TNBC- terrified of spread

[Sekhahdjcd]

Hi all, wondered if anyone was currently going through/has gone through treatment for yriple negative breast cancer?

Im 38 with two young kids and start chemo tomorrow. Have about a 5cm tumour plus a couple of lymph nodes involved. Had a CT which was clear but that was about 4 weeks ago and am terrified its spread in that time. Terrified in general to be honest. Can anyone talk some calm and perspective into me? Thanks

hello, I’ve posted on a few of these boards. I am literally - you - but almost 12 months ahead.

triple negative breast cancer, finished my chemo in May. Just had a double mastectomy with recon and discharged from the hospital a week ago. I also have had my lymph nodes removed.

i also have 2 under 4.

chemo is awful but manageable. The last set of chemo, EC, is the absolute pits. And surgery is really bloody difficult recovery wise with two very young kids. What I will say is with help it’s manageable. I couldn’t do any of this without family and friends helping. But I’m out the other side, just waiting to heal then have radio.

i am assuming you will have all of this since your TNBC as this is the general set route. Please feel free to ask any questions. You can do this mama! Our body is amazing.

are you also having genetic testing? I recommend you do.

Oh and in terms of talking calm into you. The response to my treatment has been bloody amazing. Totally removed the cancer from the breast. Still shown in lymph nodes but not sure what they could see from a scan so it’s being biopsied. BUT the treatment, along with the immunotherapy and everything else they hit you with, there’s light at the end of the tunnel. There is, trust me.

Thank you so much for your response and congratulations on getting through the year! Thats incredible that you had such a good response to treatment.

Its good to know im not alone. It's feels so scary having this 'aggressive' cancer and just imagining it becoming incurable. It doesnt help that a lot of people (myself included before now) are quite blase about breast cancer now and keep telling me I'll be fine and not to worry. I know the prognosis is lot better than it used to be, even for TNBC, but its still much scarier than not having cancer!

Do you have to do immunotherapy after radiotherapy or are you done after that?

So;
chemo and immuno
surgery
radiation
immununotherapy

thats the shopping list order 😃

it’s petrifying. Very scary. I really wanted to freeze my eggs as well but they told me they wouldn’t recommend me waiting but obviously, you have to make these decisions for yourself they can’t force you to do anything.

i was also terrified of WAITING. Just the time waiting to get the chemo started, I was strangely looking forward to every chemo session as it made me feel I was getting better. It really is a bloody rollercoaster. Are you doing a cold cap? I would recommend you take some headphones and watch something, or take a kindle. Good luck I hope tomorrow goes OK as can be. You aren’t alone.

@Sekhahdjcd good luck tomorrow. I also begin the first of six rounds 3 weeks apart tomorrow xx

The waiting is just the worst isnt it! I was first diagnosed at the beginning of June but it feels like a lifetime has passed since then. And like your boob is a ticking time bomb.

Im on the same regime as you, its chunky isnt it! I was expecting them to say they could give me a lumpectomy, maybe a bit of radio and on my way...!

Ah good luck, hope it all goes ok.

It is, but it’s there because it warrants a good reaction. Are you being genetically tested? Have you thought about your surgery? Or is that all abit too early?

Hope today goes as OK as you can expect. You will be in good hands.

My sister was in the same position as you OP but was aged 49 when diagnosed. She'll be 61 in a couple of months!! Try not to fear the worst.

Hi OP (and hi Bangers @Bangersndmash)
so sorry to hear your diagnosis 💕
It’s going to be grueling there’s no getting around it , they’ll be throwing everything at you because of your age , it’s a year out of your life more or less .
Being young does help ,I had my second lot of chemo at 50 and it was harder than at 35. ( long story three BCs over 25 years.. from young mum to now nearly 60 and a nana, had chemo and diff treatments but normal life in between, my BCs were all hormonal ,those hormonal buggars have a tendance to come back)

So so sorry you’re going through this ,I remember the absolute terror the first time I had it and it’s just awful. People who haven’t been down this road don’t really understand ,BC can go from being not much to a whole shed load of treatment and worry but it is absolutely true that on going research has improved outcomes no end , so do take heart x
Sending you big hugs and a warm handhold and @Bangersndmash I’m so so glad you’re almost back to ‘normal’ life xx

Good luck OP, I’m 12 months ahead of you. 37 when diagnosed, doing the last stint of immunotherapy now. PC/EC, surgery, radio and now this immuno until October. I don’t have children so I can only imagine the added stress that brings but my body has responded well to this treatment and so hopefully for us all here it will just be a blip in our lives. I will say for me it hasn’t all been terrible, I strangely finally met someone and fell in love mid chemo! It’s so hard at the beginning but it is true when the nurses say finding some joy in little things can help day to day. It can be so isolating and scary but you are not alone. Big hugs xx

Hey lovely. This is me. Diagnosed march, started treatment in April. I had a 3cm tumour. At my midway scan it wasnt measurable. I have weekly paclitaxel and every third week is paclitaxel, carboplatin and immunotherapy. This was for 12 weeks. Then ec (which im about to start) 4 times, 3 weeks apart. Then surgery, then radiotherapy. Im not sure if i have immunotherapy after. Theres 3 other ladies eith the same cancer on my chemo ward, both had to stop immunotherapy due to reactions but theyre doing well and have had conplete responses prior to surgery!! I am early 30s. The fear of spread and return is horrendous but one day at a time. Dont cross that bridge unless you have to I also have young kids and its all been manageable and fine so far. Ive heard ec is rough going but am telling myself it works thats why

I didn’t have TNBC but did have an aggressive breast tumour. I was also terrified of spread between diagnosis and surgery. My cancer did not change in size at all between diagnosis early Dec and surgery end Jan. Wishing you all the best, it’s a horrible place to be.

