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.

Hi all. Sorry for the delay in responding. It was my dd's 4th birthday on Thursday and it's her party tomorrow so we've been busy with that and it has been a welcome distraction tbh. She's had a lovely time so far. Thanks everyone for your kind words. Boobz thanks so much for taking the time to tell your story. I'm glad you're doing well and you've made me want to try the cold cap! Looks like it worked great for you. I have an appointment with the oncologist a week after I'm induced. I'm still terrified of chemo and whether it will work too. I'm still petrified of being tripple neg and tuppeny I'm so sorry about your recurrence but that has scared me silly too. I just feel like a recurrence is inevitable, that is if I can actually get rid of it in the first place. Sorry I don't mean to be doom and gloom and I know it's not the right attitude but it's all just getting a bit much for me. Hope everyone has a good evening and is having a nice weekend.

Rust, I don't think there is actually a right attitude. Most of us get through this kicking and screaming, quite literally. I've been furious and terrified. I remember when I first found this thread, almost exactly two years ago, I used to hold my hand over the page and read slowly revealing the text line by line. If things started to look scary I stopped reading. I also remember getting very cross with Amber because she was talking about survival stats, I lost the plot a bit and shouted at her. It's too huge to take in all at once and somebody else's bad news can have a massive effect. There is a time for doom and gloom, don't be ashamed. Just do what you need to do. I hope you have a lovely time tomorrow.

Thank you Mrs x

rust I'm glad your DD enjoyed her birthday celebrations. As mrsrhod says, there's no right attitude to this. Do whatever you need to do to get through. Take it minute by minute if you have to. Try not to think too far ahead. It's OK to be is scared. This thread is a safe place where you can say anything and feel anything. It certainly isn't one of those dreadful forums where you are demonised for saying or thinking anything negative.

There is every chance that you will be fine. Some people get recurrences, yes, and those are very often managed for years nowadays. But plenty of people have the treatment and then go and get on with their lives. This thread has had probably hundreds of posters pass through it over the years. A few are sadly no longer with us. But many more have been through their treatment and then got on with life. It won't be the same as it was pre-cancer, but it will still be your life.

Chemo isn't any fun. Some people get barely any side effects, others suffer more. Either way, I used to look at it as six months horribleness to give me the chance of a long and happy life afterwards.

Sleepy I'm sorry you're struggling, that sounds incredibly painful. I am pleased the hospice nurse was so helpful and I hope the extra pain medication helps. I've been thinking of you lots, though I haven't been posting much recently. I hope you get the radiotherapy soon.

Tuppenny sorry you've had to come out of hiding, but welcome

Lily how disappointing when you'd psyched yourself up for it. I hope the transfusion has given your platelets a good boost.

pepper I hope you don't suffer too many chemo side effects

I'm waving to everyone. I have been reading, but haven't posted for a while.

Yes, there were very positive survival statistics.
As you say, there's no right or wrong way to react. Any emotion, in any order, is very 'new normal'.
All I can say, really, is that we have made huge progress in treating breast cancer and a good few other sorts. Old statistics are now nonsense and irrelevant. There's never guarantees. But there is also no need to assume doom; not with local recurrence, or regional recurrence, or metastasis either now. The scientists are even suggesting that 'cure' may not be the right end result for most people. Converting cancer into a well behaved 'surprise guest' seems to be a new idea.
I won't ever suggest it's all easy and fun, because it's ruddy well not. So important to be able to share how we feel.

Thanks for the replies everyone. mrs I'll be having rads in Leeds too (Jimmy's), bur apparently there's a big waiting list at the the moment as they are very busy which is the reason for the delay, nothing to do with healing time. I really just want to get on with it. I just assumed that it would start 4-5 weeks after surgery and I could get on with getting back to work. The delay just makes me frightened that recurrence will be more likely and also means I will only just be finishing by the time school breaks up for summer, just wanted to be back to work by then!

Rust Glad you have a distraction, sometimes we need to have other things to take our minds off what's going on. I don't think anyone would say they've sailed through the whole diagnosis and treatment without being frightened, angry, delighted when you get some positive news and then completely deflated when another problem crops up. We're all human and deal with it in our own way. Use your BCN as your prop, mine started off very negative about everything that was about to happen or might happen but now I've got to know her a bit more she's been very good and now I know to dismiss some of the doom and gloom she been brilliant. I'm 3 weeks post surgery and had a massive infection in a seroma that came up and she was great at sorting appointments to get me seen and generally giving advice. She was there when the infection was drained yesterday and I came home with extra dressings and knowing that I could call her if I was concerned about anything. I'm her2+ so can't offer any useful advice for you but there are loads of people on here all who are willing to help with questions or just listen if you want to rant! Hope your dd has a great party tomorrow.

