Diagnosed 31 May and a wreck!

[Allypops]

Karen,

The clip sounds ok then. One less thing to worry about!
Thanks for the reassurance xx

[Karen942]

Hi Allypops,

The clip is ok very quick and not as fiddly as the biopsy, took two minutes for me so hopefully you will find it a breeze in comparison 😀

Good luck and see you in July chemo group 👍🏻

Best wishes

Karen x

[Allypops]

Thanks Karen. My metal clip gets put in Tuesday. I am hoping it won’t be any worse than the core biopsies. I will join the July chemo thread as soon as I get my start date. So hopefully, I’ll see you on there soon.

Allypops x

[Karen942]

Hi Allypops,

Thought I would jump in as similar to my experience and wanted to say this is the hardest time. Mine was bigger than originally thought and node involvement so had my first chemo yesterday after thinking op would be first.

Diagnosed on 2nd May so it’s been a long old wait with umpteen tests , scans, biopsies , clip inserted etc .

I feel much better now it’s beginning to happen do hang on in there and join the July chemo starters for tips 😀

Take care

Karen x

[Allypops]

Thanks Sally. It’s thrown me a bit as I had initially thought that I would be having surgery first. But I will be glad to get started on my treatment plan. I hope chemo won’t be too unkind to me. I hope you continue to find the chemo ok and manage to keep all the side effects under control.

Allypops x

[SallyG63]

Hi Allypops,

I'm on 4x EC (before 12 T) at the minute. Done 2 so far and it's not at all terrible. the thought of it beforehand was worse than the actuality. You'll be fine. Good luck with it.

Sally

[Allypops]

*bone scan not being be scan!

[Allypops]

I have had my appointment at the Royal Marsden. As long as being be scan and echocardiogram are ok, I will be starting chemo in about 2 weeks. EC-accelerated T chemo (4 of each). They don’t think it’s inflammatory but it is a bit spread out and close to skin. It’s also in the lymph node they tested so I would be having chemo at some stage anyway and doing it before might give more options, or make surgery less complex. So that’s the plan at the moment.

[Allypops]

Had appointment with consultant. The mri, ct, and biopsies show that it is bigger than they thought with axilla node involvement. It’s also close to skin so I will need a punch biopsy next week in case it is inflammatory. But no evidence of distant spread on ct. But may now need chemo first and mastectomy. So being referred to Royal Marsden for them to look at treatment plan. They still seemed hopeful that they can treat it. I’ll be glad when the plan is in place.

[JaneBelinda]

You’ve crossed my mind a lot today Allypops...I do hope you can find some time to enjoy the weekend and TRY to put this rubbishy blip to the back of your mind. Love and big, big hugs xxx

[Thistledown]

Allypops - just want to echo what JeneBelinda has said, you are getting all these tests to ensure everything  that needs to be clarified is done so before they take action, they are being thorough (and how, your poor boob !) 

Thank you to all for thinking of me (mental knicker elastic support was very welcome!) - outcome was pretty good really, histology showed that the initial 60 mm Grade 2 tumour was not that size - it was 30 mm and the rest of the suspicious looking thick tissue stuff was a mix of scar tissue, a fibroadenoma, a papilloma, and early DCIS, so clear margins were definitely achieved and an mx is not now required. (So really, this goes to show in one sense why they may be calling for as many tests as possible on you Allypops, none of this scar tissue etc etc was seen properly ! )

Of the 25 lymph nodes cleared, two were positive, so chemo will be required (was resigned to that as I knew one node was bad) and of course Letrozole - and radio at the end. So it’s looking OK !! Chemo start date will be settled  after I’ve seen the oncologist to discuss, hopefully in a couple of weeks. ( I am now crossing all fingers that we will be able to go on our planned hol to a little Greek island that we love, on 4th July..🤞🤞🤞- surgeon reckons it’ll be ok but of course it’s down to the lady oncologist, do hope she will be sympathetic, and let me heal fully over there!) 

Looks like I should be joining the July chemo thread, but I am regularly checking May and June’s for everyone there and marvelling at them, getting lots of tips, and willing them on too. (I’ve been asked to consider the Optima Study trial, as I am considered ‘eligible’ but I’m really not sure after checking it out !) 

As for chemo - as JaneBelinda said, bring it on ! 

Allypops, you will get there.... bruised, but unbowed.

