Hi @fubc I am really sorry to hear about your diagnosis.
The only thing I can say to you is not to overthink. I know that it’s not easy but you need to think about the facts - it was found during a routine mammogram…and you’ve already had a MRI so the wheels are in motion…
I think sometimes overthinking it is a way of our brain playing games with our sanity…I am a scientist and always am looking at facts and data not what my brain tells me when I can’t sleep @3am…
I was also diagnosed with lobular breast cancer in 2021. I was 43 and it was out of the blue. My oncologist told me that the cancer has been there for at least a few years… unfortunately, it has spread to the lymph nodes. I didn’t have any family history so no routine mammograms. Didn’t even have a lump but the MRI showed 12.5cm tumor…so yeah 3 years later I am still coming to terms with everything and honestly, it’s not getting any easier. I am now more worried than when I had my diagnosis because what’s happening after you got your diagnosis is you are getting your treatment plan and is one thing after another…now when I’ve finished my active treatment in June and am only taking Letrozole is a lot scarier…
Also think about what kind of reconstruction you would like. I went with immediate reconstruction with an implant but had a very nasty infection and my chemo was delayed…so while you are waiting ask questions on this forum so that you can make up your mind. The ‘someone like me’ is great way of getting in touch with person 1:1 who has been through the same journey like you…
People on this forum have been immense support to me and I hope you will find it very useful…
So, it’s been nearly 8 weeks since my original diagnosis. Thought I’d share a wee update on where I’m at…
I had a lovely Christmas and New year with close family. Lots of time with my children, eating, drinking, playing games and watching films. Was able, for the most part, to put the cancer away and enjoy and appreciate life.
Since returning to work though I have struggled to keep it out my mind. I think now that the new year is here I can focus on nothing else. I’ve got an appointment with plastic surgeon this Friday so I’ve decided to stop work then and get myself mentally prepared for what’s ahead from then. I’m hoping it won’t be too long now. I know that implants are not an option for me so I will be having a live tissue reconstruction. I think Fridays appointment will confirm if it will be diep or elsewhere - with my build I think there will be plenty sites to choose from .
In the weeks immediately following diagnosis I needed to be at work and keeping a sense of normality about every aspect of life to the extent of probably pretending it wasn’t real. Now I’m ready to put all of that to one side and focus on me. With three kids with busy social lives, clubs etc and a husband who is self employed and works long hours it won’t be easy but I know it can be done. 2025 - bring it on!
I hope everyone here is doing well - emotionally and physically just now.
Nice to hear from you @fubc and pleased you have a lovely Christmas and New year.
You are right to focus on you, it’s hard as a mum, wife, etc but it’s only for a short time for long term gain. I found it very hard to ask for help as I was always the person offering the help to others but this cancer thing changes your mindset. It’s time to be selfish and concentrate on you.
Hi everyone. Hope you are all doing ok. I haven’t posted on here for a while but thought it was time for an update. I’ve been feeling a bit low since the new year. Finding it harder and harder to take my mind off the fact that the cancer is there. Was kept fairly busy with appointments but have been desperate to get to the surgery stage. As it drew nearer I began to get less anxious about the cancer and more about the lengthy surgery. Needless to say I have been very teary. Anyway, I had my surgery yesterday and thought I’d share me experience for anyone who is apprehensive.
I arrived at the hospital at 7am and it was all systems go from the minute I walked in the door. Gown on, stockings on, bloods taken, visit from anaesthetist, nurses with lots of questions about me in general, my cancer surgeon, a plastic surgeon registrar who drew all over my body with Sharpie for learning purposes and the plastic surgeon who came and approved and amended then drew even more.