Thank you lovely Amber for the positive suggestions re. targeted treatments. I think that's where I didn't get enough info last year on the exact type of I have and although I still don't have the full picture yet I now know more about the questions to ask. So very pleased to hear about your good result too!

Rust I'm really, really, really sorry to have worried you. I didn't mean to spread doom and gloom - and I don't feel that even having had a bad result. The messages I'm taking from Boobz and Amber are that with TNBC we perhaps need to be a bit more proactive than I'd originally been about treatment plans but that there are many different types of triple negative, it's just an umbrella term. You almost certainly have a completely different type from me which will behave itself. I've got a friend many years post-treatment who was also TNBC and doing just fine. Recurrence is certainly not inevitable. And even though I've been unlucky, the scans show no evidence of spread, I'm booked in for a double mastectomy (which tbh I do wish I'd had in the first place but there you go!) and I'm still very hopeful all will be well. It might be a strange consolation but the first diagnosis was far, far worse than anything I've experienced since. I think you are in the very lowest place right now when the fear has you in its vice like grip but it's like first heartbreak - the first cut is the deepest and after that you do find strategies to move forward, triple neg or not. Your cancer, your prognosis, your treatment, your outcome will all be completely different from mine. Good luck and big hugs!

Leslie thank you for the flowers!

Hi everyone
Amber great news that your tumour is benign
Fresta I'm sorry that you have a long wait for rads. I think aiming to return to work in September will probably be what will happen. That will give you the summer to heal and then back into it fresh.
Welcome Tuppeny. I hope your team can come up a good treatment plan.
Sleepy I'm glad you have been referred to the pain team and I'm sorry that you had to wait to be seen. Hopefully the hospice nurse can prevent this from happening again.

I'm 3 paclitaxel down, 6 to go. I asked my oncologist why I'm having 9 pax when it is often given as 12 treatments, and she said it was because I have been pre treated with FEC and that 12 is given on other regimens. That had been bothering me, but I think I'm reassured now.
I find the clinic visits quite hard because I see a different oncologist every time. I would much prefer to see the same person, but I understand that being treated by a team is better than being treated by one individual. Every doctor has been nice, and they have started with I haven't meet you before but I know a lot about you.

My internal thermostat has undergone a massive shift. Throughout the winter I have been freezing cold, wanting the heating set to 25 C. I had periods throughout FEC but they have stopped on pax and now the hot flushes have started just as the weather is warming up. And I was so longing for the warmth and now I have it I'm not happy
Waves to everyone I've missed.

Hi fresta, I'm surprised they're so busy in Leeds. The rads suite is massive, I used to get lost down there. I would go for the very early appts, between 8 - 8.30 every day and it was always so quiet. You'd think their numbers would be prettly level.

Morning mysilly, I know what you mean about seeing different people all the time but like you I'm quite reassured that a team of experts are behind my treatment.

Tomorrow it will be exactly two years since my diagnosis, I don't generally remember dates except birthdays but this one seared through me like Blackpool rock.

Hope those who can enjoy the sun today.

Good morning all.
rusty, as those before me wisely said, there is no right attitude when it comes to cancer. The "stoical, fighter mode" is a deceptive, unjust notion we cancer sufferers are having to see, hear and face, but we know what it is really like.
We are all terrified of chemo and rightfully so...there is absolutely no fun or joy in cancer treatment and we, each and every one of us, copes differently and those who know us well enough, or are cancer patients themselves, will not have expectations or judge us.
Mrs, I can totally understand what you are saying. I am approaching my first year next month and I already feel my heart sinking. I feell like I have aged painfully since then in every sense of the word. I feel like my whole being has been infinged upon, like I have been robbed of my peace of mind and my dreams.
I agree with amber - indeed I hope too- that cancer will cease to be the fearfed disease that is expected to kill, to something like hypergension which, though serious, can be controlled and which you can live with and not necessarily die of.
Waving to everybody else.

Once again, i apologise for the many typos..... . Me and my rushed fingers!

Hi all - it does seem busy in here at the moment - am trying to pop in a bit more regularly.

Tuppeny I am more than happy to answer any and all questions, and to share my friend's paper - shall I PM it to you? It does talk a lot about prognosis and survival stats so if you (and Rust?) would prefer not to have access to that kind of data, then just say and I won't send it on. I'm a planner/strategist both in work and life, and did a science degree at uni (not much used since though, until now!) so I absolutely wanted to know everything I could, including prognosis and survival rates etc., and I immersed myself in the literature (a lot of which I'd been pointed in the right direction of by Amber, to make sure it was up to date). Am happy to talk about my experience of what I did do/would have done differently on here if you'd like, in case it helps you, but I have to caveat again that this is only so helpful for others with TNBC, as mine could be very different from yours in the way it behaves. My research led me to gene profiling, PARP inhibitor trials and immunotherapy, as well as therapeutic fasting and a huge reduction in alcohol intake, in addition to the more traditional chemo and surgery (double MX).

