Newly diagnosed IDC. Gripped with secondary fear! Breast feeding mama needs help

Hi everyone! This is my first post on here and really struggling with this anxiety train I’m currently riding! I’ve just been diagnosed with grade 2 IDC 11mm although they’ve found a ‘large area of concern’ which I’ve just had a further 2 biospies for. I’m actually losing the plot at the moment with fear! To add to this rollercoaster from hell, I’ve got lower back gnawing pain which I’m convinced is secondary. No lymph involvement they can see but still convinced because of the large area they’ve now found, that it’s spread. Ibuprofen only dulls the pain! They’ve offered a bone scan but I’m beyond terrified!!! I’ve got 3 young children including a 7 month old baby that I’m trying to juggle (and breast feed still :weary:) but the waiting and secondary fear is all consuming. Won’t be able to see my baby or kids for 24 hours after test which is just heartbreaking even though I know I need to prioritise myself and wellbeing. Not sure what I’m looking for in this post- I guess just need some wise words and to not feel so alone.

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Hello :slight_smile: I’m so sorry you’re going through this. I also have been diagnosed with IDC grade 3 ++ her2- 9cm tumour and 2 other smaller tumours in my right breast. Going through curative treatment right now. And my recent ultrasound scan has shown a complete pathological response after 4 rounds of EC (I’m having 16 rounds)
I hope my story/diagnosis may give you a little comfort.
I was diagnosed in February and went through that absolute shit show of emotions too. I had 4 biopsies 2 on the breast and 2 on my lymph nodes. Unfortunately it had been confirmed that the cancer has been detected in my lymph nodes and after a scan it was determined that 15 of them were suspected to have cancer…
I also had that secondary fear and I went through every emotion possible. I have a 3 year old boy and a 18month old little girl. I was (and still am) petrified that I was going to leave them without a mother.
My doctor sent me for another scan and there was a suspicious area in my liver, so naturally I was convinced it had spread and I had metastatic breast cancer.
I can’t even remember the wait! I was in a state of shock while I was waiting for my results. Thankfully it was just cysts, nothing to worry about. My lymph nodes were doing a fantastic job at keeping the cancer contained. My treatment is curative but that doesn’t mean once I’m cured I’ll be “safe” I don’t think anyone is… I’ll probably always have that fear of secondary breast cancer but it’s not going to stop me fighting for happiness and for my life.
Since all of this has started i honestly feel like I’ve been revived. I have a new appreciation for life, a new outlook and a new happiness that has only come from facing a fear I didn’t know I had.
The point in all of this is you just never know what is around the corner and you must trust your doctors and oncology team that they are doing their absolute best for you. Your anxiety will calm once you start your treatment and you realise it’s working. You will be ok, I promise you that. Whatever the outcome all you need to do is look at those little faces and then the fight will come naturally, you are stronger than you think.
I hope that me sharing my diagnosis and how “big” my cancer is gives you a little hope that it can grow massive and still not spread. Not all cases are the same obviously, but in my case my whole right breast plus 15 lymph nodes had been destroyed by cancer but it’s not secondary. It’s still curative! My thoughts are with you :heart: good luck :crossed_fingers:t2:

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I’m so sorry to hear what you’re going through @mimiluluiv although I’m glad you’ve reached out here.

The forum is a very kind place and I hope you find the support you are looking for. The anxiety caused by waiting and uncertainty can be overwhelming. Please know that our nurses are here for you to talk things through here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.

We recently did a Facebook Live on dealing with stress and anxiety following a diagnosis that you may find useful.

We’re thinking of you,
Lucy

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Thanks so much @kingsbreasts for sharing your story! Despite loads of amazing support around me, it’s different knowing there are others having the same fears and challenges as me. How do you deal with the mental side of things? Don’t think it’ll ever disappear but wondering if there are any tips to help it subside somewhat? Thank you again- your response means a lot to me!
Anna x

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@mimiluluiv hang in there, the waiting is absolutely the worst and I feel you, especially with young children, your mind will be racing.
Speak to us, speak to your nurse if you have one. They have been so supportive for me and even if you just need to get the words out, they’ve heard it all before.
Hopefully you’ve got a timeline for the bone scan? Hang in there!! xxx

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@mimiluluiv I had lymph node involvement and I remember sitting with my head between my legs when the doctor said I needed a CT scan, it was like the movies when everything spun round and I felt sick. I was absolutely convinced it had spread and although everyone said ‘the chances of that are slim’ etc… the chances of me gettting bc were slim and I’ve got that, so none of the usual stuff helped. I even went on stage 4 forums to see how they were coping - it was like I was going mad. And yes, the worst was my children (boys 14 and 12) convinced that was it for them. Truly awful dark times.
Nothing helped except trying to cling on to that logic … don’t let the ‘monkey brain’ take over but think of the scientific evidence. The lymph nodes are amazing… they trap the cancer and lots of women have lymph node involvement and it doesn’t spread. The lower back pain is probably due to you having 3 young children, breast feeding and probably carrying a 7 month old around!!! xx

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You certainly are not alone in all this. There’s a lot more people going through it or have been through it around than you think. Opening up to people about what you’re feeling definitely helps. You’ve done the right thing by reaching out to us all on here :slight_smile:
mentally it’s been rough and I’ve had a few panic attacks but it’s been so cleansing to talk about it. Literally to anyone that will listen. It’s helping me accept it all and understand my emotions with it all by talking it through and being honest about how I’m feeling/coping. My partner has been brilliant and I’ve been honest about how I feel and how I expect I’ll feel after surgery etc…
My main “mantra” is I can’t do anything about it… I have cancer and I have to have a mastectomy to ensure my cancer is gone so what good will it do being sad about something I can’t change. My kids have been a great source of happiness during this time as I dont want it to effect them in anyway so I try to keep myself positive and “normal” around them.
You can’t change what’s happening but you can change how you handle it. Talking about it and accepting it and definitely don’t keep anything in. If you need to scream then do it :slight_smile:

