Hi, first post. I’ve found it so helpful reading all of your experiences and just looking for some words of wisdom or peer support I guess. I was diagnosed following an ultrasound and mammogram last Tuesday, I didn’t even know that was possible so it was the last thing I was expecting when I went to the breast clinic. They found two small (around 1cm & 1.2cm) tumours, 1 quite central at the top and one down on the left side that I wasn’t aware of. I spent a few days not knowing if I was awake or asleep, it was the strangest feeling. Then I spent a few days being sad / angry / scared. I’ve actually been OK the past couple of days but tonight I’m spiralling.
I’ve lost count of the amount of times I’ve said “I don’t feel right” or “I don’t understand why I’m so tired” the past few months, it was put down to being anxious and having a toddler (I have a 13 month old). I just can’t stop thinking about all the random symptoms I’ve had for a long time and wondering if it’s been cancer. I had mast cell activation for months requiring antihistamines and the occasional steroid that started in the spring, eventually put down to anxiety. I’ve had chest pain on my left side for a really long time. The past few months I find swallowing uncomfortable, sort of like I’ve got a throat infection but with no pain, that was put down to anxiety too. I keep trying to rationalise that these things might still be anxiety related but I’m just really struggling tonight. I’m 37 and the thought of not being here for my little boy is just overwhelming.
I’ve been asked to go for another mammogram on Monday before we meet with my surgeon on Tuesday to discuss the biopsy results for grade / type and treatment plan. My lymph nodes looked normal on ultrasound which I was clinging onto but I later discovered that some were enlarged on the mammogram. The only thing I know for sure is that I will be having surgery around 4 weeks from that meeting, so mid December.
Sorry for rambling, I’ve really been trying to stay calm and positive but I feel awful today, really spaced out and extra tired so I’m catastrophising. Not sure what I’m looking for - tips on how to stay sane? Did any of you feel unwell for months prior to diagnosis and how did it go?
Thank you so much if you’ve even taken the time to read this x
Welcome to the forum, we are here for you with love, I’m so sorry you are feeling so unwell at the moment this is quite normal with what going on.
As soon as you see your consultant, and have a plan of your treatment you will be able to get your head around everything. Maybe have a notepad around to scribble down anything that is worrying you to discuss with your breast cancer nurse or consultant.
As the moment take one day at a time, be kind and look after yourself, all very easy for me to say when your feeling so anxious. Maybe a cup of tea with that special friend who you can open up too.
Wishing you well, please come back and let us how you’re getting on.
Hello. I read your post and couldn’t not reply - it sounds like you’re having a really tough time of it, which is understandable. I’m further down the line from you but I was diagnosed in May 2024 aged 38. I have 2 young children and I was consumed by fear of not being here for them. It was crippling. I’m sure you will hear this a lot but you are in the worst stage now - you have some information but not all the information and you don’t have a treatment plan yet. When you get those things, it will get easier. I had counselling last year as I struggled to cope and it really helped me to deal in facts and not allow myself to speculate or catastrophise. I took my fears and I broke them down into what I knew as fact and what was my fears or my opinion etc. it helped to put things into perspective and be more rational when my anxiety was kicking my butt. I had 4 months of chemo, surgery and then radiotherapy and 12 months of targeted therapy. I have just got back from a trip to disneyworld in Florida with my husband and kids. There is life after a cancer diagnosis, however much it doesn’t seem that way now. The sun will shine again for you, just have hope. And lean on this forum, people really do understand xx
Thank you so much I have an MRI on the 25th so it seems like everything is happening quite quickly which I’m grateful for. So glad I found this forum and all you lovely ladies x
Thank you so much, I’m crying reading your reply. I think the Maggies centre at my hospital has a psychologist, I think I’ll reach out. I’m an overthinker at the best of times so this is the longest fortnight of my life! I’m so happy to hear you’ve come through the other side and made amazing memories with your babies, that trip must have been extra special x
This forum has lots of unbelievable people who understand how it feels. I felt so relieved when I discovered it last year, being able to speak with people who have been through this or are going through this was a lifeline and still is. Please let us know how you’re getting on - we’re here
Sorry you’re having such a difficult time. You mentioned mast cell activation - do you have Ehlers Danlos / Hypermobility / double jointedness? The symptoms you describe could be part of those and the cancer an incidental finding? It’s really hard to wait until all the results are in, do you know which type of cancer you have? I found reading about my specific diagnosis and all the research and treatment for it very reassuring (mine is triple negative and felt like a satsuma, definitely one involved node and others looking a bit suspicious on ultrasound but now halfway through chemo all looks much better). Really hoping you can get some reassurance and improvement with treatment asap x
I do have hypermobility, I had no idea that could cause anything other than frequent injuries or party tricks so thank you so much for that! It’ll be nice to have something reassuring to google tonight (I’ve been trying to stay away) I’ve mostly been managing to remember that two things can coexist and not everything will be cancer related but it’s so hard isn’t it? The wait between diagnosis and clear answers and a plan feel like purgatory. I don’t know what type yet, biopsies were taken last Tuesday and the surgeon / team will be able to go through the results with us next Tuesday. X
I have hypermobile Ehlers Danlos, pots, long covid and probably mast cell activation too! If you look up Ehlers Danlos / pots / mast cell (they call it the trifecta) it covers pretty much every symptom of anything lol! Having the staging scan and them finding something dodgy on my liver then waiting for mri to confirm it was fat not cancer in there was absolutely terrifying but since then I’ve felt much better. I’ve had most symptoms that could be linked to metastasis since I was in school and I’m 43 now with clear scans etc so I’m hoping that the whole thing is unrelated - really hope you can find some peace from the hypermobility = weird symptoms angle and get some rest x
I had a Google and I think you’ve probably saved me from another night of insomnia Need to keep reminding myself that not everything is cancer. Thank you so much for responding and I hope you’re doing OK, I only experienced Mast Cell Activation for a few months and that was hellish so you’re a warrior! X
I’m so familiar with those spiralling anxiety thoughts it felt like I could have written your post myself. I’m just so sorry you are going through all this. I am very early into my journey so I can’t really help much only to say that we are in the right place here. I have found so much comfort reading the posts here. If you type in the search box, you’ll definitely find reassuring answers. Id say before googling anything come here first. Its real people and real stories. We are all in this together. And one really good piece of advice I tell myself constantly is thoughts are not facts. Don’t believe everything you think! Big hugs
I am so glad I found this forum Thoughts are not facts is such a great mantra! I’m going to pop into Maggies when I’m next at the hospital and take anything going, there’s so much support out there. Thank you so much for responding. Sending strength and hugs x
Hey! I’m new here too Diagnosed 9 weeks ago and awaiting treatment plan. I have an appointment today at 4:15…all the waiting is so hard!
