Newly diagnosed- 35, two kids, terrified

Beautifully said and look forward to reading about your adventures.  

I'm so sorry you are going on this journey too. Its a tough place to be. I'm 36 with 3 children under 6. I'm completely heartbroken. Every time I think about the rough road that's coming I feel so sad for them. 

I too have breast cancer. I was diagnosed last week and feel like it be been a complete blur. I've been diagnosed with grade 1 invasive ductal cancer with DCIS. last week was a whirlwind of tests, biopsies, MRIs, pre-op, the list goes on!

I had good news yesterday that the HER2 is negative. And I was unofficially told that the MRI has shown that the lump is smaller than expected, as well as the 2 other spots they biopsies last week were nothing to worry about. I also had my op date confirmed for 27.10.2022.

This afternoon I was thrown in to a bit of a spin as they have asked to do more biopsies as they want to be extra sure (and the nurse made a mistake when calling me). They also want me in to discuss the MRI. My mind is in overdrive. I was so relieved yesterday that the plan set out seemed to be the plan going ahead. I'm back a couple of steps though now with more waiting for tests.

How are you getting on today? I'll be thinking of you tomorrow xx

I'm so sorry to hear you're in the same position, I don't know about you, I desperately want to keep it together for the kids, keep the routine going, act like everything is normal and then in the next breath, want to curl into a ball and write letters to the kids encase I'm not around on significant birthdays... its so dramatic in every direction and each emotion is so raw.

The not knowing, the possible change in treatment plan, more tests, must be agony. I know I'd be super upset too, just the waiting on the MRI results is terrifying.

I'm keeping busy to distract as much as I can and make the day go quickly. I know I'll struggle to sleep but fancy heading up shortly with a book and a nice mug of tea, get relaxed and then pee 3 times in the night because tea before bed is never a good idea! 

Allow yourself the time to cry, I have definitely felt better after a good howl, and even when I get to a pretty dark place in my head, I have countered with some positives. 

Thank you for your message and thoughts. I'll keep you in mine too and will update tomorrow once I know more. X

I feel exactly the same. I'm keeping life normal for the kids and desperately trying to protect them until they have to know something is wrong. Have you told your children yet? I'm going to tell them I need the op a couple of days before but I don't want them to know much more just yet. They are only little though so may not understand much more. 

My sleep is terrible at the moment (doesn't help that my toddler thinks 4.30 am is wake up time!). I'm absolutely terrified of everything changing. Yesterday I was really pleased as the plan looked to be staying the same as they told me last week (best of a bad situation and all that!). But then the new biopsy has just thrown me right back. My BCN is lovely, but I wish she hadn't said anything yesterday as its made me question all the other results she gave me too, especially the MRI.

Sorry, waffling now! Have you had a treatment plan put together yet? X

Routine and normality is my main priority for the children, I had the same thing 5years ago when I went through a divorce, the stability of our home life was key to their ability to cope.

I told them the same day, mine are a little older and I didn't want them to be scared of the word. I knew everyone around us would know, the kids are so good at sensing when things are a little off so I thought transparency was the best way.

The kids took it surprisingly well, I've got two wonderful stories related to telling them.

My son, aged 11, is the most worried but welcomes the truth. We've spoken lots. When I told him, I didn't say the word breast I pointed at my chest area and he said boob cancer, is it in your boob? We giggled and I said yes, my tit, to which he howled. Then the ice cream truck drove past and he chanced his arm with asking for an ice-cream... maybe a bit of deflection.

My daughter, aged 8, was picked up from school by my mum as my appointment was 2pm and we were in there for nearly 2 hours.

Mum and dad were devastated, that was a horrible part, telling them. When I told my little girl, she was mortified that I'd ruined her chance to have dinner at nannies house. Her exact words.... and I trod so carefully telling her... is that the reason you've come to collect me early from nannies? I thought I was having dinner here.

Little monkeys! But refreshing that they took it in their stride. My son had a cry in school, he is being supported by pastoral care and we talk openly so at the very least, I know he is able to verbalise how he feels.

Sleeping has been difficult. I've always slept really well, out for the count through anything. Now I have very broken sleep with the most vivid dreams/nightmares, some really rubbish stuff playing on my mind but I guess that's to be expected. But the tiredness doesn't help my emotions, I feel more upset because I'm exhausted.

Try not to read into anything more about your extra tests, I know it's easier said than done. Try and see this as an extra MOT on the whole thing, they're checking it all twice (like Santa and his list) to make sure they've covered everything. That's positive.

My partner has been excellent, each night we sit and discuss 3 good things for the day before we end our evening. I'm going to start this with the kids too. Silly thing... today was a good day because we went for a walk and the sun came out. Stuff like that. It puts things more into perspective.

I find out today, at 1230, the results of my MRI and treatment plan. The dreams last night caught up with me again, I'm terrified it's spread. But I'll know soon, I'll let you know what the plan is and then start researching on best things to do etc.

Thinking of you and the kids. Do what you think is right, you know them better than anyone. I believe there are some really good kids books too that macmillan can support you with. Maybe start with a bedtime story as though it is someone else. Talk about it and then introduce the idea it's you too xx sending you all the love xx

Update: MRI results show further instances of cancer in the two upper quarters of the breast so a full mastectomy is required with reconstruction offered.

The other breast is fine and they believe the lymph nodes are fine too.

They said during the surgery they will remove 3 lymph nodes and test them whilst I'm under. If anything untoward is found, they'll remove them all. If all is well, they'll close me back up and discuss whether radio is needed.

Hormone therapy will start shortly and last for 5+years.

I'm so relieved the news is positive in that it's curable. And I'm super grateful I caught it so early.

A full mastectomy is not really something I had considered, I though lumpectomy was as far as we'd get but that's OK, I want it resolved fully to prolong life and success.

