Hi Phili, I'm 26 and I had the same diagnosis in August 2020 and had to stop taking my contraceptive pill. My breast specialist said I could have a none hormonal coil fitted or use condoms... I think those are pretty much our only options :laugh: what's your treatment plan going forward? Feel free to message me if you want too!
 

Lou x

Hi Lou!

Thank you for taking the time to reply. Did you go for the copper coil? I’m trying to convince my husband to be sterilised but he terrified of needles :laugh: 

I don’t want children so would be more than happy to be sterilised myself but apparently female sterilisation is a lot more complex. 

Well, I spoke to my surgeon today and they have changed their minds and think they want to do surgery first. But, my HR2 receptor still hasn’t come back, so this could change again. 

At the minute we’re going forward as if I’m having surgery first, then chemo, then radiotherapy. 

Did you have surgery first?

how big was your tumour? They said mine is about 1.8mm .

Im here if you ever need a chat too! Hope your ok.

Pip xx

The recovery from surgery was a nightmare but I'm really prone to infections... and I have an enzyme that dissolves stitches so my wounds came back open!! After the infection was under control and got stitched back up it wasn't too bad!! 
Yeah if your not wanting children there's no point going through it. I did it and it wasn't too bad, just consisted of hormone injections everyday and scans etc, the actually collection of the eggs was pretty straight forward and recovery was almost none existent!

Yeah the injections are for the white blood cells I think, I have them for 5 days after my chemo infusion, they cause a bit of bone pain but it's manageable haha!

The chemo is a hard one to explain, everyone's experience really is different. For me the first week is a write off, then it's just fatigue. Feel like I've been having a bit of outer body experience :laugh: I'm on EC for 6 cycles

Have you got any dates for you surgery yet? How are you feeling about it all? 
Lou x

Oh god! You poor thing, that sounds traumatic! Thank goodness you were proactive with it and got it sorted. 

You seem to handle your treatments really well. Do you feel you do? Haha you getting a bit trippy on all those drugs? :laugh:

Do you work? I was diagnosed with M.E two years ago, and had to leave work while I recovered. It took a long time but the end of last year I was ready to get going with something again, then this ! Typical :laugh:

No dates for surgery yet. I kind of just feel like ffs, lets go then! Lol. Everything seemed to move so fast when I was diagnosed, loads of scans etc, but now it’s like we’ve just hit a brick wall and I’m sat here waiting. I don’t really feel emotional about any of it, just ready for something, anything, to happen :laugh: But I really am complaining about nothing because I was only diagnosed 22nd dec. It just feels like years ago :laugh:

Hope your well! Xx

I try too! Don't get me wrong the toll the chemo takes in your body and the mental side of it all is hard but I'm a really positive person and laughter is the best medicine! Even when I shaved my head I did it whilst laughing :laugh:  it was traumatic but I was hysterical haha!

I'm not currently working no, I'd just left my job in June after 7 years so I could have the summer off (I was a manager in a supermarket so never had a full summer off) and then got offered a new job but then got diagnosed so I'm really glad I took the summer! Even though we were in lockdown I made some great memories!! My mum has M.E so totally get where your coming from!!

I get what you mean, I felt the same way! It's like you get diagnosed and have all the information thrown at you then it's like... okay now what?! I felt like the wait for my surgery took forever (it was 3 weeks :laugh: ) then after my surgery and recovery the next wait was for the chemo, kind of wish I'd made more of that time!!

Throughout the whole experience from diagnosis to now I haven't really been that emotional either, I've had a few wobbles where it kind of overwhelmed me but I just think there's nothing I can do about it so just got to get on with it!! 
Take care!

Lou x

Definitely the best way to try and be I think. Of course, we’re always going to find that some days are tougher than others. I don’t seem to be getting emotional at the minute, but I do have this almost uncontrollable urge to run away from it all :laugh:

That’s great you has the summer off, funny how these things happen, like you were meant to have that time. Bless her, it’s tough. I’d never heard of it until I was diagnosed. The local nhs m.e rehab clinic was the best thing I ever did. I’m not sure if all areas follow a similar program (I’m in Lincolnshire) but mine was all via zoom and they taught quite a holistic approach to calming the nervous system and rebalancing. Definitely worth looking into what’s available in your area if she struggles with it. 

So good news, had a call yesterday and my surgery is booked for 28th, I’m having a therapeutic mammoplasty and sentinel lymph node biopsy. Pre op next Monday. At the minute we are still waiting for the hr2 results so it could all change but we have progress! My family keep taking the mick because I’ve hardly got any boob as it is :laugh:

Think it’s your chemo tomorrow is it? Hope all goes well 

Pip xx

I was like that at first, I think it's just the unknown that scared me the most! Like what would it be like after my surgery, now it's what will it be like after my chemo etc.

