Cancer Support Thread 96: It’s nearly Christmas - get the sprouts on.

[LemonDrizzle10]

New thread - old one nearly full!

I “only” lost about 70-80% of my hair (even with the cold cap) but it started coming back whilst I was on paclitaxil.

my oncologist said two weeks ago that depending on surgery results I might not need radiotherapy. But I was told at the beginning that I would. So am prepared for it if that makes sense.

@ememem84 i was told very clearly post surgery that I definitely didn’t need radiotherapy so this has come as a total surprise. Apparently the oncologist has looked again at my pathology report from surgery and thinks the tumour was closer to the chest wall than they’d like so they aren’t confident they got good enough margins on surgery.

additional kick in the teeth was they want to chuck another drug at me called amecyclib (or something - no idea how to spell it) which sounds really tough and needs frequent blood tests at the start. So I’ve gone from thinking I was going to be discharged to gp to thinking I’ve got more hospital rubbish to come now.

Oh @aodirjjd that's crap. I wish they wouldn't say 'you won't need radiotherapy (or whatever)' because we naturally hold on to that, they're the experts! What a kick in the teeth 🙁

I had an appointment with my surgeon this morning - I'm having a lumpectomy and a sentinel node biopsy, and have a date - 15th February. So sooner than I thought (although he did mention 7/8th February, but I put my foot down and asked for a bit of time to recover from chemo and perhaps start eating!) I'm glad I made no plans, because I have four other appointments, so far, between now and then, and stuff to get sorted. Apparently I'll be in overnight.

@aodirjjd that is crap mate. We get through something as tough as chemo thinking that once that’s done we are not hurtled into anything else unknown. Have they said why they are suggesting the additional drug?

I am concerned that they might turn round after my chemo to say I need radio - even though I’ve had. Mastectomy, the tumour was within 1mm of the lateral margin. My surgeon told me that I wouldn’t need radio as the whole breast was cleared. It’ll be a knock if so as this chemo has been a long haul and I’ve had a reconstruction which could fail under radiotherapy. Let’s hope nothing changes after chemo.

Those filgrastim are spicy! Okish so far but from the hip/ coccyx and leg pain I can tell they’re working. I also need dh out with me for my walk as I feel a bit dizzy on them for a while. 5 more days of that this week. Hoping I don’t get onto the sickness phase like previously over weekends. Keeps us guessing, all this!

@BatshitCrazyWoman glad you have dates and that they’ve allowed a bit more time for recovery/ teeth. Shout out if you need any guidance on hospital/ home prep for surgery/ recovery.

Another huge step on the way for you.

Weirdly,.my upper arms hurt when I was on the injections @dancingwhilstfacingthemusic and a slight ache in my thigh bones. Odd. They do their stuff though!

Of course, I forgot to ask about bras to wear post-surgery and a few other things, so will ring the BCN on Monday. I do have a soft zip front top/bra thing, from Sainsbury's I think, which might be okay. But will need more than one! Might take a trip round Primark to see what I can find.

Hi @chasegirl I am sorry you have joined us and hope you might yet escape.
What type was your first BC?
I had a triple positive BC in 2020, went through the whole cancer triathlon and Herceptin and finished treatment late 2021 with a normal mammogram. I then found a lump in July 2022 on the other side and it was a triple negative BC which they treated as a new primary and I went through the whole triathlon again, plus an extra bonus six months of oral chemotherapy for luck. I now have my third Two week wait clinic appointment coming up to check out a lumpy scar. My gut tells me this isn’t cancer again, but it will be a relief to know either way.
I think the odds of a second cancer of any type is around 7 percent so one in fifteen of us will get one at some time (Breast Cancer Now has some good information)
It is devastating to have to go back and start all over again but probably helpful that you know what to expect, however grim.
I do hope your scan is reassuring and not another cancer. Keep us posted.

@dancingwhilstfacingthemusic I love that you called the filgrastim spicy! In our house they were the evil bastard fucking injections which DH kindly administered for me! After the first round I was sent to A and E with crushing chest pain and a high temperature but it was just the spice!
By the time I had done 16 rounds I was an old hand with five painkillers including gabapentin. They do their job to keep the white cells up but I found it was like a swarm of bees buzzing in my chest, my neck and jaw. Happily my hips and back were okay. Everybody is different in their response and most don’t get much pain but of course I was unlucky.

Mine was estrogen positive.

The waiting is the worst

@TopOfTheCliff i have my motivation music before each injection, like boxers going into the ring. Today’s was “born to be alive” by Patrick Hernandez. Good old disco. There is also swear of the day and it is very old English in its single syllableness. Often compound swears. We’ve got to get through somehow. I take my cap off to people with young kids as this is bloody exhausting (although I am 58 so maybe don’t have as much stamina).

@chasegirl the waiting sure is horrendous. There are a few of us EC + here.

@frostyfingers I hope today’s chemo goes well and that the after effects are at least manageable. One more done.

Kiboshed post-EC here (day 6, with infusion day 1). Chemo mouth also doing its thing. Rest under a heated blanket - not that I can move around too much without dizziness anyway!

@dancingwhilstfacingthemusic can you share the swear of the day?

been to see surgeon today. Did ultrasound. No more enlarged nodes!

and he said boob feels much much softer. Hoorah.

@dancingwhilstfacingthemusic No 2 done ✅but they did struggle a bit with finding a vein and getting it in so I might have to consider a Picc line. I'm not sure why but I'm a bit squeamish about it, ridiculous when you think of all the stuff I've had done in the last few months. Maybe it's because it's a permanent reminder of chemo, who knows. I do feel a bit dizzy and queasy but am about to take some anti sickness so that should do it.

