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

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

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

Oh man! It sounds like you've been hit hard by it chick :neutral:

how come they've changed it? Hopefully it'll be a bit easier on your body!! Fingers crossed!!

ive looked into some councilling from the cavendish center (it's connected to the hospital) as I think it's starting to hit me now that I'm coming to the end and have a lot of time on my hands!

the radiotherapy isn't too bad, it's the early mornings that are hard haha! Being back behind the wheel though, I feel like I've got a bit of the old me back!

im sorry your hairs fell out chick, it really is such a traumatic experience, but we're all in it together! Mine is trying to grow back but it's still very sparse and have bald patches, I look at getting a wig but I think I'm just going to Persevere with the beanies for now. My brows are nearly there but my lashes are growing every which way and backwards haha!

I've started looking at getting a rescue dog so hopefully will have a little companion soon!

keep going you absolute fighter! You got this!!

Lou xx

[@Phili1]‍ How are you doing chick?! I do hope your hanging in there! 
 

Thinking of you! Here when your ready :happy:

Lou xx

[@Loulou94]‍  

I'm so sorry it's taken me so long to reply. I had to take a step back from the whole cancer thing. I'm sure you get it. 

How are you doing!? 

I've finished active treatment, just finishing up my herceptin and zoladex. I've now been diagnosed with BRCA 2 mutation so I've got to have a double mastectomy and a oophorectomy. But I'm ok. Looking at going back to work so fingers crossed I manage it. 

Hope you are well love xx

 [@Phili1]‍ !! Oh my it's so good to hear from you! I was thinking about you the other day! I totally understand you needing a break from it all, it's gets a bit relentless! 
Oh chick I'm so sorry to hear this! I'm glad you finished your treatment, I remember you were really struggling with the chemo! How are you dealing with it all?! Do you still have a good support system in place? 
 

im doing so so, it's been hard trying to live again! The effects the treatment had on my body still takes it's toll, chronic fatigue, pains etc, but I'm still here and thankful for every day!! 
 

I started an access to nursing course last September and looking at going to uni to do paramedic science but didn't get in this year unfortunately! I also got a dog! He's deffo kept me going and gets me out of bed every day haha!

again, so good to hear from you, I'm just sorry it's not in better circumstances!!

keep in touch and take care! Lou xx
 

[@Loulou94]‍  

Thank you! Yeah I'm doing ok, like you I'm struggling with some side effects but trying to move forward! Yes I've got my hubby who has been an absolute diamond throughout! Next task is looking at reconstruction options, which is a minefield. 

Wow that's amazing well done you! I'm sure you'll get onto the course next time. After all you've been through that's such an awesome career to get into. Did you always want to do something like that or has it been a recent decision?

Aw what kind of dog did you get? 

Really nice to hear from you to and I'm so glad your doing well and moving forward as much as possible! 

Xxx

[@Phili1]‍ ah I'm so glad you've got your hubby! What sort of reconstruction options are there? I have a family friend who has just been diagnosed and she's having to have a mastectomy so this is a new minefield to me!

Will you have reconstruction as the same time as the mastectomy or wait a while? Your so brave!

I was always interested but never had the time, but starting from scratch made me want to pursue it! I think after everything cancer related I'm even more inspired to help others in their time of need! He's a zuchon! Fluffy teddy bear he is! Cute as though haha

how have work been with you? 
 

Lou xx

My surgeon is the same one who did my original surgery on my cancer so I'm in amazing hands, but she said I can't have an implant on my cancer side as I had radiotherapy and it can cause infections etc. So there are lots of different flap options where they remove fat from another part of your body and make new boobs. I don't have enough on my stomach but they might be able to do something with my chunky legs lol. The healing is a lot longer with flaps. 

Tbh I would rather avoid having more scars so I'm swaying towards having an implant on my good side, and going flat on the cancer side. Id always have the option of reconstruction on that side in the future. I think they will put the implant in at the same time as the mastectomy. 

What option has your friend gone for? 

Aw I just googled a Zuchon! So cute, literally like a teddy bear! Pets are amazing at lifting your spirits. I honestly don't know what I would have done without my cats! 

That's incredible, well done you! Im sure you'll do amazingly well and your experiences will make you the best ! Are you just studying or working too now? 

I left work before my diagnosis for m.e (which I think was brought on by the cancer growing) so I'm really lucky to have been able to have this time to recover. I had my first job interview the other day so fingers crossed I get it. 

I had my oopherectomy yesterday to remove my ovaries so I'm glad that operation is out of the way !

Phili xx

[@Phili1]‍ that brilliant it's your original surgeon!! My surgeon retired, as did my oncologist... I'm trying not to take it personally :laugh: ahhh I never thought about the radiation after effects! Well either way you'll still be beautiful! 
 

she had her surgery yesterday and had a mastectomy and reconstruction with an implant, just praying for a speedy recovery! Not sure what the next steps are yet!

how are you feeling after the operation? good luck with the interview I'm sure you'll have smashed it!

yeah he's like a little chewbacca haha, I have 2 cats also and totally agree, they really are great for lifting you up when your feeling rubbish!

aww thanks chick, I'm just studying at the moment, I've got post chemo chronic fatigue so even this course is extremely tiring, I'm hoping to go on to get a job between my course finishing and starting uni but still taking it day by day!

lou xxx