The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

I'm new to this and have been trying to do a crash course in cancer terminology (last night only), and the rest of the time sticking my fingers in my ears and singing lalalalala.
I've been trying to eat the elephant in small chunks..... surgery check chemo check radiotherapy check... but this is really really bad news all round isn't it?

No it is not very bad news but yes it is not good. The terminology : ditch it! Just let your doc and BC nurse brief you and ask if you need to understand. You only need to know what they have planned for you and take it one thing at a time. I had a small tumour but MANY lymph nodes involved which came as a massive blow to me but i decided i would take thungs slowly and not go ahead of myself. Trust me chemo is doable and will be over..What you need now is to talk and to have people you trust around you ..as soon as surgery is over we will go on to think about the next thing.Many many here have been where you are and. We are allhere to support you.

Thanks Royal. I'm down in my boots at the moment. The radiologist said at diagnosis that the tumour was 1.2cm (26th June), Surgeon said it was 2cm at initial consult. (2nd July) Now it's 3.5 with no clear margin... and then I had to wait from beginning of July to mid August for surgery
Now surgeon@s on holiday and all the time I'm thinking that the fucking thing is still growing fast as it's grade 3 and I haven't got clean margins.

Hi Tutti, it might not be the news you were hoping for but it's not all bad. Your team will have a plan sorted for you shortly and once they get clear margins you can rock on with the chemo. I was where you are less than a year ago- positive nodes, a largish tumour (4.5cm) and I've got through it all and out the other side now. Chemo goes fast! I think you are right to just face each phase as it happens and don't try to think ahead too much. Best wishes.

Thanks Freya. I was thinking that I'd get my chemo dates/consult today but I'm back on the surgery/ heal cycle.

Sorry lacies, mother has just arrived, back later xxx

Sorry to hear that Tutti
I am not very knowledgeable about this cancer malarkey but the others here will no doubt give you good advice.

I have no idea what size my tumour is other than 'big'. Before they discovered what type it was I was initially told that it would have taken around 10 years to get to that size . I have no idea how many nodes are infected either as the lymph node biopsy was cancelled. My tumour is aggressive and fast growing but the chemo has already started to shrink it and hopefully chemo will zap yours quickly too. I have found that this journey has so many twists and turns that you just have to keep on going and I cope by taking each day as it comes. Sorry that you are low at the moment - we'll all be here to support you

Hi tutti, I'm sorry the news wasn't what you needed to hear. It's perfectly fine to stick your fingers in your ears and sing la la la. You also don't have to understand all the terminology if you're happy to just understand what's happening to you. Your cancer your way. I'm sorry you have to go through the surgery again, that's a thing you could do without but it will all come to an end and life will pick up again.

It's time to be a little bit selfish and put yourself first for a while. If people offer to help give them a specific task or a lot of well intentioned people all end up being a bit vague. Don't be told how you should feel or what you should do. Whatever you need to get through it is fine. Stay away from Google, use your BC nurse for questions or the breast cancer care charity is also brilliant if you want to talk to a real person. We are all here too.

I wish Amber was here, she would have something very calm and sensible to say.

Tutti it's a pain that you have to have more surgery but don't worry too much about the nodes, it just means they are doing their job. Lots of people who have nodes affected are still around to tell the tale it just means that they will throw everything at it. I know it's not the news you wanted though so

Hi Lacies. It's not the nodes mum . I knew that two had already tested positive at biopsy. I think it's more the Grade 3. However I have now hoicked my big girl pants around my ears and just have to accept that's it's going to be tougher than I first thought.
Elephant is tough even in chunks.

Mine was grade 3 and stage 3 I think
It is hard and the waiting around makes it harder, hope your mum gave you some support

Grade 3 cancer usually means that the chemo will be very effective, as chemo kills faster growing cells more easily.

Mums got Vascular Dementia and Dads got Alzheimers mum but the carer brought her out for a visit as I've not been able to drive. They give me something to worry about other than the cancer
Yay Fresta that's brilliant thank you. Now all I need to do is get this surgery out of the way so I can start kicking this bitch into touch.

Tutti, sorry you didn't get better news but as Fresta says grade 3 cancer is very thirsty and soaks up chemo. In some ways the lower grade tumours can apparently be harder nuts to crack. Amber (amberlight?) has written some great words along these lines on this thread in the past so if you felt inclined search for her posts and you'll see her take on the situation.

It's a pain they didn't check receptors but at least if they're going in again they'll have another sample to check (that's if they've thrown the original away). Once they've got all that info then they can really tailor your treatment to you.

Sorry to hear your parents aren't in great health that must be an extra worry for you.

