All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

I have non Hodgkins lymphoma. Part way through chemo which is working according to scans but I also have radiotherapy to follow. Children are nearly 1 and 5. Sleeping is also an issue for me particularly around the times I have chemo, the drugs affect sleep patterns. I try now to only go to bed when sleepy - I'm constantly tired but not necessarily sleepy and have been known to lie awake for hours.
Try to take each day as it comes. One of the hardest things is dealing with other people's opinions and views on how you should be feeling/reacting etc and quite frankly it is only you who knows exactly what it feels like. Those who have been through it can empathise better. I find it easier to steer clear of the dramatic types who focus on what they feel like rather than you!

Oh yes, the fun packed selection of SEs especially things like constipation, diarrhoea and nausea ... often all at the same time. Never shown on those adverts for cancer charities!

Greetings, lovely people of the Tamoxithread. Waving to all, and especially to the new people. It's mind bogglingly overwhelming, the 'C' word. Guaranteed to make most people go into a spiral of funeral-planning and disaster-imaginings.
But most people who have breast cancer (and several other types) will go on to live long and good lives. 95% success rate on early cases now, on average.

Sleepy, that's not the set of results you wanted, for sure. Hoping your team are able to get you into a really good immunotherapy trial or similar at this point? Sending love and hoping you are able to get really good support from your team at this point.

General info: (to save people delving back in threads)
Wigs - I went to a chemo wig specialist. It was well worth it. She knew just what would suit. And was able to advise on cut, wig caps under it, etc. I ended up with several. And some scarves and hats. Loved the wigs. Very personal thing, though. Hair fell out about three weeks into treatment, and pretty much over a very few days, which is a bit of shock.

Survival: If it's just in the boob, it cannot kill you. Treatment is annoying and tiring... but cancer can only kill if it gets into major organs of the body etc AND creates chaos in there. Being in a boob is not in any way lethal. It also can't kill anyone from being in the lymph nodes. Their job is to act as a 'safety net', so they catch it and stop it spreading (more or less). It now can't really kill anyone from being just a bit of it in the liver or just a bit of it in the lung, either. Treatment is now so good that they can zap smaller areas of it, and turn it into a long term nuisance, for most people.
Even the most rudely behaved cancers can be kept under control for years, for most people.
"Grade 3" cancer sounds scary but isn't now. It means it drinks a lot of chemo and dies horribly. Good.
Stay away from Google. Stuff on there is often total rubbish. Even the professional cancer sites will usually only have general info on there. It will tell you nothing about your own set of odds. And, with the latest treatments, they are so new and effective that they are likely to change those odds for the better anyway.

If cancer really has caused big difficulties, the latest combinations of targeted radiotherapy and immunotherapies/chemotherapies are doing wonders. The specialist hospitals now have a lot of options that the local hospitals do not. Always ask for a referral to a team that specialises, for tough situations. And ask for a genetic test on that cancer so they can tailor the treatment that works the absolute best.

PS, no further forward with waiting for my own results. [I had breast cancer five years ago, but am one of the very rare cases where the cancer went...but the radiotherapy caused damage. The damage didn't show up for four years. It could be an 'atypical lesion'. Or it could be a sarcoma. Or something else. Currently, the big specialist hospital is staring at the surgery WLE biopsy to give a second opinion. Don't know when the geeks will stop their geekery yet, and let us know what it is, or isn't. ]

Hi everyone. This thread seems very busy at the moment, it's a sad there are so many newcomers, but welcome anyway, I hope you all find lots of help here.

Amber, hope you get your answers soon, you seem to have been waiting ages.

I had my pre-op today before my WLE and lymph node clearance on Thursday morning. They didn't want to know much as apparently the pre-op I had six months ago before my sentinel biopsy is still valid, although how on earth they can assume I'm still as fit as then after 8 rounds of chemo I'm not really sure? I'm first in apparently, and need to have a wire put in first to guide the surgeon to the site of the cancer as it's completely unpalpable now. Has anyone had experience of this?
Not looking forward to it but looking forward to getting the cancerous bits out and on the mend.

