Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Surgery done! Thanks @TopOfTheCliff and @lucysmam for the well wishes. Once I was actually in hospital I was fine. The waiting over the weekend was the worst part!

@lucysmam you are looking fantastic, your DD has good taste in lipstick 💋

@ClashCityRocker hope the brachytherapy has gone well today.

@ClashCityRocker I started typing my post about two hours ago and forgot i hadn't refreshed the thread 🤣 glad it was fairly okay.

Hi everyone,
Has anyone got or had multifocial triple negative breast cancer? I've just been told mine in TN. Not sure of stage yet as haven't had surgery and I will be having chemo first.
Feel very concerned as I have quite a few lumps in the same area of the breast. X

@isaxx. DIEP left side here. My belly button is about the right height, but definitely off centre! I don't care as I have cleavage once again, woo-hoo! 😂 it's odd how they do it differently, my boobs (had a reduction on t'other side at the same time) didn't have dressings on - probably a good job with the Doppler on and off it like a yo-yo for 15 hours! Only dressing was some gauze like stuff and a few butterfly stitches on my abdomen, which looked lovely when it picked up the black fluff from my pyjamas! I'm due some tidying up surgery where they will get rid of what I describe as my Cornish pasty ends, maybe they'll sort it then. Are you having any "tweaks" down the line?

@bringonyourwreckingball yep, I had a moment of "fuck it, if they stare, they stare" this morning. It's not as bad as I'd imagined/built it up to be

@TopOfTheCliff @ClashCityRocker I thought I'd be channeling my inner potato 🤣 we could have started a veg garden 🥔

@AllotmentTime glad to see your surgery went well - hopefully your recovery is unhindered 🤞

@Cornishpixie86 - sorry to hear about your diagnosis. There are definitely some TN people on here, so I hope someone knowledgeable will be along soon.

@Icantfindanewname - coincidentally enough, I was half way through root canal when I was diagnosed with BC last summer. I'd had a couple of treatments by my dentist (private, but on a monthly plan) and it hadn't worked - I also have twisty canals. So she had referred me to a root canal specialist and I'd agreed to pay £1500 (gulp) to get it done there. When I was diagnosed I needed to get it sorted quick as I had an abscess which would have been an issue for surgery/chemo etc, so I had the tooth extracted, thinking I could always get an implant or something if I couldn't live with the gap. Anyway, I can honestly say it doesn't bother me and you'd never notice, so I can spend the £1500 on something nicer. Hope you get yours sorted one way or the other soon - it was v painful before my dentist removed the inside of the tooth.

@Remaker - thank you. I feel better today, and know there's no reassurance to be had, I just need to learn to live with the risk of recurrence and deal with that as and when it happens. As many of us on here are doing. But it sucks - I feel anxious about any kind of talk about the future.

Also, I am totally here for the poo talk. I am about to start a new treatment that causes diarrhoea, so know I will need to take immodium, but the anti-sickness meds from chemo caused me terrible constipation, and I'm v anxious about balancing that all out. And it's hard to talk about in real life. When I was starting chemo, all my friends completely got that I might feel shit and not like doing stuff, but somehow it's harder to say that I might not be able to do x because I need to be near a toilet - or might need to. Hope you've managed to eat a bit more?

@dotty2 I would love to have the blumming thing removed, but because of the bisphosphonate infusion it is possible the wound will never heal, so it's a last chance option only. Honestly, you get told of the main side effects of treatment such as hair loss, sickness, but there are sooooo many other side effects you don't think/know about [side eyes toe nails which are still thick and brown tinged 2.5 years after chemo finishing]

Ah, of course. Sorry I hadn’t thought of that.

Thanks very much Icantfindanewname At the moment I can't think of any questions but thanks for the offer.

Well done Lucy on getting out and about. I also get helpful comments from my DD, got told with my hat I look like a girl smurf. 😂I have also found for first time better if use makeup, before never bothered and nice jewellery helps as well though most of time cba.

@Cornishpixie86 Hi pixie, I’ve also got TN with both sides involved, three smallish tumours. I’ve just finished 12 rounds of chemo which took quite a long time to get through as I had a couple of complications. Will have surgery soon, as it’s TN and genetic i have the BRAC1 gene I will have a bilateral masectomy and reconstruction.
How are you going with it? At the start it feels like a huge mountain to climb. But all you can do is approach it step by step. Here if you need to chat.

