TNBC + Cancer in the Lymph Nodes

Think it depends.

they’re doing chemo first with me. They biopsied me and found it was in the lymphs. They then did the MRI and CT and found it was in lots of them, including a lymph in my collar bone. They’ve told me that even if the chemo really shrinks them back, they’ll still do total clearance of my left armpit.

It is agonising waiting for info! Are they intending to MRI you?

xx

Thanks Luce007,

Have you started your chemo yet?  They haven't mentioned doing an MRI with me yet just the CT scan but will ask about the MRI next week + see what they say.  I'll keep you posted.

The waiting is the absolute worst!

Have a lovely weekend.

Px

Had the herceptin treatment on Thursday and the chemo yesterday. Apparently, first time around they always do it over two days in case the drugs interact. Thursday was a long day (10 hours) but yesterday was only 3.5. Normally, when they do both together it will be about 4.5 hours.

Wishing you the very best of luck- do keep me updated and yes, the weeks and days leading up to the start were far worse than the treatment! Actually, they give you steroids to counter the side effects and I’ve been somewhat ‘buzzing’ with them. Came home on Thursday and got the Christmas boxes out of the loft!! 

xx

Gosh!  10 hours - don't like the sound of that.  You are a trooper!  I have no idea how long everything is going to take in terms of session etc as I had opted for the op first before I knew it had spread so I don't know if that alters things!

Great that the steroids have helped + you are getting all Chritmassy :)  We are getting our tree tomorrow which I hope will be a distraction.  

I am getting my long hair cut in a few hours in preparation for losing it - thought it would help my 5 year-old get used to Mummy looking different.  Can I ask....did you use the cold cap?

Any tips on how to stay positive?  I can't stop crying + my stomach is in knots all the time.  Am just so scared that it is TNBC + that it is in the nodes as by all accounts it is one of the worst cancers to have

Pxxx

So I’ve only had one dose so far. I’ve elected not to go with the cold cap. They told me I could... but that hair loss was likely. I have long hair and am dreading losing it but am shopping for wigs and it’s good hat weather, at least!

The chemo itself was less awful than the wait. Once you’re there and it’s actually doing its thing I felt much calmer- you have that feeling that stuff is getting DONE! They have given me a daily injection of something called zarzio to help my bone marrow produce more cells- that’s the least fun part so far! In hospital you will feel safe and cared for- just take lots of things to entertain yourself with (books, crossword books etc) as you will be there a whiiiile!

So far, there hasn’t been a day that I’ve not cried so I wouldn’t be too hard on yourself. My sister’s sister-in-law has TNBC & is 4 years in... so try to hold onto the fact that even the ‘worst’ ones have great treatment options It’s definitely so hard. The uncertainty is the worst and I guess all of us who are at the more recent end of diagnosis will be struggling to think of anything other than ‘it’. Others tell me that life does level out (not the old normal, sadly) and I look forward to the day where cancer doesn’t dominate my every thought!

I have to have the chemo first because of it spreading... and then eventual mastectomy to come. And all the while not knowing if it will work. That’s what is so hard for all of us!

Just know that you’re not alone and that knowing what you are facing is better than not. The treatment is uncertain but it is so much better than the alternative, I guess!

Take care &’stay in touch xx

Hi Luce,

Like you, I also have long hair - to my boobs ironically but I opted to have it cut off on Saturday into a lob so now it rests on my collar bone. I'm not looking forward to it falling out either + figured if it was shorter, it may be more bearable + at least it was something that I could control.  I am going to try the cold cap - I've heard from others that it doesn't prevent your hair falling out but really helps with regrowth with lots of ladies saying that by round 4 of chemo, their hair had stopped falling out + was growing back  If it is totally unbearable, I will sack it off.  It is the best weather for hats + my sister made me laugh, saying that if I have to wear a head turban, may as well make it Gucci!

Yes, I am hoping that once treatment starts, I will start to feel a bit better + like you said, stuff will be being getting DONE.  A start to a hopeful road to recovery   It's the limbo + unknown that is the worst because you can only think the worst + I just cannot drag myself out of the darkness.  I really cannot wait until cancer doesn't dominate my every thought either + I can start to be positive + hope for the best. I can't bear the thought of not seeing my little boy grow up which I then have to level out with the fact that I may be one of the lucky ones + get to the 5 year mark when recurrence drops + survival increases significantly.  I am definitely like you on the crying every day   Trying to run or do yoga every day to give my mind a break but it's sleeping that is tricky when you can't switch your mind off.