Much hugs 

Again, thank you all

Thistle x 

[JaneBelinda]

Try to stay positive Allypops...all these thorough tests and checks are ensuring you will get THE VERY BEST outcome. My heart goes out to you because I can imagine you are having kittens (well, not literally but you know what I mean x). I hope someone else comes on here to offer you more practical support and advice. x

[Allypops]

Another phone call - ultrasound and further biopsies from other side of bad breast as well as ct tomorrow. But all results should be ready in time for the appointment next Thursday. My poor boob is already black and blue from yesterday’s biopsies (bled a lot too). I’ll also need a bone scan at some point in the next couple of weeks but that doesn’t need to be done before the next appointment/treatment plan.

[Allypops]

Just had phone call. Now have a CT scan tomorrow morning too 😨

[ladybowler]

Thistledown

Sending you hugs and positive vibes for your appointment today xxx

[Allypops]

Thanks JaneBelinda and Thistledown

Sorry you are having all these worries too. xx

[Thistledown]

Had core biopsies taken from axillary lymph nodes at initial mammogram and ultrasound, apparently because one was showing as being enlarged although it couldn’t be felt, came back positive so have at least one affected... they then took them all out at op and I will find out what they found this morning. Dreading it to say the very least, had a terrible night, so I know how you feel Allypops, truly. 

Feel as though it’s day one of this nightmare all over again, looking around forum others feel like that too at times, so we are definitely not alone there..this is a blip, a nasty one, but a blip xxxx

Hugs and positivity (let’s get that back, knickers and support are needed) 🤞🤞🤞

Thistle 

[JaneBelinda]

I can’t imagine what you are going through Allypops. Call your BCN...she can hopefully put your mind at ease. Maybe these pre op checks are not uncommon you know? My lymph biopsies are being done after my op. 

xx

[Allypops]

More core biopsies taken (including axilla lymph node - scary) so will have to wait for results before finding out what the treatment plan is. Appointment with consultant postponed til next Thursday. Feel terrible to be honest.

[JaneBelinda]

Will be thinking of you tomorrow Allypops xoxox

[JaneBelinda]

Allypops I know it’s hard but...these checks are to build up as perfect a picture as possible, to arm the experts with as much material as possible. Phone your BCN tomorrow for some reassurance. x

[Thistledown]

Allypops

Been researching, (but not Dr Google ! )
found lots of comments about MRIs being super sensitive and that results in a lot of false positives, so listen to what Debbie has just said xxx

As Sally says also, they have to be checking everything just to be totally sure of things, they are looking after you....

x

[Debbie61]

hi Allypops. I was diagnosed inApril 2016. I had several MRIs. I was called back in for “something” in the other breast - so had to have an MRI guided needle biopsy - and it turned out to be nothing. Lots of waiting and worrying for nothing! They have to do all these checks just to be sure, but try not to worry too much (bit rich coming from me the Queen worrier!). Debbie x

[Thistledown]

Oh pet... 😩

I’d be just the same, this so&&ing thing....wish I had some experience of MRIs and could reassure you, hope someone will be along soon who can do just that,..

Sending large hugs and positive vibes - keep strong.

Xxx 

[SallyG63]

Allypops, breathe.

Whatever it is they'll have seen and dealt with before, they just dotting the i's and crossing the t's.

Just an aside, if they say there's nothing on the scan ask them to biopsy just in case. My invasive lobular cancer didn't show up in a scan and I was told there's was nothing there a couple of times before they finally found it via mammogram and biopsy (I never had an MRI)

Fingers crossed for a good outcome.

[Allypops]

Apparently, they have seen “something” on the MRI and I need to go for another ultrasound on Wednesday. Oh my god. I burst into tears on the phone but they couldn’t tell me anything else other than I’ve got to go Wednesday for them to check this other thing. My heart is jumping out of my chest!

[Thistledown]

Me too with Thursday, Allypops...😬

So pleased you found the MRI doable, let’s both get through the Thursday wait now..

I shall be hitting my Headspace app well this week ! 

Best wishes and hugs xxx

Thistle 

[JaneBelinda]

The waiting is the horrible part I agree 😕

[Allypops]

MRI today. Noisy and a bit claustrophobic but not too bad. Now the long wait until Thursday.....