Fairy

@isaxx You may find the re-positioned bellybutton changes with reduction of swelling, or if it's not too your liking it could be disguised with a tattoo. Unless there was anything massively wrong with it, it probably wouldn't be fixable surgically as you'd just be left with excessive scarring at the site.

I had delayed DIEP last Oct & just had symmetrisation surgery on the other side. My belly button position is ok but the scar's a bit rubbish around it, I'm planning on having a massive decorative tattoo to cover all the scarring anyway. The thing I'm having trouble getting used to now is the new nipple position on the symmetrised breast - it's very forward facing in stark contrast to the previous saggy orientation!

@Silkierabbit The DIEP waiting lists are really bad - you might have seen it discussed on DIEP facebook sites. Bristol Southmead hospital are trying to get another surgeon in so they can trial doing two DIEPs a day - otherwise it takes up the operating theatre and theatre team for a whole day for one person, & there's the massive backlog of women who would have had immediate reconstruction during Covid but were forced to have a mastectomy. If you have a Keeping Abreast group in your area I'd recommend checking them out. I found it helpful to go along to the one in my area whilst waiting for mine (even though it was just a post-radiotherapy/finishing chemo year-long wait as I was a private patient).

@dotty2 I'm with you on the poo talk. My oral chemo gives me constipation which I sort of manage rather haphazardly with daily lactulose and go to laxido for more severe blockages. The trouble is that they take a couple of days to work so I'm always running behind and often overdo the dose, then have to stop for a few days to 'reset' but then end up terribly constipated again. I'm never 'right'. I don't go out much but when I do, I have to plan ahead to be near a toilet. Could you say to your friends that you have to drink loads due to your chemo so will need to be close to a toilet? My bowels have ruled my life when way or another since before diagnosis and it's not something that other people can really understand.

@TopOfTheCliff

Thanks for confirming that there is indeed some evidence suggesting tamoxifen can reduce the incidence of brain mets in TNBC.

@TopOfTheCliff Thanks xxx Yes, I am ok! Had a lovely afternoon having lunch then tea with two friends I hadn't seen in ages. I just found it so irresponsible and frustrating this morning how @HerbalRefreshment was shutting down our debate on tamoxifen (and oestrogen) in TNBC.

Thanks for your waves of calm, @TopOfTheCliff those are always welcome x Great about your energy levels!

@lucysmam you look wonderful! x

@Icantfindanewname Thanks for the update, and great news it isn't the side effect of the zometa, that's a relief. Good luck with the treatment.

@Cornishpixie86 welcome!

I also have multifocal breast cancer, although mine is HER2 rather than TN. In my case, it made it more complex for the team because working out what was what was harder, and I had to have extra biopsies. They had to do an MRI in between and do a further biopsy guided by those scan results. I don't think it's always like that with multifocal though.

Like you, I started with chemo too. That's handy because they can see how it's working. keep us updated x

@ClashCityRocker Glad your brachytherapy went ok!

@AllotmentTime Great news about your surgery being over!

@Icantfindanewname @HauntedDishcloth It is hard to deal with things not being as they used to with your body whether bellybutton or nipple position, etc. It might end up looking OK but is not the 'you' that you intuitively know. I will have a nipple reconstruction further down the line (small breasts so don't like to always wear a bra, so don't want the asymmetric nipple situation under my shirt). This is all so difficult, as it comes as a bolt from the blue. Diagnosed just over a month ago. Went from not a care in the world to being hunched over and in pain having had by whole front reconfigured..
@Cornishpixie86 I have TN but unifocal as far as I know. Just had surgery so will not know stage or if more cancer found on the same side for a couple of weeks. Unusually for TNBC, they have done my surgery first. I guess you just put yourself in the hands of the doctors judgement.

My bowels have ruled my life when way or another since before diagnosis and it's not something that other people can really understand.

Am I the only one who is quite happy to chat to people about the state of my bowels then?! I’ve been a bit constipated since chemo (and actually tended towards this all my life despite eating a lot of fibre). It’s probably something I didn’t used to mention, but since the cancer diagnosis talking about various bodily functions now seems to have just become perfectly normal, none of my friends seem particularly shocked or upset. It could be an age thing though, we are all peri/menopausal and have weird things happening to our bodies anyway, so perhaps it becomes more normalised.

Though I did mention to a man in a café the other day that he’d put a huge amount of coffee into my flask, and I would be peeing all the time, and he looked horrified, so I felt suitably shamed…. You forget what passes for normal conversation out in the rest of the world!

