Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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@TopOfTheCliff I really enjoyed that twist! I also love your optimism and determination to scrape together some positivity in the face of all your current challenges.

I have been in a state of deep gloom and panic today, which has been building ever since I read that BMJ article and discovered exactly what my changes of dying in the next five years are (spoiler alert: too high for comfort). I also have a mystery bony lump on my elbow and have been frantically googling. It has probably been there for years, and I have just never noticed, but I will mention it at my next onc appointment. Sending positive thoughts to everyone.

@FairyWren7

I'm not medically trained in any way whatsoever, my only science qualification is Biology O-level from the mid 1980s 😂So obviously, I am not in a position to advise on this or any other medical issue other than share my own experience or what I've been told by the doctors or what I've read online.

I know 2 people now who have TNBC who have been started on oestrogen suppressants after radiotherapy (i.e. at the end of their treatment plan of chemo/surgery/radio). I found that puzzling, so I read a bit to find out about that. For example:

https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-021-01412-z

So it does seem odd that you are still on HRT; however, there may be other reasons for that. Or maybe your subtype of TNBC isn't the type they think is sensitive to oestrogen in that way. I can't guess, but I would definitely check again with your MDT whether you should stay on HRT.

I was on HRT for a few months before my cancer was diagnosed and so I came off it. The team thought that was wise, even though my cancer is also HR negative (HER2 positive only). Who knows about the other hormonal influences like testosterone, prolactin and so on, I didn't want to to risk it seeing as my cancer had grown at the speed of light.

Just had phone appointment re diep surgery an hour and 10 mins late and then for 2 minutes. Though at least they moved to phone. Just said finally are putting on waiting list, surgery was Dec 21, 1.5 years before they put you on list then said wait list at least a year and if covid outbreak longer. Though last visit they said waitlist 42 weeks down from 2 years and may take from ct which was in April. He sounded hacked off so didn't want to question it but really want this op done. I have just moved 2020 cancelled flights to 2024 summer so hope it won't clash.

@ClashCityRocker that's great news. Good luck tomorrow.

I’m horrendously lost in the thread because I’m back working full time but to respond to all sorts of random stuff:
I’m using mane n tail, biotin and collagen for hair
I’m TNBC and have been told I can’t go back on HRT for at least 3 years. Thankfully the cocktail of drugs I am otherwise on seems to have sorted most of the peri shit. I’m going to have radio but no one has mentioned oestrogen suppressants? And I’m only 48 so oestrogen very much still a thing.

@SummerCycling thanks for getting back to me. It does seem very counter intuitive to keep taking HRT especially after a lengthy history of hormonal issues over the years - but I think it’s for the bone protection.
I will have another chat with the oncologist when I speak to her tomorrow.
I’m still convinced that all of this has been triggered by menopause anyway as it seems odd that it should literally turn up a few months after a total hysterectomy.

@bringonyourwreckingball it sounds as if you are being given the same advice as summer. Thanks for commenting.
I’m overseas so they sometimes do things a bit different but I will defo question the HRT thing - I’m only 46 but postmeno now so I imagine it will be a case of balancing the risks.
Thanks for the hair product recommendations! Even if they don’t work it’s a nice bit of self care that will make me feel better. I just want my long swishy hair back!

@bringonyourwreckingball your TNBC wasn't fed by estrogen like the ER/PR+ ladies, so estrogen suppressors dont matter for you - if any cells had escaped into your blood stream, they replicate via a different pathway, not one that is hormonally driven. This is why its so important for TNBC to have chemo and try and kill everything first go because there aren't any good preventative meds long term similar to the AIs.

@FairyWren7

Good idea about speaking to your oncologist, definitely the best plan.

@HerbalRefreshment

Your post contains no hedging or nuance whatsoever - do you really believe it's all as simple as that? Do you honestly think cancer can be put into such neat little boxes?

Cancer is phenomenally complex; it can't be put into neat categories like you seem to want to imply with your bossy tone.

