Hello out there. 42F here diagnosed 2 weeks ago - initial biopsy and USS suggested grade 2, ER/PR positive, HER2 negative, 19mm tumour.
Subsequent MRI showed 2 tumours (10mm and 15mm) + a 90mm span on non mass enhancement. This triggered a CT scan to make sure “nothing else is being missed”. Had an agonising wait for CT to even be booked, had it done last night and just waiting to hear now. Lymph nodes appeared normal on USS and MRI, but my thoughts have taken me to the worst case scenario as I’m certain many of you will understand. Current plan is for me to have a mastectomy.
I have 2 children (8 and 10) and preparing myself for not seeing them grow up. Feels like I’m in a dream (well, a nightmare really) and can’t quite believe this is happening to me. Even in a case of metastases I am reading that women can live for several years with the advances in treatments.
Please do share your stories with me, I feel very alone having this sneaky b***h of a BC subtype.
Hi @peekaboo212 I’m so sorry you find yourself here with us but I’m really glad you’ve found the forum. For me it has been such a huge support. Real stories from real people. Definitely stay away from Dr google if you can. The only thing I allow myself is some information about my cancer via google ai. That has helped me understand my cancer better and also it doesnt mind me repeating myself
The tests at the begining are absolutely terrifying. At the beginning of my journey I was in real panic mode. I really put my nurses through it haha but the more I spoke with them the better I felt. All these tests are so important. They are mapping out your cancer so that they can arrange exactly the right treatment for you.
Its very easy to slip down a hole of feeling like death is now right around the corner. In my case it followed me everywhere. That’s a very harsh way to think right now. I bet no doctor has given you any reason to think you’ll be dying anytime soon. Breast cancer is treatable. The treatments can be gruelling and harsh but they are backed by years of evidence. Try not to let your mind sit for very long looking so far into the future. I know from experience it doesnt speed this process up and it makes it much harder. I had to get very strict with my thoughts. If therapy is something that has been offered to you definitely give it a go. They will help Concentrate on what you do know and whats happening today.
My mum found her breast cancer at a routine mammogram aged 50… that was 8 nearly 9 years ago and she is thriving.
I found my lump in May aged 39, I was sent away and came back in October. Diagnosed 3rd November. I had an MRI that found a sneaky 2nd lump (ER positive HER2 negative, 2 lumps 23mm and 9mm) ive had 2 lumpectomys, the 2nd was on 5th Feb and I am now waiting to start chemotherapy. Then I will have radiotherapy therapy and hormone therapy. They are throwing everything at it so that my risk of reoccurrance is reduced. I couldn’t ask for more really, I’m greatful for it.
Through all of this it has given me a great opportunity to find some resilience. I have always had anxiety, it morphed into health anxiety a few years ago and so this has literally been my living nightmare. But actually… I’m doing ok! The wait inbetween appointments is a good time to adjust. I’ll never think this is fair but I am accepting it for what it is. And this is all positive. I found the lump and that has saved my life! I know I will always be greatful for that
Stick around here on the forum, so many others have been where you are, you are not going through this alone
Thank you so much for your reply, it’s given me great comfort reading it. Family and friends are well meaning but it is very helpful to talk with others who have also been through it.
You are right - I’ve not been told my cancer has progressed, and was reassured the CT is precautionary and part of the pathway, as the MRI showed more cancer than first thought. But me being me, I’ve gone to the worst possible scenario.
I am trying to focus on the positives - lymph nodes look normal, highly hormone positive tumour (which means slow growing I believe?).
I will lean on my BCN more - I have lots of questions and concerns re: ILC and do tend to drift onto the net for answers (trying to focus on reputable sources though).
I too have had health anxiety in the past (which peaked during both my pregnancies), so I know I’m prone to catastrophise. I’ve had therapy and CBT in the past so I’m well versed in knowing how to manage these spiralling thoughts… but actually trying to practice what I preach is difficult!
I so appreciate you replying, I’m trying to find whatever support/positivity I can. Xx
Hi there. I was diagnosed with Invasive Lobular Cancer last July (6cm) and had a mastectomy on August 10th. I had radiotherapy beginning of October and now on Tamoxifen. I’m 50 years old and was so shocked I think those months passed in a blur but fast forward to now and I’ve been back at work for a few months and feeling so much better. This forum got me through some very dark days
I completely get that. My therapist said recently that I know all the things she talks with me about. I’ve researched anxiety and overcoming it so much but putting it into practice is really really difficult. What better an opportunity to try than now though haha
I repeat a lot of the positives to myself throughout the day. Certain words or phrases, some that I’ve heard from here. One that stands out is “give me a year of your life and I will give you your life back”
“Breast cancer is treatable”
“Thoughts are not facts”
“Not what if, but what is”
and a new one I use is “where’s the proof?”