TNBC is a different beast, I have very ordinary breast cancer and I realise many people don’t know the difference so can be a bit dismissive. I used to think to myself if you have to get cancer breast cancer is the best one. Even with triple negative the treatments are moving so fast and survival rates improving significantly really quickly. It’s 4 years since I was treated and immunotherapy wasn’t really mentioned even 4 years ago.
I joined some Facebook groups, loads of people had really handy tips for chemo, don’t forget your lip balm, if you want to cold cap do this or that. Lots of reassurance and good advice. Even if those type of groups aren’t your thing you get some really useful, recent tips.
Good Luck❤️

Thank you all for your messages, it's so kind of you and heartening to hear that im not alone in this. Ive started chemo now, so, although im feeling a bit ropey, its good to feel like the cancer is being blitzed and that progress is being made.
@Hopefulblogger that is fabulous, like a richard curtis movie! Wishing you lots of happiness in the years ahead.
Good luck to everyone on this journey- who knew there were so many of us!.

Also, meant to say my treatment approach has only been the case since 2019!! I was told 10 years ago outcome wouldnt have been great but as tnbc is so hard to treat snd other bc had good treatments already, all bc money went into researching it and now theres good outcomes.

I was where you are now 16 years ago. Terrified.

I had all the recommended treatment at the time, including genetic testing, which identified that I had a variant of the BRCA 1 gene.

I had:
lumpectomy
Chemo
Radio
Hysterectomy (due to the BRCA1)
Reduction of non cancer boob to match size a bit
Double mastectomy & recon (one tram, one diep)
Later had liposuction and revising of mastectomy scars

I also asked to be referred to Guys in London, who at the time had the UK's expert in TNBC, who OK'd all the treatment I'd had.

Originally diagnosed in 2010 and I'm still here. Cancer is always in the back of my mind, but I'm not terrified on a daily basis. Due to the mastectomy & hysterectomy, I have no annual checks. BUT do get referred if I have any concerns. I'm lucky with my GP.

@ClawsandEffect crickey that sounds like a big shopping list. I’m just at the post double masc with recon, waiting for radio.

It’s abit early for me but thinking I might try and revise my recon at some point, one is considerably smaller than the other. The small one needs radio on it so going to wait and see what happens after, as they said that can shrink things too.

Did you have the tram and deip at the same time? Lipo sounds nice how do I book that in? 🤣🫣 they do so many wonderful things, I’m going to have nipples just can’t decide on tattoo and bud or just tattoo as don’t want to look permanently cold.

Also I can’t believe how many positive stories there on this thread it’s lovely, I also had a complete response from the treatment so it sounds exactly like they know what they’re doing!

@Bangersndmash. One step at a time. The nurse that was with me when they saw the tumour under ultrasound told me to just think about the next step each time. I took that advice and it worked. Too much all at once. But one step is doable.

Yes, tram/diep at the same time. 13 hour surgery. I went to theatre at 9 and woke up at 10 and thought they'd not done the surgery, but of course I went down at 9am and woke up at 10am. It was fine. No difference in the experience of long/short surgery for the person that's asleep!

The lipo fat was used to fill in a dent in my boob caused by the lump of recon muscle. It looked great for a while but reabsorbed.

The best way to deal with it all is to just make it your new normal. Not to hanker over what was. And once it's over use it as the impetus for something better. I went off and worked in several different countries. Something I'd always wanted to do. Cancer gave me the drive to do it.

Diagnosed Oct-23 and finished all my treatments Nov-24. Chemo - T/C (not too bad once they'd sorted out my dilution) then A/C (knocked me out for 3 days on the sofa each time), immuno, single mastectomy with immediate DIEP flap reconstruction. No radio.

Take each day / treatment as it comes - I found I was fine for a few days after each chemo then exhausted for a few once the steroids wore off. Invest in a tablet & some good streaming services - some days my chemo took 6 hours (including the cold caping before & after which meant I kept all my hair for the T/C and about 60% for the A/C). Don't rush things or yourself. Ask questions if you don't understand anything.

I also found Liz O'Riordan's podcast very helpful.

It's been almost 2 years since my last immuno and life (esp with kids) goes on - in fact the diagnosis & the time I had of work made me revaluate how I was spending my time. So since then I've changed jobs & been away on a big holiday.

Good luck - once treatment starts you're in good hands

I had TNBC - it is tough, I had a year of treatment in all and it nearly broke me at times but still here and cancer free. I lost all my hair but it grew back pretty quickly. I do have permanent neuropathy from the chemo but that’s a relatively small price to pay.
By the time I had surgery my tumour had almost completely disappeared. The treatments are much more effective these days.
Good luck