26 diagnosed with grade 3 HER2 positive breast cancer

I’m 26 and found out yesterday I have invasive ductal type 3 stage one breast cancer HER2 positive. I will go through 5 months of chemo, lumpectomy or mastectomy and hormone drugs too.  I’ll also have my eggs frozen

I need to have more tests to check it hasn’t spread and I feel very anxious, my tumour is pretty big around 5cm, I have such small boobs it's as though it came overnight but this clearly can't be the case, I pray it is contained to just my boob and that the tests show everything else is ok.  It feels so surreal, like a bad dream.  I’m trying to take it one day at a time, I live away from home with my partner and scared whether I should go home for the treatment as not sure how hard it’s going to be.  I want to keep life as normal as possible but fear what I'm facing is maybe more than I'm prepared for here.

it’s a lot to accept and face, I've read a lot of forums and know I'm not alone, would be great to connect with anyone who's going through or been through the same thing.  
 

we can beat this! ️Xxxx

  • Hi there, 

    So sorry to read of your diagnosis. I am now out of my main treatment (still on herceptin injections until March next year) and had grade 3 HER2 also, but was diagnosed this time last year and was just about starting the egg harvesting process. I understand the confusion as mine too popped up overnight and couldn't get my head around it, but it was reassuring feeling it decrease quickly after chemo started. 

    That's great you're taking it one day at a time. It feels very surreal and the end of treatment may feel so far away, but once you get started it goes by quickly. Re where to live- it's tricky not knowing how you'll react to treatment and how to plan. I was fine and worked (online and from home) throughout treatment and only had 3 days off with fatigue, but other than that I coped okay, but it definitely helped having someone cook for me etc. when I didn't have much energy. However, some people may be more unwell and need more support. If you move home will you still be treated at the same hosptial? If yes you can see how it goes and move back home only if you need/ want to? As for the emotional side, it definitely helps having company for distraction etc., or just to rant when you need it.

    If you also use instagram, there are lots of young women posting about their experiences (search for breastcancerunder30) and the breastcancernow team are hosting some in-person support days over the next couple of months for younger women to connect if you'd find that helpful. 

    Good luck for the scans- it's the worst part of treatment but fingers crossed it's contained for you and you can start your treatment asap. 

     

  • Hey Trainee, So sorry to hear you’ve been through the same thing, your message has made me feel so reassured, thank you so much for sharing with me. Congratulations on finishing the treatment!! It’s so inspiring to hear about women who’ve been through it. Your experience and suggestions have given me some peace of mind! That’s great you had an ok time on treatment, I’m hoping I will be the same, did you go through chemotherapy as part of your treatment? Did you lose your hair? I’m quite scared to look physically unwell as trivial as it may seem. I want to try and keep life as normal as possible and not let this define me. I will definitely check out that IG page! If you have any other tips/tricks that helped you get through it please let me know. You sound incredible so proud and happy for you to be a year from diagnosis, I can’t wait to be at this point!x
  • Hi,

    Totally understand about wanting to feel and look like your normal self. I was the same and used the cold cap during chemo and it worked quite well at keeping my hair (I lost a lot from the crown but it started to regrow during the second chemo medication), but I know that not every hospital offers the cold cap (talk to your breast cancer nurse about this option as they'll be very familiar). However, either way, it grows back very thick and fast, and loads of women I've seen have been okay with just wearing scarfs, so do what feels most comfortable for you. 

    The IG thing is a search term, not a particular page, so if you search under the 'tags', you'll find so many women all over the world similar age to you going through this, and all are at different stages and very inspirational. I'd only recommend taking things day by day, listenng to your body, don't deny yourself a treat now and again, don't push yourself too hard, and reach out for support when you need it! 

    It really does go quickly- make sure you look back on your post in a year's time as you'll probably be here offering advice to someone else starting the process :happy: x 

  • Hi 

    I was diagnosed with lobular breast cancer in March of this year HER2 grade2

    I had a lumpectomy 8 cycles of chemo which I finished last month & completed radiotherapy last week 

    Had a clear mammogram in December & discovered lump beginning of March 

    Try to take one bridge at a time as hard as it is 

    I cold capped during chemo & kept two thirds of my hair 

    Chemo hard but positive mental attitude essential 

    Hope all goes well

    Jackie

  • Hi Katyffith, 

    Reading your story is like reading my own, although it looks like I'm a few weeks ahead of you. I'm 30, and have been diagnosed with the exact same type of breast cancer (invasive ductal, grade 3, HER2 positive) about 3 weeks ago. And my world has been upside down since. But in a way it is really nice to hear someone is in the same position as I am!

    I've had all my scans now and I know how scary it is waiting for the results. The only advice I can give you is to not overthink things until you have all the answers (although I know how easy this is to say and how damn hard it is while you're waiting). And your reaction on wanting to keep life as normal as possible, I have exactly the same!! But I think I've got to try, and then adapt if I need to take a step back.. 

    I'm currently going through fertility treatment, have you already started yours? Do you know when you'll have your CT, MRI scans?

    I hope all your scans come back clear, we can and will beat this!! Xxx

     

  • Hey,

    This is so reassuring to hear, thank you so much for sharing, yes I can't wait to be a year down the road and hopefully helping someone through as you are.

    I have my CT scan tomorrow and follow up appointment next week, can't wait to get more answers and info on my treatment plan.

    Thank you again for sharing you've made me feel confident and strong xx

  • Hey, 

    Oh I'm so sorry to hear you're going through the same, such a whirlwind of emotions, amazing you've had your CT scans, I pray your results come back clear, when do you get your results?. I have my scan tomorrow and follow up appointment next Thursday, I can't wait to get more answers and hopefully some reassurance.

    whatever it is we will get through this!! Feel free to message me any time if you want to speak to someone going through it.  I've ordered some receipe books online I want to eat as healthy as possible I've been looking at alkaline diets, lots of fruit and veg 

    xx

  • Thank you so much for sharing, this gives me confidence and reassurance. Congratulations on finishing chemo! I hope you're feeling well in yourself, you're right PMA the only way through it!

    x

  • Thanks for your kind message! 

    I received my CT scan, MRI and bonescan results, which all came back clear. I've never been happier, since 3 lymph nodes have also been affected I was super nervous for spread.

    They did find another mini tumor (3mm) behind the bigger 3cm one on the MRI, which I think comes from the fact that I have a lot of DCIS in my breast around the actual cancer. But since I'm looking at chemo followed by a full mastectomy, it apparently didnt impact the treatment plan. 

    Currently just going through the fertility treatment, so hopefully I can start chemo soon (never in my life did I ever think I would say those words). Have you already started yours?

    I hope your scan went ok!! I have all my fingers and toes crossed you get the results and answers you want asap. Apparently our type of cancer reacts really well to chemo and the herceptin, so we will beat this!

    Please keep us updated, and if you ever need to vent, yell or talk nonsense, you know where to find me. 

    xxx

  • Hi both,I just wanted too say Hello, I'm 38 and have two young sons, it makes me feel less Scared reading you are also young, 

    , I am constantly googling to find some hope I  and read your stories,I am Stage1a invasive Ductal 
     

    I am sorry that you are also going through this so young, I have had my Lumpectomy and it's been re graded too a Grade 3 it was a 2, the Grade really scares me and I am stuggling to process it all. I am going to ring my Cancer Nurse later too ask about the Grade as in the meeting it was a bit rushed. 

    They have sent the T too America to see what treatment I will have. Trying too stay positive but I don't think anyone really understands.

    I hope all your Scans are clear and your Surgery goes well. 

    love Sarah