Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

How is everyone after last night? We were ridiculously late home, 3.30. Having a very slow day and trying to convince myself some fresh air would be a good idea, it looks very cold out there though.

I got rather upset after midnight, wondering how many more New Years I will see, which is very silly but it all gets to me a bit sometimes. I'm heading back into the hospital system in two weeks for a scan then six monthly check up in March. People are starting to talk about summer holidays and again I don't want to think about it until I've had the checks again.

Royal, I hope the uti clears up so you have no more delays.

Lily, hope you're feeling a bit better after the transfusion and that you managed to see a bit of Yorkshire in the dry.

Mrs I think we all know where you are coming from. It is so hard to keep negative thoughts at bay, and I was a little upset yesterday.

We have booked a summer holiday in July to Centreparcs but I don't know if that's a bit optimistic. I should be finished chemo, but not sure yet if I will need radiotherapy. I'm not sure about using the pool but I can do other things.

My treatment plan isn't finalised but the oncologist is starting to gather all the information she needs. She hasn't decided which type of chemo yet. I'm going to be asking loads of questions on here when chemo starts. I kind of wish I wasn't deferring my uni course because I kept my sanity before Christmas by keeping busy. I'm already finding the relative quiet of Christmas and New Year hard in a way that I wouldn't if I was working or studying.

Royal I also hope the UTI has cleared up so you can move on from chemo.

mrs thank you for your wishes.
I am sure many of us will have thought the same when the clock struck midnight. I know I have been pensive about the future and how long I will be around too. These thoughts are inevitable I guess,but they do make me feel sad too. Also, the things my DC say so innocently, so unknowingly, trigger a lot of sadness inside of me. Why just last night as I was tucking them in, DS2, who is 7.5 suddenly mentioned death and said out of absolutely nowhere( no talk of death in the bedtime story, no provocation at all) " mummy I want to die with you when you die". Now in other circumstances, this would not have bothered me and I would have considered it one of those things children say, but I felt like I had been struck by lightning and just wanted to jump up and run away or shut my ears. However, being "the mother" you end up saying something wise.

I do hope mrs that your check up is nothing but good news with no concerns. Do keep us posted!

I do apologise that my post isn't uplifting or if it hasnt helped.

Thank you mysillydog I do hope so too!
I am sure them discussing with you which chemo you are to be given is better than not receiving any clear information. I hope all goes well and things start to move along.

Amber- glad your hot flushes are diminishing now. I hope to also have a 'doable' menopause.

Royal- hope your chemo isn't delayed again. Although I haven't read any studies about a delay in chemo am sure that teams would be a lot more concerned over any delay if it had a big effect.
Don't apologise about your post not being up-lifting. What I love about this thread is that we can talk about how we feel, whether that be good or bad. Sometimes you just need to get things off your chest and this is a safe place to do so. Children do come out with things that make you draw a breath don't they! I found that really hard and, like you, try and say the wise things to them even if you are feeling wobbly inside.

sillydog- I hope you get your treatment plan soon.

Off to do the ironing as boys are with their dad. I know how to live on New Year's Day!

Happy New Year to Everyone, old and new.

Marshy - in answer to your question a few pages back. The options I was given six months ago were:

1. 6 month hysteroscopy to check my situation hasn't changed. They mentioned 6 and 12 month hysteroscopy, but I'm not sure whether they would this indefinitely
2. mirena coil - counteracts the situation, but not good in my situation due to the type of bc I had
3. hysteroscopy, - to remove womb (and cervix and ovaries?) - as there is still a risk of womb cancer.

I'll wait to see what my results bring.

Ah....fingers crossed for those results then river and for your upcoming tests also Mrs.
I had a teeny bit of a melt down too last night. About nothing really..... not a fan of NYE.
Me and dh are off down to Devon tomorrow just overnight to see my sister. Were staying in a nice b & b. I'm determined to go to a beach and see the sea.
Will it ever stop raining do you think?