Welcome @Cornishpixie86 from a Devon Dumpling. I have had metachronous BC which means cancer in both breasts two years apart but one was triple positive and the other triple negative. I’m just a giant cancer battery! I had chemo first for both of them as my surgeon wanted to do a minimally destructive lumpectomy and indeed I now have “quite nice knockers for 62” according to my DH. I paid for gene testing as I didn’t qualify in the NHS ( too old and not black) and it was negative. The treatment is long and winding but prognosis pretty good as you see further up the thread. Ask us any questions and try to stay off Google.

@SierraSapphire I keep oversharing when I see old friends who ask “how’s it going?” expecting me to say “fine” and I give them a five minute rundown of how crap it all is. But I don’t often talk about poo.

Yesterday fuelled by extra carbs I managed ten minutes on my turbo bike and fixed a dinghy in the evening which made me happy. I got to play with DHs new super drill ( if only that was a euphemism!) Last day of round three pills today then a welcome week off.
Have a good day folks.
Top

@isaxx i was told whether they do surgery first or chemo for TNBC is largely dependent on the size of the tumour - mine was ‘just’ over the threshold so they did chemo first.

@dotty2 I’ve found it a helpful way to identify my true friends as they’re the ones I can tell ‘sorry I won’t be able to come in case I need to poo 5 times in an hour’. It’s a bit different at work obviously! My boss’s husband was diagnosed with bowel cancer a few months before me so that’s been helpful as she understands without the graphic details. I do wonder when I’ll get back to the office. Hopefully at least the toxic farts will reduce once I’m finished chemo.

The early days post surgery were the trickiest for me with absolute raging diarrhoea but I couldn’t take Imodium as constipation would have been disastrous for my healing. Now I’m hitting the drugs hard to ease it and sometimes the effects last into the following day which is nice. I’ve managed to eat a bit of breakfast and dinner for 2 days now and I do feel better for it, just really hard to face it.

I just want to say how brilliant Mumsnet moderators are!

Late last night and again this morning I received some private messages from a forum member attacking me personally. I reported one of the messages and asked Mumsnet if they could please tell the person to stop contacting me.

Mumsnet emailed me their response: they said that person had been banned before and that they are now banning them again.

So if this ever happens to you, let the forum admin team know because they seem wonderfully supportive.

Oh no! From this thread? I really hope not. This is usually such a lovely place to be. Thankfully I’ve never had cause to report anyone but I’m sorry you did.

2 weeks until CA125 levels checked for me. I’m really anxious as I haven’t had them checked since a few weeks post chemo. (I avoided having bloods when I had my 3 month scan). My body shape is changing so much with menopause that I’m constantly wondering if it’s new flab or ascites. Ugh.

@SummerCycling I'm glad they acted quickly!

@AGreatUsername it's hard to know what's normal belly & what's ascites isn't it!? Mine seems to still be shrinking, thankfully, & feels more muscle than it has in a while.

I didn't realise they rechecked the CA125, so that's handy to know.

I've just had a telephone consultation & they're going to chase the cardiologist referral that was requested 3 weeks ago. I don't want it to turn into "you need 7 million pills for this thing we've discovered that you weren't aware of & hasn't caused you any issues", though, which is concerning me a bit.

She also seemed happy for me to carry on keeping an eye on my stomach shrinking/growing myself for the moment, and is going to request a CT for week 9, but do it now since the cardiology request is taking so long.

I had an interesting day today - it's quite something getting caught out in a downpour with no hair 🤣 It was dripping off my eyelashes, my nose, my chin...dd1 also closely resembled a drowned rat though! Also encountered a staring lady in Maccys when we popped in for a McFlurry after Lidl - she made it more obvious by trying not to be obvious so I stared back 🤷‍♀️ Surprisingly, the dc's in dd1's year group who I thought would be ones to comment, didn't, even though it was really obvious they'd seen my head & commented as we walked through the car park.

I was wondering @AGreatUsername about your CA125 test, I knew it was soon. My CT is tomorrow. It’s weird thinking things could change in an instant when you’re getting back to normal. Whatever that means now. Fingers crossed. My weight is fairly constant, but I do get all sorts of twinges, hip pain that sort of thing, and I don’t know how you’re supposed to tell what’s normal and what’s not, they’re all things that come and go, and I’d be on the phone three times a day with different things if I was asking about them! But then, apparently a third of endometrial cancer recurrences have no symptoms 🤷‍♀️