Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Mine starts the 16th, I can't wait although I won't be saying that once it starts mines only once every 3 weeks this time so although it's a stronger chemo I'm hoping it will be manageable with it being so long between treatments

Hi lacies xx
Well, another "non" appointment today - and I was having a really wobbly morning beforehand too!
So,
The extra bits of cancer found need to be sent off for typing, just to confirm that they are hormone receptor + and her2 -.
If they are then I have to decide if I want to go in the Optima Study

www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-predict-when-chemotherapy-needed-breast-cancer-optima

It will take about a week to see if the cancer is the same, then about 4 weeks after signing the trial consent forms to see if I'm getting chemo or not. If not straight to radiotherapy and tamoxifen. If I get chemo it's 3 lots of epirubicin & cyclophosphamide followed by 3 cycles of docetaxel (which makes your hair fall out).

I have loads of info to read, but I think I will go for the trial - if I decide not too then I can go straight to chemo and get started in about two weeks.....
Why could I have not been diagnosed before the trial and then I could start chemo and be none the wiser, but with this whole you might not actually benefit from it but it will be crap didn't help.... what if I decide to not bother with the trial, go straight for chemo and then when it is crap beat myself up for choosing to put myself through it, when I had the chance to not have it .... am I making any sense?????
Sorry for the long post !
💐💐💐💐💐💐💐💐💐💐💐💐💐

purple we could be starting chemo the same week. I think my bloods will be done that Monday or the following one. My chemo infusion day will either be a Wed, Thurs or Fri once bloods ok.

mrsp that sounds like information overload and an unenviable decision. Try not to look at the info tonight, get an early night and then read it all with a clear head if poss. Good that there are options though. Do they say if the trial is not as good as they hope if they would then give you chemo? What a head messer of a decision though as I expect whatever you decide, you will wonder if it was the right move...

Such a tough decision Mrsp! I was asked if I wanted to take part in a trial although there was no guarantees I would get it. When I was asked I had a 50%chance of the trial and 50% normal treatment. Basically a case of plucking names out of a hat to choose who gets the trial and who doesn't

I declined it as it would have meant an extra 3 weeks of treatment. If I had the chance again I would definitely go for the trial but that's only because mine came back after the usual chemo.

mrsp Does the hormone+ make the chemo more likely to be effective quickly? What difference does the HER- make too?
Mine are both positive (hormone & HER protein) which apparently usually react quickly to chemo. Hence my markers going in today incase the surgeon is unable to see the tumour when they do the op.

I might have missed an update, and apologies for my ignorance in advance, but where were these extra bits of cancer located? Was it in your breast tissue which was removed during the mastectomy? Or are there still a couple of cells left behind?

Not an easy choice though, whichever way you decide to go

They were in the mastectomy tissue, and to be honest I'm not sure how things would be medically affected!

Ah we'll be chemo buddies Noodles they've told me I need to get my bloods done 48 hours before but with it being the weekend I'm going to have to ring them. Last time I had my bloods done at the hospital when I was hooked up to the saline bag just before the chemo

Only problem with that is that if my bloods are good enough to have chemo that day I'll have wasted my time going through to hospital for no reason

Aren't good enough, not are

Sorry too bleurgh to say anything useful but sending love to all

I'm in bed eating ice chips and trying not to throw up bloody heatwave. I've really had enough now!

I hope you feel better soon Leslie sounds very uncomfortable.

When is it that you find out the exact type (& if you can then do the trial too) mrsp? I guess you are well monitored on the trial and there is always the potential that they can switch you to chemo at any point I guess. Tough decision though.

Is your hospital a long way from you purple? There are 2 I get treatment at. One is a 20 min drive, the other is just under an hour with traffic. My 1st 4 cycles are at the closer one, I am doing one week on, one week off, then I go to the bigger one for the other as I also get the hormone stuff too, that is one week on, two off, but for longer. I haven't read all the information yet as to what I am having, but my hair will fall out from the 1st drug I am being treated with. They think I should feel OK for the first couple of rounds, but it apparently has a cumulative effect. I feel quite naive in not really knowing what to expect & unable to imagine it really. I am never normally ill...

I am just back from the land of Peppa Pig tonight and am pretty crispy around the edges as was not as good at reapplying my own suncream as I was with the kids. They absolutely LOVED it - the pirate ship being the absolute winner, but boy was it hot. Very quiet too for a Saturday (probably thanks to the footie) so we had a fab time. I am tired now and my left boob is throbbing from the markers put in yesterday. Going to have a glass of (well earned) vino & then bed too!

have a good (cool) night everyone X

I was one of these annoying people who was as never ill either, I never even caught a cold.
My hospital is about 30 minutes away so not too bad luckily. My chemo also will be tougher the more I have and my hair will probably fall out on the first cycle. If it's anything like my last chemo it basically feels like having a constant hangover without the headache and without the fun part of getting drunk first

Glad the kids enjoyed peppa pig world. Hopefully you'll have worn them out enough so you get a decent lie in tomorrow

Hope you feel better soon Leslie and have a decent fan to cool you down as tomorrows supposed to be even hotter. We have a JML arctic fan, they work pretty well and they aren't too noisy either

I have started and stopped posting about this lots.
I don't want to hijack thread but could use a hand hold.
I noticed the feeling of leaking (mostly while exercising) and am post menopausal so dismissed but then I noticed some spotting in my bras.
GP, then referral to breast clinic very fast.
Mammogram good. But ultrasound did show a blockage in duct.
Had biopsy.
Biopsy benign but this blockage can be pre-cancerous.
Mine is very close to nipple-normally they would do another biopsy (they are saying for preventative info) but positionally it would result in nipple collapse/disfigurment. so Dr has said I need to go back for an op to remove blockage.
Any experience/advice??
So grateful as not very comfortable discussion IRL with very many ppl-

Hello Mumis, sorry yo have to be here but hopefully not for long until you're all sorted and we can wave you away

There's a couple of ladies on here with breast cancer so hopefully they'll be along with some practical advice when they see your post

The waiting around not knowing is definitely the worst part about all of this and the sooner you get a definite answer and a treatment plan in place the better you'll feel

IF it is cancer (and there's a high chance it isn't) the fact that they've caught it so early is a good sign. Hopefully with it being pre cancer they'll be able to get rid of it completely with a small operation, they could even get it all out when you have the operation to remove the blockage

Do you know when you'll be having the op? Feel free to ask as many questions as you like, someone on here should be able to help you with most things

Hi Mumsie sorry you are here, but as purple says, hopefully not for long before you can be waved off.

