors out there?

Thanks for the reply Colista. It's just I'm rethinking my life (which is sooo stressfull - I mean the rethinking & the risk). Looking into giving up work and being poor, but LIVING without always waiting for Friday. I'm not back at work yet but the thought frightens me. Having said that my days now are very lonely, but I thing once I've been given the all clear and feeling 100% better it's the way to go.
xx
Dee1945
Member

Re: Any triple negative survivors out there?

Hi Colista, Bel is a 14+ year survivor. She and the lady that is 10+ really helped me support our daughter when she was going through treatment. There are others out there too, but not many on this thread. You all have our prayers for positive outcomes and long healthy lives after treatment.

Dee

Warcol
Member

Re: Any triple negative survivors out there?

Hi marina

not sure about on here but ive  spoken to one lady in America whose coming up to her 10th cancer free year and is TN. Also there's robin Roberts in USA (tv presenter) who had TN in 2007 and still cancer free. I think we don't see many ladies who are TN and long term survivors as these forums etc werent really about then esp for TN as its the one form of BC that they still need lots of research into and also those that are living are doing just that and not on these sites.

colista xxxx

Marina
Member

Re: Any triple negative survivors out there?

Just wondering, how many years is the longest TN survivor here?
Warcol
Member

Re: Any triple negative survivors out there?

Thank you ladies. I had a slight line n my arm but after exercises it's gone. I'm also on high dose clexane as I had a blood clot so this may prevent it happening xxx

Taran
Member

Re: Any triple negative survivors out there?

You can very often see or feel a firm "cord" running along your arm. I had a very prominent bit in the crook of my arm and could follow it either side of what I could see. Like Pam, it hasn't lasted thankfully. xx
Whitfield
Member

Re: Any triple negative survivors out there?

It a tightness that runs through the arm or any part of the arm which seems to restock movement.  It's the lymph channels which have been cut from the nodes trying to find something to attach to.  Therefore they often intertwine like ivy frowning opinion a hedge.  Not everyone get them but if you do start to get tightness report it to the BC nurse as you can do other types of exercises.  I had them twice but working on them I have now recovered.  It's more often in people who have full mode clearance.

 

pam x

Warcol
Member

Re: Any triple negative survivors out there?

Stupid question but how will I tell I've got cording? Xx
Whitfield
Member

Re: Any triple negative survivors out there?

Great news.  Be prepared for some pain as you will still have painkiller in system from operation.  Fingers crossed for clear margins.  You will need to ask for tissue results to see how many modes were involved.  Wishing you a speedy recovery.

 

look out for cording and keep up the exercises.

 

px

Warcol
Member

Re: Any triple negative survivors out there?

Hi Pam
Started exercises last night! BCN said I already have great movement and only taking paracetamol as pain not to bad at all at the moment!
Had a look at my scars and have to say really pleased with the surgeons work just hope he's got clear margins and I'm brca negative so I don't need more surgery xxx
Whitfield
Member

Re: Any triple negative survivors out there?

Hello Warcol,  Just remember to do exercises as per instruction and if taking pain relief keep eating prunes as you can get blocked up.  Good luck and keep up thefight

 

pam x

Warcol
Member

Re: Any triple negative survivors out there?

Hi all had my op today! WLE ANC and Hickman removal! they've decided to keep me In overnight so I'm taking advantage of the peace and quiet lol
Only downside is its blooming sweltering in here
I was down in theatre for 3 hours! Will see surgeon tomorrow I think xx Hope everyone is doing ok X Colista xx
1852
Member

Re: Any triple negative survivors out there?

Hi very quiet on here how is everyone hope all enjoying the lovely weather take care X DEN

1852
Member

Re: Any triple negative survivors out there?

Hope you get some help bekah it will be a great help to you 2016asnt been good in some ways for you but onwards and upwards .take care xxDEN

Whitfield
Member

Re: Any triple negative survivors out there?

Bekah,  Do take all the help offered as the journey can take it out of you.  You need to look after you now and things will resume when your a bit better. Sounds like you had a time of it with the birth.

 

sending love.

 

pam x

Whitfield
Member

Re: Any triple negative survivors out there?

Good luck Marina.  I do wish you clear margins.  Let us know.