Yeah she seems to cope with it fairly well, she did all the mindfulness stuff when she was first diagnosed. 
It's so strange looking back at last year now, this time last year I feel like I was a completely different person! Definitely believe I was meant to have that time off though!

Ah that's brilliant news! What does this entail? I'm not quite sure what a therapeutic mammoplasty is? Hopefully the HR2 results come back soon and don't change anything!! Fingers crossed! You'll have to keep me updated on how you get on with it all.

Yeah chemo tomorrow for me, taking it easy today with yummy food and some cheesy films :laugh: 

take care!

Lou x

Oh good glad she copes well, it’s tough to live with. Yeah I bet you do. I can see how it’s so life changing . Have you had a lot of support through your treatment?

So from what they have told me so far it’s basically a reduction and a lift. Baring in mind I’m only a B cup not sure I’ll have anything left :silly::laugh:

They are also referring me for gene testing as my cousin was 41 when she died of breast cancer and her mum (my dads sister) has had it, and my dads mum. So if those results come back as positive for the gene I will have a mastectomy. But that will take 4-5months. 

Yeah, like you say could still change with the hr2 but just taking each day as it comes at the moment! 

Perfect! Enjoy!

[@Loulou94]‍  Hi Hun, how are you doing?

Hello!! I'm doing okay I guess! I'm 4/6 chemos down and still hanging in there :laugh: 

How are you?! Did you get the HR2 result back? You had your surgery booked for the end of Jan didn't you, did it go ahead okay? How are you feeling?!

Did you get your gene test results back? 

Sorry haven't been in touch been on a different planet with all the meds!

Hope your doing okay!

Lou x

[@Loulou94]‍ 

Hi! That’s ok I was just checking in! Bless you. Your nearly out the other end now, although I’m sure it feels never ending! 

Im good thank you. But I have caused a few problems :laugh:

my HR2 was boarderline so they decided to send another sample after surgery.

It was booked but I had an allergic reaction to the blue dye while I was in surgery, so it didn’t go ahead. I’m ok now, although I did have to stay in hospital and I’ll have to have tests to see what caused it because it was a bad reaction apparently. Then I ended up waiting another four weeks for a new slot. 

But I had my surgery on 18th feb and it went well. I’m healing nicely. My margins were clear and my lymph nodes are clear too. So really relieved! Still waiting on the pesky HR2. But I’ll be having chemotherapy anyway, so I think I will be starting that in about four weeks. My cancer had grown 4mm in six weeks! So scary they can grow that quickly. 

Hope your ok and the meds aren’t giving you too much of a hard time. I’d love any chemo preparation tips you might have?! 

Take care

xx

Oh blimey!! I hope they get to the bottom of what caused it! I'm so happy you finally got your surgery though! And amazing news with the clear margins and lymph nodes :happy: 

It really is so scary, mine almost tripled in size from biopsy to surgery! It's like they know they've been caught the little chuffs haha!

im glad you are healing well, just remember to take it easy! 
 

I'm doing alright to be honest, had a few low points but keep bouncing myself back round, think it just hits me sometimes what's actually happening. I finally got some meds that work wonders for the nausea and sickness so that's good, although they cause a bit of short term amnesia so chemo day and the day after is like a drunken night out... I know I was there but can't tell you what I did :laugh:

I guess it all depends on what type of chemo you have, I'm on EC which is epirubicin (the Red Devil) and cyclophosphamide. For me I wish I'd known to prepare with senna and lactulose haha, all the anti sickness drugs tend to have that effect! But it can be totally different for each person! Fizzy pop and salt and vinegar crisps have been my go too with the taste changes, I've never been a big fizzy drinker but it just hits differently when you need a sugar hit! Probably the biggest prep would be hair... I was kind of in denial I would lose mine so when it happened it hit me hard, but I left it far too late, there was hair everwhere, all over the house! I wish I'd have taken the shave as soon as it started shedding, but again it's personal choice :happy:

If you want any more info or anything you know where I am chick!

Take care!

Lou x

Oh blimey!! I hope they get to the bottom of what caused it! I'm so happy you finally got your surgery though! And amazing news with the clear margins and lymph nodes :happy: 

It really is so scary, mine almost tripled in size from biopsy to surgery! It's like they know they've been caught the little chuffs haha!

im glad you are healing well, just remember to take it easy! 
 