Just think how much stronger we could be when all this is done. It gives me a lot of hope for my future
Thank you for sharing your story. I’m glad you are feeling better following your treatment. I am hoping I will be the same and come out if this the other side. X
Hey, sorry you find yourself here but welcome. You will find the most supportive group of ladies of all different ages/stages of treatment etc and they have been my literal rock since I was diagnosed last October with grade 3 IDC.
I was diagnosed with a 13mm IDC, stage 1 but they found more suspicious ares so had to have a mammogram biopsy and then an MRI guided biopsy. I’m 34 years old with dense tissue so different things were showing up on different machines, it just felt like a living nightmare and I of course thought the worst but they did come back all clear in the end and it was just the 1 original lump which I had removed in December.
I found the hardest stage was when I didn’t know the full picture of what was actually there and what treatment I would need. But once I found out what it was and when it would be removed I felt 10 x better. There is further waiting periods for the pathology and then the next treatment plan etc but you will get through it.
Lean on as much support as you can, talk, cry, scream, vent, be angry as much as you feel like it and then go on and enjoy your day as much as you can. I used distraction, I’ve got a 2 and 5 year old which helps we did lots of nice trips out and lots of play dates with friends but I did talk about my feelings with family and then went on with my day. And please don’t Google
You will get through it just like lots of the ladies on here have. I asked for some positive stories and there was so many ladies on there that had come through the other side and were living their best lives 15/20 years on who had been through all different types of BC. if you would like me to tag you in the thread just let me know
Thank you so much for your reply. It’s so helpful to know I’m not alone in this. I completely agree, it’s the uncertainty that is so difficult - I deal well with facts but not the unknown!
If you could tag me in that thread, that would be amazing, thank you
I was diagnosed with ILC in December, started on hormone blockers at the end of December because the wait for an MRI to check for spread would delay my surgery. I had the lumpectomy at the beginning of this week, and while I don’t have the results of the surgery back yet, the blockers had already shrunk the tumour considerably, to the extent that the registrar who had had no problem at all finding it the first time struggled to find it this time and had to get the surgeon to come and check that he could find it without additional radiographic markers. I went into a tailspin at first but am finding this site so helpful. (And the others are right @foxgem is so thoughtful and reflective she’s incredibly supportive.(
Bless you @al1kat I came to the forum a complete mess. Had basically written myself off. It was the support of others and sharing our stories that has helped me and will continue for many years. We are in it together
Things have changed for me in recent days. I had a CT scan which showed up some “indeterminate” areas on my rib, spine and sternum. When I got the call, I fell apart, my kids were there I was told these areas of sclerosis can be from previous damage, and I have had 2 moderate impact car crashes in the last 12 years (airbags deployed, car written off, etc) and the seatbelt position would correlate with where the indeterminate areas are. I did a post in Facebook group I’m in, and had several people say their CT flagged things up but they turned out to be benign.
So I need to have a nuclear bone scan. I was told the wait was 2 weeks… have managed to bring it forward to next Thursday. I’m finding it so hard to get through each day, and the wait is so long. It’s a nightmare. X
The waiting is so destructive.try and find ways to only focus on what is real and true. @foxgem has some mantras I’ve found really helpful about focusing on what is, not the what it’s so concentrating on the actual facts and not speculation.
I was convinced that I was a seething mass of rumours by the time I had my MRI. Every slight twinge was taken as evidence that it had spread . I was shocked when the consultant confirmed that they’d found nothing other than one small “eminently curable tumour” I still have to wait for the results of the lymph node biopsies but it’s all so much better than my imagination would have me think.
I came in to edit the typo, but I’ve changed my mind. A seething mass of rumours seems much more appropriate than the almost entirely imaginary mass of tumours that I had been envisaging
I’m so sorry @peekaboo212 the waiting is horrendous.
As far as my doctors are concerned my case is done and dusted, all tests are done and all I need now is the chemo/radio/hormone which is adjuvant therapy. I think thats what its called? So it’s just to prevent recurrence.
But tell that to my brain! Even today, months into this I can get myself into the darkest of holes.
In your case you do have something to be concerned about, another test, another change in your plan. Your feelings are valid but please don’t write yourself off completely like I do. You’ve said about your accident from years ago and as a non medical expert that does sound to me as very likely the cause.
We have 2 choices. Think the worst or hope for the best. Its much harder to fight everyday to stay positive but lets do that
Concentrate on what you do know and whats happening today.
we did lots of nice trips out and lots of play dates with friends but I did talk about my feelings with family and then went on with my day. And please don’t Google 
I was told these areas of sclerosis can be from previous damage, and I have had 2 moderate impact car crashes in the last 12 years (airbags deployed, car written off, etc) and the seatbelt position would correlate with where the indeterminate areas are. I did a post in Facebook group I’m in, and had several people say their CT flagged things up but they turned out to be benign.