You don't mention Pembrolizumab.

Go away, do some research and come back later. Let's see then how rigid you are about never using eg Tamoxifen in TNBC.

___

TODAY'S LESSON TO SELF: don't believe what random internet posters say, but do the research and ask oncologist (or relevant doctors).

@HerbalRefreshment @SummerCycling is correct there is some evidence that counterintuitively the TNBC tumours do seem to respond to tamoxifen in reducing the incidence of brain mets. How or if that works is yet to be confirmed but anything that helps TNBC is a bonus.

@SummerCycling I hope you are okay. You are right that our witterings on here are no substitute for qualified medical advice. Sending waves of calm.

Energy levels up a fraction today so going to have a short bout of static cycling just to see if it helps. I had a super breakfast of Bio&me gluten free granola with organic fruit from my allotment probiotic yoghourt and kefir. I’m almost a saint!

Ok, the hair is gone 😢 but I am feeling quite confident about it - until dd1 makes another pirate comment about my headscarf 🤣🙄 Just not sure I' m quite brave enough to venture out...which I need to do to go for bloods done

You look amazing @lucysmam

I never wear lipstick and feel like I need to now to balance the lack of hair. You might inspire me!

Looking good @lucysmam

Thanks both of you! I went without the headscarf in the end but did take it with me...my dad (still using dad's taxi at 41 years old 🤣) did question me but I figure people may stare either way so sod it 🤷‍♀️

@dotty2 the red lippy was dd1's idea. I've never really worn red, or felt confident wearing it, but am quite keen on this one! And it was a bargainous 90p from Primarni, and lasts surprisingly well for it's low price.

Both ladies who were working in the room where they do the bloods commented that my stomach's loads smaller than it was at the same time last week too - so maybe my measuring at the same spot every day is pointless & I should just visually check 🤷‍♀️ It measures roughly the same every day but seems to sort of be shrinking from the top down & bottom up to a mid-point. Anyway, that's given me a bit of a boost today. That and fitting in my favourite pale pink wide-leg jeans.

@TopOfTheCliff I'm glad to see your energy levels are up a bit today 😊

Huh well, ok. Sure. Feel better?

@lucysmam that lipstick really suits you and if it doesn’t sound too weird, you have a nice shaped head!

@TopOfTheCliff we seem to be on a similar energy trajectory atm. I was also very low on spoons over the weekend. Missed DD’s parent teacher conferences yesterday for the first time ever. Luckily as she’s in yr 11 (we do major exams in yr 12 here) she’s also invited to attend so she went with DH which reassured me that someone was listening LOL.

Today has also been a better day for me. I celebrated by doing a few loads of laundry. I thought I’d managed to exchange my chronic diarrhoea for constipation then I realised that living on nothing but crackers for 4 days might have been contributing. I finally managed a small bowl of pasta tonight and like magic everything is working again. Apologies for the poo talk!

@dotty2 I’m sorry to hear you’re struggling at the moment. Hope you get some reassurance at your next appointment.

@lucysmam
Can I ask what kind of cancer you have? I’ve been scrolling back to try and see. Just wonder if it might be similar to mine - I have primary peritoneal, which is treated along lines of ovarian cancer.
I’ve only had one chemo so far - carboplatin and paclitaxel- but was wondering if my abdomen was slightly smaller.
I don’t have obvious ascites - but on CT it shows. I felt that recently my abdomen was becoming even thicker and possibly starting to be a bit uncomfortable. But I’m wondering if it’s a bit less uncomfortable now?

Cancer does play tricks with our heads though.

I hope you’re keeping as well as you can.

My hair isn’t gone yet, but that will happen. I appreciated your photo - you look good! Might as well rock the style!

xx

@RedRosesPinkLilies I have ER+, HER2- BC. The ascites was HUGE at one point, before the first drain. But it does seem to be responding well to the chemo & I look less pregnant/am definitely not as uncomfortable. I do have a weird sort of bump going on just under my rib cage, too, like when I'd been drained but that should sort itself again (I think/hope!).