I'm laid in bed having a huge panic. Feeling my breast and it feels different again, no longer painful but a big area that is hard and lumpy. I can only feel it laying down. I'm not sure it's mobile anymore and it's drfinitely not smooth, that's bad isn't it. I'm so scared. If that's a lump it feels huge.

earthyambitions when i first found my lump and until it was removed, all I could do was focus on it and when I could muster up some courage to feel it again, I could swear back then that it was massive, and yet when they measured it was less than 2 cm. we do tend to work ourselves up about these things! Hopefully, it will not be as serious or bad as you think.
Have a good day all.

Earthy it's horrible being where you are now. Waiting and worrying can make the imagination run riot. It's highly unlikely that anything significant has changed in your breast in the short time you've been waiting. Breasts can be lumpy for very innocent reasons.
Have you got something distracting to do today? Hang on in there.

Happy new year all.
Dropping in to try to be a bit more cheerful before I go back into the dark cave following FEC no 4 on Thursday.

Earthy, the waiting is gruesome. I think I spent a fortnight with my hand clamped under my armpit trying to identify the exact nature of my lump; goodness knows what my colleagues thought! But you will come through this limbo time - distraction is the way forward and there should be answers soon. I'm thinking of you and hoping for the best.

On the subject of distraction, Sherlock helped take my mind off things last night - confusing enough to occupy thoughts and silly enough not to be upsetting.
And on a frivolous note, how come I am now a boiled-egg head yet my forearms are still defiantly hairy-gorilla-like? Humph!

Mysilly, really hope you get a full plan soon, and Royal, fingers and toes crossed for no more delays - having to postpone is a major fear for me too.

The warmth and wisdom here helped me through to the end of 2015 and I'm so thankful to all of you as the new year starts. Very best wishes everyone.

Thanks all, finally fell asleep about 3.30. Night times are hell. Feel a bit better this morning and the lump feels the same as before I think, just got myself worked up. It's feeling a bit tender again now from all the poking which is annoying because it wasn't hurting at all yesterday. Thanks for the support, I realise I probably sound ridiculous but I am anxious about my health at the best of times, this has just topped me over the edge I think.

Dinster - your boiled egg, gorilla reference made me chuckle this morning.

Dinster same goes for my legs! Stubborn shaggy hairs defied the chemo! Hope the cancer isn't as stubborn

Today is clearly my not coping day. Can't stop crying. A whole section of my breast is really hard to touch compared to the other with this lump which is so much bigger than others have said, grape sized at the least. I ache from prodding and poking. I just don't want to die. I don't want to leave my beautiful daughter and lovely husband. I don't want her to have to deal with any of this. I can't stop googling and reading others stories, every positive is a wave of relief and every cancer story, well. I have never been so scared.

Earthy, you need to stop googling. Google is full of total rubbish. Almost every single treatment for breast cancer has changed in the last year, and almost none of the research on that is on Google. You might as well be researching the likely length of life of cancer patients 2000 years ago.
It is impossible to die from cancer in a boob. Trust me on this, it's correct information. You have more chance of dying from an accidental blow from a passing elephant in the high street than dying from a lump that is in your boob. Not even a big hard one with wibbly edges. The shape, size and type of lump in the boob makes no difference at all, really. You'd know if you were about to cop it, because you would already be really ill and already being looked after by a whole team of specialists in a hospital. And it would be because you had cancer in lots of other places, not a boob. Hope that helps a bit.
This is the worst bit, the waiting bit. Our imaginations run riot.
for you, I think.

Thank you, it really does help. Especially the elephant bit, I will remind myself of that. Thank you so much for taking the time to reply.

Hi everyone!

Earthy, I was the same as you, I poked my lump until I had a big bruise, the worrying is the worst part. Try not to google.

I too still have hairy arms! But I am very grateful I still have my eyelashes and eyebrows- even if they fall out with the next treatment at least I kept them for Christmas

Today is the last blowout for me- off out with family for fish and chips and then tomorrow is the beginning of a healthier eating plan- I can't believe I have gained almost a stone in the last few weeks- disguising baldness is bad enough without having to disguise extra chins and hamster cheeks! I'm blaming it on the steroids!

