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

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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

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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

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

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.

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

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

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

 

 

 

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

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

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

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

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

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

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

Thank you. She’s 4 and is the love of my life xx

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

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

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