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Any triple negative survivors out there?

Taran
Member

Re: Any triple negative survivors out there?

No, this is not how I planned my maternity leave to be at all!! I feel like my baby girl will be turning 1 and I'll have lost most of the year to worry, hospital appointments, treatment and side effects!x
Katydaw
Member

Re: Any triple negative survivors out there?

It really is Taran. You must feel the same. I had such lovely plans for maternity leave as I bet you did. Xx
Taran
Member

Re: Any triple negative survivors out there?

Oh gosh yes, I remember now. I cannot imagine going through all of that while being heavily pregnant/with a new baby. No wonder it is so difficult for you. You've not have time for hormones to recover before starting chemo, or time to get your head around the diagnosis before being thrown into having a new baby to look after. It's like living a nightmare at a time that should be one of the happiest isn't it xx
Katydaw
Member

Re: Any triple negative survivors out there?

I was pregnant-33 weeks. I had my mastectomy and lymph node op at 35 weeks, was induced at 38 weeks and started chemo when he was a week old. Nightmare does not describe it xx
Taran
Member

Re: Any triple negative survivors out there?

Yes to that!! How old was your little boy when you got diagnosed hun? My little girl was 8 weeks at diagnosis. Feel like a few weeks of her life went by in a total blur, and sure I'm about to lose a few more during chemo too. But if it means I'll still be around for her and my boys as they grow up it will be worth it xx
Katydaw
Member

Re: Any triple negative survivors out there?

Aww they're such a gift, I never realised how much I would adore children before I had them. My baby boy is 5 weeks and is just adorable. Please let us all beat this and be their mummies for years and years xx
Taran
Member

Re: Any triple negative survivors out there?

I bet she is! I've got a 5 year old and 2 almost 4 year old boys, and a 3 month old daughter. Best things that could ever have happened to me xx
Katydaw
Member

Re: Any triple negative survivors out there?

Thank you. She's 4 and is the love of my life xx
Taran
Member

Re: Any triple negative survivors out there?

You will find your strength. I find some days are so much worse than others, it really does change so quickly. How old is your little girl Katiedaw? I think we are all struggling the most with worrying for our children. It might definitely be worth getting some counselling though. It certainly won't do any harm. Until then you know where we are if you want to talk.xx
Katydaw
Member

Re: Any triple negative survivors out there?

Thank you ladies. I admire your strength so much. I am just falling apart a bit. I think counselling might be an idea xx
Taran
Member

Re: Any triple negative survivors out there?

I wish there was something we could say to make it better for you Katydaw, but I know there isn't. Just believe that some days will be better than this, and you won't feel this sad all the time. It comes and takes over you and is such a horrible feeling, but I think is completely normal to feel that way and to cry and be every single emotion there is. That is fine. And when you have had those bad days, get back up and keep going with the treatment and everything else. And every day further along that path is a positive thing. Have you been referred for counselling at all? I've not had any sessions yet, but my bcn referred me because the uncertainty of the future is just so hard to cope with I get completely overwhelmed at times. It might be worth asking to be referred if you haven't been already.xx
netti37
Member

Re: Any triple negative survivors out there?

Katydaw....so sorry your so upset. So sorry your having to deal with all this too. It really is not fair. I never thought id be in this position myself. Its all a complete nightmare. I feel exactly like you do. I wake up every morning hoping its not real, but it is and I have the must horrendous pain to my gut. The reality is, for some unknown reason, we are the unlucky ones, and we now have to fight and prove just how strong we are. Its going to be very hard, but worth it in the end. That's what I keep trying to tell myself. Sending a big hug to you. Xxx
Katydaw
Member

Re: Any triple negative survivors out there?

I'm so sorry to be a downer but I'm struggling so much with this. Just cannot stop crying. Took my little girl to my nephew's birthday party yesterday and just felt so upset that all the other mums and dads were just enjoying their kids without a care in the world but our family is in the middle of a complete nightmare. Also when my little girl was looking for me I just kept thinking what if one day I'm not there. I'm just so sad. I'm so sorry to be depressing. Xx
Warcol
Member

Re: Any triple negative survivors out there?

Thanks Den, 2 weeks post T and I feel human but I have no taste and everything I do eat just leaves me straight away!!! I have appt with oncologist next wk and they've already mentioned reducing the dose, so will see what they say next week.

i have read through some of the old posts in this thread and am slightly encouraged by how many there are of us with TNBC and more surviving it. 

