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**Tamoxigang counting down to Easter eggs- thread 48**

(999 Posts)
BetsyBoop Fri 21-Mar-14 20:05:40

throws some hot cross buns on the trolley

Hello, apologies for crashing in.

I'm not really sure what to say here..
I've had what felt like a denser area in my breast for a couple of months, but kept ignoring it or thinking I was imagining it. Found out this week that my cousin has breast cancer which made me think God I should just get myself checked and stop fretting. So I went to the GP on Friday and have now been referred to the breast clinic as she felt it was lumpy too. I was really expecting them to say it was nothing.

So of course now I am terrified, my kids seems sweeter than ever and I can't bear the thought of leaving them.

I've been feeling quite rough for a few weeks too, exhausted for no real reason and a tight throat and easily breathless. I am now utterly convinced it has spread to my lungs. My breast suddenly feels twice the size and heavy (it's not actually any bigger of course!)
And now when I poke it (which I am doing regularly) it feels ridiculously lumpy and I feel like a complete idiot for waiting.

I am also supposed to be going on holiday in a weeks time, so I was wondering if I could use this as a reason to ring and try and get an appointment this week.

The doc felt in my armpit, would she have said if she could feel anything there do you think?

Could it really have spread elsewhere in a couple of months?

sad

Mummywheel Sun 23-Mar-14 09:58:37

ConsiderablyBiggerBuns I have had 2 FEC and another 4 to go. My nodes were all clear so no T for me. Not doing the cold cap although I am surprised that although I have shaved my hair off very short there seems to be a fair amount still there smile

Cherry scones for the trolley

Mummywheel Sun 23-Mar-14 10:09:51

Hello HippoPottyMouth Welcome - you have come to the right place. You will get plenty of advice and hand holding here. What you are experiencing is quite normal in my opinion I went through pretty much the same. Feeling anxious and then imagining all kinds. It is a very difficult time and the ladies here are marvelous. Sorry to run but someone will be along shortly I'm sure with sound advice. Sending a Big Hug! x

Speedypenguin Sun 23-Mar-14 10:26:59

Hippo- Hi. I have had some lovely support from here. You have done the right thing in going to the doctors. I have imagined all sorts of things but the nurse told me that nothing would change in the 3/4 weeks before I start treatment so I can't imagine that in 2 months things would have changed for you necessarily- also, it might not be anything serious. I know the waiting is really hard though and your mind works overtime. I had a phone call from the breast clinic 2 days after seeing the GP to arrange an appointment so hopefully it will be quick for you too. Big hugs

malteserzz Sun 23-Mar-14 10:55:00

Hippo remember that the majority of people who are referred to the breast clinic are fine, just because we have been unlucky doesn't mean that you will be. It's normal to start imagining all sorts. Things don't move as quickly as you think, I was diagnosed on 1st May and didn't have my op till 4th June so they can't expect things to change in that time. Though of course you've done the right thing in getting in checked out.

ConsiderablyBiggerBuns Sun 23-Mar-14 11:24:25

Thanks for the replies about FEC/T. I already know my nodes aren't clear so I guess that means FEC-T for me. That is still along way off so will be back for info nearer the time.
Hello hippo the waiting really is the hardest bit and the imagining the worst. I don't want to minimise your fears because I found this quite irritating when friends and family did that, but did want to reassure that even if the tests confirm your fears, it isn't the end of the story, just the start of an unexpected one. I am only on the start of my 'journey' apologies for sounding like I am in the X factor, and I have already found this forum a real comfort and great source of real life experience, facts and tips. Keep posting.

Lilymaid Sun 23-Mar-14 11:30:39

I sang in a concert last night - Brahms German Requiem - all went well though as one of the extras (more experienced singers who boost the rather ancient choir) I worked pretty hard! This week I worked 4 days, went out 2 evenings with friends and spent most of yesterday singing. Seems odd that at the same time my harmoglobin levels are so low that I need a blood transfusion ...

Wren48 Sun 23-Mar-14 12:18:36

Blimey, Lilymaid, that's impressive! I miss my singing and look forward to getting back to it, but I'm not sure i could manage the German Requiem on low Hg!
Hi there, Hippo, youve done the right thing by getting yourself checked out. Don't beat yourself up for waiting; just focus on being on the right pathway now. Good idea to ring up - can't do any harm to see if they can fit you in before the holiday - most hospitals have one day a week when they see new people, so ring soon, perhaps. And it's completely normal to re examine every feeling in your body and decide the worst. It's a horrible time, and we all feel for what you're going through.

foofooyeah Sun 23-Mar-14 13:18:38

Cold cap: I did it for 5 sessions of FEC, kept my hair but made me very miserable. Couldn't bear it for the 6th session and my hair started falling out 2 weeks later. I will probably have to have some T now as found it unexpectedly in lymph nodes and I won't cold cap again.

