Diagnosed this week

Diagnosed with breast cancer Recently diagnosed with breast cancer
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I was diagnosed on Friday with ductal invasive breast cancer - I’m not even sure if that’s the right term but I’m lying in bed with my two year old and can’t get to my notes. I know I’m oestrogen + and my HER2 is inconclusive so we’re waiting for that to determine treatment. 

I’m 36 with a 2yr old and a 4yr old and my husband is really struggling. I’m terrified. I run my own business, I’m always the one that drives things forwards and I’m so scared that I’ll have to leave my kids. 
Writing this feels incredibly melodramatic but I don’t want to worry my family anymore than they are worrying. 
I keep crying at any given moment and I never cry. I feel so guilty that I should have been healthier or done something to prevent this from happening. 
I just want to talk to someone where I don’t feel terrible about making them worry and feel scared or sad about what’s happening to me. 

I told my GP that ‘I might as well go’ for the screening and she didn’t think I needed to go. So it doesn’t even feel real yet.  
Just any words of wisdom or idea of what’s to come would be great - especially with how to help my husband and explain to small children about what’s going on. I’d be so grateful. 

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Hi

Take a deep breath , it’s going to be a rollercoaster I am 64 I was diagnosed with invasive grade 3 cancer which had spread to lymph nodes in January when l was told I was arranging my funeral but six months on I got my head around this thing called cancer , I have had my mastectomy all my nymph nodes removed and now started my chemotherapy treatment and to date l feel great.
I take everyday has it comes don’t look forward just take it a day at a time and be positive. Get walking , get fit l also do yoga and I have signed up to calm app which l found helps.

it is scary in the beginning I had to have scans before I had the operation to see if the cancer had spread thankfully it hadn’t it’s all confusing stage ,grade ,hormone related think of it as “whatever”, But when you do go for your appointments take a note pad and write down everything it’s a lot to take in.  Please do not goggle anything because it’s all rubbish , just stick to McMillan and this site , the breast team are brilliant and are always there to help you.

its going to take you a week or so to except this , but take it in , take control don’t fight it , it’s not worth it, because there is so much treatment out there for breast cancer and plenty of successful stories .

just take time to except this , don’t beat yourself up it’s not your fault you got cancer I am 64 healthy fit, I never thought I would have got cancer ,I know  It’s hard to say be positive , but i would say be strong for your children and your husband in a few weeks you will just go with the flow.  It does get better but it is going to be a little bit of a bumpy ride until they decide what operation you will have and what treatment you may need. When that is decided you can start looking forward again but since I was diagnosed I don’t look to the future , l just take every day has it comes and enjoy it.

CANCER IS NOT GOING TO RUIN MY LIFE , ITS MADE ME A STRONGER AND BETTER PERSON.

Books l read

Victoria Derbyshire dear cancer love Victoria
The Secret

Take care now , deep breath you will get there and them tears will soon dry up

xxxx

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@besidethesea  

I am so sorry that you need to join us on this forum, but it’s a great place for ranting, finding support, and dumping all your worries. No matter what you are going through, there will be many people on here that have been through similar and can offer advice.

It is awful to hear the words, you have cancer, especially when you are not expecting it, and then you’re left waiting… to find out what happens next…with only half a story you make the rest up and it has to be the worst things you can think of… and you search google because that will give you the instant information the doctors won’t/can’t, and that makes the situation feel even more bleak.

Everything you are saying sounds normal. I remember a friend who also has breast cancer tell me I would be happy again and I thought she was mad! I have just had my first year anniversary since diagnosis and I still cry when I think about it in any depth but yes, I am having lots of happy days.

You didn’t make this happen, it is not your fault and it is very likely, with the medicines available, that you will be here for your children as they grow up but your husband may have to take the ‘driving’ forward role for a while and you may have to let everyone else look after you.

The breast care nurses at your hospital should be able to offer you support, as will the forum here, and the nurses on the helpline. There should be a wellbeing centre or Maggie’s attached to your hospital - ask your breast team how to contact them. 