I will as everyone I'm sure always worry about reoccurrence but for now I need to get through this hurdle I just hate feeling so low on T!!! X. Colista

1852
Member

Re: Any triple negative survivors out there?

Hi warcol I coped reasonably well on fec but T knocked me for six are you having injection in your tummy to assist cells these can cause aches and pains I end d up only having 2rounds of t then went on to weekly paxitaxol which was a bit gentler hope you not feeling too bad now you will get through we are here if you want to rant or want any advice take care DEN
Katydaw
Member

Re: Any triple negative survivors out there?

Thanks Ann I hope so! Have looked after both baby and 4 yr old on my own today 2 days after chemo so feeling pretty shattered! I love them so much it makes my heart ache xx
AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Katy if your scans are clear try to trust that result. It means your lymph nodes have done their job and trapped the nasty cells in time. That's why they do the node clearance so it stops it in its tracks. You'll be fine hunny.xxx 

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Colista I agree with you about the T chemo. When I had my 1st dose I had like a choking bout and my hubby Trev wanted to fetch one of the chemo nurses but I said no I think I'm ok now. Looking back in hindsight though I remember feeling not at all well during that session. When I went for the next session this happened again but much worse and very scary so I was sent home and told to come back the following week and they put a antihistamine through my line first. This didn't help I am definitely allergic to it. I was told it isn't the actual drug that causes the reaction but a detergent that is mixed with it to help our body to absorb it. I had to go to Nottingham City hospital for my last 2 chemo for Abraxane as my hospital don't fund this chemo. What I'd like to stress if any of you ladies having T start to feel slightly different or a bit unwell don't be like me and shrug it off tell your chemo nurse and they quickly deal with it. I was ok having the abraxane but I ended up losing a couple of layers of toe and finger nails which are now recovering.I also had bad neuropathy in my toes which is gradually getting much better thank goodness. We are all different but we are all tough cookies and we can with help all beat this thing that is testing us to the hilt. Xxx 

Whitfield
Member

Re: Any triple negative survivors out there?

My oncologist said the same in the chemo will hut down and kill stray cells which is why we need it.  I had eight four EC and four Taxol.  After that surgery then rads.  The surgery included full node clearance as they knew nodes had cancer in them 4 out of 24 positive.  But the chemo worked its job and what they took out had no viable cells which was the best news I could have wished for. So remember this when feeling down or sick from chemo as its doing its job.  They will keep tabs on it and if th tumour is not shrinking they will change the drugs.

 

What I find hard is people say you've beaten cancer but don't realise that after treatment if you're lucky your in remission.  It's alway with us but I decided not to listen to all that and just try to enjoy each day.  My treatment ended last May and I'm still struggling both physically and mentally and this site has helped me no end.  So as you can see you will move from here to there and each day will affect you differently and it's okay to be sad, angry and just be whatever you feel.  It's a hard journey and I wish you the best one possible.

 

I so wish I could have a magic wand to take this away for you all.  Stay strong and ask as many questions as you want.

 

Pam X 

Katydaw
Member

Re: Any triple negative survivors out there?

Thanks Taran. That's how my surgeon told me to think about it but I can't help worrying about the stray cells. Hoping that the chemo and rads do mop them up. Warcol that's what gets to me most too, the fact that there is nothing for us after treatment. Makes me panic so much. Pan and Sue thanks too for your posts. Xx
Whitfield
Member

Re: Any triple negative survivors out there?

So sorry new ladies are having to join the group.  Do try to look back and you will Bev who has posted some very positive things.  

 

Most TNBC are grade 3 because of the cells looking very abnormal. But I recall my BC nurse saying to me TNBC can sometimes respond well to chemo.  

 

As as for what has given us this I really don't know.  Personally before cancer and still, I don't drink, smoke, eat red meat, mo processed meat and am within normal body weight.  I don't luckily for me have the BRAC gene so it's a mystery.

 

all we can do is eat well, try to exercise and do the treatment then we know we have done all we can.  Having this awful decease is terrible for those with young children which relates to the lady two ladies postings.  I have seen babes in arms being treated st the Royal Mardsen which is heartbreaking.  All we can do is treatment and support each other.

 

try not to GOOGLE stats as this will only scare you/us.

 

Sending love and wishing for good outcome to all.

 

Oh, if you can get name down for counselling this really helped me.

 

pamxx

 

 

 

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi Taran - and ladies,

 

So sorry that you are in such a challenging place. Some of us, who have different kinds of receptors do understand how you may feel.