I felt really guilty earlier as my parents were planning to visit me in hospital and I had to ask them not to. I just don't want visitors, it's bad enough being in there without having to try to look healthy and not worry them even more than they already are. I can imagine the conversations they will have about how 'shocking' I look. Mum is insisting on coming round next week as according to her my biggest job will be keeping on top of the washing and ironing, if that's my only worry I think I will be OK. In her world DH can't manage a little bit of ironing so she's coming to do it all .

Aternoon all, thanks for that amber just helps to put everything back in perspective when it's all so full on day to day.
fresta I had a wire guided lumpectomy. The wire bit was uncomfortable but not hideous. My lump was top/armpit quarter and I had to lay on my side-ish while they used an ultrasound to guide the wire in. As usual the anaesthetic was the only painful bit, then it's more quite a strong pressure/pushing sensation but not pain. They roll up the spare wire and tape it to you in a glamorous way. Took about 30 mins or so IIRC? A nurse held my hand above my head (it's an arms up job) not because I wanted her to - I think it was her job in case you move or reflex bop the doctor on the head!
I had my PICC fitted and a look at the chemo rooms today. I didn't cry! This is excellent progress for me . My arm is now really sore but assume that's from the procedure and not because my arm will fall off .
Waves to everyone else - DD is just back from Girls Brigade and needs feeding....

Hi fresta I had the wire thing too - almost exactly the same as how pepper tells it but I also had a mammogram straight afterwards to check it was in the right place. I still had local anaesthetic in my boob so it didn't feel uncomfortable. Good luck for Thursday.

amber fabulous post will try to keep it in mind when I am having a particularly busy "planning" party 😊. fresta good luck for thursday, I had wire guided excision and the most painful thing was the local nothing after that but a very fetching very well taped dressing amd mammoplasty afterwards.
pepper how was the picc insertion I have mine on 26th and am starting to ferret away in my brain thinking of it!
Well 6 days post fec although exhausted starting to feel abit more normal, nausea seems to have settled, injections going OK. Only thing is I keep having odd prickles on my head and am assuming my hair is getting ready to fec off in the near future! Ordered some headgear from anna bandana and getting wig Wednesday grrrr.
Hugs and waves to all x

No idea where mammoplasty came from should have said mammogram, flippin auto correct 😀

Hi helly picc was fine, local injection, I don't watch the needle bit and it did feel rather odd as it went under my arm, (curious sort of portable ECG machine rested on my chest) but I watched them insert the line on the screen, so pretty cool. My arm is aching now, and I regret not washing my hair this morning before I went as I've had to order a shower cover for it - DH is going to help me clingfilm it tomorrow! I've taken some ibuprofen for the arm ache but just read in my steroid pack that they are incompatible so won't take any more. Steroids start tomorrow.
I'm getting a little nervous about Wednesday now... we're all worried about the bit we haven't done yet

Meant to ask - did you cold cap helly ?

fresta I had my preop last Weds and am booked for this Weds for WLE and SNB with the wire guided bit too. I think I'm somewhere near the end of the list though from what I've been told so have most of the day to think about it.

pepper thanks i will keep fingers crossed inbthst case. I didn't cold cap, thought long and hard about it as my 10 yr ds is very upset at the thought me losing of my hair. I couldn't really bear the thought of the extra time, discomfort to keep 50% ish of straggly, thinning hair that you can wash once a week when I am used to daily wash/blow and 7 weekly cut and colour , admire those who do it just wasn't something I felt I could cope with whilst feeling crap as well. X

Good morning all.
mrs i am thinking of you today. I hope you get good news.
Rover and Fresta, wishing you both a smooth operation and a speedy recovery. Let us know how it all went afterwards.
Amber, I hope you get giod news too. It does seem to have taken quite some time this staring!
My radiation burns are slowly healing. It has been a tough experience for me I must say. Not that I was in any acute pain, but the skin reaction did depress me, even more than the chemo side effects.
Here is wishing you all a fab day ahead.

Thanks Royal, going in about an hour. It's not so much today that's the issue but the wait for results. They say 2-3 weeks but I'll call my nurse earlier to see if they're through.

Glad to hear you're feeling a bit better, I know I would have been feeling very much like you if I'd had five weeks instead of three. It's not always the easy.

Hello to everyone else.

Yes mrs you are so right. It is definitely the waiting that is tough, always the waiting. I hope your nurse manages to reassure you as soon as possible.