 

All -

 

Thanks for everyone with messages.  I will get hubby to come to next appointment with me.  I have tried the natural gells and moisturisers for the lady part which work sometimes or cause more itching.  It may be allergies as well as a skin problem.  Or just part of the menopause which is what my GP thinks meaning low hormones and no HRT available.  Rock and hard place.  The lymphodeama in that part is not helping.  Bloody mess I am.  In my head I'm 19 but in reality 57 so I have to expect some body changes.

 

Off for breast MLD now.  This costs £56.00 per session where I live.  The cost of cancer, loosing job, heating on during cold months during chemo, travel, parking, sports bras for lymph enlarged breasts is not something the government or people think about.  Cancer costs in so many ways including self worth.

 

pam X 

Taran
Member

Re: Any triple negative survivors out there?

Good luck today Marina xx
Marina
Member

Re: Any triple negative survivors out there?

Hi Pam, You do seem to be having bad luck all round. Good idea to go with hubby and generally be more pushy till you get results.
I am in hospital now waiting to go down to surgery for clear margins.
Marina
Bekah78
Member

Re: Any triple negative survivors out there?

Great news Den

Thanks ladies. Yes the Drs seemed shocked. I was told they train for it but hope to never see it. The dr in charge that night said he and the team were still affected by it a week later and that we wouldn't be forgotten. They've invited me back to go over it all but I've said I need to deal with one thing at a time and getting through this next challenge is my focus. 2016 hasn't been kind to us though.

My health visitor is seeing if she can arrange for a childminder for a few times a week to help me with our little one. Could mean I get some time just to catch up on sleep etc and to recharge my batteries. I turned down the offer for him to go to a nursery as was worried about what virus's he might pick up and expose me to. Plus if he got poorly I'd feel guilty for exposing him to that when under normal circumstances I'd BeLooking after him. It's a minefield of emotions isn't it. Xx
Katydaw
Member

Re: Any triple negative survivors out there?

Hi Colista. I haven't had Carboplatin in the same circumstances as I had my mastectomy and lymph removal before I started chemo but I am having carbo with my weekly taxol at the moment. There is some evidence that platinum drugs such as carbo are effective in tnbc xx
Warcol
Member

Re: Any triple negative survivors out there?

Hi ladies

not posted for a bit but have been reading all the posts! I'm due my op 17th and counting down the days bt I do have a quick question. On another forum there is a lady with TNBC and she had a good response to FEC-t chemo but when she had her lumpectomy and node clearance there was still microscopic cancer left so they are giving her 3 months of extra chemo called cibroplatin (think that's right) before moving to rads. I've not been told about this and will query with my oncologist but just wondering if anyone else has had this. Love to you all Colista xx

Warcol
Member

Re: Any triple negative survivors out there?

Hi ladies

not posted for a bit but have been reading all the posts! I'm due my op 17th and counting down the days bt I do have a quick question. On another forum there is a lady with TNBC and she had a good response to FEC-t chemo but when she had her lumpectomy and node clearance there was still microscopic cancer left so they are giving her 3 months of extra chemo called cibroplatin (think that's right) before moving to rads. I've not been told about this and will query with my oncologist but just wondering if anyone else has had this. Love to you all Colista 💕💕

1852
Member

Re: Any triple negative survivors out there?

Hi pam I do remember you going through all problems with cysts and I really felt for you then and do now I understand about being fed up with apps no answers doesn't help I have been lucky really my Drs have been very good at referring if they haven't had answers for me . It might help if hubby with you he sees how it is affecting you day to day virtual hugs being sent xxDEN

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi Whitfiled,

not so good to hear that your GP is not helping you with this 'lady' problem. It might be an idea to request a referral to a gynocologist for further exploration.

I am not a medical person, but have done a little research - and you might wish to explore the information on these links to see whether your symptoms are similar

http://www.nhs.uk/conditions/bacterialvaginosis/Pages/Introduction.aspx

http://www.nhs.uk/conditions/vaginitis/Pages/Introduction.aspx

http://patient.info/health/vaginal-dryness-atrophic-vaginitis

and hope you can get is sorted.

Hugs

Sue xxx

Whitfield
Member

Re: Any triple negative survivors out there?