I was horrified to see my weight has gone up, everyone says don't worry and just be kind and eat as you see fit but is there a way of not succumbing to it? I really don't need extra weight, I have enough to feel bad about myself as it is and being too big is adding insult to injury.

@BatshitCrazyWoman I would recommend a post surgery compression bra, initially anyway, as it will apply more pressure and hold everything together than a normal soft crop top. My hospital gave me one, and I bought two, and am still using them 3 months post op as the scar is still quite tender and can't cope with a normal bra yet.

Has anyone been prescribed sodium clodronate? My oncologist has recommended this (over 3 years 😮) and has written to my GP, but the GP is kicking back and saying it's not been budgeted for, I believe it's about £6k in all, and they're going to and fro arguing their case. The issue is partly that the oncology is all run from a health authority which covers my county but it's different from the GP. It's more than a bit frustrating, I get that it's pricey but since it's meant to help with bone development and reduce the chance of osteoporosis and cancer in the bones then you'd like to think they'd look at the bigger picture of how much money it could save. I'll leave them to it for now as I just don't have the energy for that fight at the moment.

Hope everyone else is ok, I'm just bumbling on one day at a time!

@ememem84 That's great news!

@chasegirl I'm triple positive.

@dancingwhilstfacingthemusic I hope you start to feel better soon, and that at least the sickness stays away.

@frostyfingers the steroids they put you on for chemo cause water retention as well as hunger. It might just be that?

@frostyfingers I don’t know you but I’m so ruddy proud of you. KBO.

I absolutely hear you re the weight, I’m ballooning at this stage but as @aodirjjd says the meds aren’t helping. It’ll come off after as we build up again. I hope. Sluggish bowels due to meds and sitting around won’t help with my retention. Hopefully we are less ballooned than we think.

@ememem84 great news from your surgeon review. Re swear, I’d probably get banned if I shared it! Today’s injection music was Dancing Queen (accompanied by saying “come on you #%*^%”), because I’m going to get back to that.

@BatshitCrazyWoman thanks, I feel like I’m picking up the mouth mantel on EC. Chemo mouth and sore throat starting (no temp, related to mouth I think). I have omeprazole to start in the morning if I need it although if it’s not reflux related I’d prefer not to take it 🙄

I’m probably over worrying but I do wonder if my reconstructed boob is contracting a bit over the implant. I had a dimple under the boob which is where the cancer was and seromas on my first two ops and it seems to be there now under the implant (skin is darker there too). I’ll keep an eye on it and keep massaging it and will contact my breast nurse if need be. Can’t imagine being able to get up to the clinic in my current EC exhaustion.

Anyhow, my Paralympic sport today was a ten minute shuffle to the centre of our village and back with DH, using both my walking poles.

Thanks for listening to my moans, it does help and things will improve.

My dear adult children have said (& this was before cancer) that they would have “oh ffs” on my gravestone should I have one! I obviously say it rather a lot, & more so now! Thanks @dancingwhilstfacingthemusic & the same back to you. Mumsnet may be strange place on many boards but the advice & support from here is amazing, a big thank you to everyone who shares their advice, wisdom & humour here.

Got my urgent appointment next Monday 3rd. Don't know whether to take someone with me as last time it's 3 hours and I never set foot out of the breast unit and they can't come in with me

@chasegirl my 2WW appointment is Thursday and I am going alone. My DH hates hospitals so I will have him on speed dial. If it’s bad news he can swoop in and collect me. If not I will waltz home rejoicing. Do what feels best for you, which may be to have support waiting outside in case it’s needed.

@frostyfingers I think you are awesome. You have so much going on and you are getting through like a trooper. I would say get the PICC because it preserves your veins for the future. It’s never as bad as we think it will be having these things. Regarding weight, I put on a kilogram with each round of chemo first time, FEC-THP then managed to shed it all the following year. Second cancer same thing, 8 rounds of AC-T and 8kg gained. I’ve actually just got my weight back down to 2019 levels. My Fitness app looks like a rollercoaster! It’s all about surviving chemotherapy however you can.

@dancingwhilstfacingthemusic well done and I hope your mouth is allowing you to eat and drink. I would leave the boob issue for now as while you are on chemo you won’t be healing normally. Have you had radiotherapy at all? That made my post lumpectomy boob contract and become denser and bobbly. But if it’s worrying you call the BCNs as they seem very happy to check these things out for your peace of mind.

Sending strength to everybody else on here. When you are going through hell, keep going!

Do they tell you on the day? Last 1 I had was 7 years ago had to wait for another appointment for results

@chasegirl my doctor told me on the day as it was obvious. Completely floored me. Was expecting “thanks for coming, we’ll be in touch” and got “we’re looking at cancer”. I don’t think that happens everytime though.

@chasegirl When I had my first appointment I was advised that it would be a long one as they do all the tests there & then. I had an ultrasound & mammogram & they had the CT scan from when they found the lump while scanning for something else. I thought they’d want another appointment for the results but the consultant said it was “sinister” and although they couldn’t tell the exact type until the blood test results were back he was certain it was cancer. He did give me the option of waiting until they knew precisely the type but I didn’t want to.

I was blown away but relieved that it was quicker than I expected.

I think I kinda of expect it to be obvious it's cancer tbh. I haven't touched it since I found the lump

@chasegirl and @TopOfTheCliff be thinking of you both as your dates approach. Waiting is the worst. @TopOfTheCliff ..your advice and support on this thread has been invaluable over these months. Thankyou x

I think it depends. Sometimes it’s obviously cancer and they tell you there as then. Sometimes it’s obviously not cancer (e.g a cyst) so they’ll tell you there and then. Sometimes it’s not clear so they biopsy it and tell you in 10 days time.