Hi Gemma

i just wanted to reply so you feel less alone. I'm 41 with a 5 year old and I was diagnosed with invasive breast cancer a couple of weeks ago. I am quite likely to have a mutated gene because I actually have bilateral breast cancer. It's very rare, and was found after my MRI. I had a PET-CT of my whole body yesterday and am waiting for the results to decide treatment plan, though very likely a double mastectomy and chemo. I had to have more biopsies of other suspicious areas but the one that's been confirmed is ER+, PR- and HER- 

I can so relate to your post. You've described exactly how I've been feeling, right down to the irrational thoughts. I'm so sorry you are going through this. Just wanted to send you some positive vibes and strength. There are so many stories of long happy lives after BC. People say when you get your treatment plan things start to feel a bit easier. Thinking of you and hope the little ones are doing ok with the chicken pox x

Hi Lisa

I'm sorry to hear you've been so recently diagnosed too and to meet you in this chat space but reassuring to knowing not alone.

I think I'm still in shock and disbelief as still a part of me can't believe I've got this, how and why did this happen to me. Out of the hundreds of girls I know why me. I can't help feeling jealous and unjust when I see women (ive been watching Glastonbury) jumping around breasts flying about having fun and seemingly not a care in the world. I know thats stupid but can't help to think that at the minute. 

My breast care nurse thinks it'd likely because of my small breast and large tumor it will be a full mastectomy.  I'm tempted to have both off and be done with them. Just don't know about having reconstruction straight away or leaving it and see how I feel. I've been a b cup, but bigger the last 4 years as breast fed  my 2 boys back to back. 

I'm used to a flat chest - that's me.

But would be quite nice - if there's ever anything that is during this - to get something bigger popped in !! But then I don't know if after all this I ever what to look at or feel my breasts again. This is emotional rollercoster torment.

I also cried at the 5 year free prescription allowance - how nice free medication in return for cancer. 

Thank you for the positive vibes kind words and reassurance 

I'm sick with worry for the mri and ct results telling me it's more than just my initial  biopsy result. 

I'm trying to stay positive and be a fighter but at the moment it's difficult to function doing day to day things .it's engulfing my mind. 

I managed to tell.one of my best friends and her husband yesterday- feel better for sharing and starting to build my team 

I'd love to keep charting Lisa if you would too.

XXXXX

Hi Gemma (& hi Snowdrop!)

Yes, definitely up for chatting and helping each other through this. One day at a time hey.

Your Glastonbury comment made me smile because I thought exactly the same thing!! Some girl was topless on someone's shoulders but had festival glitter tats over her nipples and her boobs were bopping around having a lovely old time and I just thought how nice to be that carefree and to have such carefree, happy boobs! I constantly look at people going about their everyday life and thinking how lucky they are not to have stuff like this to worry about. But I guess they could be looking at me thinking the same thing.
 

Also, I've never liked my boobs as I had stretch marks as a teen (gone now!) so always hid them, I am a B cup and while they aren't huge I have been surprised by how many people have commented on my 'small boobs'! I guess the radiologists and doctors must see some absolute whoppers but I have been very slightly offended! I can't even wrap my head around the different reconstruction options yet but I think some implants will be an upgrade on mine!

i have an appointment with my consultant tomorrow to discuss pet-ct and further biopsy results. I feel numb with fear and have been having such horrible thoughts. I do think this must be the worst bit. I have been taking Phenergan to sleep at night but might have to get something stronger from the GP to calm me.

I loved your comment about building your team. That's such a lovely way to think as they will want to be with you every step of the way. My daughter is keeping me busy with her many classes and she's doing a ballet show today. I went to see Ed Sheeran on Friday with my best friend and broke the news to her. I felt bad for upsetting her but I know she would also want me to tell her. Everything feels like an outer body experience or like I'm not really there. Just got to keep going I guess and my little one makes me have to get up and crack on. My husband is being really supportive but I know it's hard for him too.

So my appointment is at 11 tomorrow and randomly I've also got an appt with a dental consultant at 10 as meant to me having my impacted wisdom teeth out. So much to look forward to this summer!!

it's really helping to hear from people who have been through all this and snowdrop I've been reading your posts. I hope you are doing ok.

Hope you're both doing something that's helping to take your mind off boobs for a while today xxx

Hello Lisa and Sarah

I decided to go into work today , needed some normality but actually it was really hard butting a brave face on and getting on with work. I'm a children's nurse and absoluely love my job and the ladies I work with.

Sounds like you've had lots of lovely things to keep you busy Lisa,  hope Ed was good and yiur daughters ballet show went well today how cute!

Hope the dentist isn't too dreadful in the morning and of course the consultant apt for results goes well. Hoping it's kind news and it gjve you some answers that stop some worries.