Minty, now I'm over the shock, and with all of the great advise, I'm feeling positive again.
The ol' folks have been as mad as boxes of frogs for at least twenty years, they both had very significant brain injuries. It's just a bit worse as they've got older and in April/May respectively they were diagnosed. I was diagnosed in June so we got a hat trick !!!! They're in sheltered accommodation and have a great carer thankfully.
I got the OK to drive and swim today, so a bit of normality until the surgery (which may be as early as Wednesday).
Thanks all of you. I know I'm rubbish at this posting lark, however you've really saved my bacon today.

Tutti - I was stage 3, grade 3 and nearly three years on I'm still here.
Saw my lovely (and about to retire) onc today. No lymphodema, just to keep an eye on the arm.
She asked me to take part in a trial of a new protein inhibitor which is taken alongside a hormone inhibitor. I'm on exemestane. The first part involves them getting my tumour out of the fridge and analysing it's genetic make up to see how much risk I have of recurrence. Scary, but drug trials are really important for all of us, and our future selves, so I think I'll do it!
One of these days I wish Amber was around with her scientific mind!

That's really encouraging weebarra and brilliant that there's no lymphodaema.
I'm just searching amberlight's posts as my scientific mind is in hiding at the moment. I think once I start to research the science and stop being in denial, I'll start to feel a bit more less scared.
I have had 5 out of 7 aunts with breast cancer (paternal) side, but not involved with their disease as they're not in the UK. I also went for genetic counselling about 10 years ago and was given the all clear. I am SO angry that I wasn't put on the high risk pathway with annual screening; as I should have been, but more than that, I am scared more for my DD. I've been all light and breezy and uber cheerful on the basis that if I let go, I might go ballistic .

Please God with people like you (and me if it comes to it), undertaking trials then you/we will benefit and so will all the other women that follow us.

Your tumour is still in a fridge weebarra? I never knew they kept them!

Tutti that sucks, I totally understand how you're feeling. My tumour was originally grade 2, 1.5 cms but when they went in it was grade 3, 3cms and nodes affected. It's just such a bummer you have to have more surgery. I also asked for genetic counselling last year, massive history on all sides, but they said I had no risk! And here I am, 39 with breast cancer. However, funnily enough mine is not genetic - I delayed any treatment once diagnosed while I waited 4 weeks for the genetic result. Still though, one can't help but feel that an extra mammogram here and there might have changed things...

Anyhoo! Enough about me. You're going through a shit time, and you have a lot to process. Take your time, allow a wallow now and then, you're only human. And remember, no matter what the terminology is, there's no such thing as a shit question.

Sorry for all my swearing, but fucking cancer brings out my eloquence

FlyChick This sounds awful, but It's great to hear that others have had tumours that appear to have "grown" as quickly. The surgeon said it was just errors/inaccuracies in measurement and not growth. The consultant said that they can only screen for about 1.5% of cancer genes, so that may well account for our all clear.
How is your treatment going or are you out the other side yet ?

I'm just reading the old threads; and everything that I've been thinking someone else has been through.
Constipation for example (thought it was just me after the op).
I have a fridge full of lactulose or something and a lorry load of Dead Sea Salt and I'm going to fly through this next surgery.

Hi Minty I'm two thirds of the way through my herceptin so just 6 more. Looking forward to it finishing now but overall it hasn't been too bad and now I'm taking glucosamine things have definately improved.
Tutti sorry your results were not what you were hoping for. A year ago I had no idea I even had breast cancer and was diagnosed with stage 3 at the end of September. MIne was her2+ as well so had chemo first which shrank the tumour massively and as others have said chemo is totally doable and there is a huge amount of support to get you through it. I remember googling all the time and nearly drove myself mad and in the end decided to take it one bit at a time and I can't believe how fast it has all happened. I was discharged last week which if I'm honest I feel a bit numb about because although everyone seems to think I should be leaping about with joy I think so much has been packed into 11 months that I'm having problems getting my head round it now that its stopped.
Leslie Hope you have a great weekend, I'm going to try and catch up on some sleep and eat some nice food as a treat.
Waving to everyone else on the thread.

Rover. Really great news, but you are bound to feel like a ship without a sail. It's so very time and mind consuming and it's eaten almost a year out of your life.
It will take time; you're probably shell shocked at the moment.

Wee glad it wasn't lymphodeoma I'm sure I've spelt that wrong but never mind ! Is your tumour really in the fridge ?? Is everyone's 😳

Rover the end of treatment is a scary time, very normal to have mixed feelings and not be jumping for joy. Be kind to yourself

Rover that's interesting that you have been discharged with 6 weeks of herceptin to go. Will you have any more echos?

Sorry 6 herceptin is 18 weeks isn't it.