Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Oh city, how devastating for you . There are lots of posters here who can prep you for chemo- have they given you a dedicated nurse yet? They are fab, IME.

peaceanddove, if you call the consultant's secretary and ask them to chase it up?

@BitOfFun Appointments with various people soon. Just holding onto the thought its stage 1. Is triple negative bad then?

Good idea @BitOfFun. Thank you will try thàt.

@citybumpkin triple negative isn't necessarily bad at all and the fact you're only stage one is excellent news! Plenty of ladies on here who were triple neg, but had treatment and are living healthy lives years and years later x

@peaceanddove Thank you! I really needed to hear that. Just keep looking at my DD and telling her how much I love her. I really want to be around for her for a long time.

My pleasure @citybumpkin. If you like you could do a search on here for posts by someone called @amberlight. She is incredibly knowledge and very well informed about the very latest cancer research. She has written tonnes of very reassuring posts about all the successful treatments for both hormone positive and negative breast cancers x

@citybumpkin I had triple negative, grade 3 and stage 2B in my case, diagnosed almost a year ago and now cancer-free after chemo, lumpectomy and radio. I tested negative for BRCA.

TNBC used to be regarded as less ‘good’ than other types, but it responds well to chemo. That may be why they want you to have that first. If you google stats though, you’re likely to see old data turn up which would look less positive for prognosis, so tread carefully if googling and focus on the fact that chemo will be a powerful treatment.

Very kind of you to say so, though being clear (as ever) that I'm an enthusiastic amateur, not any kind of medic. It got me through my own treatment, trying to keep up with the research, and I still read it.
Definitely avoid Googling re survival etc unless you're in a really good place; as has been wisely said above, nearly all Googlable materials are years out of date....or based on info that's years out of date.
Stage 1 triple-negative has an excellent survival rate now.
No guarantees for any of us, of course, whatever sort. But teams are usually hugely competent at dealing with this sort with the standard options.
Teams are also getting very enthusiastic about different options; we're seeing 3-4 papers a day on the subject now. So there are potential new options ahead.
Hoping you have a kind and reassuring team, and a good outcome.

@citybumpkin I'm currently undergoing treatment for triple negative breast cancer. Mine is more advanced than yours and has spread to my lymph nodes. I started with a 5cm tumour plus pockets of cancerous tissue throughout the breast. I'm on cycle 3 of 7 cycles of chemo and there's already a noticeable response to it and the tissue is feeling more like my healthy breast. The swellings in my armpit have also reduced. I'm also BRCA negative.

The treatment for TNBC is very aggressive but it can have good long term prognosis if caught early enough, which it sounds like yours is.

@Brassica Glad to hear the treatment worked. I have the feeling I will be BRCA positive as my mum had breast cancer. When I tried to get her to fill in forms regarding access to her medical records, she refused, saying that doctors had told her it wasn't genetic. I somehow don't believe what she said. I'm 43 and she was diagnosed with advanced cancer at 57.

@amberlight Thanks for more positivity! Yep, I've been googling like mad for the last two days and really working myself up. Healthcare in The Netherlands has been very good so far. My initial appointment with a consultant was within 48 hours of seeing a GP. They gave me the results of the biopsy an hour after doing it. Full results and expected treatment plan 48 hours later. Whole range of appointments to be booked with various people and chemo to start in 3 weeks time. Also small consolation but free tea and coffee.

@barberousbarbara Sorry that you're on this thread too! I feel in the same position as my friends/family at the moment as in I don't know what to say! Sounds like the chemo is doing its stuff!

Well 12 weeks of weekly chemo. And injections every 3 weeks for a year. Called McMillan they can't advise me until work let me know what's going to happen re pay etc. Called acas told where I stand if they get rid of me etc. Finally got hold of HR who needs to speak to my line manager for their thoughts on what they're going to do with me. Pretty poor considering it's. A multi national company. I'm being careful what I say now. I really shouldn't be worried about work, but it's stressing me out. I really should know by now where I stand yet I'm still none the wiser!

Oh and forgot to add spoke about cold capping and was told I'd still need to cut my hair shoulder length and even then it'll still go really thin. So I'm going to go pixie short. Most likely won't suit me at all. Oh and looking at freezing my eggs. Never know what the future holds.

@Nonotmenori if you are having the weekly chemo (paclitaxel?) your hair may survive as that means a lower dose per treatment than the type they only give you every 3 weeks (which is what put paid to my hair)? Fingers crossed for you that yours stays on, anyway!

Also hope you get good news from your work soon. I had only been with mine a few months at the point of diagnosis so had similar worries, but luckily they have been really supportive about it.

I wonder why they told you that you would need to cut your hair? I didn't have to do that. I just wet and conditioned the hair all over the scalp and the long bits just hung down the back. Perhaps it differs depending on the type of cap they use?

I was told that, even if I did lose some hair that using the cold cap would help to protect the scalp and it would grow back more quickly.

More importantly I don't think your employers are behaving in a very supportive way. I was only working part time self employed when I got my diagnosis but the large organisation where I previously worked told anyone in your situation to take the time they needed and we will work out the details later. I hope they get themselves sorted out and step up to the mark for you. You really shouldn't have to be worrying about whether they will act reasonably.

Hi, all, just putting my head around the door. Still waiting for surgery for breast cancer. It’s a four-week wait and my anxiety is growing. I don’t know what stage it is or what type. They are doing surgery - wire excision - and then radiotherapy. Tumour is 12mm. I had to have the marker clip put in twice because it came out the first time. I don’t think it’s hormone dependent.

@Piggles39 my bcn told me that it'll thin so best to shoulder length cut. My mum says my hairs going to look awful if it's thin so best to chop the lot off and start again. Re work I stupidly left a role I'd been in a while to come here then found the lump 6 weeks in. I'm still within the probation period.

Sorry meant to @meercat23 my last message. Xx

@daisypond 4 weeks wait?

@Nonotmenori
I hope your work proves sympathetic. You really don’t need this at this time. I work for a multinational but I have been there for some time. So far, they are fine with me taking time off for appointments and they know I’ll have quite a bit of time off post-surgery and then again for radiotherapy.

Yes, four weeks’ wait. Originally said six to eight weeks. Bed shortage, they said. Diagnosed formally on 13 Feb. Op 17 March. Major London hospital. It’s driving me crazy.

Actually, biopsy was13 Feb. Formal results on 19 Feb. So still four weeks to wait.

@daisypond What London hospital? I'm at Guys. They just called and I'm going to st Thomas for an echocardiogram. I asked why I'm being sent there and they said it's the only one they can fit me into. To be fair though guys have been fantastic for me. I was originally at Lewisham then they palmed me off to Guys which has worked in my favour. Maybe that's my only bit of good luck done with now lol.

I’m at King’s.

@Nonotmenori lewishem isn’t too far from me. I think it is actually closer to my house but my dr surgery is in different borough to my house which has worked out well.
I’m currently Royal Marsden Sutton branch but will transfer back to croydon hospital for surgery as they said they try and only do radical surgeries in the marsden.
I was originally told 4-6 weeks after last chemo would be surgery and dr has since said it might be an extra two weeks or so depending on scheduling issues. Shall see what they say at next appointment.

Guys and St Thomas are also really close to me. I’ve ended up at King’s, I think, because the routine breast screening service, which is how I was picked up, was done through them. I’ve had no GP input in my saga. Radiotherapy will be done at Guys.