Yes I was a bit shocked too when i was talking about my regular cup size being a B my male consultant actually said the words you have small boobies then - was a bit weird !

Snowdrop - yes I remember now you replied to my first post about breast clinic- thank you for remembering. Sorry its all been a bit of a blur. This is absoluely the worse bit the shock and denail and fear and worrying waiting.

Sorry I'm still a bit unsure about all the terminology - I was told I have a grade 2 invasive ductal carcinoma 6cm by 3 cm but as its only a biopsy piece they would now more after MRI and further testing. They haven't said if a portion of it is DCIS ? 

I'm still not sure if I need chemo first then surgery or surgery first the chemo but they said I would need both to start with. Then radio and hormone therapy. They actually said the words as your young well through everything at you which I was a bit shocked by. 

I'm not sure what all the hormone and receptor stuff is but they said it was fed by oestrogen. I've been googeling oestrogen rich food today and decided to cut it out my diet. Milk and eggs mainly - probably won't make a difference but feels like I'm doing something.

You said something in your message today about your armpit lymph nodes sorry i dont quite understand , were they clear on you ultra sound then different on further testing?

My mind is going to explode with impatience waiting this CT scan and reports. I just want a plan and to start doing something

Xxxxxc

Hi hun, they were clear on my ultrasound and when they removed them they were all clear.

I hope you get your results quickly, I am sure they will be okay. They said the same too me about throwing everything at it. 
 

I hope you try and have some sleep tonight, xx

Thank you so much for such a quick reply xxxxx

Thank you for explaining about the lymph nodes .

They said mine looked clear on the uss when they did biopsy but I've stupidly been googling mainly at 2am when it's quiet and I could just scream laying awake tossing and turning. I'm terrified it's going to spread whilst I'm waiting or they pick something up they didn't see on uss.

I'll try and stop worrying. 

I'll keep.you updated with everything.

I really do appreciate your knowledge and calmness xxxx

Hi hun, no worries at all, the thing is even if it's in some nodes they can remove them all, my friend has just had all of hers removed and she has been okay. 
 

You know that sometimes just because it's bigger doesn't mean it's worse, my Tumor was small but was a Grade 3 my friends was 5cm but was a grade2

 I am sure that you scan will be ok as your Ultrasound looked clear in your armpit and that's usually where it travels first, they would of been able too see if it your nodes looked affected I'm sure of it. 
 

Trust me I wasn't calm when I was in the same boat as you! Gosh I was awful for weeks waiting for Results. Xxx

Thank you so much  

I can perhaps rest a bit easier for now,  I've been worrying so much today xx

Hi ladies

How are you feeling today Gemma? Hope you aren't still up Googling at 2am. The tiredness on top of being a busy working mum is hard enough without all this on top.

I had some good news today as my PET-CT came back normal. I cried with the relief. I've got to have more biopsies of both breasts though  as they think I might have DCIS (in both) alongside the IDS on the right. I've been jabbed so many times already my poor boobs and purple and yellow enough already. So still no treatment plan and I just want to get started so having to wait for more appts is stressful. My consultant is always saying she doesn't want to shoot from the hip and miss, and I do get that it's better to get all the info up front. The main thing I'm focusing on is the fact that there's no evidence of spread so far. My nodes are also 'unremarkable' on ultrasound so I'm praying they stay that way when they test during whatever surgery I have.

do you have a date for your next appt or are you waiting for them to come through for the scans? This waiting bit is definitely hard but we will get through it. Sending loads of  positive vibes & vibes for getting a good sleep! xxx

Lisa that's amazing news! 

I've been thinking of you all day, what an absolute relief!

Needless to say still a worring time with more testing and waiting but wow what a good day!

I got my apt for my CT - tomorrow. I'm over the moon to have the date. To be fair I'm pretty impressed,  diagnosis on the Thursday, mri Friday, Ct Tuedsay. They've just said it will be at least 2 weeks for the reports.  I'm feeling sick with worry that it's spread. I just want to know.

Told my manager today and taking a bit of time off to get my head around things xx

So pleased for you Lisa xxxx

Ahh thank you! Yes, it felt like a very good day. feels weird to feel so happy when I've still got cancer but today could have felt very different so im definitely feeling grateful.
 

