Tamoxigang thread 49 when Sumer is y cumen in and we get out the Pimms

[Lilymaid]

New thread!

Malt. Have a wonderful time in Mexico.

Becca hope trip to hospital ok.

Foo lets hope this week is the last.

Elporto. Glad you are calmer and go get that fab new do.

Nelson hope they come back to you soon so you know what the score is.

Enjoy getting your haircut! You're right about the stress levels. I think I cried for about three weeks straight, and then realised that to a certain extent life does have to carry on as normal, at least for everyone else. DH still goes to work, kids still go to their activities.

I has a bit of a melt down this morning, first one really, I've kept it together up to now. Dd1 who is 20 complained that I was rushing out of the door at 7 this morning and hadn't said a proper good morning to her, ie had a long chat and that this was becoming a habit. I was just so hurt and shocked. I'm getting up at an ungodly hour so that we can be home by 9ish and everyones day is as normal as possible afterwards.

I lay on the rads machine with tears streaming down my cheeks, staff were lovely and offered me someone to talk to but I just wanted to come home. DH very bewildered and doing the useless "stop crying" thing because he doesn't know how to deal with it. Got more upset again at home and have realised that although I do not feel ill I am tired and my body and mind are going through the mill a bit. I can't be everyone else's crutch and today up I need to withdraw a bit. DH and dd have gone to the supermarket, that will be interesting. Tomorrow I will be fine I'm sure, but I'm very hurt at my daughters careless words. Maybe I've kept things too normal.

Sorry for the rant

Mrs- sorry you have had a rubbish morning. Rant away! You definitely need to think of yourself. Are you able to talk to your daughter about how you feel? She probably has no idea that what she said would upset you and hasn't thought about how you are trying to make things 'normal' for everyone.
Sending you

Aw Mrs sorry to read this You've been so helpful to me over the last few weeks,please put yourself first for a change. I get what you're saying when you say "maybe I've kept things too normal". It's ok trying to do that but filling in your loved ones every now and then about how you really feel is quite alright!.I'm sure your DD is mortified thinking back of what she said.I'm sure she never meant to hurt your feelings the way it did. Have a sit down with her and a proper chat over a .Doesn't have to be about anything but life in general,a little catch up does everyone the world of good at times.

Nelson, they'll be looking for whether they are HER2+ ones or any other clues, at this stage. Sometimes they do a bit of offering things like Tamoxifen or Herceptin if they detect cells that would respond to those, for example. Sometimes if it's just DCIS with a mind of its own that's wandered off into lymph nodes on some sort of holiday trip, they won't do a thing. Some might offer a bit of radiotherapy. Just depends what they reckon those tiny cells are. No real reading to be done on this unless you like technical reports written entirely in acronyms. If you do, try this one www.sciencedirect.com/science/article/pii/S036030161003107X which muses about it, and decides that it doesn't make a lot of difference if people have microscopic bits in their lymph nodes or not. Like all cancer, it only gets dangerous if people get proper cancer into really serious places all over the body. The outcome is still jolly good for nearly everyone in the long term.

Liver bits - yup, outcome now very good indeed unless people have lots of lumps in the liver/lumps in the liver and elsewhere in the body too, in which case it takes more potions to hold it steady/plenty of zapping with things like Cyberknife. I've known a few have small somethings in the liver but they turned out to be knots of blood vessels, so it's not always cancer-related anyway.

MrsH, not your daughter's finest diplomatic moment. I think she does need to hear how exhausted you are. I think family and friends can be blissfully unaware of what it takes out of us, this set of treatments.

Ah poor you, mrs. I guess even at 20, DDs are still capable of me, me, me moments, especially when at home with Mom. But I guess it is out of character for her if it shocked you.

I have two pre-teen DDs, this is par for the course at my house unfortunately.

Mrs We all have these melt down moments. We've all had to keep going through all this scary stuff, and sometimes the odd word said without thought (or having to endure the endless adverts that say "it is too late for me, but give some money for cancer research" etc) get too much for even the strongest willed!
Though come to think of it I was always one for unpredictable melt downs ... as DH will attest.

Hi all. Am coming here for another rant I'm afraid. So far everyone has been talking lumpectomy but today they are talking removal of one breast as early as next week. I had a series of horrendous biopsies this morning, one where the bloody local anaesthetic didn't work and I felt the whole damn thing there was lots of crying and a fair bit of swearing too

Then had a chat with my surgeon and it's clear the operation will be a whole breast and needs to happen ASAP. I am still awaiting bone scan (now moved to tomorrow) and liver MRI (Friday), then my meeting will be on 23rd and surgery the next day. I am well beyond worried, I am going really insane. I have had my pre-op today too, and chatted a lot to my nurse who has given me a huge book about reconstruction to read before Thursday when we will have a reconstruction consultation, probably a saline implant will be the best option for me.