Hippo: very normal to think its spread and all sorts of odd feelings. I was convinced I didn't have it and was quite surprised when they started doing biopsies!

difficultpickle Sun 23-Mar-14 14:32:48

Speedy I'm on my own with ds, nearly 10. It does make it harder when you don't have a partner on hand but it's not impossible. I found when I shared my news various friends rallied round offering to help. Some offers were vague and more 'let us know if you need anything'. Others were more direct 'tell us what we can do and if you don't we shall tell you what we will be doing'. I found the latter offers really delivered and I've been able to ask them for specific help - eg school runs, playdates for ds as well as food runs for me in hospital (I had in patient chemo and was stuck in isolation in hospital for 5 weeks).

I didn't tell ds I had cancer as at the time he knew someone with cancer and I didn't know their prognosis (didn't want to link them to me when not certain what the outcome would be). He's worked out that I do have cancer now I've had chemo and lost nearly all my hair. He worried before the treatment and worried about the drugs killing me. I couldn't give him any assurance about being cured as it isn't a given for me. I did tell him that I was in the best care with the best doctors in the world (being treated at an international centre of excellence for my illness) and if anyone could make me better they could.

He's had a few meltdowns at school which haven't been well handled but I also arranged for him to see a child psychologist so he had someone he could confide in and who could help him deal with what is going on with me. He wrote a list of 16 questions about my illness that completely floored me (things like 'I worry what my last memory of you will be'). It was hard to go through but I think helped him process things. All I would say is don't overload them with information even if you want to get everything said.

Hope everyone is enjoying a sunny weekend. I'm trying to do normal stuff and feeling knackered smile

difficultpickle Sun 23-Mar-14 14:34:28

Lily I'm amazed at your energy but everyone's coping level with haemoglobin is different. My consultant says he knows people with a level of 60 where they can function whereas I really struggle when my level drops below 90.

Wren48 Sun 23-Mar-14 15:11:04

On the cold cap, I was initially quite keen, but decided against the day before as it was just another thing to worry about - and I thought it might just be simpler to lose my hair rather than worrying whether I was losing it, if you see what I mean. I also get migraines and was concerned that the cold (on wet hair) would trigger them. Scarves do fine for me; not bothered with my wig, although I do have a smart ish event next Saturday (if I get there) at which point I may fret for the first time about whether scarf matches outfit. Hmmm.

Lilymaid Sun 23-Mar-14 16:32:44

Pickel I'm amazed with my energy too ... particularly as I'm on oral chemo now and when I was on hormone treatment I was dragging myself round like an 80 year old. I'm making the most of the good bits as bad stuff may be round the corner.
Hope your energy levels improve as it is so wonderful to feel almost "normal" again!

Speedypenguin Sun 23-Mar-14 16:53:57

difficultpickle thanks for sharing your experience. Glad you had some good friends to help. Have told the boys this afternoon and they took it reasonably well. They both have had lots of questions and the eldest started off with "Is it cancer?" so we went from there. I will be keeping an eye to see how they are coping as it sinks in. I guess until I start having some treatment it won't be a reality to them. They have decided they want to draw a face on the back of my head to scare people! They are also hoping I will turn into a smurf when I have the blue dye!

Interesting to hear experiences about the cold cap. Not sure what I want to do yet.

kitkat1967 Sun 23-Mar-14 17:05:12

hello everyone. I had 3 lots of cold cap but absolutely hated it - it just seemed to make my nausea worse so when I changed to weekly Tax I was quite pleased not to continue.

Hi Lily - I'm glad to hear you are getting on so well and doing so much. Have you had your blood transfusion or is that still to come?

Foo - what has happened to you? I had thought you were nearly done with your treatment - have they changed their diagnosis? Here you get the SNB done up front even if you are having chemo first as they need to know that information to plan your treatment.

Malt - are you getting set for week 2 - are you going to do some teaching this week?

I went to the gym first thing this morning and then went to my sewing group - I have made most of a blouse - complete with a ruffle down the front - so I am chuffed smile. I can't finish it at the moment as I have come home to my dining room taken over by my DD for video recording!!

Marshy Sun 23-Mar-14 17:36:19

Hello everyone!
Haven't been on for ages so waving hello to all, old and new.

Just wondering what you all make of the makeup free selfie thing on FB and whether anyone has joined in? I haven't. I don't know how to say that having your photo taken with no make up is no where near as scary as having cancer without sounding a bit bitter and twisted; so have kept schtum. I guess the fundraising is good though.

