Hi, i was diagnosed with BC on 24 March following mammogram and US. I was 45 and had some dimpling which i only noticed when i folded my arms. I had a lumpectomy and some nodes removed on 16 April, was told it was all early stage, etc and would be looking at radiotherapy and hormone treatment as ER & PR +
I went for my results on 12 May and they confirmed it was as they had said 1.8mm IDC but 3 of 4 nodes removed were positive. I was devastated but the surgeon was being positive. She did say they would be giving me a further op to remove all my nodes. She referred me for a CT scan and the results came back with 2 ‘bone islands’ so now i’m going for a bone scan on 2 June. She said these can be benign and can be other things but she wants to be sure and now i’m spiralling.
I am so grateful they are being so thorough but I am really struggling with the ever changing diagnosis each time I go for an appointment. The worry that it’s worse than initially told and also the fact that I had my op nearly 5 weeks ago and maybe I still have more positive nodes yet to be removed but the op and treatment is being delayed until I’ve had my bone scan and got results which will be nearly another 3 weeks.
That’s a lot of changes in diagnosis but as you say it’s because they’re being thorough which is actually a good thing.
It’s hard not to worry but if this cancer journey is teaching me anything it’s that worrying does nothing except wear you out. It won’t change a thing so I’ve decided to just focus on the next step to stop myself spiralling as much as possible.
Try not to overthink things too much. Early days when I was waiting on my HER results I spent a couple of days working out which wig I would get if I had chemo, where I could get it from locally and how I could get it cut to suit my face. All wasted as it came back negative and I didn’t need chemo! Another few evenings disappeared on post surgery bras which I only needed for a couple of weeks.
The good news is your team are on top of this. Everyone here will tell you it’s the waiting for test results which is the worst bit of all this. The doctors have a host of treatments available, they just need all the information to tailor it to your needs.
I found going for a walk stopped me scrolling and organised my thoughts. Keeping busy doing things you enjoy as a distraction is the best way to minimise your quite understandable worries. And if something is buzzing around your brain write it down and speak to you breast care nurses, no worry is too small for them.
Hey @bella80 sorry to hear you’ve been diagnosed and with so many changes!
Its not quite the same but when I was 1st diagnosed it was early stage, then I got sent for MRI as it wasn’t fully clear on the mammogram, results came back with a further 2 lumps that then had to be biopsies and wait on results before I could go for surgery! The further 2 did turn out to be benign but the point of my story is I completely spiralled for weeks whilst waiting!! It’s hard not to when we’re waiting for results, but I’m sending lots of love your way because there’s not much we can do whilst waiting which is very annoying!
The only thing that helped me slightly was staying away from Google and distracting myself as much as possible!!
You can teach out to your breast care nurse or Macmillan too if you want more support Xxxxx
That is trickier. I try visualising my brain as a web browser with too many tabs open. I then imagine clicking each one closed. Then imagine one of your most peaceful happy place and breathe deeply and slowly.i also find a lavender sleep spray helps me.
Thank you @katie91 I think it is the waiting. I was really positive at my initial results appointment and got bad news so took it really bad and I think my positivity left and I’ve struggled to get it back. I’m glad the other lumps were benign and I hope you are doing well xx
Thanks @bluetit11 I will try that tonight. My doctor has given me some propranolol which is helping however it also gives me some side effects which sets off my health anxiety. I will give the lavender spray a go too.
Hello, you are not alone, I had loads of scans and pat scan before chemo started. The only thing I can say is they are covering everything to make sure you received right treatment. Yes it flipping drains you. Big hugs xxx
I can very much relate. My BC journey started out very straightforward and positive, then a shock early local recurrence confirmed in April just four months post surgery set off a whirlwind of new tests, hospitals, people, phone calls and treatments. It’s been non-stop!
I’ve no signs of node involvement at present and my biopsy in December was clear but they wanted to do a CT scan to check for spread and it showed a dark spot on my liver. A further MRI has shown this to be completely benign, which I found out this Thursday just gone, but I wanted to let you know I totally understand how you’re feeling now.
Unfortunately we have no control over our test results and I’ve found accepting this goes a long way to helping cope with the anxiety, although it’s not easy and I’m definitely not a master at it yet. Focusing on things I can proactively control also helps me such as noting down questions and contacting someone about them if appropriate, planning and prepping for appointments, and reaching out for support as you’ve done here.
Grounding is a great way to bring yourself out of a spiral, which is redirecting focus to real world sights, smells etc. During one particularly tense car journey to an oncology appointment, I started tracing a circle over and over on the palm of my hand with my thumb and that really helped bring those anxiety levels down.
Oh and I don’t stress about trying to be positive anymore. I think how you’re feeling now is totally normal and I reckon sometimes just giving in and having a good old mope might be exactly what we need.
