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Triple Negative and 4 years on....

31 REPLIES 31
FiFi2020
Member

Re: Triple Negative and 4 years on....

Hello All

I found this thread so reassuring when I first was starting chemo back in Nov 2020. One year on and I just wanted to hopefully reassure others too about to start their treatment.
I was diagnosed Oct 2020 at 39yrs - triple negative, right breast, 3mm lump, caught early so fortunately hadn’t spread to nodes. I then found out I was BRCA 1.

I was on EC initially and then switched to carboplatin/paclitaxel. EC for me was much harder to deal with than carbo/pac so for anyone worrying about switching after Christmas I hope you will also find it to be much much easier. Other than chemo mouth and low energy, I actually had very little side effects compared to EC.

I finished chemo early April and had my double mastectomy mid May (with immediate recon) and was told there was no evidence of cancer around late May. Fast forward from June until now, my life really is much more “normal”, now - back to parenting, working, socialising etc and it’s hard to comprehend all that has happened this past year. I still have to have my ovaries/Fallopian tubes removed as a preventative measure but my surgeon has advised me to wait another year or so as I’m only just 40.

I cold capped and am glad I persevered with it because despite losing 70% of my hair I still managed to keep some length so it now looks relatively long.

If anyone has any questions, please let me know.

You’re all amazing & stronger than you know. Keep going and we’re all here for you x

CT2021
Member

Re: Triple Negative and 4 years on....

@Teagold thank you so much for posting! I have a large TN tumour so seeing your thread cheered me up. I have just finished 3 EC and start weekly pax and 3 weekly carb next week. Want this over but hoping will speed up when on weekly treatment. I am really hoping for a very good response to chemo. Xx

Jampot79
Member

Re: Triple Negative and 4 years on....

Hi @Teagold 

Amazing news... So pleased for you. 

My wife had her last chemo yesterday. She is doing amazing. So proud of her. She was so pleased to take the cold cap off! She now has a few weeks before surgery. The lump has pretty much disappeared by touch. So fingers crossed the chemo has done its job. Like your nurses, none of them mention or focus on tnbc, they just get on with treatment. 

So pleased you are doing ok. I can completely understand all the emotions etc. Be positive and enjoy everything! 

Teagold
Member

Re: Triple Negative and 4 years on....

Hi everyone,

just came back to this post because I remember how much it helped me earlier this year. I just finished my radiotherapy treatment last week - I honestly can’t believe that I got through seven months of treatment: 16 chemos, a bilateral mastectomy and 15 zaps of radiotherapy! I had a complete response to chemo which feels to me like a complete miracle as I started with a 7cm tumour and it was picked up also in one lymph node. The doctors and nurses who have looked after me have been amazing and what’s been especially brilliant is that none of them have been dramatic over the TNBC aspect - for them, it’s all in a day’s work to treat it and I’ve found that very calming and helpful. I’m loving my new implants and my hair is growing back, and just starting to look a bit curly. I’m tired and trying to get my energy back, feel like the emotion and shock around my diagnosis (in Feb) is really just starting to come out now as throughout treatment I had my head down and just focused on taking each day at a time. Not sure what happens next - I guess now I just have to do everything I can to stay well!! Anyway just wanted to send some major hugs out to everyone on this tnbc thread. @Jampot79 I hope your wife is doing ok?

Tg xxx 

Jampot79
Member

Re: Triple Negative and 4 years on....

Hello everyone... Hoping you are all well.. 🤞🙂

Shi
Community Champion
Community Champion

Re: Triple Negative and 4 years on....

Not stool coloured dots 🤣🤣 just sticky coloured dots 💕💕Shi xx

Shi
Community Champion
Community Champion

Re: Triple Negative and 4 years on....

Hi teagold, for drains post op get a dressing gown with big pockets so you can put bottles in pockets, I had therapeutic mammoplasty so different op to you and my drain was removed 2 days after surgery, not sure how long they can remain in post double mastectomy but I am sure others will pop on and advise their experience. Post op it is important to do your exercises to ensure full range of movement returns. For me personally I did them little and often and gently stretched a little further each day and stool coloured dots on the door frame so I could see my reach improving helped to see daily progress. No heavy lifting or hoovering or anything while recovering from surgery, you need to let everything knit back together gently ❤️ Hope this helps a bit 💕💕Shi xx

Teagold
Member

Re: Triple Negative and 4 years on....

