Freddie
At prh it’s a 2 week wait for the results. 1st time I was given my clinic appt before I left the ward, 2nd time it came by post and was for 3 weeks but I phoned BCN all in a dither and she immead got it brought forward a week. If you’re worried about anything speak to Mandy - she’s been really good.
Nicky x
Hi all
The advice is great.
As for the paranoia- my husband woke up this moring with a sore throat- I’ve never been so pleased to hear such a thing in my life.He wondered what I meant when I smiled and replied ‘oh that’s brilliant’. Made me realise that my own sore throat must be from an infection/virus-as all of you suggested of course!! Sal, I’m glad to hear the paranoia does fade at some point. The waiting continues though!
Nicky- thantks for the suggestion of speaking to Mandy. A few people have mentioned how good she is.I think I’ve got her number on a card somewhere.A bit rubbish to hear that it’ll be another two week wait though. That means another 3 and a half weeks before I know anything more!!!Thanks for preparing me though!
Debs- HAPPY BIRTHDAY-I’ve just got my 18 month old daughter to sing it to you- I’m sure that would have made you smile.Kind words and comments don’t seem to help at all do they? WIll be thinking of you on 2nd and sending lots of positive vibes. Thing is, like Sal says, whatever the news it seems to affect us in an unexpected way.
I’ve just been to church and couldn’t even get through the hymns without sobbing. I don’t go too often but it really did help me even if it was an emotional time. The comments about how tired I look didn’t help though!
TAke care and love to all
Freddie xxxxxxxxxx
Thanks Sal and Freddie, been a very strange birthday! thank your daughter for me Freddie, would love to have heard her! My 3 yr old step grandson sung to me with giggles!
you are both right about not knowing how you are going to feel when you get told things, numbness, disbelief. calm ,panic and God knows what else at some time!!! Debs xxxx
Hi all
Well, I went to doc’s today and she confirmed I had a throat infection so that’s put a stop to some of my paranoia. Good job I went actually as she said they won’t operate next week unless this gets better.Better start on the antibiotics.
I have also been thinking ( again) . What would others do in this situation. Given that so far my tests have either been clear or ‘suspicious’ yet I do have BC, once I have the lump removed in the one breast, how will I ever know if something is in the other? My only clue this time was that something was ‘different’ in one than the other. I have lumpy granular breasts anyway and if I don’t have a ‘good’ breast to compare lumpiness with I think I’ll be paranoid about every lump I ever find!
Love Freddie xxxxxxxxxxxxxxxxxx
happy belated birthday,Debs.
Oh Freddie your brain is working overtime, I think we all have had the “what if’s” moments. As I had been told my mammo and ultrasound were suspicious by the time I got my core biopsy result I had prepared myself for the news ,so when it was confirmed that it ws cancer I went into matter of fact mode and wanted to know what the treatment was going to be to get rid of it,was all ready to have the whole breast off but got told that could have lumpectomy so opted for that with the SNB.
I too have lumpy bumpy breasts and my lump just felt a bit different too,but had a mammo on both breasts at the clinic,told other was clear but last week found a couple of v small lumps in my “normal” armpit ! EEEEKKKKK ! The way Im feeling at the mo just cant be bothered to get worked up by it,am having first appointment with oncologist tomorrow and take it from there, don’t want to be held ransome to my body any more,will get it checked and deal with it,not worrying about it til I know that it is actually something to worry about. Ooooh maybe my brain has just melted down with previous worry.
Freddie, think rationally about this (I really do know how difficult it is from where you are, but bear with me). You’ve had mammograms of both breasts, right? If there was anything suspicious in the other breast, they would have checked it out. I think you’ll find that your breasts don’t feel the same all the time anyway. I too have lumpy breasts (cysts) and they were even more so at the time of dx, due to hormones going crazy at the time, I think (3 periods in 5 weeks!!). And no one could feel a lump in my breast, because I have lobular cancer, which tends not to form a lump. But they still found it on my first routine mammogram. And from the mammogram it looked as though it was about 5mm, which if you think about it is tiny. And you are now in the system, which means that you’ll have regular check ups. And whenever they run tests on you now, they’ll really be looking for something.
