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going to be brave and post: non-hormone receptive bc anyone?

(25 Posts)
springydaffs Fri 05-Jun-15 20:46:01

I'll probably post and run away though confused

But I'd like to hear from anyone who has/had this? We're not saying the word - can't handle the word! - but most seem to have the hormone-receptive one. But I do not.

The breast care nurse has hinted a few times that what I have is 'very unusual' - but I haven't picked up on it, largely bcs I have found the breast care nurses sooo patronising - I may be terrified but I'm not an idiot/infant - and I blank out the ridiculousness... Plus of course I am rabbit in headlights glued to the spot.

So, like a fool, I did a tiny Google to work out what could be going on - mistake? Or maybe not. Chose a medical site and came across the triple-negative thing. My her2 was borderline after initial biopsies but I've had the op (lumpectomy, lymph node - only one lymph node as per current routine) and awaiting conclusive results on Thursday 11th.

I now see what the BC team have been saying, as this type is usual for black/Hispanic women but I am white british (I am now feeling foolish that I may have been too swayed by what I read when I googled...)

Anyone been here with the non-hormone-receptive thing?

(frightened no-one will post bcs 1. They are no longer here to post 2. Don't want to give me bad news)

springydaffs Fri 05-Jun-15 20:48:13

Grade 2 btw. Caught v early by a bit of a fluke

mintyneb Fri 05-Jun-15 22:12:57

Hi springy, my bc was hormone negative but was strongly her2+ so I'm not sure if my experience will be relevant? I was diagnosed last July and I've been through chemo, surgery and radiotherapy and have 8 more doses of herceptin to have between now and November.

It was an aggressive grade 3 tumour but no node involvement fortunately and I'm very much alive and well!

If it's triple negative BC you need help with, try posting on the tamoxigang thread here in general health and you might get some better replies. There are plenty of us there who pretty much have every type of BC covered :-)

Hope you're recovering well from your op

Twinwife Fri 05-Jun-15 22:20:04

My mum has (had) triple negative, grade 3. Single masectomy and now on #5 out if 6 cycles of chemo. Not in lymph nodes , all we can do is hope for the best. They got a good clearance from the surgery and blasted with chemo now. We have been told high risk of recurrence in first 2-3 years but past that the risk reduces to that of hormone receptive cancers. Mum is white 53. Best wishes x

Rivercam Fri 05-Jun-15 22:22:30

Have you discovered the tamoxigang thread in health. It's great for all things cancer related, medical, emotional, ...

springydaffs Sat 06-Jun-15 00:20:26

I did try the tamoxigang thread but I'm not going to be taking tamoxifen - and the stories on there are waaaay ahead of what I can currently compute.

I am so surprised at how badly I am coping with this. I almost feel I have thus far been entitled about my body and my health! Eg I am v knowledgeable about nutrition and general health and I look after myself; not just physically but emotionally, too (not sure if the 'emotional health' bit makes any sense to anybody - and I apologise if this is a simplistic, entitled view!)

I just can't believe it!

I also practise natural health remedies if at all possible - though I will certainly take/use traditional meds if there is no other choice; just not often. I recently badly cut my leg and it got infected - it took me 10 days to give in and take penicillin!

I am so dismayed at the brutality of the treatment that is ahead. Yy I appreciate it could save my life - but I am struggling to accept it, is all.

springydaffs Sat 06-Jun-15 00:21:55

Thx for replies btw. smile <<wan

springydaffs Sat 06-Jun-15 00:48:23

Re op - I've been doing the exercises - not vigorously or religiously at all, a bit halfhearted really - and the lymph scar hurts. Should I stop?

I'm really sorry if the way I'm feeling is offensive to those who are much further down the line. It just is how I feel - I am SO shocked. I have always been healthy more or less, sailed through most things, rarely get ill re colds/bugs (so I'm a poor patient!). I'm sure that sounds insufferable and I've beenlucky but i know how to look after myself, too; how to respect the needs of my body and my mind. I just can't believe something so huge has snuck in - how the fuck did that happen?

springydaffs Sat 06-Jun-15 01:19:09

So nhr is a higher risk than hr? I asked the (patronising) BC nurse which one she's rather have and she said it was much of a muchness - or words to that effect. Was she lying?

I shouted FUUCK!! when the consultant told me the incomprehensible news. The BC nurse whisked me out of the room - did she think I was going to kick off?? Silly woman! I should think that is one time it's understandable to be as expressive as required, surely??