I'm doing alright to be honest, had a few low points but keep bouncing myself back round, think it just hits me sometimes what's actually happening. I finally got some meds that work wonders for the nausea and sickness so that's good, although they cause a bit of short term amnesia so chemo day and the day after is like a drunken night out... I know I was there but can't tell you what I did :laugh:

I guess it all depends on what type of chemo you have, I'm on EC which is epirubicin (the Red Devil) and cyclophosphamide. For me I wish I'd known to prepare with senna and lactulose haha, all the anti sickness drugs tend to have that effect! But it can be totally different for each person! Fizzy pop and salt and vinegar crisps have been my go too with the taste changes, I've never been a big fizzy drinker but it just hits differently when you need a sugar hit! Probably the biggest prep would be hair... I was kind of in denial I would lose mine so when it happened it hit me hard, but I left it far too late, there was hair everwhere, all over the house! I wish I'd have taken the shave as soon as it started shedding, but again it's personal choice :happy:

If you want any more info or anything you know where I am chick!

Take care!

Lou x

[@Loulou94]‍ 

Yeah, I guess that’s expected. The whole things a traumatic experience on our bodies and our minds! What’s your support system like? 

Have you checked out Penny Brohn? They do loads of free courses and group meetings online. There’s some really interesting stuff on there.

ugh I bet the sickness is bloody awful. To be honest that’s one of the things that worries me the most. Glad to hear you have been given something that helps though. 

Yeah I never realised how many different types of chemo there are. I think they are going for FEC-T but obviously we all know how quickly it all changes so I’ll just have to wait an see. 

Hear if you need a chat

phili xx

I have a really good support system, my mum has been incredible through this whole process, I honestly don't know what I'd have done without her. She took leave from her job and has been shielding with me (I live with her) think I've done her head it at times but we've shared so much laughter throughout this whole thing. I think that's one of the key things, you just have to laugh and smile. I've got some really good friends who have been so supportive too, it's so difficult with Covid as I can't see them but FaceTime and messaging really makes a difference. Even reading people's stories on here makes me feel close to people I've never met but are going through something similar if that makes sense? How is your husband taking it all?
I haven't heard of it no? I shall have a google! Have you found it's helped? 

Im not going to lie to you the nausea was worse for me than the actual throwing up. But again some people get it bad, others don't. My oncologist said I'm very sensitive to the treatment which is why I've had it so bad. There's so many different types of meds for it though. I've found Lorazapam has worked wonders for me without lots of side effects. Ondansetron is another good one but causes issues with the gut.

Ah I've heard of that one, it's crazy how many there are! Think I spent a full day reading about different type of chemo once, I'm one of those people who has to know all the ins and outs haha

have they told you how many sessions or the cycle you'll be on? Do you know if your having radiotherapy yet? I got my first radiotherapy appointment letter through today, seems to have come round so fast! Have you noticed any changes in your ME since the operation? 

hope your still healing well!

Lou x

[@Loulou94]‍ Hi, sorry it’s taken me so long to reply. Things have been mad busy, but in a good way! 

How are you doing? Really pleased to hear you have such a great support system. It definitely helps! Definitely worth checking out penny Brohn. I’ve found the classes really helpful. There’s so much out there! 

So how many treatments do you have left? Hope it’s being kind to you. 

I start my chemo on 12th so not long now. And I’m having the same as you EC. I’m having three of them then three Dox. And the Herceptin injections. So any advice would be really appreciated, and I’ve taken note of the laxatives :laugh:

loved that you researched everything. I’m exactly the same. I like to know all the ins and outs. I even watched a YouTube video of my type of surgery before having it lol. 

My hubby has been amazing, sometimes I think it’s harder for our loved ones because they can’t do anything to stop it all. I think that’s what he’s found the hardest. 

How are you feeling about your radiotherapy?

Im not sure really. I definitely feel better but I’m not sure if that’s down to the m.e clinic or the surgery. I’m sure my m.e and the cancer are linked somehow but I’ll never know. My cognitive function isn’t quite 100% but there’s been an improvement. 

Hugs to you xx

Heeey! I'm doing well thank you! How are you doing with everything?!

ive finished my chemo now! I had 6 cycles in total, I'm feeling fine about the radiotherapy, still got a lot of side effects from chemo but very mild, main thing is the fatigue! I'm just so tired all the time!! Got my planning appointment on Tuesday so I'll find out more then.