I went through to the theatre at 845 and the anaesthetists chatted away to me before I fell sleep with no fears at all. I had a single mastectomy with DIEP reconstruction, lymph nodes removal and a lift for symmetry on my remaining breast. Woke at 9pm in recovery and was very groggy and sleepy all night. The nurses were in and out my room checking bp, drains, catheter and wounds every half hour but I managed to fall into a deep sleep between every visit. At 6am today I awoke properly and had a cup of tea and some breakfast. I’m a bit sore all over but getting plenty pain meds. My abdomen feels like I’ve been doing some really intense core exercises.
It was a pleasant surprise to realise that they’d managed to spare my nipple when the plastic surgeon hadn’t been sure. My boobs don’t look drastically different. Already this morning I’ve had a wash in bed and they are just about to get me on my feet and into my PJs. Plastic surgeon has been to see me and is really pleased so far.
I’m so relieved to have started my journey on the road to recovery. Maybe I’ll need radiotherapy, maybe I’ll need chemotherapy but I’ll cross that bridge when I come to it. Good luck to everyone at the different stages of their journey. X
Wow @fubc what a fabulous update! Congratulations on a successful surgery and, as you say, you are now on the road to recovery. Loving the positivity! Thank you for sharing your experience, I’m sure it will help loads of women to face a daunting prospect with confidence in the future. A big YAY! for your team too. Rest up, follow the recovery advice from your team and let us know how things are going as you move through the stages. So so pleased for you.
We’re so glad to hear that your surgery went well, I hope you’re able to rest up and have a smooth recovery. It’s great that you have access to the forum while in hospital, as you know we’re never far away! When you are able to, and should you need it, our nurses are available to chat anytime you’re feeling low or anxious on 0808 800 6000.
Sending you all the very best, and once again thank you for letting us know how you are getting on!
@fubc So pleased your surgery went well. Rest up. Do your exercises when you can. Don’t be too rigid in doing them be guided by your body, so as much or as little as you can.
Hello @fubc
Love your forum name and your posts.
It’s great that you are so positive and focused.
I was like that, had one goal and that was to do whatever it took to get rid of cancer. Finished work for 8 months and got on with my mission. That was in 2021, I still spend time reading and learning about new things I can do to keep my mind and body in the cancer free zone.
Now you have some down time it maybe a good opportunity for you to delve and come up with your own next step and strategy for what you want to do. I reckon you already have that in mind anyways
Here’s some book ideas which I found really interesting:
Radical Remission by Kelly A Turner phd
Breaking the cancer code. By Geronimo Rubio and Carolyn Gross
Chris Beat Cancer. By Chris Wark
Keep being you and being positive, take care. Heal well and love life
So, I’m getting home today (Monday) after Left DIEP reconstruction and right mastoplexy for symmetry. My wonderful plastic surgeon actually wanted me to go home on Saturday! I wasn’t particularly mobile at that time and was struggling getting between bed and chair and going to the toilet (Not helped by the ridiculously tight pants they make you wear ). Unfortunately I ended up with quite a bit of fresh swelling a day or two after surgery so they kept me in to monitor it. Had a CT scan too but everything seems fine and they are happy for me to go home today. It’s amazing the difference a couple of days has made. Although I’m stooped over and my core and tummy feels very tight I can move about and can get myself in and out of bed/chair and to the loo without too much hassle. Need a rest after any exertion though. I’m still on lots of pain meds, heart burn tablets and laxatives. Getting last drain out before I go home. Physio has given me gentle exercises to do and I’ll have various clinics over the next couple of weeks to monitor recovery and plan next steps based on pathology results. One more step of the journey done though. As always, love and best wishes to all. X
Thanks for you’re message and book recommendations. I see that the Chris Wark one is also available as a podcast which might be more up my street. Will check them out in the coming days/weeks. X
Just had a call from my BCN. Pathology results are in and I’ve to go to clinic for them this afternoon. That’s 6 days after surgery much earlier than expected! Wish me luck
So, good news! The cancer although extensive (2 lobular tumours and multiple satellite deposits) within the breast was not detected on any of the 4 lymph nodes removed so it’s gone!