And that's WOMAN - not lady; women not ladies re 'most of our ladies find.. ' 'the ladies who come to the clinic are...' Fucksake! I am not a lady I'm a WOMAN. Do they say to the men in the testicular/prostrate clinics 'most of our gents find..' 'The gents who come to our clinic are...'?? Doubt it.

As is apparent, I have some way to go on this! I'm belly-aching about the minutiae .. when things like that are probably going to fade to a dot in the months ahead.

I've been spoilt by rude health all my life.

Rivercam Sat 06-Jun-15 06:03:16

Hi, you don't have to be taking tamoxifen to use the thread. It now encompasses all cancers. There are people on there who are on the start of the journey ("I've found a lump") to those going through treatment. It's great for emotional support

malteserzz Sat 06-Jun-15 07:10:46

Sorry to hear your news. Do come over to the tamoxigang thread it's not just for tamoxifen and we're not scary smile Shock is normal it's so weird when you are diagnosed and feel perfectly healthy you wonder how you didn't know. Be kind to yourself it's a lot to get your head around

mrsrhodgilbert Sat 06-Jun-15 09:02:39

Yes do come over to the tamoxigang, it's for all types. There have been several newcomers in the last week or two and they are all feeling as shocked and angry as you so you wont be the odd one.Your feelings are quite normal, raging at the system is quite normal. When you suddenly have your life taken from your control I think you take particular note of how the staff are treating you. Most are excellent but I have met the odd one who could do with a bit of social skills training. True there are lots of new terms to learn and some are several years along from you, but that's a good thing.

India rose, are you still reading, how are you doing?

I'm off to a wedding today, better get ready.

springydaffs Sat 06-Jun-15 10:40:25

But you have to have got at least part way through the shock to be able to read some of the stuff posted on there. I just can't handle that stuff yet - I can't even say the word ffs. I'm sure I will eventually but I'm not there now.

Thanks for replies - I'm going to have to lie low until I can face some of the hardcore stuff. I was a bog standard person and suddenly I'm in a very frightening world, where ppl are talking about having their breast cut off. Can't do it.

Cailindeas35 Sat 06-Jun-15 16:18:44

Hi springydaffs.

I was diagnosed 2 weeks ago with triple negative breast cancer. I veer between anger and being depressed. I can't believe that this has happened to me.
I have a ct scan, an MRI and I have to meet my radiologist next week. That's 3 days going to hospital next week. Then hopefully the following week starting 6 months of chemotherapy. I just want to get this started and get it over and done with so I can go back to my life.

Wishing u the best.

springydaffs Sat 06-Jun-15 17:18:19

So we're neck-and-neck Cailin - though you're about 3 weeks ahead of me. It's going to be all change on Thursday for me...

How can this be that my life has been ambushed by this fucking thing?? That I'm going to be plunged into an invasive medical world operating at the top of its invasive game?? By staff who leave their manners at the door (if they have any - many don't); who don't do joined-up thinking or info exchange bcs their focus is elsewhere re at best focused on a few cells that have invaded my body, not the trillion cells/life surrounding those rogue fuck-off cells. I feel INDIGNANT I'm being dragged along with this thing, forced to pay it homage, to entirely structure my life around it.

Cailin flowers

springydaffs Sat 06-Jun-15 17:19:19

And everybody flowers

Cailindeas35 Sat 06-Jun-15 17:51:07

Springy I know how you feel. I want to scream most of the time.
Weirdly, all that seems to be pre occupying my mind is whether this will come back again in a few years time, and finish me off.

Life was just getting good for me and my kids. I got out of an abusive relationship 2 years ago. I have met somebody new, and life was good. Now this, every time I get back up, I get knocked back down. I don't how many knocks a person can take.
I was full of fight til today. I'm so tired of it all, and I haven't even started treatment yet.