Hi everyone, hope ok to jump into this thread. I was diagnosed with tnbc in Feb this year, currently going through chemo (two more to go out of a total of 16) and now have to make decisions about surgery. I’ve tested positive for PALB2 mutation so seems like best option is a double mastectomy. 

@Becsann I’ve been quite anxious about how manageable normal life will be after double surgery with all the drains etc, also just simple things like bathing/showering, putting on the kettle, cooking etc. If the surgery is this summer I’ll have my husband (a teacher) and kids at home so plenty of extra pairs of hands - but anxious about being so dependent on them. Any top tips or timescales you can share would be amazing.

I’m seeing a plastic surgeon this week to get a view on reconstruction but I’m leaning towards implants not least as I still have to have radiotherapy.

Can I also just say a massive thanks to all the ladies on this thread who have posted reassuring comments about tnbc. I’ve purposefully stayed away from google (except for a couple of dark moments in the early days) and just tried to focus on treatment step by step. I want to believe I can get through this and watch my kids grow up and your posts have given me hope that this really is possible.

Tg xxx 

Becsann
Member

Re: Triple Negative and 4 years on....

Hi Gracemak, just wanted to say hi and send a virtual hug to you and all the lovely people on here. I went through similar in 2019, tnbc, brca 1 positive, chemo, double mastectomy with immediate implant recon and rads. If you want to ask anything please ask away. Happy to tell you I am doing really well and really pleased with how everything looks.  
The recovery isn’t too bad, drains are a bit pesky but they aren’t in very long and they didn’t hurt. Just lots of rest and do the exercises 🙂

I just had my ovaries removed a few weeks ago as a prophylactic surgery.  That was a quick procedure and feeling almost back to normal after only a few weeks.

It’s a journey and not a wanted one but take each day at a time and be kind to yourself xx

Gracemak
Member

Re: Triple Negative and 4 years on....

Hi @ Tara

Really appreciate you taking the time to clarify for me.. It’s been a tough journey so far.. 

I made a decision to have a double mastectomy due to testing positive for the BRCA 1 gene mutation. Will be getting immediate recon with implants.

Thanks again and I pray we keep winning! 

Michelle21
Member

Re: Triple Negative and 4 years on....

Hi Bumblebee

thanks for posting how well you are doing 8 years on, it is lovely to have hope. 
I’m currently going through chemo, still got surgery and rads to go and hoping for good results. I also have a couple of nodes involved which is also scary. 
This is my second BC, I had HER2+ in the opposite side in 2018 which is making it physically and mentally harder, but seeing messages like yours do help, so thanks xx

bumblebee63
Member

Re: Triple Negative and 4 years on....

Very rarely come on here but like to pop on occasionally for a bit of reassurance! Just wanted to say I was TN too in 2013 and now 8 years on and doing fine. I’ve had other issues, spinal fusion and hip replaced but I can cope with that! I was 49 when diagnosed, had lumpectomy and auxiliary clearance as it had spread to 2 nodes. Breast is still very hard and lumpy and I hate the feel of it, but at least it’s still a boob! Not had a mammogram for 3 years since the 5 yr all clear so admit Im worried in case something is in there and been growing for 3 years, I wish they would continue with yearly scans as it’s a long gap. Good luck to you all and stay positive. Xx

ttyler
Community Champion

Re: Triple Negative and 4 years on....

Hello Gracemak and everyone else,

My name is Tara and like you I was diagnosed with triple negative breast cancer in March last year. It was stage 1 grade 3, however was in my right breast.

 

 Due to being 2 days before lockdown when I was diagnosed I had surgery first on the 9th April. This was a therapeutic mammoplasty, which is removal of the tumour and margins and in my case an uplift as I was previously an F cup. I also had 2 lymph nodes removed, the sentinel node and the next one along, which were fortunately both clear if cancer.
 
 From what I know and please note I am not a doctor a WLE is  removal of the tumour and margins around it to achieve a cancer free breast without full removal, such as in the case of a mastectomy. At first I was all for a mastectomy and was quite shocked when my surgeon was edging me towards the therapeutic mammoplasty, but are now more than happy with my treatment and I even got  no evidence of malignancy in my first mammogram (12 months) since diagnosis at the beginning of this month. It is like I have the boob of a 21 year old in a 37 year olds body 😂 this is great for me as I have only ever been a size 10 with big massive saggy boobies, my new breast matches my body much better, so I love it. It will be even better in 6 months time when I get my uplift to the other side. I have a chicken fillet ( prosthetic breast) for now to even me out!