For me, fitting in today's jeans is a definite sign it's getting smaller - I wouldn't have fit in them last week even & had worn the same outfit for almost a fortnight, from a couple of days after the last drain. It does feel different too - I can feel the stomach muscles rather than fluid filled wobbly tum if that makes sense?

Oh, and, I have a big mirror in the bedroom I've been checking in side on - I'm skinny usually anyway but the stretch from the ascites meant you could see my ribs more clearly than usual but they don't seem as prominent the past couple of days so I'm guessing my skin's being pulled less tight in that area.

All that to say, if it looks and feels slightly smaller to you, it most probably is.

Thanks for the head shape compliment @Remaker, no-one's ever told me I have a nice head shape before 🤣 & I did say to dd1 last night, before taking off what was left of my hair, that I hoped it wasn't an odd shape!

Thank you @lucysmam I know what you’re saying - my abdomen feels a bit less solid - time will tell…

Hope I’m lucky with my head shape too - it’s hard to imagine, and suddenly it’ll just happen.

@RedRosesPinkLilies my hair clung on for 5 weeks then (mostly) showered off my head over the weekend so you might be surprised! If it hadn't been for my hair line & parting I might have been able to disguise it for another week or so but they were very obvious because of the tan lines I've got.

@lucysmam i’ve been going out hatless too - I do sometimes forget and think ‘why are you looking at me like that?!’ But I increasingly give no fucks whatsoever. You’re rocking the red lipstick!

Had an appointment with my surgeon today at which it transpires I have an MRI scheduled for Friday which nobody bothered to tell me about 🙄

@Remaker today has definitely been better in terms of energy. My Personal trainer ( sounds grand but she’s a friend now) dropped in for coffee and recommended I up my carbs a bit. I’d been eating low carb high plant for a while and she thinks I need more calories to boost my energy. Plenty of time for losing weight after the chemo is done she reckons.

@lucysmam you look great! Some people just have nice bone structure and look great without hair. I tend towards the turnip look 😂 But now I have chic lesbian hair which I quite like.

@lucysmam I wish I looked that good with no hair, you look amazing 😁

@Silkierabbit I've just had the delayed DIEP (16 weeks ago). Happy to answer any questions I can (if you have any), just DM me.

@HerbalRefreshment @TopOfTheCliff @SummerCycling. I am happy (kind of) to report my dentist found a cracked molar - so looks like the timing was coincidental. Now on two lots of antibiotics, prescription toothpaste and have had a new filing. If this gets on top of it, I will need a crown. If not, it's yet more root canal - which will have to be done by a private specialist as apparently my nerves are longer and curlier than the NHS can cope with 🙄. At least I get to sit in a nice, air-conditioned surgery (while paying £££ for the privilege). However, it could be worse, I can find the money, and it's not the osteochronosis of the jaw which it could have been. Just another hurdle to take at full tilt!

Hi all

Just had diep on right side. Was surprised/disappointed to see how high up my bellybutton has ended up. Does anyone else have this experience. So far, the breast (taped up) looks OK. This was never going to be ideal, bit I hadn't really given my abdomen much thought. It was all about the breast. But now I'm fixated on the look of my belly..agh. this really is a rollercoaster experience.

@lucysmam you look great! I know no one wants to lose their hair but you've got the head for it. My head looks like a potato.

@Isaax I'm not familiar with the surgery, will it settle down at all once swelling etc goes down?

Had my first brachytherapy today and it wasn't such of a muchness for all I've been terrified of it (but very grateful to be able to have it). No pain other than a bit stingy down below and all went as smoothly as it could have done. Glad to be home now. I almost feel like a fraud seeing what some of you ladies are going through.

@Icantfindanewname glad it turned out to be coincidental, it's crap when you're constantly wondering if it's something more sinister/connected. I'm sorry you've got something else on your plate to deal with though.