Rust - I don't think I could have putter better than Tuppeny: "It might be a strange consolation but the first diagnosis was far, far worse than anything I've experienced since. I think you are in the very lowest place right now when the fear has you in its vice like grip but it's like first heartbreak - the first cut is the deepest and after that you do find strategies to move forward, triple neg or not."

My own journey (hate that word) was something like: 1) Completely blindsided and could not stop crying for the whole 5 weeks it took to get a diagnosis, 2) Completely LET'S DO THIS AND KICK SOME ASS (whilst looking pretty with new make up bag and funky new hair cut, 3) Partly THIS REALLY SUCKS because I hate the cold cap/feel a bit knackered after Tax; Partly THIS IS OK REALLY because I am having some time off work and I can spend more time with the kids without work deadlines looming over me, 4) OMG it's going to come back I must DO EVERYTHING IN MY POWER to make sure it won't (including making DH watch cancer documentaries in the middle of the night to learn about the new research/trials coming out which I MUST DO), 5) Completely OVER the whole cancer thing - it was a massive annoyance but let's look at the bright side - I can now do make up, I have some lovely new boobs (which aren't trying to kill me), I have a new found "fuck it, let's just do it" attitude to life which I didn't before (will now happily spend money/go on that holiday/down tools to soak in the children more), and I've now had my brush with death so I can tick that off the list and get on with getting up, getting out, and getting AWESOME on a daily basis.

So really, your own doom and gloom is totally natural, and dare I say it necessary. I cried for 5 straight weeks! In the bath, in bed, at breakfast. And I am not a crier. So really, you are doing just fine.

Let me know how I can help with more specific stuff on TN if you want it - I can share more than just that one paper but it's a good start. Also, if possible, I would ask to see your path report from the tumour - this will give you an idea of what kind of TN you have and therefore what you are dealing with, with a bit more understanding.

Tuppeny absolutely no need to apologise, I'm just terrified of everything at the moment. Thanks to all who have said there's no right way to feel about this. I must admit I feel under some pressure from family and friends to be positive and I know they just hate seeing me so upset but sometimes I just can't feel positive about something so shit which has come as an enormous and very unwelcome shock. Boobz, I would love to know more about what you did/would do differently but perhaps not have info about prognosis - I suppose I'm trying to convince myself that stats don't necessarily have to apply to me as an individual. Perhaps I'm burying my head in the sand but it makes me feel a little better.

Hope everyone has enjoyed the lovely weather. My dd had a wonderful time at her party, I got a bit emotional at times (morbid thoughts of how many more of her birthdays I will see-God, I must stop that!) but generally we all had a lovely time and I even managed not to think about this horrible mess for all of 5 minutes! I really do hope to be of some support to others at some stage but at the moment I'm afraid I'm pretty useless in that department. Take care everyone x

Rust, everything you are feeling now is completely normal and burying your head in the sand is a perfectly fine thing to do, mines still there. Some people want all the stats about their prognosis, some are horrified by that idea, both responses are perfectly valid. To hell with feeling positive just for the sake of others. It's very uncomfortable to see someone you love being upset but you'll drive yourself mad if you keep it all bottled up. Rant away here, call your nurse or if you want someone else to talk to I have found the nurses at Breast Cancer Care lovely. Your cancer, your rules at the moment.

Rust when I was first diagnosed I found this thread invaluable as a place to be honest about how I felt as like you say you feel pressure from family and friends to be positive and you don't want to upset them. I'm glad your dd had a lovely birthday
It is all tough but you will get through it one day at a time

Hope everyone is enjoying the sun I have found that it's lifted my spirits a bit and the vitamin d must be good for us !

Good morning all.
To further emphasise what has already been said. When diagnosed with cancer, from that very moment, you are like someone who has been thrown off balance in a cyclone! Even when you do keep calm on the outside and face what comes along with what appears like dortitude and resilience, you are scared. It is because we cope differently with fear that so many "onlookers" choose the poster friendly yardstick to measure all cancer patients. One aspect of this being that you have to be "positive" and "fight" to be worthy of the label hero or even survivor, but we do not see this same pressure on, say diabetics or people with hypertension or other life threatening diseases. Why? Because in many ways even those who tell us to be strong and positive blah blah blah are actually condemning us to death.
Sorry for this early fant. I am feeling vulnerbale these days and what with rust's post, it seems we are always to have to discuss this. Without wanting to seem harsh and ungrateful to people who support cancer patients with selfless generosity, we still have to face our fears every day and soetimes the pressure from others only makes it harder.
Anyways....take care all.