I totally agree with how hard it is on those close to us, we have the physical side but I think it's hard for them to watch us go through it.

ahhh it'll be over before you know it chick! I think best advice is if the anti sickness don't work, speak to your oncologist and try different ones till something works! Like I said it took me till my 4th to find the drugs that worked for me! But yeah your oncologist should be able to supply you with senna and lactulose! Eat whatever you can keep down even if it means lots of crap food! And just rest, if you need to sleep go for it! 
im glad your feeling a bit better! I get the cognitive thing, I feel like I've got full on chemo brain at the moment and it stresses me out because I can't always think of what I'm trying to do or say... I know it's not the same but I can understand how frustrating it can be! 
Keep me updated on how you get on and I hope it's not too harsh on you!

Lou xx

[@Phili1]‍ Hey! I hope your first chemo wasn't too bad!! 

Sending you lots of strength and positive vibes :happy:

Lou xx

[@Loulou94]‍ Hey hun. Thanks so much for the good vibes. Take them back they are faulty :laugh:

i seemed to do ok at first. I felt a bit spaced out for 24hrs but yesterday hit and the nausea was so bad. I was writhing all day. Couldn’t get comfortable at all, it was like my body went into shock. I ended up going to my local A&E on advice from my chemo unit. And they gave me an *** injection which helped a lot. I’ve now got tablet form so it’s keeping nausea at bay but only just. Did they ever sort yours or did you have to live with nausea each time? Apparently nausea affects us young ones more. Advice on snack foods? 

How did your appointment go?

phili xx

Oh man my good vibes must be off lately haha! :laugh:
Are you not at a cancer hospital?

Unfortunately the nausea never fully away went with me, my oncologist prescribed Lorazapam though and that worked a treat! 
Ah I'm sorry to hear it's hit you hard, yeah were more sensitive to it I think, but also that EC is brutal!! 
Best thing I found was salty stuff, Knorr chicken noodle soup did wonders! And salty crisps for crunch! Just try to drink loads of fluid, in my head this flushed the chemo out quicker... I don't know if this is true but mind over matter right?!

I had my second radiotherapy this morning, seems to be going well so far, bit of redness and tingling but I'm in and out in about half an hour so can't complain!

It will be over before you know it chick!

Lou xx

[@Loulou94]‍ So the salty crisps helps, thank you. 

I’ve told everyone I’m quitting if it’s going to be this bad :laugh: did you have nausea all the way through or just the first week?

no I’m in the sticks of Lincolnshire. My nearest a&e is 3 miles but my treatments are about 20miles a way, which I could not face feeling sick. I’m going to phone them again tomorrow. I’ve got Lorazapam and now I’m trying cyclizine which is helping but i can’t sit still or lie down. There’s got to be more they can do for it. 

Oh good glad it’s going quickly. I think it must be a shock for your body now your not being pumped full of drugs every 3 weeks. How did you find the Second bit Doxatel? 

Apparently that udderly moisturiser is good for that. 

Phili xx

Ah I'm glad the crisps work! They were a life saver for me!! 
Oh chick I'm so sorry your feeling so rubbish :neutral: it really is a horrible thing for your body to go through, I just kept thinking it's 6 treatments that could save my life, it is hard though you feel like giving up but it's such a short period of time that can give you so much if you get me? 
I was sick real bad for the first 3 treatments till they got the meds right but the nausea I'm afraid stayed, it did get better though, I don't know if that just because you get more use to it.

oh that's rubbish! I'm in Sheffield so I'm at Weston Park. For the first 2 cycles I ended up back there on the assessments unit and nearly ended up spending a night on the ward because I felt so shocking. I really do think it's just a massive shock to the system !! I didn't have Doxatel, I had EC for all 6 treatments, I've read a few other stories though of women who had 3 of each and say the Doxatal is easier on the system!

Dont get me wrong I still have flashbacks of the chemo, I genuinly think it's left me with a bit of PTSD! I remember at week 3 after I'd finished, I had a day where I felt like I was having symptoms like my body was expecting it still! Yess the udderly stuff is great! I use it on my feet as ended up with blisters!

Just take it one day at a time chick, I know it's hard but you got this!!

Lou xx

[@Loulou94]‍ 

Oh god you poor thing! It’s bloody awful, I wouldn’t be surprised if you have PTSD, it really is a trauma for your physical body and your mental health. Perhaps that’s an area the hospitals can work on supporting patients! You should try hypnotherapy to help release the built up trauma.

So I’ve still only had the one treatment but I’ve already lost all of my really thick hair! Saw my oncologist yesterday, and they want to move me onto weekly paclitaxel. In some ways it’s a huge relief because I don’t have to go through that hell again but then my mind is like ugh what’s going to happen this time! 

Trying to stay positive tho, it’s a low dose chemo with it being weekly and I’ll start the Herceptin straight away. Hope your well and recovered from radiotherapy 

thanks for your support, I really appreciate it xx