Can anyone tell me about reconstruction where they don't save the nipple? I mean, I don't need mine any more having finished with breast feeding, but I am strangely freaked out by losing it, which it looks like I will

I have been doing so well the last few days, now i am back to where I was a week ago - free fall and planning my funeral. They can obviously see something on the liver and now I am terrified, absolutely beyond terrified

Thanks all. Dd is very sorry, think she's had a bit of a shock. I'm a full time mum still as DH has worked away a lot over the years and its worked or us having me as the anchor at home. Fortunately he is now much more flexible and based here with occasional trips. Because I have felt well, apart from immediately after surgery, I've carried on doing everything but I know recently I've been a little withdrawn. That's what the girls have picked up on, their washing is done, meals cooked, house cleaned etc but my mothering is lacking.

I think they understand now, dd2 had a bit of a go at me yesterday and dd1 this morning. It's sorted and dd2 has gone away with school until Sunday so one person less to deal with. I feel guilty for having a meltdown, but it's my first one since May. It's also DH 50th today and it's very far away from what we all expected and hoped we'd be doing. Thanks for your lovely responses, they each made me feel a lot better.

Elporto, I can't help with this, it's beyond my knowledge and experience and you are understandably terrified but isn't it a good thing that they're talking about reconstruction? They can't think you're about to shuffle off just yet and plenty here have been through it and worse. I'm sure you will summon up some reserves of strength to get you through, get angry if that's what works right now.

Hi elporto, my advice to you comes from my experience, not from any scientific basis and hopefully amber or someone else with some educated background will be along to reassure you. Firstly, I am in the same place as you liver wise. I have been assured that an ultra sound will only rule out one of the several innocent reasons (cyst) for a blot on your liver. Any of the other possible reasons, including the very common blood vessels amber mentions or the more sinister tumour implications would not have been determined yet. So, don't assume that the change to the op plans are to do with the liver - they are totally different sites and your breast consultant will be interested in the primary. Even if the worst comes to the worst and down the line they discover that whatever is on your liver is less palatable, there are loads of treatment for lone secondaries.
Secondly, the change of plan about your op. The lump is very small so reasons for a full MX are likely to be that there are either more than one lump, or it is under the nipple, or too close to the side walls to get clearance from only a lumpectomy. I had multiple lumps, one of which was directly under the nipple so knew from the start I would need MX. It must be distressing to have this changed at the last minute, the good news is that you will end up with a reconstruction, if that is what you want, with every care taken to make sure you look as good as new. I think the norm is to lose the nipple and this is addressed usually with a tattoo, again only if you want it. My cousin performs the tattooing as part of her nursing role and she takes great care and says it is the most rewarding part of her job. I'm not sure why they would have brought the op forward as an emergency, even people with quite large, aggressive tumours are subject to hospital schedules, do you think it could be that they have had a cancellation. Have you tried asking your BCN to allay any of your fears, she ought to be able to explain why the change to a MX and why the change of date.
You've had a shit day, don't best yourself up, sending you a hug for strength to get through this phase.

Thank you Buns for the quick and personal reply. The reason for the op taking place sooner are several: they have now found a 'cluster' of sites and so need to take the whole thing off; I am stage 3 with lymph involvement so it's fairly horrendous. They are apparently going to bump another lady who is stage 1 to the following week to accommodate me, which I feel awful about, but I have to trust their judgement that it's serious enough to do so. Also, they are quite sweetly concerned that we get to take at least some of our long-planned once-in-a-lifetime holiday to Oz and want to give me as much time as poss to recuperate and get on a plane this summer. I am now wondering if this is because they know it will be my last (ever?) chance for a bloody holiday

The liver is a complete unknown at the moment, which for me of course means the worst. Have not allowed myself to consider bone at the moment or my head will fall off. There is also a chance they will decide to do chemo before surgery in which case I am going nowhere on holiday anyway

Oh fucking hell

Buns, what stage are you at at the moment?

PS Mrsrhod, thanks for your support. It sounds like you have been holding things together really amazingly for ages and it all spilled out a bit today. I admire you for holding it together at all tbh! DC can be thoughtless, I know I was at 20yrs, they are probably both just really worried about you.