I have heard that chemo is very effective in treating TNBC so that's what I am holding onto - it's a waiting game sadly!I will be having lumpectomy after the chemo + a potential full node clearance.

Do keep in touch + if you ever want to actually chat, let me know.  Very happy to swamp numbers + buddy up!

Sending you all my love + thank you for your support + wise words of wisdom.  Together we can BEAT this.

Pxxxx

Hi Ladies,

Sorry you find yourself here. It takes a while to sink in if at all! I’m in your age bracket and you’ll see from my profile my diagnosis. The waiting for results/treatment to start is definitely the worst part. I’m 8 weeks in to neo-adjuvant chemo. It’s surprising how quickly the time goes. I can also confirm chemo is definitely shrinking the tumour. 
I met a lovely girl on the chemo unit who is TNBC and I caught up with her at my 3rd session. She told me that the treatment is heading in the right direction for her and that her ‘lump’ has also shrunk. I’m not sure if she had LN involvement. She was looking into freezing her eggs.

I tried the cold cap for my first 2 treatments but it wasn’t really working for me (also had breast length hair cut in to a lob, it’s now a crop) so I made the decision to stop it. I didn’t find it uncomfortable though and it’s worth trying if that’s what you decide.  

I hope this helps a little and am glad that you found each other and can support each other through this tough time.

With all best wishes to you both going forward xx 

Hi CC, 

Sorry, that you also find yourself here!  It's not a fun place to be but hopefully, we will all get through this together 

Just got back from the oncology department + I still have about 2 weeks to wait for the CT scan (dreading that) + chemo to start - the waiting is the worst!  Should hopefully have the marker inserted into the tumour next week - am praying with all my heart that the chemo does its thang + it starts to shrink   So pleased to hear that yours is shrinking   You got this lady 

Can I ask if your hair started to fall out straight away?  Are you looking into a wig or anything? 

Stay in touch, us ladies have to stay together!

Wishing you all the best + sending love xxx

1. Hi Pippypop,

I think my chemo started about 2 weeks after my oncology appt. Easier said than done but try and keep occupied doing things you enjoy while in this waiting/holding pattern period. 

My hair didn’t fall out straight away. It was about 2 weeks after the first treatment I noticed some hair loss and thinning on top, 10days after the second treatment it seemed to be coming out a lot more frequently and clogging up the hoover! When I went in for my 3rd treatment and discussed with the nurses weather to continue with the cold cap, one nurse wanted me to continue as I still had/have quite a bit of hair left, another nurse said it was entirely my choice but had thinned a lot on top which indicated that the cap probably hadn’t been fitted snuggly enough - grr!! And that any subsequent cold cap would be quite uncomfortable on that particular area. 
In all honesty though, my main reason for stopping it was that you’re on the chemo unit longer and I was impatient to get back home! 

My hospital recommended a website called Natural Image wigs and on a whim I ordered one online which is actually quite realistic. I haven’t worn it yet but it’s comforting knowing I have it if I want. My NHS trust does contribute to the cost of a wig so do have a look in to it.

Sorry, that was a bit of an essay!!!

You’ve got this lovely! Sending hugs xx

Hey,

Sorry for late reply. I find the forum format quite tricky to work!

Your fears are so relatable and although I’m so sorry you’re going through this... it is comforting knowing we’re not alone, isn’t it? During the waiting bit I was like a crazy woman- painting my skirting boards, redecorating my bathroom etc. Anything to keep busy! For me, having time to think is when the despair floods in and I just feel hopeless. The sense of loss and grief is inexplicable. I feel that the shadow is with me constantly and every moment is tainted by it. It feels like I’ll never be happy again! At times I get frustrated with myself & think “count your blessings” but if I’m honest it’s not easy to do that right now. Not when I’m feeling so broken.

You WILL get to see your boy grow up & you will cherish every moment because you won’t take any of it for granted! I am so so struggling with the children part but am trying to think that it must be for a reason. Maybe I am being guided to adopt or foster one day. 

Re: Gucci turban. Yessss! My blooming wonderful husband said the same (Channel tho!) & has bough me a big pair of sunglasses and a Mulberry handbag. If you’ve got to go to hospital and have cancer then you might as well style it out, right?! I’m going to get myself a super blingy headscarf and have already been stocking up on cute little hats and caps. I like to be prepared so that as soon as the hair falls out I’m ready.

More worried about eyebrows and lashes tho... no experience with falsies really.

xxx