To be clear, it's not possible to die of primary breast cancer itself. Primary means 'in the boob', basically. On average, 90-95% of patients will now have treatment so effective and fast that it doesn't recur. And they go on to live a normal length of life.

It is possible to die of secondary breast cancer. But it's much harder to do so, now. Secondary means the cancer started in the boob, and years later on managed to get somewhere distant like liver, bones, lungs, brain. Not all breast cancers bother. Some just stay put, no matter how many years they have been there. Some try to sneak out, but the lymph nodes under the arm act as a sort of 'safety net' and grab the cancer before it can do so.

Secondary does not mean 'oo eck, I'm a gonner!' (To use an expression).
Secondary (sometimes called Stage 4) means a new sort of blinking inconvenient.... where you have very regular tests and scans to check what's what, and teams start using new combinations of stuff to halt it. People can live with cancer for years and years, carrying on with pretty normal life. A bit like living with diabetes. Annoying and inconvenient and comes with some side effects, but manageable. Meantime, they wait for new better answers and therapies to happen.

Teams are very used to slowing much cancer to a halt..and can even reverse it completely in the other areas of the body, in a reasonable number of cases. Lots of very brand new stuff coming out all the time for this. Combinations of chemo with highly specialised radiotherapy. Zapping it with heat. Zapping it with cold. Using immunotherapy. Understanding how gut bacteria can work in combination with chemo to have a better effect. (Strange but true). We're seeing 20,000 new science papers a year for breast cancer now. It's increasing faster and faster, with more and more 'aha' moments. (And more reading for geeks like me).

Are there total guarantees? Nope. Life never has those. But this is an improving future for people. And I'm really hoping that the future will be improving every bit as fast for other cancers also. With any luck, the science for breast cancer will end up solving lots of those too. We're seeing links between different sorts. Drugs invented for one sort of cancer often end up working for other sorts too.

It's never a good feeling, a cancer diagnosis. It's very normal to feel terrified. But with a good team and good support, it's doable.

Amber "like"

Thank you so so much for such reassuring posts, that has helped calm me down so much. Thank you.

Hello all, old and new. Just thought I would drop in and wish you all a Happy New Year.

It's now more than two years since I first came across this thread. Time certainly does fly by!

Just waiting for my annual mammogram appointment to drop through the letterbox. Not had any major issues since I completed treatment in June (still taking Tamoxifen) just hot flushes mainly although bearable in this cool weather. I've had about four sessions of laser tattoo removal to be rid of radiotherapy markings and so far results are pretty good, two have almost gone completely. Will hang around and offer support if I can.

Mummywheel, would you explain about the laser tattoo removal please? To be honest I don't notice mine too much and I have heard that it's useful to keep them in case you need future treatment, but I have wondered about removal. It's always lovely to hear from people who are several years post treatment.

Earthy, sorry you are experiencing the torture of waiting. It's good advice to keep away from Google.

Sorry, just realised you are not years since treatment but glad you are doing well.

Hello everybody! I have indeed been lurking as accused. I am also under a name change as I have a nosy teenager so I have to be a bit secret squirrel.

I have lung mets and have just found a couple of tumours in the lymph nodes in my neck. I had CT scan early December and a pet scan just before Christmas and am waiting for results to see if there is anything else lurking about. The results have been sitting in my oncologists inbox since the 23rd December but the swine is off skiing so I have to wait until next Tuesday. This is the drawback of using the local hospital where there is only one onc working one day a week.

I am probably going to have radiotherapy and some sort of chemo again. (So I get neck tattoos this time mummywheel ! )

Trying to keep things normal for the kids has been really hard. Like Mysillydog Ihave booked centre parcs in France for July. I want to go on the big water slides - I shall be gutted if this latest batch of tumours gets in the way.