I just wanted to say I felt exhausted for months before being diagnosed. Since April this year it’s like it hit me out of nowhere and it’s gotten progressively worse. I think the emotional and mental effects of the diagnosis have added to that over the last couple of months but regardless, extreme fatigue has been there for some time. It’s been difficult to manage but the diagnosis made it make much more sense.
I have a 5cm left invasive ductal carcinoma triple positive and a couple of smaller lesions with spread to at least 1 lymph node. Lymph node is ER/PR positive but HER2 negative which is why there’s been a delay in treatment. They’re not sure what treatment path to take but hoping for a path forward today. I turned 40 this year and this is not what I had planned But we’re all here together. Wishing you the very best of luck for surgery
The way you are feeling is so relatable I thing most people feel the same when they end up with this awful news, scan’s biopsies, MDT meetings everything is just one big wait for weeks and weeks but nearly everyone on here says when you get a treatment plan you will feel better. I’m a bit further in that you (post surgery) but still waiting for my plan and it’s been really really hard we just have to take it one day at a time x
Thanks so much for replying. It’s good to have answers about the fatigue and it makes sense that emotional exhaustion has just been lumped on top since diagnosis. Really hope your meeting goes well today, sending hugs
The waiting is so hard! So glad I found this forum, going to come on here every time I’m tempted to Google Hope you get a plan soon, thanks so much for replying. One day at a time is right
Im so sorry you feel like this. I know exactly how you feel as I’m the same. I have an appointment to get my treatment plan next week and the wait is excruciating. Im paranoid that it’s spreading through my body whilst waiting. Its totally terrifying. I’ve made the mistake of doing a lot of research on Google which has not helped me so now I’m trying only to use these forums which are full of lovely, helpful people. I really hope you feel better soon once you have a better idea of the plan. Sending you best wishes x
The wait from finding out you have cancer to getting your treatment plans and starting is, for most, the hardest time of this journey.
Here are some links that you may find helpful. The BCN nurses are brilliant and have the time to listen and talk to you.
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
@timmyjack as you are triple positive you may like to join a very supportive thread called HER2 and need some buddies.
In May 2024 I found a small lump in my breast, only because my new cat jumped up on the basin while I was undressing for a shower, and I noticed my boob looked a bit odd. I gave it a prod and found a lump! Wouldn’t have found it otherwise, and I was two years off the next mammogram. They found two cancers, one marble, and a pea. I opted for a full mastectomy as being the most sure fire way of getting rid of it.
I reckon your exhaustion and not feeling right is the aftermath of having a baby and now dealing with a growing toddler! Honestly, it takes at least two years to get over a birth, unless you are a superwoman.
The problem with knowing one has cancer is that one attributes everything to it, whereas your two little lumps won’t have made much difference to your overall health.
I had absolutely no symptoms beforehand, but my body did not take kindly to the operation and the general anaesthetic, and I was completely exhausted for months afterwards.
I can well imagine you are feeling spaced out. Panic is exhausting.
How to stay sane? don’t talk to anybody who hasn’t been through it because people say the silliest things. You need to find something to distract yourself, and you also need to find friends and family who will help with your toddler, simply because of the exhaustion.
Thabk you all so much for your replies, they’ve honestly helped me so much. I spoke to my nurse today and thought I’d update here about my biopsy results, both are grade 2, ER+ (6/8), PR+ (7/8) and HER2-. I feel so relieved! Hormone therapy, surgery and radiation for sure but I feel so much better knowing what I’m dealing with and now I can stop fearing the worst and catastrophising every little niggle. I won’t know the full plan until after my MRI but I’m feeling really positive. You were all 100% right about the waiting being the worst. Much love to you all, I am so grateful for the words of wisdom and support. Sending giant hugs and strong, positive vibes your way Xxx
I have an MRI on the 25th so it seems like everything is happening quite quickly which I’m grateful for. So glad I found this forum and all you lovely ladies x
I’ve mostly been managing to remember that two things can coexist and not everything will be cancer related but it’s so hard isn’t it? The wait between diagnosis and clear answers and a plan feel like purgatory. I don’t know what type yet, biopsies were taken last Tuesday and the surgeon / team will be able to go through the results with us next Tuesday. X
Diagnosed 9 weeks ago and awaiting treatment plan. I have an appointment today at 4:15…all the waiting is so hard!
But we’re all here together. Wishing you the very best of luck for surgery 