I personally found that once I received my results (ER+, HER2-, grade 2, multi-focal, biggest tumour 55mm, no spread on CT) and got a plan, things started to feel less out of control. Just waiting, not knowing, imaging all sorts was definitely the worse and I’m afraid that is where you are now.

Take one day at a time, try and get out for a walk every day if you can (feels less claustrophobic, passes the time, helps you sleep at night, helping to strengthen your body for the next stage), eat well and reach out to all the places above to off load and get the support that can help you.

Once your team have an idea of size, grade, hormone status, HER2 status, then they will offer you the best treatment. This may be surgery - lumpectomy or mastectomy (with or without reconstruction). In addition you may be told you don’t need chemo, or you do - the same with radiotherapy. Hormone positive breast cancer means you will be offered hormone blockers for up to 10 years. Breast cancer needs oestrogen for fuel. No oestrogen, no fuel, hopefully no recurring cancer… You may need further tests like MRI or CT scan, or gene testing like oncotype (helps understand if cancer will be useful in your case). The treatment can’t be unlocked until the background info is available. Do you have a date when the HER2 status will be known? Have you been told about any further tests/appointment dates?

If you look at previous posts, you will find people on here who had treatment 10, 20, 30 years ago (and remember medicines were not as good then).

Nothing you said is melodramatic, it is normal, just not nice. You’re on the rollercoaster going round and round, up and down and feeling dizzy with it all but can’t get off. It will stop though… just hold on at the moment until it does.

Try ringing some of those people tomorrow…

Big hugs,

Laura

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Hi @besidethesea  

I see you have had some advice from  @Laura R and @janeymay60 but I really felt for you and just wanted to say that everything you are feeling right now is normal for your situation . I was the same - one minute OK the next a complete mess . You certainly aren’t being melodramatic and it isn’t your fault  -I also blamed myself ( I’m too fat / I don’t deal with stress well and so on ). When I went to my first local Breast Cancer Support Group there were women of every height / build / age / race plus a couple of men as well - it’s just one of those things.

One of the hardest things ( and many posts on this Forum confirm this ) is the waiting / the not knowing and feeling that your life is suddenly out of your control and being dependent on strangers to tell you what comes next. For someone like yourself who is used to driving forwards / taking the lead in everything that must be especially hard . I found when I knew what I was dealing with and had a proper treatment plan I was able to start reclaiming some control . It isn’t advisable to Google too much as already mentioned but because I asked lots of questions my BCN sent me a bundle of info. which I read cover to cover . That might not be for everyone but it helped me feel a little better .

 I also tried to do something that I loved every day usually in the morning , and was happy in the moment which gave me something to look forward to / hold onto in the evenings which was when I felt at my lowest . 

 I can’t give you any advice re your children as I have none myself but my partner also reacted badly and didn’t want to talk about it with anyone . I did try to seem more ok than I was for his sake - he tends to withdraw and clam up when he’s upset but I persuaded him to tell a couple of his friends so that he would have someone to spill over to if needed . Do you have a good friend or relative you can speak frankly to ? Quite often you end up putting on a bit of an act and minimizing everything to prevent other people from going off the deep end - it’s enough dealing with your own emotions without theirs as well . We would all love to feel positive all the time but it isn’t always possible and if there’s someone who gets it and can just listen that’s also helpful. 

There is a good men’s section and a family section in this forum which might be helpful for you and your husband. He may have to take a more active role for a while but once you know what’s what you should be able to organize ahead which might make things less stressful. I don’t know what your business is / entails but I do know people who have managed to work through quite a lot of their treatment - again it will be helpful when you know what that will be . 

I wish you all the best and hope you get the answers you need soon.

Joanne. X

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Hi, I was diagnosed with invasive ductal/ tubular cancer in my left breast on 27th April this year. I had a lumpectomy on 16th May and had the all clear from it on 2nd June. I still have to see an Oncologist as like you my Oestrogen and Progesterone receptors were positive so I will need to go on Anastrazole as I am 53 and post menopausal. 