 

I love the way you put it Taran - and it is so right. The wife of a business associate of mine has been diagnosed with a triple negative last week Wednesday. And I hope, in time, that I can support her, as well as him, through this.

 

Here in East Sussex, being so very rural, it is challenging to find personal support - our nearest cancer centre is 40 minutes drive away. A drive we make for treatment - but it is challenging at any other time.

 

As to diet, etc. - and I should say - this is very much a personal opinion - it is very good to eat healthily and with much consideration. Unfortunately many marketing organisations are using our vulnerability and fear to make money on the back of us. However, there is some quite sensible advice out there. It does pay to actually research any claims and thoughts, so we can all make well informed decisions as to what we eat, drink and have around us in our daily lives.

A number of thoughts have been posted on this thread - as to cosmetics, meat, dairy, etc,as well as some really interesting recipes. You might find it of interest to browse through it -  https://forum.breastcancercare.org.uk/t5/Chemotherapy/Chemotherapy-Tips-and-Tricks/m-p/1017289#U1017...

 

Just to demonstrate my thinking -  for example - we are being told that alcohol is a cancer risk, and I am aware of many ladies, who blamed their quite standard drinking for having got breast cancer.

 

Here are some researched figures - There are 32.2 million women in the UK, of which 2,576,000 will get BC according to latest statistics - of these BC diagnoses - 6% are linked (not necessarily caused!) by alcohol - i.e. 154,560.  I am by no means trying to belittle anything, but it may sometimes help to look at the figures, break them down and understand them a bit better.

 

Hugs to you all

 

Sue xxx

 

 

 

 

 

 

 

Taran
Member

Re: Any triple negative survivors out there?

Hi Katy, when I saw my surgeon post op they emphasised that with the margins being clear the disease was gone. The chemo and rads are there to "mop up" any cancer cells that had made their way around the body. So to do what they can to prevent it coming back in future. Might make you feel better to think of it like that? That the mastectomy has got rid of the actually tumour, so that has gone. Now they are getting rid of any stray cells that might cause problems in the future. It made me feel a bit better to be told it like that xx
Warcol
Member

Re: Any triple negative survivors out there?

Hi everyone
I'm 42yo and was diagnosed with TNBC in Feb! I've had 5 cycles of chemo (4 FEC and 2 T) and have 3 more T to go! Following that surgery and rads as lymph nodes infected also! I have 2 small children 2 and 5 and up until a recent stint in hospital with sepsis full time working!
Whilst on FEC I found myself very positive and able to cope most days but since starting T have more bad days than good and constantly worry about it coming back before its even gone! I also worry even if I get the all clear that I'm not going to be here in 5 years time!
I'm not sure whether the T chemo is making
Me more down or whether it's just finally hitting me what's going on.
I'm part of the Feb/March chemo threads and the ladies on there are brilliant but most are having herceptin or tamoxifen and I get angry (not with them) but with TNBC that we are just left at the end to suck it and see!! Sorry for ranting just wanted to vent xxxx Colista xx
Katydaw
Member

Re: Any triple negative survivors out there?

Hi netti and Suzanne. Thanks for your replies. Yep have had ct and bone scan which were all clear thank god although I do still worry it may have spread. I've completely changed my diet and am doing all I can. Just want it gone.
suzanne2
Member

Re: Any triple negative survivors out there?

Aww katydaw I am so sorry to hear about your diagnosis, it's a scary road, there are other women on here who have found this just after pregnancy or while pregnant. One of my nodes were large ok but that's their job Hun, have u had a CT and bone scan. I had a 20mm tumour in left breast with 5 out of 13 positive nodes, I had surgery, chemo and radiotherapy. I finished treatment last August, was diagnosed 02/2015, stay strong love xxxxxx
netti37
Member

Re: Any triple negative survivors out there?

Katy, I'm sorry to hear your story and that you are here too. I'm 37 and was DX tn grade 3 on 26 may. I'm starting chemo next week. I'm sorry I can't offer much advice to you, only support. I'm not coping too well with the situation. I've got 2 girls 11 and 8. I should listen to my own advice here and ask you to stay strong and positive. Big hugs to you xxx
Katydaw
Member

Re: Any triple negative survivors out there?

Hi everyone

I'm just reposting my original post here as it seems busier.