Thanks Den. Mi think I'm gonna go back to GQP in about two weeks and I may ask hubby to come with me as the ear problem is not getting better.  Also this lady part issue is causing problems.  I mention to the GP when I saw her that the odeama in that area was still not fully resolved as this happened due to the emergency surgery to the cyst there during chemo.  You probably can't recall I has an infected cysts in groin and sepsis so hospital did op then after that the area blew up like a ballon.  The hospital just wanted to get the sepsis under control so two weeks of antibotics, then DN coming to my home to pack wound as I needed second chemo.  During this time everyone was sorting out the cancer, sepsis and no one really helped with the after affects of the op.  Result now tissue still holding fluid, and now been so long expanded it will not go gown.  GP just says you need to where a pad.  This is just too much as with this it itchy like hell.  So gonna take hubby in and ask to see a specialist to the to at least get the itching down.  GP says menopause but will not give HRT.  That said I don't want HRT just want to know what's going on but am so fed up with hospitals.  Had enough.

 

I have diagnoised autoimmune decease (Hasthimottios) so is this another one?

 

Breast still holding fluid so trying to shift that.

 

no one knows the after affect of all the treatment.

 

sorry down today. 

Px

1852
Member

Re: Any triple negative survivors out there?

Thanks to everyone for best wishes

pam have you seen a dermatologist about vulva problem if not can you ask dr for referral . Must admit my vulva as been a lot drier since having chemo I went through menopause in my 40s so it can't be that . Hope you get something sorted itching is horrible. Love to all DEN

Dee1945
Member

Re: Any triple negative survivors out there?

DEN, Congratulations, so happy for you.

Dee

Whitfield
Member

Re: Any triple negative survivors out there?

Good news Den.  So glad for you.  I've got more lady part problems which are driving me made.  Just so itchy.  GP says side effects of menopause but I had that yrs ago.  This started before my cancer and stopped during g treatment but is Joe back.  GP doesn't really want to know and says mo,to HRT.  Also ear problem is back with buzzing.  I just feel so hard done by as I can't get a break from the itchyness.  Tries thrush treat,went to no avail.  What else can cause such itching.  This bearing in mind I had ladypart lymphodeama and now have this in breast and lady part.  

 

What at to do ?

 

p

1852
Member

Re: Any triple negative survivors out there?

Good luck for Friday taran . Pam hope you got to have some good days with your mum.
I had my 2yr mammogram result it was ok love to all DEN
1852
Member

Re: Any triple negative survivors out there?

Hi bekah your story about what happened when you had your takes me back to when I started nursing it's over 40yrs now I looked after a young women who had same as you unfortunately she was in a coma and never came round her baby was ok like Tarzan says it's very rare thank medicine as moved on but I never heard of another so thought it never happened now you survived that  and you will fight this as well  take care love DEN

Whitfield
Member

Re: Any triple negative survivors out there?

Marina,  good luck for Friday.  X

Marina
Member

Re: Any triple negative survivors out there?

Thanks Taran, I´ve sent my message. xx

Taran
Member

Re: Any triple negative survivors out there?

Sorry, that should say younger not young xx
Taran
Member

Re: Any triple negative survivors out there?

Hi Marina, if you search on Facebook for Young Breast Cancer Network (UK) it will take you to their public page. If you message them from that they will join you to the private group. They will ask you a bit about your diagnosis etc, just to make sure everyone added is genuine. Good luck for Friday xx
Marina
Member

Re: Any triple negative survivors out there?

Can someone let me know the facebook page pls.
Having op for clear margins on Friday.
Marina
Taran
Member

Re: Any triple negative survivors out there?

Wow Bekah, that is incredibly rare! I'm not surprised the drs were shocked. I've been a midwife 8 years and have never known anyone have one. It's something we read in the books but never really come across! You certainly like to do things in style 😉 xx
Bekah78
Member

Re: Any triple negative survivors out there?

I certainly did Taran. I had an amniotic fluid embolism. Very rare and we're both lucky to still be here. It really is scary stuff. The Drs who looked after me that night still seemed shaken by it a week later.

Thanks for the links Sue.

Big hugs Katy. Xx
bel
Member

Re: Any triple negative survivors out there?

Dee, how lovely to hear from you, and so glad your daughter is doing well. I am glad I was able to help you, and please send your daughter all the best.

 

Pam, how right you are about (once the shock etc. is over) enjoying life to the full. It's rubbish getting this illness, but if anything good can come from it, it's an appreciation that life is precious and to be lived to the full. None of us (and I don't mean us affected by BC, but everyone out there) know how long we have got. Yet - when we're young at least - we believe we have all the time in the world. Well, I did...When newly diagnosed, I remember having a chat with a friend of a friend, who was asking me all about my treatment and being quite caring, even though I didn't really know him. Imagine my shock when, just a few months later, I found out he'd died very suddenly (he was only in his 30s). I would never have believed, the night we were chatting, that he would be gone before me. And I am still going strong 14+ years later, despite the BC & this wretched BRCA1 gene! 