What I’m saying is - stop worrying. I know that’s easier said than done, but you’ll be fine and in a month’s time you’ll look back at this time and think “what was I worrying about?”. Please don’t think I’ve come over all bossy and Head Teacherish with you, but you do need to slow down with the thinking. It would be good if our brains had an off switch, wouldn’t it? lol
Do you know the Monty Python song, Always Look on the Bright Side of Life? If so, sing it to yourself. “When you’re chewing on life’s gristle, don’t worry, give a whistle”. Go on, whistle. Put some happy music on. Imagine you are Sigourney Weaver in the Alien Films - a fighter. BC won’t get the better of you. Just a bit of positive thinking - that’s what you need.
Freddie, try not to get in a tizz over this. As Salopets says, they now know there’s something to watch out for with you, so you have licence to get every little lump and twinge checked out, without our usual “Oh, I don’t want to make a fuss.”
Just remind yourself, last week you were panicking about your sore throat, and now you know it was just a sore throat. This one will be the same one day. It’s horrible, this constant paranoia, but we have to learn to live with it.
Hi guys
Thank you. After a few moments of madness I am now back in the real world and a bit calmer. I think it is because they are not giving me a definite diagnosis. I keep jumping around because they are too in a way.
Well, I’ve decided to listen to all your advice and just go on what I know and not the what if’s. Not sure how long I’ll keep this up for though!!!
Feel silly really and a bit guilty too. There are lots of people out there with very real issues and I’m wasting time on ‘what if’s’
Must stop it,
Thanks
Love Freddie xxxxxxxxxxxxxxxxxxx
Hi Freddie
Don’t feel silly or guilty. We all go through this mental torture and it’s no less real for you than for anyone else. You have real issues. This is horrible for everyone who goes through it. Admittedly, some of us have an easier time physically, but we all have the same fears.
I know where you are coming from regarding uncertainty. It’s horrid:( But things will get better and you’re in good hands. xx
Freddie, really DO NOT feel silly or guilty. All too often, it’s thinking that which stops us getting things properly checked out. This thing is always serious, and the best way of defeating it is to make sure you jump on every potential ember and stamp it out before it can catch fire.
Freddie, you come on here and let out all that you have to, because it’s all about shared experience and what you are feeling might be read by someone else who hasn’t yet posted and that may be the trigger they need to join in and share how they feel too. So don’t feel guilty or silly as you could actually be helping others,you just don’t know it !
Hi
Thanks for the continued support.
It really is a form of torture isn’t it? I’m up then down. If I could shift this sore throat I’m sure I’ll feel little better.
Love Freddie xxxxxxxxxxx
I agree with everyone! Don’t feel guilty, we are all going through it to one degree or another! it certainly helps me to hear I’m not the only one with paranoia, you voice what I’m feeling freddie! Its good to chat on here so glad i found it and all if you!!! Debs xxx
No Guilt!!!
Just put that on Sue in Spain’s post as well!
What are we like!!! We have every right to feel up, down, every which way, amazing how close everyone’s feelings are, don’t you think? The waiting is awful, and it just goes from one lot of 2-3 weeks, to the next lot, giving us so (too)much thinking time.
Love coming on here, feel like I can get it out of my system with people who understand, and care. Friends and family CARE, but they don’t always understand, I really now believe you have to go through this to understand the emotions.
Freddie, on the sore throat, I had recurrent sore throats last year, eventually got referred to ENT surgeon to be checked out (Oh yes, MORE paranoia there!) Really basic advice, but helped, drink LOADS, water, not caffeine containing drinks, as they further dehydrate you, and, bizarrely, try not to swallow!! Sounds daft, but the more we have a sore throat, we swallow more, to almost “check” how it feels. If there is irritation there, this swallowing aggrevates it, if you see what I mean. Obviously, if the sore throat is actually infected, then, that will cause the pain, but I was getting these throats with little infection - and they were worse when I was stressed, or in meetings where I was drinking loads of coffee. Might be worth a thought?