It is a shock, you don’t say whether it has been caught early? My lump was 1.2cm. I had a few lymph nodes removed at the same time for testing. The cancer was grade 1 slow growing albeit invasive so it hadn’t spread. 

My advice is take your time, talk to your Husband, family and Friends. Don’t think the worst, deal with the information you have at the time rather than Dr Google. Write down questions that you have and don’t be afraid to ask them. The breast cancer nurses are amazing and will answer anything they can. 

My surgery was a day case, in and out within a few hours. Two scars, the worst bit was an overly sensitive nipple so I have worn soft cotton vest type padded bra tops for weeks in bed too. 

You will worry but stay positive as this helps you cope with whatever will come your way. 

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Oh Besidesthesea, I am so sorry you’ve had to join this group. Your post could have come straight from me and I completely understand the feelings you’re describing. 

I am 37 with 2 children, 3 and 5. I was diagnosed with ER+/HER2 negative, (this result took a while for me too) Grade 3 IDC. I was also asked by my GP if I wanted to go to breast clinic “for my peace of mind!”

I’m further along than you, I had a mastectomy in May which showed spread to my lymph nodes and I had an auxiliary node clearance today. 

Without doubt (as echoed by others), the waiting is the worst part. It takes time to process and gather information. But once there is a plan and you start doing something to proactively treat it then you do honestly feel better. I know it doesn’t feel like it right now and you will still cry and be scared but it becomes manageable. 

In terms of the children, I would wait to see what the plan is before you go into detail. Initially I was told “just” a mastectomy and hormone therapy so we told the boys I was having an operation and couldn’t pick them up for a while. In all honesty they couldn’t care less! I’m now needing chemo so we’ll have to be more honest with them, there is loads of support of how to tell children from Breast Cancer Now, MacMillan, and if you have a cancer centre near you (Maggies etc). Be honest but make it simple and bitesize. 
I have also told my 5 year olds school (guessing your 4 year old is either at school or starting in sept?) and they have been great and will be keeping a close eye on him and offering support if required but will be lead by me. Telling them was a huge relief. I will tell the 3 year old’s nursery closer to my chemo start date. 
And take the support from those around you, do you have friends, family, other parents that can do play dates? That also takes a little pressure off your husband whilst he processes it all. 

I don’t want it to sound like I have all the answers because I really don’t and I’m still terrified. But you’re not alone in it, this forum is wonderful. It does get a little easier. 
:heart::heart:

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Hi besidethesea I too was diagnosed 2 weeks ago today with this. I too am the ’strong one, the person whom everyone else turns to, the broad shoulders with the wright of the world on them’ & I too don’t let people see me cry, yet burst into tears in a coffee shop with my daughter’s & grandbabies. I am much older than you & I can only try to imagine what thoughts must be going through your head regarding your babies & my heart breaks for you, however we are lucky in respect that breast cancer is so treatable & by the sound of it you didn’t even realise that you had a lump or anything? 

Stay positive & know that there are people like you that are going through the same thing, asking themselves the same questions & thinking how can they possibly ’leave their loved ones behind’ when in reality everything will be fine xxx

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Hi @janeymay60 

Thanks so much for your kind message - as you say below it took a little bit of time to sink in but I think we’re getting there now. 
Life has continued to move forward with kids and preschool and work so in a way that’s been good.

Have you read up much on what to eat during all of this? That’s my next step - making sure we’ve got the right things in the fridge! 

Thanks so much again, this whole process can feel pretty lonely at times so talking to people here is a massive help. 

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Hi @LauraR 

Thanks so much for sending your message below - it’s been a rocky couple of weeks! The appointment I had last Thursday to discuss my HER2 result and next steps was put back to this coming Thursday - a real blow to everyone but at least we’re almost there now. I’m so keen to get the ball rolling on treatment. 

We’ve been speaking to the breast team and life has gone on as we prepare for what’s to come next. The waiting is definitely the worst part. I’m trying hard to stop imagining the worst but obviously it happens sometimes! It’s so great to hear that you’re 1yr in and feeling more positive, knowledge like that is such a boost. 

Thanks so much again.