I'm so pleased you have got your CT tomorrow. I know all these tests are horrible but when you get positive news it does make you feel stronger – it's given me a bit of oomph to want to throw everything at these *** cells now! I am keeping everything crossed for your results meeting – so good we are both being seen quickly! Have you had a ct before? I hadn't and though im not usually claustrophobic it felt very snug in there so I kept my eyes closed and tried to breathe slowly (im not very good at mindfulness but it felt helpful!). Good thing is that you go in and out quite quickly so it wasn't too bad at all. I have to have my new biopsies during an MRI scan as you can't see the areas on ultrasound. no idea how they are going to do that. I also got given a really good booklet today from the nurse. It's from Macmillan on reconstruction options. I'd recommend if you want info on any of that at some point. If my mri biopsies show DCiS in both I will definitely opt for a double mastectomy. One step at a time though.

glad you are taking some time off work to get your head around it all - and hopefully keep busy with some fun things with your little ones (or a bit of child free time might also be nice!)

good luck tomorrow. Let me know how you're doing after. Will be thinking of you xxx

Ahh thank you! Yes, it felt like a very good day. feels weird to feel so happy when I've still got cancer but today could have felt very different so im definitely feeling grateful.
 

I'm so pleased you have got your CT tomorrow. I know all these tests are horrible but when you get positive news it does make you feel stronger – it's given me a bit of oomph to want to throw everything at these *** cells now! I am keeping everything crossed for your results meeting – so good we are both being seen quickly! Have you had a ct before? I hadn't and though im not usually claustrophobic it felt very snug in there so I kept my eyes closed and tried to breathe slowly (im not very good at mindfulness but it felt helpful!). Good thing is that you go in and out quite quickly so it wasn't too bad at all. I have to have my new biopsies during an MRI scan as you can't see the areas on ultrasound. no idea how they are going to do that. I also got given a really good booklet today from the nurse. It's from Macmillan on reconstruction options. I'd recommend if you want info on any of that at some point. If my mri biopsies show DCiS in both I will definitely opt for a double mastectomy. One step at a time though.

glad you are taking some time off work to get your head around it all - and hopefully keep busy with some fun things with your little ones (or a bit of child free time might also be nice!)

good luck tomorrow. Let me know how you're doing after. Will be thinking of you xxx

I'm so relieved for you too

Yes I know what you mean - off to have uplifting news when taking about the cancer diagnosis but a clear scan is amazing xx

I hated the MRi , found it torturous but willed my self not to squeeze the help button as didn't want to have to start over with anything. I tried to do breathing techniques and mindfulness too. 

Xx

How have you been this week Gemma? Hope you're doing ok. I'm off to have another MRI today so they can do even more biopsies (during the MRI). I've gotso many suspicious areas in both boobs. Feeling a bit tired of all this - and being poked and prodded, but also know that I need to do all this to get the right treatment. I might treat myself to some Prosecco tonight! Hope you are having a good weekend xx

Hi Lisa 

Hope you went and got yourself that bottle of prosecco!

I'm just putting the kids down then I'll be cracking open a beer!

Thanks for asking after me. I think the numbness / daze of those initial days after diagnosis have passed but now feel a bit angry and *** off, reality of what lays ahead sinking in and also waves of panic about the staging scan praying it'd not spread further. 

I have an appointment to go back into to see the doctor on Monday- I've got 3 odd patches of smooth soft dark skin under my left armpit and I'm convinced a slight lump. My left boob mammogram was nothing detected and my right armpit nodes were clear on ultra sound. Breast care nurse said it didn't sound to alarming but they would check it out. They wondered why I didn't think to mention it before at my apts , but to be honest i never thought to mention it at the initial breast clinic apt then I was a bit of a wreck the day I went back for the biopsy result!

Might sound odd but just throwing it out there, have you or anyone else considered cutting oestrogen foods out of diet. I've stopped eating eggs and having so much milk but just thought the other day if its oestrogen fed thst might help a bit?

Also my right boob - the one that was biopsied hurts a bit now, I get a stinging pain through my nipple and underneath where the tumor is. 

Just trying to keep myself busy and mind off the situation. It's tortuous waiting for the mri and ct report

Xxxx

Hi Gemma,

Hope you don't mind me jumping in but I honestly wouldn't worry about eating eggs etc because of oestrogen.  I have triple positive breast cancer which means Oestrogen receptor positive, Progesterone receptor positive and HER2 positive.  You can get all different variations of this btw. I'm getting everything thrown at mine too.  The only thing we wouldn't be allowed to take is Hormone Replacement Treatment (HRT) as that's the opposite of what we need.  My breast tumours measured over 6cm too but as far as I know, didn't grow while I was waiting for treatment.  So try not to panic.  I was diagnosed back in November and have had 7 rounds of chemo (a round takes 2 or 3 weeks to get through and is all recovery time), an operation (I got away with a lumpectomy believe it or not and my surgeon used fat from elsewhere to reconstruct what was removed), that took 6 weeks to recover from the op but I needed lymph nodes removed from my armpit and that's uncomfortable, not gonna lie. I'm now on radiotherapy which is much easier than chemotherapy as it just makes you tired at nights and you have to be careful with your skin in the areas they're treating you, putting lots of cream on and keeping sunshine off your skin and then as I'm pre menopausal, I'll start taking Tamoxifen as in one tablet a day for up to 10 years.  Plus I also get thigh injections of 2 drugs every 3 weeks at the hospital for being HER2 positive.  You'll get used to side effects I'm afraid.  Your Oncologist should give you lists of possible chemo side effects when you're signing consent for chemotherapy.  Some of these sound a bit scary but we all get different side effects so you don't know how it's going to affect you until on it.