Hi elporto, I am stage 3 (awaiting like you, liver scan results), with about a third of nodes affected - had a clearance at same time as BMX. BMX was my decision, but the right one as turned out I also had DCIS in the supposedly clear breast. My breast cancer was caused by radiotherapy for a different cancer in my teens, this does have a knock on impact to my treatment. I had BMX in April and started chemo in mid June.
Now, I am going to give you a different interpretation of your current situation which you can choose to ignore as patronising, minimising or both, but if it gives you another scenario to hope for it might give you comfort. As you already know, the cluster sites will be the reason for the full MX, so nothing to do with possible secondaries. I have multiple nodes and so I asked the question, whether the status of my cancer was defined by the accumulated total of the lumps or the biggest, I was categorically told that the important statistic is the size of the largest, unless something has changed since the biopsy, yours was small - so good news. About the bumping of your op, one way to look at it would be that a lady with stage 1 would be a higher priority to stop it progressing, sounds to me that they have taken your personal circumstances into account and are trying to enable your exciting holiday. Although sometimes appearing to the contrary medical staff really are human, a trip to Oz sounds thrilling, a once in a lifetime holiday, but not the last in a lifetime holiday! My breast surgeon was absolutely only interested in getting rid of the primary disease, one of the reasons why I had to fight for the BMX, any secondary issues are the concern on the oncologist and will be handled as part of your further treatment plan, I really don't think he is thinking past what is best for you and the hospital right this minute. As I said, feel free to ignore this interpretation, it is meant with good will and the hopes of a different perspective on a crappy day.
mrs this coping malarkey isn't always what it is cracked up to be. You deserve the occasional meltdown and your whole family need to understand the strain you are under and that you shouldn't be taken for granted. Everyone says on here that significant dates are hardest and DH 50th was likely to be tough. Both I and DH celebrate our 50th next year and I am very much hoping that this pants time is a distant memory by then - am planning a massive party, which makes a change from planning my funeral, elporto!

Elporto, the reason they are rushing about is nothing to do with 'medical urgency'. You will find it is because half the team are going on holiday, as it's July. They need a whole team for mastectomy, y'see. Not so many for a lumpectomy. So they need to shuffle the patients round to make sure the whole team's there. And that's why they have brought forward your tests. It doesn't make a ha'porth of difference to outcomes to do an operation now or in two or three week's time. So it's definitely not that. But hospitals don't like to use the 'staff holiday' words when explaining this, and may end up frightening the wotsits out of patients for no good reason.

So, At the moment you have very good odds of a long and happy life. I do mean very good. Even with a cluster of small bits in the boob. Even with it sneaking into your lymph nodes. Even with it being an aggressive sort. The thing is, with aggressive cancers, what it means is 'thirsty cancer'. And chemotherapy requires cancer to be thirsty, so it drinks the chemotherapy and dies. The thirstier the better. So it's not anything to do with your odds of copping it. It's to do with what treatments and potions they are going to use.

A couple of tiny bits in the liver is no real problem these days either. If it is indeed cancer, they can do half a dozen interesting things to treat that. And the odds of success long term are still 80% from liver cancer that has one or two small bits.

So, you can plan that funeral if you like, but you're not going anywhere off planet, I'd reckon. You will be in for a long bit of treatment, though. Luckily all do-able for nearly everyone. And teams are very good at adjusting it if it's a bit too 'full on' for someone.

Hope that helps.

PS not a cancer Expert - just someone who's had breast cancer, is still here three and a half years later, and has spent years reading every single research paper that passes over the internet and taking a keen interest in it. Always check medical details with your medical team etc etc.

amber and buns you are epic with your reassuring, no nonsense approaches. elporto I hope they have managed to talk you down from the ceiling. Some doctors are good communicators, some are rubbish and I'm sure most gauge what they think patients can cope with by their reactions. It sounds like you have a great nurse so use her, she knows your situation. If you really want answers, ask your team, but by all means keep posting if its helping.

I'm another who has found my team were very keen for us to have our holiday and moved things along quickly to facilitate that. It does happen, please believe that, I think it's very common at this time of year.

Buns, amber and mrs - thank you, I am officially off the ceiling. Perspective somewhat restored, funeral plans on ice for now. Deep breaths. Thank you.

Hi everyone, I've been lurking for the last few days but think it's time I need to post.