Take care, all
Lizzy XX
Hi all,
Debs- hope you’ve had a better few days.I’ve started to research into the gene testing thing today which will hopefully occupy my thoughts and steer them away from more paranoia!
Liz- thanks for all the advice about my throat. It makes alot of sense and I have tried to drink lots more today. It does seem a little better so hopefully i can avoid the ENT experience!!Am I right in saying your op is this week- if so, hope it goes okay for you and keep us posted.
Love Freddie xxxxxxxxxxx
Hi all
I do hope everyone is doing okay- and better than me!
Just wanted to rant and let my stress out again.
I went for my pre op this morning and spoke to some wonderful nurses. In fact, today, I found more out than I have during thw whole process so far. However it has confused me and now I have more questions!
At my last appointment the consultant said the lump was 2cm but the report I saw today said 3.5cm. This to me seems huge and I’m now terrified.Why is there such a difference? I know when I had my ultrasound the lady said that she must be cautious about the size as there could be some inflammation from the FNA a fortnight before. Could the difference account for this?
Secondly, the report also details enlarged lymph nodes to be present. The consultant hasn’t mentioned this either but I do remeber the sonographer in the ultrasound spending ages on my armpit area.
The things is ,if the consultant suspects DCIS why would I also have enlarged lymph nodes if it hadn’t spread?
DOn’t know how I am going to cope with the waiting now-one week till WLE and two weeks after that for results.ARGHHHH!!!
Any thoughts?
Love Freddie xxxxxxxxxxxxxxxx
Freddie - sorry not going to be much help as i don’t have DCIS but just wanted to give you a hug before the others arrive…
Has the consultant mentioned they are planning on removing any lymph nodes…?
I think you are probably going to have to phone your bcn and explain how concerned you now are and get her to go over their results so far with you…
Theresa x
Hi
Thanks.
Confusingly the consultant said that ‘he may or may not have to remove some lymph nodes’. He said it with a rather doubtful tone but other than that I don’t know.
i have phoned the BC nurse this afternoon and she wasn’t much help really. As I spoke to her she didn’t have my notes with her anyway and I think she was answering me generally rather than in relation to my personal experiences. She tried to reassure me about the size of the lump saying that they just don’t know until it’s removed and the business that it’s not the size but the aggressiveness that counts.I’m just completely confused by the whole thing.
One minute they seem very positive with me, the next the opposite.
Just about all I know for definite is that I have atypical hyperplasia. Everything else seems to be indefinite apart from the fact I have a large lump.It has now been 7 weeks since the first ‘suspicious’ FNA.
I know I’m expecting some answers which you guys can’t give but any similar experiences and support would be gratefully received.
Love Freddiexxxxxxxxx
Hi Freddie, I’m sorry you’re still struggling with so much uncertainty. As Theresa said, they won’t really know what they are dealing with until they’ve taken it out. My tumour looked 5mm on the mammo and was in fact 15mm when they took it out. But that’s because it’s lobular and therefore difficult to detect on film as it were. But other people seem to have results going the other way, ie, smaller in reality than it looked on film.
I too don’t have DCIS, so have no experience of it, but I think it might be useful to ask your bc nurse if the surgeon is planning to do axillary node sampling. Or ask your GP. The breast clinic will have sent a letter to your GP explaining what they are planning to do. I have copies of all letters that go to my GP sent to me and that’s very helpful, as I’ve got it all in black and white. If you’re not getting this, ask them to do it.
Take care
Sal xx
Hi
Thanks Theresa and Sal,
Both really good ideas. As my BC nurse didn’t offer much help I might ring my GP tomorrow and ask my doctor. I think that would be a good route and I hadn’t thought of this. I think that would really help me as I am the sort of person who likes to be completely informed.Great idea!
At the pre op today they were describing the process as a small WLE if that makes sense. However I’m a bit confused by this due to the size of the lump. But I guess they know what they are doing.They didn’t mention the axillary node sampling thing- nobody has said much about the nodes at all. When I last spoke to the consultant he just mentioned very vaguely that ‘we may or may not have to take a look at the nodes’. I suppose he’s waiting to see what he finds with the lump maybe??
Love Freddie xxxxxxxxx