 

 I hope the information I have given helps you decide if this procedure is right for you. The way I look at it is if the cancer ever comes back there is still tissue there for them to go at, rather than having the mastectomy straight off and the cancer still having possible recurrence.

 

 If you would like more information you can always contact the nurses on this site using the telephone number provided. They are very good at giving advice and reassuring us.

 

 Well done on your journey so far, I feel you are through the hardest part, it’s time to breath and build yourself back up now!

 

 Lots of love ❤️ Tara xxxx

 

 

Gracemak
Member

Re: Triple Negative and 4 years on....

Hi Karla 

Thanks for sharing your story. This has added a great boost to my journey, thanks so much.

Yours was the first post I read upon signing in to the forum to look for some encouragement after so long.

In so many ways, similar to you.  I was diagnosed at 37 last November, TNBC grade 3 Left breast, no lymph nodes involved.

I completed my chemotheraphy treatment successfully and currently at crossroads about my surgery options.

If you ever get to read this, can you tell me what's WLE? 

 

 

 

Michelle21
Member

Re: Triple Negative and 4 years on....

I’ve just found this post, thank you to everyone who has posted here to say they have recovered from TNBC. I have been feeling so low since my diagnosis and fining out yesterday that I was TN added to my desperate state. 
I had HER2+ in my right breast in 2018, chemo, herceptin, surgery, rads. I was just starting to feel maybe cancer was behind me when I got my new diagnosis of TN in my left breast. 
I just want to get on with Chemo now, hoping to start next week. 
Thanks again for the positivity. 
xx

FiFi2020
Member

Re: Triple Negative and 4 years on....

Wishing you luck for tomorrow!x

jomich50
Member

Re: Triple Negative and 4 years on....

I start chemo for TNBC tomorrow first one..

C/Taxol and then EC then MX (multi focal and some auxillary involvement) but glad in a way to get on with it and start the journey rather than the waiting for tests, results, scans etc.

Fifa I am trying cold cap tomorrow will see how I go as it really adds to time in hospital.

x

Angelface45
Member

Re: Triple Negative and 4 years on....

Hi,

I'm so sorry you've been diagnosed with this, but you've come to the right place to help you along the way, there's lot of people with helpful advise and information.

I didn't use the cold cap, but i really wish i had done! At the time i was  thinking i just want to get the chemo over with, and couldn't be bothered with the extra hour, i regret that now. I've since read lots of reviews,  positive and negative, but i think its definitely worth a try.

Good luck with your treatment and keep us updated 🥰 xx

LouJP
Member

Re: Triple Negative and 4 years on....

Hi

I came across this thread tonight and feel I want to contribute.

I had a TNBC 3cm and lymph node 15mm diagnosis on 3 jan this year and here I am on 14 nov after chemo, lumpectomy with full lymph removal and radiotherapy.

Yes chemo was tough - EC bearable but T horrid with a blood clot from picc line along the way but chemo got the tumour, surgery the footprint and radiotherapy just to make sure.

I do have lymphodema so my new clothing is compression glove and sleeve and am proud to show my pixie look grey haircut.

But thx to the NHS, friends and family I got through it despite covid, lockdown and all sorts of emotions.

This forum is amazing and so are BCN.

I hope i will be telling the same tale for many years to come.

xx

FiFi2020
Member

Re: Triple Negative and 4 years on....

Hello - I just wanted to see how you’ve been getting on with your first round of chemo? Hope you’re feeling well and not too shattered. I’m due to start this Wednesday so a few weeks behind you.

I too have two kiddies and just don’t know what I will be able/unable to do these next few months. I guess you just have to take each day and week as it comes.

Anyway, hope you’re doing ok x

FiFi2020
Member

Re: Triple Negative and 4 years on....

These posts are really reassuring to read, thank you ladies.

I’m 39 and have two little ones under 5 and was diagnosed late October with triple negative breast cancer - I’m due to start chemo this Wednesday. It’s so good to hear from people a few years down the line and know that you’re doing well and healthy.

Did anyone use a cold cap and have success? I’m going to give it a try and could do with some tips!
x

whiters14
Member

Re: Triple Negative and 4 years on....

Thank you both for posting this. It’s nice to hear some positivity.

Angelface45
Member

Re: Triple Negative and 4 years on....