Hi Royal, you sound really fed up. How are you recovering from the rads? Today I am two years on from my diagnosis, it's hit me quite hard, I've done a lot of thinking this weekend about how life has changed and I understand about losing your peace of mind and your dreams. I mentioned it to DH earlier who noticed me looking pensive. He's been brilliant all the way through but today he didn't really comment when I told him what was on my mind. I don't think he knows what to say and I've found that a lot. I've never been told to be brave or positive, most people have been to afraid to say anything and with friends we chat about anything else but cancer.

It used to really upset me in the first year but I have to say that two years on, although I think about it every day I don't want to talk about it much. It's always nice when someone asks how I am but I'm feeling much more positive. You are so close to the treatment still, it's so fresh but if your experience is anything like mine this will lessen.

Hi everyone, I'm finding it hard to be positive today, after all the ups and downs of the last eight months I have been up-beat for much of the time and 'battled' through treatment, but the realization that the consequences of this disease will be with me forever is dawning. I had some slight swelling in my arm which i think became more apparent in the hot weather, and went to see my nurse today. She thinks I have some mild lymphoedema and has referred me for assessment. The thought of having to wear one of those sleeves for the rest of my days is just utterly depressing and terrifying. It just seems too much to face right now.

Fresta and royal I'm sorry you're feeling down. I do empathise. You've done so well to make it through your treatment although I know we don't really have a choice about that but it does help to know people have got through it when I have that to come. I hope I haven't brought you down. Lots of love.

Lymphodema; they've just invented a different form of surgery that seems to sort it out. So I think there'll be far less reason to worry about having to wear a compression sleeve in the future.
I shall avoid mentioning the now extremely positive statistics, even for those with larger tumours, lymph node involvement and triple negative results....

Amber bless you, always manage to make us feel better.

Boobz, thanks for offer to pass on the research paper but, like Rust, I'm now thinking that might be a bit full on for me at the moment. But I'm really interested in the parp/immunotherapy stuff. Did you actually take part in trials of those? Any more info on that gratefully received.

Royal, I totally get your 'rant', and your phrase about facing the fear everyday feels like a good mantra for us all!

Rust as a fellow TNBC-er I'll be rooting for you as you go through treatment, looking forward to hearing how you get on - good days, bad days and everything in between.

Have a good week everyone.

Good morning (just about!)

I've been avoiding posting as I'm quite identifiable on here. I have told my sister, but haven't told wider family yet. So hopefully no one who knows me in real life is nosing about on here! :)

It looks like I'm joining Lily, Sleepy and others in the more exclusive branch of the club.

My CT showed some nodules on my lungs. I have had a PET scan and I am meeting my surgeon today and oncologist tomorrow.

I was absolutely blindsided by the news. Especially as I didn't get the results for a month I guess my optimism bit me in the bum this time!

I was genuinely not anxious about my original diagnosis. I have always tried to understand how people with anxiety musf feel, but it is so much worse than I had imagined!

I know people worry about recurrence so please bear in mind that I have bowel cancer, not breast cancer. It was found very late, which is sadly common in young people with bowel cancer. They've always expected me to have a recurrence, but they had started to relax because it was three years in October, when rates of recurrence generally drop. Obviously my cancer is as contrary as I am

Hopefully later I will be back with an excellent plan from my team.

Part of me expects them to say there's nothing they can do. But I'm reminding myself how unlikely that is with all the treatments available. Especially as, touch wood, I am otherwise quite well. My surgery side effects have finally calmed down, my anaemia has been improving, I've been able to start getting fitter etc. So recently I've started to think about applying for jobs, moving out of my parents' house and things. Hmph.

rust I'm sorry people are putting you under that pressure. I think it's because they can't really face what's happening to you, and are scared it might happen to them, so they try to minimise it and want you to make it look as easy as possible!

Weirdly I had the opposite pressure. Everyone seemed to want me to cry or be scared. I felt genuinely positive. And I got so pissed off with people being "understanding" about feelings I didn't have. I think some people wanted to be my "rock" so that they could feel good about themselves those people are no longer friends.

You must do whatever is right for you. Try to avoid spending time with people who make this all harder for you.

Fresta sorry about the lymphoedema. I hope it improves without a sleeve.

rover good your nurse is so helpful. I have the draining has helped and that it heals up quickly

Mysillydog bad timing with the hot flushes! I hope they improve soon.

I'm waving to everyone. I hope you are all fast asleep at the mo! :)

Leslie, no one can tell you how to feel. How many of them have been in your situation? I hope that your team give you some decent options. You seem a lovely person from what you write on this thread and I am very, very sorry that this has happened.

I now have some home oxygen and with that and my wheelchair I can get out and about again.

I sound like darth Vader though so I am a bit worried about upsetting people. It's not friends as they have already seen me but acquaintances who I am likely to bump/wheel into. They say such stupid things out of surprise and can be quite upsetting.

Oh Leslie. I'm so so sorry. There are no words really, are there? And to have gone 3 years! I'm thinking about you today. Do let us know what your treatment plan is and what the docs say.