[JaneBelinda]

Will be thinking of you tomorrow Allypops. I assure you, the MRI is nothing to fear... please let us know how it went. Remember....one small step at a time leaps chasms! 🙂❤️

[JaneBelinda]

Hey Allypops, my radiographer biopsies my non suspicious lump just to be sure too! So like you I am thankful for that too x

That’s good your ultrasound is done and like Thistledown said, the fatty liver issue can be addressed positively and that will improve your all round well being too!!

Will be thinking of you Sunday but rest assured it is just a procedure and the most uncomfortable thing about it is just the awkward position you lie in...but even that’s not too bad. Apparently some people even go to sleep doing it! 😂😂😂

One step at a time eh? I’m just a step ahead of you...we are both in the darkness for a little while, crossing a field of thorns and nettles under a rainy sky...but there’s a path to a lovely sunny garden for us on the other side of the door. I’ll be waiting there for you with a glass of something chilled and sparkly! xxx

[Thistledown]

Glad the abdominal went well - at least you won’t have to postpone a wee before the MRI now and be able to zap the airwaves with a bit of Teen Spirit !

That radiographer was a heroine - and the fatty liver is easily sorted with an improved diet, (husband proved that when he developed fatty areas there too) - to be honest, this horrible diagnosis for us has pulled me up regarding eating the right things and exercise, I’m trying hard and have lost 10 lbs - (don’t think that includes the lump of nasty flesh 😬!! ) and I intend to continue following dietary advice gleaned from here... 

Just wish, for all of us, it hadn’t taken this to do it ... but we will persevere, won’t we ? 

Get Sunday over anyway...and hope you get a chance to use your music ! 

Keep rockin’

Thistle xxx 

[Allypops]

Abdominal ultrasound went ok today. Liver is fatty so need to improve my diet but no obvious signs of anything else. It was the same radiographer who decided to biopsy the non-suspicious looking lump just to be sure - she said she was really shocked that it had actually been cancer. More tears from me - I did thank her though. Now just to keep fingers crossed that the MRI machine is working on Sunday. Hope you are all well xx

[JaneBelinda]

That’s the spirit Allypops! Nirvana is a flipping great choice! Even if you hear little bits in between the racket I am sure that will help. I played a sort of game in my mind, wondering which track would be playing when the breaks came...sort of like MRI musical chairs 😂

And you’ve got street cred in spades...x

[JaneBelinda]

Aw...Thistledown. Between me you and Allypops we could start a BC Groupies Group! 😂😂😂

[Allypops]

JaneBelinda
Thanks for the encouraging words, they really do help. I will see if I can take my own music - maybe some Nirvana will get me in a fighting mood. No claims to fame here- I used to hang out with one of Francis Rossi’s sons as a teenager and my second cousin was “mixmaster” for Stick Aitken and Waterman. But not exactly anything that would give me any street cred!

Thistledown- Good luck with the path results. I hope you continue to heal well too.

Thanks for the support, it means so much xx

[Thistledown]

Allypops

Just logged on to read if you’d had MRI ok  - 😩 ...and oh drat, for want of a better word ! We can do without this, but at least the results consultation won’t be delayed...as JaneBelinda said.

I’m in the waiting loop still myself, to get path results next week and see if margins are clear, how many nodes were affected, and if I now need a mastectomy after this elaborate boob job. And when chemo should start.Oh joy.....

JaneBelinda, your choice of music and knowing these artists is great ! I used to like The Tea Party, they are Canadian. My only claim to fame is that Chris Rea’s mum (lovely lady) played the organ at our wedding - 😊husband went to school with Chris but knew his brother better... 

So so sorry about your delay Allypops - you could’ve done without it. Xxx

Helen xx 

[JaneBelinda]

Oh boo! But at least it puts your appointments closer together x No need to gear up for it, honestly xxx

All painless and in a weird way quite therapeutic. DO phone and ask if you can take a CD! Even though I couldn’t exactly listen to every track, my heart filled with joy every time I heard snippets of my fave songs. Didn’t realise that the radiographers listened too though...some of my songs contained rude words!