 

Love to all xx

 

 

Taran
Member

Re: Any triple negative survivors out there?

It's good to hear you sounding positive Bekah, I was wondering how you were getting on. Sounds like a busy time with hospital appointments, but definitely good things are moving for you. I remember feeling like I was living at the hospital in the beginning. I'm glad you joined the Facebook group too. It's a really supportive place. Think I might have said hi to you actually 😊 Sounds like you went through a lot when you had your little boy! But it's good that the area on your liver is getting smaller and it's just looking like a blood clot. Fingers crossed it keeps shrinking until it's back to normal.

Pam, I hope you enjoy the time with your mum for her birthday. This whole thing definitely makes you appreciate every time you are there for birthdays, concerts, days out. Every little thing is much more meaningful now xx
Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi Bejah78,

So glad you are feeling more positive - and long may it continue - although we all have our bad days, too. So don't hesitate to share them too, if you feel like it.

You might like to join the August chemo starters thread - oodles of advice

https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/August-2016-Starters/m-p/10333...

and perhaps look at this Tips and Tricks thread, too

https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...

Hugs,

Sue xxx

Bekah78
Member

Re: Any triple negative survivors out there?

Thanks for sharing your experiences ladies. I've joined the Facebook forum... They're so lovely too and I'm finding it somewhat addictive. Will have to be careful it doesn't take over.

I'm going in tomorrow to have the first set of lymph nodes removed. Seeing the oncology department on Tuesday, the genetics team on Friday, following Monday I'm having a heart scan and all being well I'm starting chemo a week on Tuesday. So relieved things are moving.

I felt like my consultant was hiding something from me at the prior appointment. Turns out she was. They'd seen on the ct scan I had when went through the traumatic birth of my son, a shading on my liver. They weren't sure if it was cancerous too, anyway the recent scan I had showed this has shrunk and they now think it's a blood clot, apparently I have loads of them around where my uterus was and where all the surgery was carried out. Not surprising as I was black and blue for weeks around my middle.

Feeling more positive now and trying not to focus on the what ifs but on the good things like my baby boy to keep me upbeat. Xx
Whitfield
Member

Re: Any triple negative survivors out there?

Great we all are talking about our journeys as it helps us all.  I've had a great day at a family BBQ and am staying with my mum who is 80 this year.  What I've learnt from my journey so far is once you have dealt with the shock, trauma of treatment you realise you need to live life to the full.  I'm 57 so quite a bit older than some of you ladies.  I look back at my life and realise I've been fortunate to have family and a hubby that cares.  I do believe this is an awful decease, particularly for those with young children as the worry must be compounded. Bel has inspired me and is still helping others with her story.  I'm sure there are others out there surviving that have had big tumour, node involvemens but they're probably living life.

 

I'm so happy for those new here that this site can help but saddened that you find yourselves here.  We are here for each other and I can say the fear does decrease after treatment.

 

Im sending healing vibes to you all.

 

will now spend a few days with my mum which I though in 2014 I wouldn't have.  

 

Pam x

Dee1945
Member

Re: Any triple negative survivors out there?

Hi Bel,

  It's been quite awhile since I was on. It is wonderful to see that you are still here encouraging the newbies. I will be forever grateful for your positive attitude and support while our daughter was going through her 2 bouts with TNBC, chemo, radiation and double mastectomy. This forum gave me a place to voice my concerns and you personally stregthened my attitude so I could be the support system she needed while making her journey.

  She is doing well. She still hasn't decided on constructive surgery yet. She decided she wanted to keep the focus on living her life for awhile. Then she will think about surgery again.

  Thank you again.

Dee

Taran
Member

Re: Any triple negative survivors out there?

I'm not always positive, honestly. I have bad days just like everyone else. But I make sure they are few and the positive days are many. Over thinking the whole thing won't help me and won't change what will be either. I just hope and pray that I am destined to be around for a long time yet. Try and believe in your treatment. You know that at least at the end of treatment you will be cancer free. The surgery and chemo will have done their job and that is the most we can ask for.xx
Katydaw
Member

Re: Any triple negative survivors out there?

Thank you ladies for your support. Taran you're always so positive, I really admire you. Maybe I'm just finding out I'm a natural pessimist and never realised! I think it's just the total fear that makes me think the worst xx