Weirdly I feel very odd about not having a nipple! It's so irrelevant in the grand scheme of things but not having a nipple seems really odd to me and it's the first thing I asked about.

All in all, a positive outcome and an action plan that will be in place within 3 weeks.

Thanks again for your support, I really really appreciate your comments xx

Oh I am glad you have your results and you feel more positive. It will be sad to lose a boob but in the great scheme of things it is doable and you will be relieved to have the cancer gone.So pleased for you. Take care.

Evajean

Hi, thank you for updating. I'm so sorry there's evidence of it in the same breast in more than the areas you knew about. But, really pleased to hear the other breast is clear and they think the lymphs are clear! Also good to hear they can test them straight away and do more while you're under already rather than another op. How are you feeling now?

I know what you mean about a mastectomy. I have thought lumpectomy all along but then it dawned on me with the additional biopsies that a mastectomy might be my only option. The nipple bit bothered me too! I've spent the best part of 8 years pregnant or breast feeding so the thought of no nipple feels odd. The tattoos you can have are amazing now though! Have they given you the options of how/ when they will re- construct?

Your children and support network sound wonderful! My husband is really struggling with my diagnosis, more so than me I think. It doesn't help that we are in the middle of moving house and his job is dealing with lots of people in vulnerable situations. 

I love the stories of your children, they sound so resilient! I'm going to tell mine a few days before my op. My eldest worries a lot so I don't want her to spend the next couple of weeks upset. I do have a macmillan book called mummy's got a lump to read to them closer to the time. They are 6, 3, and 2 so the little ones probably won't understand too much.

Do you mind me asking what type of breast cancer they have diagnosed you with? Mine is stage 1 IDC with DCIS. Oestrogen and Progesterone +, HER -.

X Sending hugs. Be kind to yourself x

Feeling very relieved that it's contained in one breast and that my circumstance is curable. I have been looking at mastectomy pics and researching which I have since regretted, my story is different, my outcome will be different and like you said, I need to be kind to myself. 

They gave me two options for reconstruction, either an implant or tissue transfer. I have opted for the implant, for me personally, I want the recovery to be fast to be back home with the kids and I want a simple operation to sort it in one go and quickly. I can understand why people would opt for the tissue transfer, but the artery move, removing tissue from multiple sites and worrying about the blood flow being enough to keep the tissue alive is another stress. Add to that 5 days in hospital... I say throw in an implant and let me get outta there!! 

Your plan on how to manage and tell the children sounds really sensible given their ages, the difficulty will be not allowing them to jump on you like a climbing frame to be as close as (what felt like) back inside your tummy as possible. I remember the kids at that age wanting to practically be in my shirt for snuggles... some of the time I wanted my own space but you can't beat those times or memories. You'll find ways to give the best mummy hugs so everyone is comforted.

The moving and stress of that in general sounds rough and my partner too has been devastated and really struggling. He sobbed when we first found out, he's been really open about how he feels which is very unlike him but quite refreshing (he's military, so crying, typically, is a no no). He said the feeling of helplessness is overwhelming and he wishes he could take this away and deal with it himself. I would feel the same if he had news like mine, I would feel the same for the kids. I think the best thing for us is being completely open about how we're both feeling and just going with it. Crying, ranting, laughing, we're doing it all together and he feels at ease knowing that is the support I need.

I'm not sure I'm familiar with the acronyms people put on here but I have the following on my pathology pack:

Bi-focal grade 2 invasive breast carcinoma. One focus at 10oclock 21mm in diameter and the second focus at 12oclock 4mm - with a total span of 3.5cm in upper outer quadrant. Hormone receptive, NST (don't know what that means) and HER negative.

From the MRI, they said I am stage 1 contained in one breast but the cancer is visible in the upper inner quadrant too. This suggests cell spread and further lumps are likely to develop so full mastectomy required to just clear the lot.

The lymph nodes look good and they'll take 3 out to test and check. The consultant is talking about a curable treatment path which is the best best news. Such a relief but I am terrified of the operation in general. Anesthesia, hospitals, wounds, eurgh.... but a small price to pay for being here.

Let me know how you're getting on with your next steps, I'll be thinking of you x

You are handling this so well! I'm pleased you are feeling good about the outcome, even if the surgery feels scary. Have they said you will need any treatment before/ after the operation?

I took a look at mastectomy scars the other day and was reasonably surprised at how neat some of them are, especially for reconstruction. Have you been given a date yet? 

It's strange isn't it? Sometimes I'm in panic mode, but most of the time I'm strangely calm. Everyone round me is in a flap though and constantly upset! My husband was upset after I had more biopsies this morning. He just said he dislikes the hospital. I think there's more to it than that but he doesn't like talking about his feelings much. 

Yes, the kids are climbing all over me. Constantly! I think I may stay at my mums for a day or 2 after the op just to sleep and have some peace. 

Have you thought about how much time you'll take to recover after? I have a job where I work from a desk at home all day so I'm hoping a week off and I'll feel OK to go back. I'm not sure if it's realistic though. 

I had 4 biopsies today. One of them was pretty brutal and it bled quite a lot. I had another mammogram too. The radiologist said that the 2 biopsies last week came back. One was fibrocystic and the other just breast tissue. She wasn't happy with the tissue as it should have at least had a cyst or fibro centre so she wanted to double check. The mri showed a little area near the original lump but near the nipple that looked different. They weren't sure what it was and said it didn't look like much on the ultra sound. They took a biopsy anyway to be on the safe side. Their MDT meeting is a Thursday morning so I should have all the results by the end of next week. I have an appointment on the Monday though just to talk options if I need it as it is the same week as the operation.

I hope you have had a good day today and are enjoying your Friday night! X