[JaneBelinda]

Oh boo! But at least it puts your appointments closer together x No need to gear up for it, honestly xxx

All painless and in a weird way quite therapeutic. DO phone and ask if you can take a CD! Even though I couldn’t exactly listen to every track, my heart filled with joy every time I heard snippets of my fave songs. Didn’t realise that the radiographers listened too though...some of my songs contained swear words! 😂😂

[Allypops]

Just had a call. MRI machine is broken so tomorrow’s scan is put back to Sunday. Doesn’t change the overall picture - still have to wait until next Thursday to see consultant again anyway. But I’d got myself geared up for it.

[JaneBelinda]

Oooohhh....then hopefully you won’t be in the scanner too long! I’ll have my legs crossed for you tomorrow x

[Allypops]

£100 bingo win is good but even better is the distraction from evil google!
My bcn said they were going to try to fit me in on Thursday for a follow up but it was unlikely that they would have had full results reviewed in time so no point bringing me in to say that they don’t yet have a plan. Fair enough.
I can’t have a wee before the mri because I have to have not had one for 4 hours for the abdominal ultrasound that they are doing after. I will be hoping that my pelvic floor doesn’t let me down!

[JaneBelinda]

I took my own music Mai7. Didn’t get to hear much over all the clicks electro bleeps and stuff....radiographers heard more than me! 

Mine was Matthew Good, Trailerhawk, The Tragically Hip, Our Lady Peace (all Canadian bands / singers. Matt is a personal friend and multiple Juno award winner) and my friend Tom R Davis. He is doing a vinyl record dedicated to me as we speak...

think he will be jarred off when I tell him tomorrow one of the radiographers thought he was Jethro Tull! 😂😂😂😂😂

[JaneBelinda]

Haha....I keep Googling too. I’ve signed up to Gala Bingo to stop myself doing it! Only a few quid here and there but yesterday I won £100! 😂

[JaneBelinda]

Yeah....it was like I had been told: the world’s worse rave without the mind bending drugs 😂😂 Seriously, it was more about the minor discomfort of having to try to stay so still but even that was OK. A bit of faffing with gowns to hide my modesty from the male radiographers but tbh I’d rather have just let them see my floppies than faff with removing a frontal gown when I am trying to lie face down 😂 Worst bit for me was the 40 minutes it took to get out of the hospital car park!

You’ll be fine. Just ask for a wee before you go in, so you don’t feel uncomfortable. And put a flask of cold squash in your car or bag to drink when you come out. I was really thirsty...also had a contrasting dye injected so must keep fluids upin the 24 hours after. 

My appointment SHOULD be this Friday although it’s tight as they don’t have much time to build the 3D model thing. 

Aw...wish you didn’t have to wait quite so long....this waiting is sure driving me nuts! BUT I have to remind myself that I have a wonderful team of experts at my disposal x

[Mai7]

JaneBelinda, definitely a good idea to have your own music. When I went in the MRI scanner a song came on the hospital tunes which was a bit sad and had me in tears!  The machine is pretty loud when it kicks in so you might need something like Motörhead to drown it out! Hope you are coping ok. Xxx

[Allypops]

C,
Have you got many more rad sessions to go? It must be hard to manage appointments with young children.
A

[Allypops]

Hi C,

Thanks for your message. I am pleased that your treatment has progressed well. I won’t know about a treatment plan until after the mri etc but I have been googling and you are so right: not a good move!

[Syudbx]

Hi Allypops,

Your message resonated with me so much that I didn’t want to read and not reply.

I’m younger at 34 but with two young children too - a five month old and a two year old.

I was diagnosed while breastfeeding my little one with 11mm grade 2 ER + . All of the feelings you are feeling right now, I had. And some days still do. But I just wanted to reassure you that things to get easier. You are by far in the worst stage as everything is so raw and shocking.

Do you need chemo? I’ve had lumpectomy followed by rads (currently doing these) and I have been on tamoxifen for five weeks. So far all is ok, although I appreciate early days.

My oncologists have been so positive that when I’m in my dark place - which was only last week when my first period after pregnancy arrived! - I recall what he told me ‘I’m cancer free and the rest is my insurance policy’. It’s hard, and I still wonder ‘what if’ but I just wanted to say that day by day it does get easier.

My main piece of advice is to not google!!! I did not take my own advice and nearly sent myself loopy 🙄😊

C x

[Allypops]

Thanks Gill. I have mostly been the same today but have managed a few moments of feeling a bit more normal (if you know what I mean). It’s just such a shock and so scary that I can’t yet fully take it in.