Well, this was long. I started a new treatment on Friday and am currently on steroids so here you go! I hope it helps and I wish you all the very best with everything. x
Thank you & i’m so pleased the dark spot was benign. This is all so tough I have 3 children aged 12-16 and I think my biggest worry is them. We told them I was having surgery last month and they took it really well as i was assuming it was surgery, radio, etc but haven’t said anything about all this and I guess i’m just dreading what I may have to tell them next.
I’ve been trying the grounding techniques and sometimes it does work thank you xx
I don’t have children myself, however I do have three teenage nephews who my sister, with my full support, chose not to tell about my recurrence when we found out because they had all exams and knowing wouldn’t have added anything to their lives except worry at a very important time in their lives.
All the advice I’ve seen on communicating with children about cancer from other women who do have kids seems to focus on providing info on a need to know basis and keeping it quite matter of fact and straightforward. I know circumstances vary between households, but this sounds like it’s working well for most of them and it kind of sounds like that’s how you’re approaching it from what you’ve said.
Someone on here who’s also had a bit of twisty journey posted not long back that cancer might be a part of her life, but it’s not going to ruin her life. This resonated with me so much because for me, this diagnosis started off as something that put my life on hold and that I wanted to get out of the way so I could start living again. The recurrence and all the other curve balls that have come along since have shown me it’s not going to be the neatly planned out fix I first thought but I’m here now so I’m trying to live alongside it as normally as I can. Or as much as my busy appointment schedule will allow!
My goodness it’s just unfolding for you. So glad the health people are sticking with you and attempting to get to the bottom of it. Sounds like you’re in very good hands. I had to learn patience when I was diagnosed with breast cancer and to realise that it’s usually a two week wait between tests and results, and more for specialist tests and results. However you are reassured that they are sticking with it. 18 months on and clear of cancer I have learned to view life a little bit differently but definitely more positively.
Hi bella80, I am sharing my story that I was diagnosed almost 7 years ago and in one of the bone scans, they found a bone island. My oncologist, who is very well known internationally, told me not to worry and since then, the bone island is still there and has not changed, simply benign. He also said that scans show many benign things that people don’t know they have. Wishing you good luck and I learned through this journey not to borrow the worries.
Its awful not knowing the outcomes but all I can say, is Bone Islands are rarely malignant, the are dense cortical bone which grows between the bone marrow. I have one of these within my pelvic bone joint, found randomly on a CT Scan. My consultant told me they are no touch as they are usually only found incidentally and shouldnt cause any issue. I also have sclerosis of S1 joint found the same way. I do have a sore back but again its a leave alone matter. I had a DEXA scan as a result but hospital wouldn’t report on these areas as they are all ready classed as a degenerative condition. Please try to focus on recovering from the previous operations and the treatment up and coming. These treatments will be tailored to your own cancer diagnosis and treated accordingly. Keep positive and rest. Good luck.
Thank you @itchynscratchy for replying. Every appointment since my initial diagnosis has turned something else up so I think I’ve got into a negative head space now but will keep in mind what you have said. I have one on my pelvis too and the other on my spine. She did say her radiologist would have said the one on my spine was benign if it was the only one but as there are two she wants me to have the bone scan (I am grateful but just more worry time for me) x
Sorry to hear all you have been through and that something new has cropped up. I get that, it took 3 months from finding one lump to starting treatment as subsequent tests/scans found another primary invasive tumor in the other naughty boob, then I found out the first was HER2+ so needed chemo and Herceptin. Treatment was going to be more than a year instead of a couple of months excluding hormone therapy. I didn’t have lymph node involvement so I didn’t get further scans so I always worry about spread ( can spread in blood as well as lymph node, I didn’t know that before).
On a thread I am personally active on for HER2+, others with lymph node spread had spots or shadows on other areas of their body. For them having chemo sorted them out. Others were told they were benign and nothing to worry about.
Your team will be looking at all angles and asking for the relevant tests to get the best treatment plan for you.
The BCN nurses are here for you to call 0808 800 6000 Mon -Fri 9-4 Sat 9-1 or call your own breast care nurse. In my experience the BCN nurses have more time as they don’t have the commitment of clinics.
@naughty_boob thank you for your post, listening to everyone’s replies has really helped me try to rationalise my thoughts. I’m hoping that my next appointment brings some better news rather than more negative. Third time lucky and all of that!
I have spoken to the breast cancer now nurses and they were so kind, as everyone on here is x
Whatever news your next appointment brings it will still be better than before as you’ll have more clarity. It’s the not knowing and trying to work out every eventuality that’s so exhausting. Once you have a treatment plan you have a timeline which gives you something you can work with.
Xxxxx