I was 'diagnosed' last Tuesday but only on the strength of multiple mammogram images and an ultrasound. I had a core biopsy done but don't get the results until this Friday. I'm really struggling with the idea that they've diagnosed me without all the clinical test results available. Is that usual?

Admittedly my lump is large, 2.5×2 cm or so according to the consultant, very hard, not particularly mobile, painless and apparently attached to the skin which has led to puckering of the breast next to it. When I lie on my back you can actually see the lump sticking out :-(. I only found it 3 weeks ago, am so shocked that I never noticed it before...

So does that all add up to be cancer? The consultant has said the biopsy results will tell them what type of cancer it is and how advanced. My fear is it sounds pretty advanced and naturally am getting very worried.

At least the team will have had their big meeting today so I should get to hear the treatment plan on Fri too.

So I have been trying to go to work but it's not easy. Fortunately my boss has stepped up to the situation (he's usually a really bad people manager) and has told me to do whatever I need to do to get me through to Friday. I'm going to 'work from home' for the next couple of days but hopefully meet up with a friend for tea or even take myself shopping. I'm off to Ireland on friday night for the weekend so need to get organised for that.

So that's my story for now. I'm very much in need of some hand holding

Elporto - they did do my chemo before surgery for the very reasons amber says - I had a thirsty aggressive cancer, and after 6 months of chemo, my lumps were very nearly gone (and they were pretty big) and one lymph side was clear, the other only had three affected nodes.
I've been through the planning my funeral fun too, but I very much hope that you and I are both around complaining about our teenagers in ten years time!

Hello mintyneb welcome to the club no one wants to be part of. I and several others on here were diagnosed from mammogram and ultrasound without waiting for the biopsy. Personally, I was happy (not very suitable use of word) that I found out at that first appointment, even though it was a bit of a shock and I was all by myself, as I would have hated waiting in limbo for 10 days for confirmation. I chose to get myself together in the interim period and after the next appointment when the biopsy allowed a treatment plan I was ready to tell DDs etc. someone on here mentioned a 10mm lump, so although 2.5mm sounds huge, they can be a lot bigger. From what they have said to you, it does sound as though they were confirming you do have cancer, I'm sorry if I have misinterpreted the feedback you had, or if you are not ready to face that yet. Use the lovely people here to ask any questions, or have a rant, whatever you need to get through the next few stressful days.

Thanks considerably. I think I'm fooling myself that everything is going to be okay. I was on my own when the consultant said 'I'm sorry it's bad news. But I think you were expecting that'. Trouble is I wasn't :-(. Yes all the signs were there but everything I had read said 8 or 9 out of 10 lumps were benign so of course I thought mine was too.

As to its size the consultant somewhat unfortunately described it as a bit of a 'stonker' :-(. Thank god he was just a locum and I will be seeing else when I go back.

Roll on Friday. ....

Hi minty, sorry you're here but there is a lot of support on this thread. I have to say that I ended up at the breast clinic with what I thought was a blocked duct, and even after ultrasounds and mammograms I had no inkling than it was anything more. They told me it was cancer before the biopsy results were in, agree that it was better than spending ten days in limbo, we hid in DHs parents cottage in the Highlands for a week (school holidays) and we really felt the benefit of that.

Some really good words of wisdom from Amber, mrs and buns for you elporto. Glad you are off the ceiling now. This is why this thread is so valuable for us all.

Mrs don't feel guilty about having a meltdown. You have a lot to cope with at the moment and sometimes it needs an outlet. Hopefully you have managed to have a nice rest of day with your DH for his 50th.

Minty I was given the 'it probably is' speech before biopsy results but have a friend who was given the diagnosis at the first appointment and then the treatment plan. The waiting is very hard and we are all here to hold a hand. Distraction by keeping busy sounds a good plan and a key thing to remember is not to 'google' (I was guilty of this but then firmly told off by the lovely ladies on here). There is lots of info out there; lots of it out of date and not relevant.

Oh minty as I said above, some doctors are great communicators, some are not. Hopefully the new one will be better. Welcome anyway and ask away. I had mammogram, ultrasound and core biopsy on a Friday and had to go back the following Friday for the results. That week was horrible, hints were made but not strongly enough to make me realise the truth. It's sounds like you've been spared that. I understand that you really weren't prepared for it, I wasn't either, it was a shock as I actually presented with something else. This was a little hidden extra! Getting the treatment plan will allow you to gather your strength and understand what you're facing and it helps to reduce the panic.

weebarra welcome back, how was Spain and how are you feeling?