I saw my surgeon this week. Very happy with my reconstructed breast and am on the waiting list to have the other one lifted so all good, except.... I mentioned I had had some vaginal bleeding (am peri/post meno and on tamoxifen) and she's now referred me to a gynaecologist and I have an urgent appointment for a trans - vaginal pelvic scan. I have Googled of course and scared myself witless.

And the scan falls on the day I am due to be interviewed for the job I have been occupying for nearly 2 years.Should be fine but you never know.....so am a bit stressed and down after a few weeks of thinking life was getting back to some kind of normal.....hah!

chocohontas Sun 23-Mar-14 18:21:17

Hi everyone - sorry to intrude on the thread. I put a question on general health but someone suggested that I repost here.
I have had a mammogram/ ultrasound and biopsy on a breast lump but I've been recalled to have a 2nd biopsy because although the first one was clear the dr is concerned that they didn't get exactly the right place and wants to just double check everything.
They are going to do a 'vacuum' biopsy this time and just wondered if anyone has any experience of this and if any after effects. Thanks

Lilymaid Sun 23-Mar-14 19:06:39

Hi Marshy I too have just scared myself witless by looking at the Breast Cancer Care Forum. All we can do is just carry on as usual ... I can imagine that having to reapply for your own job is pretty dispiriting too.

Wren48 Sun 23-Mar-14 19:47:25

Chocohontas, I'm really sorry not be able to help with the vacuum biopsy, but I hope someone with some experience will be along soon.

Really, fingers crossed for you tomorrow (is tomorrow when you get your results?).

Speedy, good that you told your kids; I found it much easier once mine knew what was going on. You're right, it's the treatment that brings it home, but even that can achieve a sort of normality if you keep talking. Ds2 was very keen on a voldemort turban (thanks, son).

Kitkat, good to hear about the ruffles; I was given some sew your own knickers for my birthday, so that might be my first project!

Marshy, I thought the selfie thing a bit ghastly until the charities managed to get themselves tagged onto it and it actually started raising money (it started out completely pointlessly). Certainly not done it myself, though!

wineoclocktimeyet Sun 23-Mar-14 19:58:56

Chocohontus, I had a vacuum biopsy - was ok, had injection to numb the area, then had to sit with my boob in a mammorgram type machine while they positioned the needle. It didn't hurt but I felt quite a lot of pressure/pushing.

It was sore when the numbness wore off, they said I could take paracetamol but I didn't need it to be honest.

Good luck, if you have any questions, please ask.

wineoclocktimeyet Sun 23-Mar-14 20:01:26

Meant to say earlier Speedy,one of the questions that my boys asked, which I hadn't anticipated was whether cancer is infectious, ie whether they could catch it (bless them).

We know you can't, but might be worth making sure they don't worry about it

harrietv Sun 23-Mar-14 20:11:04

Hi choco I think I had a vacuum biopsy - it made a really loud click at biopsy time which seems to be the feature of a vaccum one. If I did, then I'd say don't worry about it. They give you an local and you don't really feel anything, just a bit of tugging and some clicks. Afterwards I healed fine - was a bit tender for a week but nothing too bad.
Am suffering from pretty swollen boobs now the drains are out - it's uncomfortable - feels like when I got engorged BFeeding my DSs. Not sure if it's a seroma or just general swelling, see dr tomorrow but looking forward to somewhere down the line when the aches are gone. It's only been a week so I'm being impatient. blush

Thank you for the replies, I've been OK most of the day but now the children are in bed and I've uninterrupted access to Google, I'm a mess again.
DH has had to leave for the night to go with his mum to an appt tomorrow as she's been v ill and we think she might be getting some bad news delivered. I will be very glad when this week is over. At least DH being away gives me an excuse to work from home tomorrow and be free to hassle the clinic on the phone..

I am in awe of all of you functioning as normal.

I actually had a big rant at the facebook selfie thing last week, found it all v annoying, perhaps this is karma!

foofooyeah Sun 23-Mar-14 20:29:43

kitkat there was no sign of anything in lymph nodes, but due to size of lump I had chemo first but just FEC. Had mx with SNB and that came back with cancer in both nodes. So having full node clearance tomorrow and the results of that will determine what happens next.

malteserzz Sun 23-Mar-14 20:44:36

Foo foo I hope everything goes well tomorrow I'll be thinking about you x

Kitkat I'm teaching 1 day this week, really looking forward to it though I've picked up a cough this weekend. Lots of googling of lung cancer symptoms but best friend and her dd came round today and they have the same symptoms so hopefully it's just a cough

I was initially cross at the FB selfie thing but have to admit that all of the money raised is fab

Hippo it's hard, but you will get through everything somehow sorry to hear about mil

Love to all and hugs and tea for those who need them smile

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