Follow up care involves definite endocrine and radiotherapy but they threw a spanner in the works by mentioning the possibility of chemotherapy to reduce risk of recurrence but implied it would be very much up to me once they hit me with figures. Anyone have any experience of this? I will post the question elsewhere later on too. X
Hi, you are not alone,. Just sending you support. Is there anyone you can discuss your fears with? I’ve got a few friends and family that I talk to and it helps,
Thank you, yes I’ve got family and friends I’m happy to chat with just looking for people who have made a similar decision. I’m just taking the positive that it’s gone for now and I’ve a few weeks to recover before deciding next steps x
You can call the BCN nurses on 0808 800 6000 to talk through the pros and cons of chemotherapy. You should also be able to contact your own breast care nurse team and chat some more.
So, sharing my most recent update/setback. So glad I chose to write this today rather than yesterday when I was in a very dark place and feeling absolutely awful. So here goes.
I had DIEP reconstruction about 4 weeks ago. Was in hospital for a few days but got home and was recovering well. The exercises made a huge difference to my mobility and strength and I was going lots of walks and feeling good. All the time though my new boob was still swollen, bruised and achy as well as leaking a lot of yucky fluid. I had been attending clinic each week to get it checked out but to be honest I hadn’t seen any improvement in a week or so. Anyway, fast forward to yesterday when I attended clinic but this time surgeon was present as she wanted to give me the go ahead to start chemotherapy in a couple of weeks. Almost as soon as she looked at the DIEP she says she wasn’t happy. Checked it with a Doppler but no “heartbeat” and when she scratched the outside it didn’t bleed. She believed it had become infected and there was damage to the live tissue. She knew she had to go in and have “a look” so I was admitted and put on waiting list for theatre. Meanwhile we discussed all the different options and possibilities but I made the decision to just have the whole thing removed if the tissue couldn’t be saved. I was absolutely devastated - not so much at losing the breast - but that the procedure had failed and that I hadn’t known there was anything wrong and so much time has been lost. I have been curled in a ball and crying for 24 hours feeling very sorry for myself. My temperature also spiked overnight and I was placed on IV antibiotics I had surgery today which was only about an hour. When I woke up I discovered the whole breast had been removed and I have decided to remain flat for the meantime. Hopefully chemo will not be delayed by too long and I can move on from this.
My surgeon seems genuinely devastated that it’s come to this and has offered me lots of support (psycologically and practically) as well as advice for if I decide to have recon further down the line. It seems to be very rare that this would happen so far down the line. Usually first 72 hours are where they know if it’s going to take or not.
If I do want to have recon she would probably advice using the back muscle next time or even implants. I honestly don’t think I could go through this again though. I’m hopefully done with the operating table. I feel better already and it’s such a relief not to carrying about a big, hard, sore swollen boob. I’m a bit sore where stitches and drain are but nothing I can’t handle.
Just another wee hurdle that I’ve overcome and I’m feeling good this evening.
@fubc sorry to hear about this setback. It’s definitely not what you would want. I’m so pleased that you have shared it with us on the forum. I have found sharing things that others don’t get on here really cathartic.
I hope your temperature is now under control and you are feeling a bit better from that.
It’s nice to know your surgeon is being supportive. I bet they are upset that it has failed because all they want to do is a good job for you.
Thank you. I did find it quite a relief to actually type it out and put it on here. I must admit I am so glad I waited 24 hours though as there would have been tears, snotters and swear words mixed in!
I also felt genuine relief after the removal. Now I have to go and do lots of research on bras with pockets and prosthetics which I hadn’t considered before. The padded thing they have given me is massive compared to my other boob! Hopefully getting home this afternoon with drains still in and a dose of antibiotics and chemo won’t be delayed for too much longer.
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much earlier than expected! Wish me luck 
. Just sending you support. Is there anyone you can discuss your fears with? I’ve got a few friends and family that I talk to and it helps,