I have breast cancer, it sounds like you have caught whatever this is in the very early stages thankfully. It also sounds like it is contained in the milk ducts (but a pain with its position) so hopefully will be easy for them to deal with, perhaps with a wonky nipple at the end of it. Any tests like this are frightening though, and the waiting is the worst bit, I have only just had my diagnosis and am currently getting a full work over before I start chemo. Mine is a grade 3 tumour which is also in a lymph node and everyone is very positive about the outcome.
I don't really have advice as it was literally about a month ago that I found my lump. I know 9 out of 10 lumps in the breast are not anything to worry about though, and now this has been found, they will deal with it quickly. If you are the 1 out of 10 person, the care is absolutely fantastic. Best wishes, I hope you find out soon what they plan to do and that it turns out to be nothing sinister

at everyone.

I've not been around much, as I've been a bit overwhelmed by the Cancer-Life, and also I start to feel guilty on these threads that I don't have the mental energy to respond to everyone separately . (Anxiety-related, I think).

I'll catch up later, but just wanted to let you all know I'm thinking about you.

I had my third round of chemo on Monday. It was a different treatment, as I was terribly allergic to the first, so I was kept as an inpatient. Thankfully, I didn't have a reaction to this one, so onwards and upwards!

to you all X

Good to hear from you Miles, I was wondering how you were getting on

Fingers crossed this chemo is better for you, are you having it weekly? Do you have many more rounds to go?

Don't worry about keeping up and replying to everyone. But please do keep us updated with how you're doing. This heat is horrendous so I hope you're managing ok

Miles don't worry about replying to everyone! I'm sorry that put you off posting yay for no reaction to the new chemo! Does that mean you can have the next dose as an outpatient? I hope the side effects are minimal

mumsie sorry you'll need the surgery. I hope it goes smoothly. But good news that whatever it is has been caught early if it is pre-cancerous :)

noodles glad you made it to Peppa Pig world!

purple thanks. Luckily I have a pretty good fan - I bought it just before the heatwave as my previous one was worn out. Thanks for the recommendation though :)

Sorry too frazzled to reply more but I'm thinking of everyone and hoping you haven't melted I'm feeling a bit better today though. I'm even out of bed. Just lying on the sofa in front of the fan, but nice to have a change of scenery!

Hey ladies hope you've all had a good weekend in this heat. I felt absolutely crap yesterday but better before. And tomorrow morning I WILL TAKE MY LAST PILLS!!!
I hope I can start to feel normal soon. I'm fed up of being tired and sickly all the time.

Good luck with those of you waiting for apps and answers, that is the hardest part I think.

Glad there's some bad name checkers. Please stay here to keep me company I don't remember who you are but I know you're there

Hey Miles good to hear from you. I hope you don't react!
Leslie good to hear you're feeling a little better. Hope the upchucking has ceased and you can keep something down...
Hello everyone else

I am melting in this heat. I hate it. I can't do anything except leak sweat.

Here is some idle entertainment - my before and after front garden pics. I am pleased with the result although I'm sorry about losing so much green stuff but I just can't cope with it. I think I'll rename it the lido and put some sun loungers and a big paddling pool down...

I'm considering renting out a parking space as I am very close to the station.

I'm not pleased about the digger making significant cracks and damage in my existing driveway. I paid everything immediately so I have no hope of any rectification work.

I'm having a few days in Cornwall! Down in St Agnes in a friend's holiday home. It's lovely to have a break but my solace and reassurance lies at home, where I feel safe.

Wishing everyone a good week.

TQ don't ask me why but I thought I'd see a pic of your lady garden when you said front garden please don't boot me out for having a dirty mind - it looks lovely and I was relieved to see what you meant

ROFPMSL Dulce . No-one has been interested in my lady garden for some years....

Happy last pill taking day Dulce! Hope the effects wear off soon and you start feeling better

Ooh TQ that looks lovely lovely, it looks loads bigger than it did. Hope you enjoy your break away. Although it's nice to get away I'm like you and feel better being at home with all the home comforts. No bucket list of travelling around the world for me

I'm trying to get my house decluttered and tidied up before chemo on Monday but it's too bloody hot to do anything

Good morning all

noodles good luck with your bone scan

Dulce yippee!

Have a wonderful trip TQ :) sorry about the damage driveway rental seems like a lucrative business!

Still bleurgh here, though much better than I was. Keeping sips of drink down now :)

purple oi! Don't overdo it. Far too hot to be tidying :) make sure you take lots of breaks to put your feet up and enjoy your last week before chemo

Dulce. Hope you start to feel better soon. I'm definitely feeling more human now but still tired which I guess is to be expected. I'm not very good at being sick so a bit frustrated not to just be back to normal straight away but as DH points out I did have major surgery and some fairly horrible toxic drugs so not really surprising.

Noodles glad you had a great time at survived Peppa pig world.

Leslie hope you feel better soon.

to everyone else.