I was diagnosed with grade 3 tnbc at the beginning of April 2016 at the age of 36 and had a left full mastectomy on 21 April. I was 35 weeks pregnant with my little boy at that point. I also have a beautiful little girl who is 4. I was induced at 38 weeks and my baby boy is now 4.5 weeks. My pathology results were diabolical-multifocal 61mm and 50 lumps with 4/9 lymph nodes, one about 3cm. Clear margins on the mastectomy which was about the only good thing. I am so angry with myself that I had no idea about this until the tumours had got so large. I just thought my boobs were getting bigger due to pregnancy. I also stupidly never checked my boobs, just never thought it would happen to me. Anyway I started chemo on 25 May but to be honest I have totally been struggling with this since diagnosis. I cry everyday and my heart breaks when I look at my children, particularly my little girl as we are so so close and she would be devastated if anything happened to me. I figure that the baby would be too little to understand. I can't bear the thought of not seeing them grow up. I am so desperately sad and just want my old life back. I am struggling so much with the tn part knowing there is nothing to protect me afterwards (if I get that far). I have never heard of anyone with a diagnosis like mine and just feel like I have no chance.

I've had lovely replies from AnnDaw and Taran but can anyone else offer any hope?? Xx
Amanda10
Member

Re: Any triple negative survivors out there?

 
Whitfield
Member

Re: Any triple negative survivors out there?

Hello Pam,  I think the grade is how odd the cells from what they should be.  I had what is known as a total response to chemo which can happen with TNBC.  It means that when they cut it out they couldnt find any viable cells.  When you start chemo they will measure the lump and probably put in a marker so they can see if the chemo is working.  It can be changed if not.

 

Good luck and stay in touch.

 

Pam x

keydieselsgirl
Member

Re: Any triple negative survivors out there?

Thank-you for your lovely responses. That was a busy day at the hospital. Finally got a starting date for my chemo and it's Thurs 23rd. I Don't know how I feel, guess it's just numb. The scan went alright I think, I relaxed room much and the camera switched off. Don't know if that's good or bad. I am trying to keep my spirits light at the moment. I have found that I have a grade 2 tumour with l node positive so far. My tumour was measured at 4to5cm. Not sure how that works out Pam if yours was 31mm and grade. Sue I just felt as if I have got to stay above it, keep laughing and brave. Done that so far. But I do know it's real. And understand its ups and downs I am ready for the roller coaster ride. It would be lovely to keep in touch. I still have lots more pages to read on this forum. I am determined to read them all. Thank you both again. Pam xx
Whitfield
Member

Re: Any triple negative survivors out there?

Hi Pam,  Pam here 57 yrs old TNBC like you.  So sorry that you're here with us but we will try to support you.  As said there are guidelines to start treatment and its normal to have CT and bone scans before the start.  So it does seem a long wait.  I was diagnoses August 21st 2014 and first chemo 15th Sep or there abouts and panicked after my first chemo as I was unwell in hospital and my next chemo was delayed by five weeks.  I was told not to worry it doesn't grow that fast.  Just keep an eye on the wait and look and ask for target date for treatment.  There is no harm in letting the hospital know you these target dates.

 

I had chemo (8 session) first then surgery, then rads.  I found the ladies in the monthly chemo sessions very supportive but most were doing this the other way round, surgery then chemo, rads.  So you may need to pop back and forth to both threads.

 

I had a grade 3 - 31mm tumour with four nodes with cancer in them.  I'm still here nearly two years on so don't give up hope.  Keep well. Eat well, try to walk a. It and drink lots of water.  I did put a list of things to prep and do during chemo in this forum which may help.

 

Good luck and if you want PM me do as its sound my diagnosis was similar to yours  and our age similar.

 

pam X

Sue H-S
Community Champion

Re: Any triple negative survivors out there?

Hi Pam,

 

So sorry to see you here, but great to read that you are finding the forum of help and see it as positive.

 

I have just popped in from the May 9 chemo thread - and being of a similar age to you, hope you don't mind me saying Hi to you, although I have a different diagnosis to yours.

 

It must be quite challenging for you to wait, as, very understandably, you want to do everything as quickly as possible to achieve a positive outcome. There are strict guidelines, as to when treatment for specific diagnosis has to start, and looking at the dates you quoted, you it looks as if you well within them. So, no, having your initial chemo appointment today, is not a bad thing at all. And at a guess this should mean you are likely to start your treatment next week.

When you do - you might find the Chemotherapy Monthly threads of great help - there is one for June starters, and you could join that, even if your treatment commences later in the month - there will be a lot of help, advice and support to help you prepare and support you through treatment- as well have the odd laugh.