Mammo done, she said it will be looked at this afternoon and it's just the admin that takes up to three weeks. Pretty disgraceful really. Have been advised to phone on Friday for results.

Hi everyone. Hope everyone is ok. I've just got back from hospital for my pre op and also for a liver scan and the results of my chest x Ray. All looked normal which has cheered me slightly although I do still feel a bit down in the dumps and shell shocked really. I suppose you have to cling to the little victories. Consultant said that the tumour is a fairly big which is worrying but because my boobs are big I will have a wle which he said would be similar to a breast reduction for me so he could be as certain as possible of getting clear margins. Just have to hope lymph involvement is minor. Sorry to not be much support for anyone else, still trying to understand exactly what's going on!

Mrs, it is a disgrace you are so right! They should know better about how this unnecessary waiting affects patients. I hope you get god news soon.
Rustcohle, don't worry about supporting others now. You will have a chance and turn:)
I recall someone here saying they found our after surgery that their tumour was actually smaller than previously deemed, so your may or may not be as big as they say now.
Now that you are on the treatment track hopefully you will calm down more. It is great that your liver tests and X ray are reassuring.
Take one day at a time..

Rustcohle, I had a WLE and my lump turned out to be smaller than they thought from the scans. I'm not sure if they could see it was smaller during surgery so removed less tissue or they removed the amount of tissue planned but found it was smaller in the lab, therefore giving me greater clear margins. It's very positive that your scans were clear though, just look after yourself for now.

Good luck tomorrow rovercat and Thursday fresta with your operations.
Glad you can ring for your results on Fri mrs, so much better than a 3 week wait. And royal, hurray for healing after rads, it sounds very very grim.
Rust, pleased the scan results were positive and you got some reassurance, just get through one thing at a time and try to concentrate on yourself at this point.
I got my wig today! Really pleased with it actually, the lady was lovely, helped me with hats and to tie some scarves I'd bought. A lot less worried about hair loss now so if the cold cap is too miserable then it's not the end of the world.
In other news, my boss asked me to join a call today (even though I'm signed off this week and next) as it was "important". Turned out to be job losses, roughly 1 in 5, now I have to decide if I want to put myself forward for voluntary redundancy, wouldn't even have crossed my mind 3 months ago, but now, I wonder if that would actually be a good thing. Argh.
First chemo tomorrow.....
Good luck to everyone else this week with procedures and results :) (amber, when will you find out - have they any idea yet?)

Good morning all. Pepper, hreat bews re the wig experiment:) it does help when you get that sorted. If the cold capping works, then it will just be another look for you
Hope your first chemo goes well. Try to keep yourself entertained while they do their job. I used to watch stand up comedy on my I Pad!
My skin is improving thanks to the absolutely incredible coconut oil I have finally got round to using after having been advised to do so! For those with rads coming up, you must try it even before the reactions start. It has been miraculously wonderful. Almost like some magic potion. Don't get me wrong my skin is not suddenly Bo Derrick clear and healthy, but the healing process has been speeded up since I started using the oil and my skin is not tight or scratchy anymore, unlike with the chemical creams they gave me. The only secret is to use virgin organic coconut oil, as the magic is in the raw product not the refined kind. I even used it for DS2's recent eczema flare and Lo and Behold it has gone! I am going all coconuts from now on:)

Hreat bews?? Oh my! That should have read great news!

Hi all. I've just spoken to my breast nurse who said they had had some more results from pathology and the cancer has not developed under the influence of hormones but they are awaiting the her 2 result. I didn't think it could get any worse but I'm terrified that triple neg has less treatment options and a worse prognosis. Anyone have any experience?

I am going to be back on the capecitabene after they have got my lungs working properly again. They don't seem to have a clue why I can't breathe and are trying some predisolone which has done nothing so far but make me feel jittery.

Sorry to see so many new people joining the thread. You all have my warmest sympathy. I do hope you will all be able to crack through treatment and put it behind you.

I'm back at home after my op yesterday and very relieved that my lymph nodes are clear. Currently just having paracetamol every 6 hours and at the moment it's discomort rather than pain so hoping it stays that way. For everyone who said do the exercises you'll be pleased to know that I started doing them this morning! Hope everyone's having a good Thursday and wishing fresta a speedy and painfree recovery.