This makes us stronger.  You're going to surprise yourself and you're going to be fine, honestly.  It's a lot to get through but it's not all at once so you find you get time to let your mind process what we have to go through.  It's one step at a time and a whole load of hospital appointments but they're keeping checks on us, keeping us as safe as they can.  Use this time to see who all can help out with your kids when you don't feel up to it or need to go for hospital appointments.  You'll be at hospital once every 2 or 3 weeks to get chemotherapy into your body and then there are lots of scans.  And you need to arrange to get blood tests done 2 days before each round of chemotherapy so they can tell from your bloods that you're well enough to get the next dose.  It does take over your life a lot but going through it means you likely get to enjoy the rest of your life.  You get lots of help with managing side effects from the nurses.  They don't want to make us ill and most side effects like nausea can be helped with anti sickness tablets etc etc.  

I hope that helps a bit to get an idea of what's coming up and doesn't freak you out.  I've not met anyone who can't do it and being young and healthy sure helps.  You didn't give yourself cancer accidentally, it's likely something that misfires in your cells, not anything you've done.  Hormones eh?

Keep asking on this forum if you don't understand anything.  We're all in this club like it or not but all here for each other too.  It's not as scary as it feels right now to you.  When you're on treatments, you're working towards getting good news, getting the cancer out of you.  You can still have a drink and a laugh when you're up to it but eating good food and getting enough sleep all helps you to heal while you're going through it.  Take it one day at a time and get hugs from your family, they really help xxx

Hi Lisa 

Hope your biopsies under MRI went well today- that's great they'll do thsr on a Saturday! 

Hope you're not too sore after all that and are enjoying your prosecco xxx

Morning Gemma and hello Optimisic

Everything you/we are feeling is understandable. This is A LOT isn't it! I have found myself going down rabbit holes and obsessing about things I see. I have a tiny, fatty lump in my left armpit, which I've had for 2 years. I was convinced this was something to do with the cancer and that cancer must have been there for years but it's just a tiny fatty lump. All the normal hormonal stuff is still happening to us and causing its own symptoms. Hopefully tomorrow your doc will reassure you that it's nothing to worry about.

re foods, my rational brain totally agrees with optimistic and the doc and mine have only mentioned drug hormones and that I should take any meds containing these. My husband asked in an appt if I should be doing anything differently and doc said no. My irrational brain worries every time I have an egg or a latte! But the thing I'm most worried about is my blooming period every month. I asked why they don't give Womens with hormone positive cancers drugs to block the hormones immediately on diagnosis (eg tamoxifen for me) and there is a good reason it seems. They need the final pathology report of your surgery and this can be skewed if you start taking the hormone blockers first. That's if the plan is for surgery pre-chemo.. I don't know about when it's chemo first.
 

i found yesterday's tests hard and cried on several people!They we're all very nice. From the colour of my boobs they can see they have already had a lot of tests! It wasn't the procedure it was that they can only do one boob at a time so I have to wait for another appt in 10 days time to get the left biopsied (again). That will be 7 areas tested in total. They said Brexit had caused issues with ordering equipment needed for this particular form of biopsy so it was harder to get hold of some materials needed. It's just so many tests and so much waiting. I feel better today. The Prosecco must have helped :) 

hope you feel better after tomorrow and that your kiddies are a nice distraction from the scanxiety.

thanks for all the info re chemo and how you're finding it optimistic. I hope you are feeling good. So good to hear from someone who knows. Did you have a port or picc line inserted for chemo?

have a good day everyone xxx

Good evening everyone 

Hope you've had lovely weekends, and kept busy .

Hi Optimistic , thank you so much for taking the time to share all thar information and advice . I've read your post a few times now and it really does help to hear in detail from someone who gone through and going though the same process, thoughts and emotions. Perhaps I'll stop feeling do guilty with the lattes and will start having scrambled eggs for breakfast now!!

Lisa I'm sorry to hear you've needed 7 biopsies. Your amazing for getting through all that. I somehow fainted during mine it freaked me out so much!!!

It's a pain having to wait for all the tests and investigations to be completed before any treatment but completely understand why they do it that way. Like you I just want it taking out like yesterday! 

I'll let you know how the armpit check goes tomorrow.

Hope you don't have to wait too long for biopsy results

Xxx