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Triple Negative Breast Cancer

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Member

Re: Triple Negative Breast Cancer

Carly my heart goes out to you :-(.  Don't be frightened.  My sister had it 13 years ago aged 34 with 2 young children and although it hadn't spread to lymph nodes it was pretty big.  Not sure what stage but the tumour was 3.8 triple negative and she had 2 young children to cope with, lost all her hair, husband had to take time off work to look after her and huge financial impact as well.

She is still here and right as rain!  In fact, she is better than ever!  She had to have her ovaries out as well and a mastectomy but its a small price to pay.  No one would ever know her breasts aren't real and now despite having a mutant gene that caused it she will NEVER die of breast cancer of ovarian cancer.

I have just been diagnosed myself with exactly the same as she had.  I see oncologist may 22nd as off on holiday today and will probably start chemo following week.  Toying with idea of having mastectomy at the moment.  Don't give a stuff about ovaries coming out.  

Not sure about you but for me it always helps to prepare for the worst then anything is a bonus!  If i know i can cope with the worst then i feel fine!  I was really frightened it had spread to my bones etc so i just thought what would happen if i DID die.  There isn't anything that you can do if that is going to be the case so you may as well accept it.

Treatments have come on so much since 13 years ago and when i googled the success rate as in people living for 5 years or more after STAGE 3 Triple negative cancer was 72%.  Stage 0 and 1 was 100% and can't remember what 2 was but again pretty good.

I hear much more positive stuff than negative so just try and be strong. Also, ,your tumour has shrunk lots already so that's really good!  I feel very positive for you :-). xx

Member

Re: Triple Negative Breast Cancer

Hi Carly

Just read your post. So sorry to hear what you're going through, I know it is incredibly scary. I hope by now you are feeling better and more positive...

I have 'borderline' tnbc ( HER2+ status equivocal ) so am going to  be treated with Herceptin anyway, but may also have tnbc, ( more than one type of cancer ) positive nodes too. ( diagnosed Nov 18, then lymph nodes Fen 2019 ) I am about to undergo my second round of EC.

I have been doing a lot of reading, a book strongly recommended by a friend, 'How to Starve Cancer' by Jane McLelland - a really intense and initially scary but ultimately extremely positive book about the metabolic pathways that can feed cancers, and additional things to support your chemotherapy by blocking the pathways that supply cancers,  things she did to treat her secondary cancer. She has a webiste and FB, page too. 

You might also want to check out COC ( Care Oncology Cininc ) website, in Harley St, London. I just spoke to my oncologist about taking part in their clinincal trial using 4 off-label drugs. Might be relevant for you ? 

I am 55 with 2 children, aged ( just ) 15 and 17. Worrying about cancer, and all the bad press about tnbc can be terrifying I know, but there is also plenty of positive stuff out there too....  I hope this might be of help to you. 

Chloe x 

 

Member

Re: Triple Negative Breast Cancer

Hi Littlenoddy

sorry you have found yourself on here but welcome to the forum and I am sure you will find it a great source of comfort and information as I have so far.

i was diagnosed in Jan 19 with tnbc grade 3. I know you have scans but don’t be scared as they seem to be commonplace to have them. I had an mri and ct scan. They are done quickly, I won’t say don’t be scared as I was scared of everything after diagnosis  but it’s good to have them so the oncologist has a clear starting point for treatment. 

Please don’t read the stuff all over google about tnbc, a lot it so out of date and will scare you silly.  You have arrived here so you are following a good path for information 

I started treatment on the 15th Feb, I have 6 rounds of chemo, 3 weeks apart, then surgery then possibly rads. I have had my first treatment and my second is this Friday. I am feeling absolutely fine. The surgery and rads decisions are made further into my chemo. 

What I can say is emotionally you are at a really hard time and it gets so much better once you have all the information and a treatment plan. You will have those dark thoughts which are so normal especially as we have children,  but try and distract yourself from them. Waiting for the appointments is so tough, I found surrounding myself with friends and family and talking to them about it made it easier. Watching nonsense on tv, listening to music helps to fill time. 

Best of luck with the scans, they are over quickly and it’s another step done.

Will be thinking about you and let us know how you get on 

Becksann xx

 

 

Community Champion

Re: Triple Negative Breast Cancer

Welcome Littlenoddy, but sorry to find you here

It is so scary when first diagnosed, it is really the worst time, but things do settle down when your treatment plan is on place & treatment starts.

I didn't have TN bc, but hopefully one of the others will be along shortly.

If you feel you need to talk things through, do give the helpline here a ring, the number is at the top of this page.

Sending hugs

ann x

 

 

Member

Re: Triple Negative Breast Cancer

Hello

this is my first post 

just found out yesterday triple negative spread to lymph nodes. Having a scan next week to find out if has gone to stage 4.

I’m so scared. So afraid of what is to come. I can’t think straight and so devastated for my children who will be orphans if I go.

i want to go to sleep and never wake up. 

How how do you all cope?

Shi Community Champion
Community Champion

Re: Triple Negative Breast Cancer

There are lots of tnbc survivors, a good book which helped me a lot is surviving triple negative breast cancer by Patricia prijatel. To name a few tnbc survivors, Shannon Doherty, robin Roberts, Joan lunden and Patricia prijatel, they are in USA and there are plenty more around the world. Keep hold of positive stories it really helped me through the journey to keep focused and turning it all into a positive, it’s hard to process everything that’s happening it’s such a whirl, but you are strong and beautiful and amazing and you can and will come through it 👭👭use the threads for love, support, kindness and friendship, there will be plenty of 😂🤣😂🤣🤣too which is something you don’t expect but here with so many amazing beautiful strong people you will find it. ❤️❤️💕💕✨✨✨Shi xx

Shi Community Champion
Community Champion

Re: Triple Negative Breast Cancer

Hi ladies 😘

Member

Re: Triple Negative Breast Cancer

Hi Carly, 

I'm really sorry to hear that your feeling so low. I'm also tnbc and have just had my last of 16 chemo sessions. My tumour has shrunk, but I'm waiting for a final MRI to find out by how much. Us tnbcs are not in an easy position, I know, and it's definitely not always easy to stay positive. And actually, I think that's OK. I've tried to stay positive, not least for my children (12 and 18), husband and parents, but they understand that isn't always possible. Have you been able to talk to your family openly about your feelings? That might help. Also, talk to your chemo and/or BCN - there is lots of help out there, if it all gets too much. Don't suffer in silence! And try to hold on to the good things, e.g. your tumour has already responded amazingly well, that it just fantastic! 😍 And sometimes I have also found it good to treasure small things, like spring sunshine and flowers 💐. I don't know if any of this helps, but please remember you are not alone with your worries. 😘 Gaby xx

Member

Triple Negative Breast Cancer

Hi everyone I'm really struggling  I was dx in Nov 18 with invasive ductal tnbc stage 3 and multiple lymph nodes positive..i really need some success stories because I'm adament I'm not going to be a surviver and it's really affecting my family  I'm 35 with three children ages from 3 to 16. I've had three ec chemotherapys so far and my 40mm tumar has responded and is now less than 16mm and lymph nodes have gone from 30mm to 12 but I just can't seem to be positive . Everything I hear is negative and just learnt that 4 people died from tnbc  Help please 😢😭