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I’m so sorry you’re having to go through this. I have also recently been diagnosed with grade 3 cancer with lymph node involvement. I had a mastectomy and 15 lymph nodes were cancerous. For me I found the diagnosis part the worse and waiting for my mri scan results and luckily it was clear. I also started to read about grade 4 and what that means. I found it helped knowing that some people who have been diagnosed with this there cancer disappeared. Treatments are amazing now and lots more in development. I also have young kids a 2 year old and pregnant. Also try and think of the positives that so far it’s only in the breast unless you hear otherwise. I hope the scan results go well x

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@donna_51 thank you! Needed this! Spent a lot of time trawling the forums too. It’s so easy to let anxiety wash over you when you hear ‘BC!’ I’m normally very logical and positive but this whole process has driven me to an incredibly dark place. The kids keep me momentarily distracted but then at night, I’m left in Google hell (know I shouldn’t) with just my paranoia to keep me company.

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@kingsbreasts same here! Need to talk, talk, talk to get through the day! The kids are great distractions and the baby (Ivy) certainly keeps me on my toes but then I look at her and a sadness washed over me. Start feeling the anxiety bubbling up when I think about how young she is and her mama might not be around to see her grow up. Really struggling to focus on any positives just in case I’m knocked down again. . . . Originally went in with breast feeding nipple lump (disappeared now) but they found a dark shadow on the ultrasound. Told that they didn’t think it was cancer . . . It was! Only 11mm though so totally treatable . . Nope . . . Another large area of concern & very likely mastectomy. You can see why I’m struggling with worst case scenarios. Hearing everyone’s stories & support definitely helping!

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@rosa1 congratulations! Hope you’re feeling ok with this pregnancy? The stage IV stories are a complete inspiration. Not sure I could ever be that strong. Definitely helps though! I’m terrified about this bone scan but know that I need to tackle what I’m facing head on. Better to know the full picture than suffer in silence.(I’m writing this with my strong head on, I’ll be in pieces again in a few mins no doubt)

Hopefully one day you will thank that breastfeeding lump as it has saved your life! It’s too early to be grateful but knowing my bc was found on a routine scan that I could have missed or rescheduled was another positive thought. It’s early and treatable… keep that mantra up!!!

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I would’ve totally put the cancerous part down to breast feeding so definitely grateful for the other lump. I struggle to get my head around how it’s all unfolded! It was actually Princess Kate that prompted me to get the lump checked in the first place and I wouldn’t call myself a royalist in the slightest. Something in her story made me think I should finally get it checked out. Sequence of events that has hopefully saved my life!

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Oh I completely understand, everything they tell you just feels like another dagger to the heart. My original concern was the lump I felt. Was small to start with but then it grew quite big in a matter of weeks. The doctor first said she suspected it to be a cyst but sent me for a biopsy to check it out. That’s when the ultrasound tech saw the size of the lump and the other 2 suspicious areas. Then the enlarged lymph nodes. I went in thinking it was a simple cyst to then be told at the ultrasound appointment to “bring someone with me when I come for my results” they didn’t need to say anything else, I knew then it was cancer but obviously I didn’t know how severe. It completely sucks but there’s nothing we can do about it besides follow our plan and trust our oncology team. We can take our own mental health into our own hands and when we feel like it’s consuming us again we can distract ourselves with something that makes us feel better. I’ve found reading to be a great form of relaxation. Also I’ve dramatically reduced my time on social media, the algorithm is now only showing me cancer related things and it’s making my own mental health worse. I feel much better now that I’m not seeing it all the time :slight_smile:

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Hi @mimiluluiv, your fear and anxiety sounds so familiar and completely normal. I have a 3 y/o, a large tumor, lymph involvement and high oncotype score but luckily no sign of spread on my scan, (though a persistent cough which is a worry) I went through a stage of every appointment leading to bad news, more appointments and more waiting. I did get to a realy dark place and couldn’t think about the future without crying. BUT I’m now in treatment and it does seem more hopeful. People say its better when you have a plan and it is, it’s not an instant mind shift but you’ll find your focus does shift.

Google is not our friend and, for me, even though the secondry sisters are inspiring they just reminded me of what could happen so I’ve had to unfollow them and stay away from those forums. I’m still getting loads showing on my feed though like kingsbreasts says the algorithm is a pain and doesn’t help metal health.
It may be worth talking to your GP about counselling or making use of some of the charities that offer it. I’ve had some locally and I have some mild antidepressants, i know they’re not for everyone but they’ve helped me.
I really hope you get good news for your scans, sending hugs xxx

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@kingsbreasts dear lord! Whilst it’s reassuring to know I’m not the only one, it’s also worrying that it seems to happen more than it should.
Good shout on the social media side of things. It’s showing me all sorts of things I don’t need to see at the moment.

@tori123 thanks for sharing your story & for your support! I really do hope the anxiety will ease slightly when I have the plan. Definitely need counselling!! Will get that ball rolling over the next few days

@mimiluluiv I hope you get good results from your scan. I hope you don’t have too long to wait. When is it? I totally understand your anxieties. I felt that way at the start. The pregnancy is going ok thanks. The diagnosis does take away the excitement but I’m just trying to take one small step at a time and setting small goals helps. Trying to keep busy and do nice things that will make you happy.

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I too had this intrusion into my social media life - you can go into settings and delete your search history - I did this and have continued to regularly and it has cut down the uninvited intrusion to Facebook friends who I still want to read about! Hope that helps. X

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@rosa1 no date yet :woozy_face: Have you had all your treatment or will you need more when the baby arrives? X