 

I really sympathize with you - it was a very scary beginning, for me, too - and this is how I describe it - 

 

"For me, when I was initialllly diagnosed, it was, as if thrown into the ocean with no lifebelt in side - nothing to hold onto - everything had changed - nothing as it was - no choice but to swim to survive - becoming exhausted with the swimming and having to learn to float and let myself drift. No control of what was going to happen to me. Every result and treatment is a bit of floating wood I hang onto. Some wood is a bit wrotten,some other bits are more solid. Collecting - first one, then two, then three planks, etc. When I had them all - my raft was built and I took one to start paddling. Starting to take control - starting to feel better - working towards finding land again. I can see it now - and am paddling hard to get there."  

 

Please do not hesitate to send me a Private Message, when you have enabled it - should you prefer to communicate on some issues 'off forum' - however the Forums are a great place to be, as you get so much feed back from other ladies sharing their experiences.

 

Wishing you all the best and hoping all goes well for you today.

 

Sue xxx

 

 

 

 

 

 

keydieselsgirl
Member

Re: Any triple negative survivors out there?

hi everyone, i was dx with tnbc on the 27th may, and still waiting to start my chemo, i am seeing the chemo nurse this morning,  this afternoon i go for a muga scan, it seems such a long time to be waiting, feeling anxious and scared, i am 58 hope this is not a bad thing. 

 I have spent a good few hours reading this forum, all of it so positive, i look forward to talking to you, and listening to your advice. 

Pam. 

Whitfield
Member

Re: Any triple negative survivors out there?

Typo ..... 31 mm.   I wish 3 mm.

 

STILL HERE.

Whitfield
Member

Re: Any triple negative survivors out there?

Me too but we must live for today.  You're still in shock and early days.  Maybe some more counselling. Bi try and keep busy.

 

call the helpline here on this site for a chat if you can.

 

my cancer was 3mm, grade 3 and nodes involved do preset bad but look at Bev 14 yrs in remission on and off.  But still here.

 

sending hugs.PAM XX

suzanne2
Member

Re: Any triple negative survivors out there?

Well I thought I was doing ok but I'm absolutely terrified tonight and not in a good place, I'm so scared of it coming back pam really scared xx
Whitfield
Member

Re: Any triple negative survivors out there?

Still here Suzanne.  Have some lasting affects from treatment and 2nd mamogramme this August.  How are you doing?

 

px

suzanne2
Member

Re: Any triple negative survivors out there?

How are u doing pam xxxxx
Whitfield
Member

Re: Any triple negative survivors out there?

Sending big love 💗

suzanne2
Member

Re: Any triple negative survivors out there?

Yes my treatment finished end of August and I went back to work in December phased return, if I'm honest work has been my saviour although there's no way I could of worked during treatment, I had 11 months off. I'm 46 now was diagnosed just after turning 45. I'm feeling okish but worry about every ache and pain and terrified of reoccurrence, but as u said one day at a time xxxxxxxxxxx
netti37
Member

Re: Any triple negative survivors out there?

How old are you Suzanne, if you don't me asking? I work, but not been back since dx. Although I want to go back, just for a bit of normality. I work shifts and my team are on nights so cant face nights at the moment. my onc advised me not to go back until at least after my 1st chemo to see how I feel. who knows? has all your treatment finished now then. x how are you feeling. x
suzanne2
Member

Re: Any triple negative survivors out there?

Yes I had lumpectomy first, I don't think it matters how they do it, as long as they do. Do u work love xxxx
netti37
Member

Re: Any triple negative survivors out there?

You had lumptecnomy first didn't you?
suzanne2
Member

Re: Any triple negative survivors out there?

Absolutely xxx
netti37
Member

Re: Any triple negative survivors out there?

Yes chemo first. Surgery will remove nodes, but not sure about mx yet. But I will do anything they recommend just so I can beat this thing. x
suzanne2
Member

Re: Any triple negative survivors out there?

I am from South Wales, your not too far away, not that my geography is much good mind. I'm not too bad I'm back at work now but still have this constant worry which makes me very anxious and scared. Are u having chemo before surgery xxxx
netti37
Member

Re: Any triple negative survivors out there?

Suzanne hello. I am from the midlands. How about you. Hope you are doing well. xx
suzanne2
Member

Re: Any triple negative survivors out there?

Hi netti, where are u from xxx
netti37
Member

Re: Any triple negative survivors out there?

Hi Taran, hope you had a nice weekend away. Having a few days away with girls really helped take my mind off things. Ive not told my children yet, just cant do it. I will take each days as it comes and see how I feel after first chemo. I don't want to break their world and scare them. Hope your appointment goes ok this morning. xx