Harumff Mon 08-Jun-15 14:16:54

I just wanted to chip in as my sister was diagnosed with triple negative in October 2013 - she's white british too, I don't think its ridiculously rare.
The stats on TNBC can read a bit scary but plenty get through it fine. My sister's was Grade 3C and had spread to 4 lymph nodes so she had a mastectomy, chemo and radiotherapy. A tough year but its now almost a year since her treatment ended and she's currently really well and back to work etc grin)

She found the breast cancer care forums really useful and I've been on there too recently after a scare and there are lots of women at varying stages through the process, all very supportive and some still terrified to say the word too so I think it would really help you to have a look. Best wishes x

Lilymaid Mon 08-Jun-15 16:40:38

Another Tamoxiganger here who isn't on Tamoxifen.
It is difficult to come to terms with this invader of your body. Once treatment is underway it gets a bit easier. I have secondary BC so it will be there for ever somewhere in my body. I work full time, go on holidays (and even managed holidays whilst on intravenous chemo) and have an active social life.
You will find it gets easier ... honestly!

springydaffs Mon 08-Jun-15 20:50:08

Well, I've found some good support after kissing a few frogs (yeurk - slimy) re MacMillan drop-in centre where I met a woman, another drop-in, who was double-neg. Which I may be - I'll find out on Thurs. Also a support group for my age-group; had a wonderfully refreshing, long phone convo with the facilitator - such a relief to let it all hang out; group meets once a month, mtg tomorrow! The nurse at my gp practise has been a stirling support - I saw her today, too. So now I'm besides myself I exhausted but it's been a productive day. I also found a support bra in lidl - cup size a bit small but infinitely better than the bra I was wearing which was no support at all without the underwires, and I had taken to holding up the baps with my forearms like Les Dawson.

Cailin, apparently there is a thread for the newbies/freshly-diagnosed on...oops can't remember the site - the main site for this wretched thing. Macmillan were great, too. The woman I spoke to at the support group said to take things as they come, not to think ahead. That's where I was at until HC professionals started talking about stuff way down the road. I honestly think they do it day in, day out, and losesight of the impact on ppl's lives. One silly cow on the ''helpline''started banging on about fucking turbans today - FFS. I cut her off.

I don't think I'll ever get into this as if it's a career. There is so much more to me than this, it isn't everything, regardless how it turns out. I take it seriously - of course I do - but it isn't the top item. It's happening to me but it isn't me iyswim.

springydaffs Thu 11-Jun-15 22:26:01

Triple negative, node clear, clear margin. Appt at oncology on Monday for the full whammy in due course (soon)

Weebirdie Fri 12-Jun-15 12:56:49

Springy, Ive been wondering where you were. You know I like seeing you here smile and Im really sorry to hear of your news.

We currently have 3 cases of breast cancer within the extended family and sadly its the very young woman who's prognosis is very sad. She got told she had secondary cancers about 3 years and 9 months from her original diagnosis and two months after being re-diagnosed she only has a few months left.

The other two ladies, one of them is 68, have both just celebrated 5 and 6 years respectively since the end of treatment. They lead very full lives. None of the people Ive spoken of are White British.

Ive only told you this because you asked and even so Im kind of hesitant to press post message. And co-incidentally my sister in laws cancer was only discovered when she banged her breast and told me two months later about the lump she was having to massage with olive oil every night. It was in exactly the same place as where she had banged it but it had obviously been there for a long time. I had her at the Dr's they day she told me and she was grade 3 but no lymph-nodes involved. Her treatment was a mastectomy and 6 months of chemo.

I really am so sorry.

xxxxx

springydaffs Fri 12-Jun-15 19:29:33

Weebirdie, thank you for posting. However, I confess I didn't read it beyond initial greeting and first words of second para - I am becoming very selective! So you don't need to feel bad about posting.

I can't hear bad news, bad stories. I know what I'm facing. I know others are facing it and have faced it. I have to face what is directly ahead of me - which is imminent chemo - and no further than that. A step at a time.

We have an excellent, award-winning cancer care centre in my city and I'll be accessing the (free! shock ) classes and treatment there eg diet, complementary therapies, exercise etc. The very next thing I was going to Google was going to be 'chemo diet' so I'm thrilled it's all been done for me and I can go there and be spoonfed - literally!

I'm sorry to be contrary but that's just how it has to be, apologies for offence - nothing personal. I have to get through this in a way that suits me xx

Weebirdie Fri 12-Jun-15 19:41:22

It's ok. Really. I wasn't even sure what you were asking but I felt I wanted to try and answer you anyway in the hope I might get it right.

I'll keep you in mind and will you on from afar during your treatment.

And once again I'm so very sorry you're facing this.

Xxx

springydaffs Fri 12-Jun-15 19:50:01

flowers

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