Hi everyone,

Thought I'd let you know, I am also just over four years on from a TNBC multifocal diagnosis, and am doing really well. I'm obviously aware about the chance of reoccurrence, which apparently gets less the further on you go with this type of cancer, but it always stays in the back of your mind, you have to learn to live with it. I can remember when i was first diagnosed, i would search for positive posts to help me through and give me hope, i googled, as we do, and was very disheartened by most of the information. There is hope after this diagnosis and there are lots of us doing really well, its just people don't always come back and write about it, they are happily living their lives 🥰.  xxx

 

Take care 

 

Elorac66
Member

Re: Triple Negative and 4 years on....

Hi

Just read Karla’s post and would like to add that I am now 3 years clear after being diagnosed with TNBC - got my latest mammogram results today. 

Stay strong and positive even though at times it is so very hard to do so 

Big hugs to all 🤗

Elorac

 

jomich50
Member

Re: Triple Negative and 4 years on....

Me too feel so scared when read about Triple negative too

 

also have two boys xx

whiters14
Member

Re: Triple Negative and 4 years on....

Thank you for posting this. I am having a real wobble today about my triple negative probably due to the start of my chemo being on Monday and worrying about my boys! I am usually a really positive person. This has helped to lift my spirits x

ttyler
Community Champion

Re: Triple Negative and 4 years on....

Hi KLF007,

Thank you so much for sharing your success story. It has definitely given me some peace of mind and inspiration!

TNBC is such a scary diagnosis. It is nice to know that it can be treated and people can go to live their lives once again. I have just finished my last round of chemo and are moving onto radiotherapy soon. In my mind the cancer is all gone now, but as you say there are days the fear returns. It is good to know they these day’s  of thoughts happen less often than forgetting  you have had cancer. It shows you are able to get on with and live your life once again. You should be very proud. 

 Hope I am able to follow the same mindset. I know I am lucky to be treated and appreciated the medical intervention I have had. I will enjoy my life more and live for every day!

 Have a lovely day

Love, Tara xxx

Susie B
Member

Re: Triple Negative and 4 years on....

Hi KLF007

Thank you for taking the trouble to to share your positive news. I was diagnosed with bc on 7th Dec 2018, two days after my 62nd birthday. The biopsy did not determine whether I was TNBC or HER2 positive so I had to wait until I had my lumpectomy and full ANC clearance in June 2019 for a confirmed result which was TNBC. I had a complete meltdown in January this year, convinced that the cancer would return next year. I had counselling for sevearal weeks during April and May, by phone, which helped enormously and put everything into perspective. Hearing from people like yourself gives me hope for the future. 

I am actually with the February 19 chemo starters group and since September last year we have kept in daily contact via Facebook Messenger so between our large group there is plenty of support. One of the other ladies is also TNBC was diagnosed at the age of 39 so I will pass your message onto her.

Thank you once again for posting. Take care.

Susie B xx

 

Shi
Community Champion
Community Champion

Re: Triple Negative and 4 years on....

❤️Karla ❤️ wonderful news for you and gives tnbcs hope and reassurance that tnbc is treatable and survivable 👍thanks for sharing your fantastic news with everyone on here and everyone who is tnbc who has finished treatment or tnbc’s newly diagnosed looking for some hope and inspiration ❤️😘 💕💕Shi xx

Evie-S
Community Champion

Re: Triple Negative and 4 years on....

Hi Karla - that was such a positive message to read, thank you for taking the time to come back on here. By its very nature people usually post on here if they have questions or worries, and so it’s always really good to read a post like yours.

Hugs and best wishes to you

Evie xx

ZoeK_BCN
Community Manager

Re: Triple Negative and 4 years on....

Hi KLF007,

Thank you for your post and for sharing your experience.

I am sorry you haven't had any response yet. I am hoping that my response will help our members to see your post and share their experience.

Sending you our warmest wishes,

Zoe

KLF007
Member

Triple Negative and 4 years on....

Hi All,

I don’t think I’ve posted on here since 2017 but I’ve just passed my 4 year TNBC cancerversary and wanted to post something today, to give something positive back to anyone who might need it right now....

I was diagnosed in Sept 2016 at 37 years old with a grade 3, 2.5cm TN tumour in my left breast. Negative lymph nodes. I had scans galore, 6 rounds of FEC-T, followed by a WLE and then radiotherapy. I had a pathological complete response to Chemo which was amazing. 

4 years on now....life is good. Sometimes I forget that I had Cancer and sometimes ( not often ) it all comes back. 

Happy to speak to anyone who needs it right now. Covid must really be causing havoc right now.

Hugs,

Karla x