Hi,

Wonder if anyone can throw some light on this.  So I am waiting for the op date which has been put on hold due to Covid and today I get a call from an Operation Assessment nurse.  We spent 10 mins going through all the questions and I am booked in to give some blood tomorrow.  I am a bit puzzeled as to what is going on here, surely this should have been scheduled with an actual op date?  Keen to speak to anyone who has experienced this or understands more about this.

Susan

Hi Susan,

I am also awaiting mastectomy with immediate implant reconstruction for DCIS. My diagnosis has taken months and months as it is a big area and I had to have multiple biopsies before they were satisfied that it was DCIS. Now they have done an MRI and think they may have found an invasive bit, so the goal posts keep moving. Very worrying as I've been in the dark since end of Feb. The department I am with had a meeting about restarting reconstructive surgery last week but have not yet been given to the go ahead to resume as it's "not safe". The surgeon called me last week to say that ideally he'd like to operate on me at end of June. I just spoke to them again today and they say they will update me next week. At the moment they are only booking operating lists for 15 days ahead so that the patients can self isolate for 14 days prior. I imagine if you have been invited for blood tests they are planning on operating about 2 weeks later. It may be different where you are though. Each NHS Trust seems to have a slightly different approach. It's the waiting and uncertainty which is doing my head in.

I just spotted that you wrote this post on Monday so I hope you got some more clarity when you went for the blood test. Let me know how it goes. I am getting my treatment in Burnley.

Regards,

Marisa

Hi Marisa,

Thank you for getting back to me :0)

I think a call is a good idea thank you, although I only got cancelled yesterday so today is my worst day yet as I'm feeling quite emotional today. In the meantime I've sent you a friend request so I can message you privately until I'm feeling able to hold a phone conversation without bursting into tears!

I've managed to keep busy and focused on surgery for the last 4 weeks since diagnosis and have managed to stay very positive about getting an early diagnosis, but today I feel like the rug's been pulled out from under me. It's an awful situation to be in and you can't help but wonder how much worse the cancer is getting while waiting for the surgery to be rescheduled (which is likely to be many weeks away).

Wow £20k. Didn't expect that. I thought maybe £6-8k :0(

Thanks again,

Chrissie xx

Hi Chrissie,

Im in exactly the same situation as you so I know how you're feeling and I'm in Glasgow. Diagnosed with 10cm DCIS 21 December and the only hospital who do Diep reconstruction here in Scotland is an Nhs hospital and I found out on Friday that all but emergency ops have been cancelled and as I have DCIS I'm not an emergency. I have private medical insurance but this is no use in this situation as diep reconstruction is not available privately in Scotland. Consultant rang me on Friday and is looking into sending me to London for surgery with my private insurance. It's just the thought of an 8 hour car journey home with wound in tummy, new boob and seatbelt. Please let me know how you get on. We are both in exactly the same awful position right now. Hope it might help you to know you're not alone. Angie x

Hi Susan,

I just wanted to see how you're doing with the chemo? When is it scheduled to finish? 

I can 100% appreciate how awful your wait would have been last year and it's only 10 days since I got the cancellation call. Each day now feels like a week

C xx

Hi Chrissie,

Just had my 5th chemo on Thursday and feeling pretty crap, but I know before long I will feel like myself again.  My last and final sessh will be probs mid Feb and then maybe a month rest and onto 5 days of radiotherapy.  

I have just read some of the other posts here and I can see the path you are heading down and I totally get it, I have the t-shirt and I am wearing it, just like all the other woman who have contributed their thoughts on here.  I found the waiting hard, the unknown, the emotional rollercoaster day in and day out, it wears you down.  In my area at the time they carried on doing mastectomies but not the reconstruction.  I waitied because it seemed logical to me to wait rather than putting myself through multiple ops, but I was so so close to just going for it, I had a cut off date.  Is this an option for you?  

SX

Roll on February for you - I'm so disappointed you are having to go through this additional treatment knowing you had an early diagnosis originally. I don't think people can truly understand how it impacts you day to day. 

I haven't been told anything other than my surgery is cancelled with no indication of a new date.

It hasn't even been suggested that if I didn't have the recon that I could just have the mastectomy done. If this is the case they certainly haven't said so, but like you I don't want two surgeries and I've read some horror stories of women who did just have the mastectomy as they felt under pressure and are now waiting and waiting for the recon which isn't classed as urgent. Apparently they might wait years and I also read somewhere that there may even be a new policy in the future that puts a time limit on getting the recon done, so for example it the time limit is 2 years and they haven't been able to fit you in within that 2 years then they are no longer obliged to fit you in. I must find where I saw that but I'm sure it was on this website somewhere. It's just awful.

When you say a cut off date I'm not sure exactly what you mean sorry? Can you explain for me xx

Hey Chrissie,

I was told by the reconstruction nurse about significant waiting times to get reconstruction if I had the mastectomy.  I haven't heard of a two year thing, that just seems very cruel, surely not?!

I guess when I refer to the a cut off date I meant that this was the date I wasn't prepared to wait any longer and just get the mastectomy.  I knew I could have got this in my county at the time within 3 weeks if I made the decision.  I guess I just needed an end date, a way out.

S`x

breastcancernow.org/.../over-1500-breast-cancer-patients-facing-“many-months-possibly-years”-without-reconstruction-amid-delays-surgery-following-pandemic

breastcancernow.org/.../over-1500-breast-cancer-patients-facing-“many-months-possibly-years”-without-reconstruction-amid-delays-surgery-following-pandemic

This is what I'd read. They haven't brought it out yet but sounds like there is talk of possibly introducing timeframes Hopefully not. 

Ahh I see, I have just found out that the hospital I should have had surgery at in West Yorkshire is taking the overspill of covid patients from the south east, so to add insult to injury I'm being traded for people from many miles away xx

Hmm it says the link isn't there when I click on it in my last message, but it's a couple of links down from that message saying it's not there anymore. Hope you can see it x

I think there would be a massive fuss if they even thought about implementing that, especially since it was at no fault of the patients.

It's understandable that you are going to get very annoyed especially with what's going on at the moment and how unfair it seems.  You have no control over your future and that is just terrible.  I think I have brought this up before, but it might be worth you asking for a psychologist to talk some of this over with, and take it from me who was of the opinion of "this stuff is just rubbish", it did help me xxx

Yes it does make me angry when everyday I see yet another news report of another illegal party, wedding or rave with hundreds of people attending being broken up by the police in the London area. These people put themselves at risk and if they get ill they can access the NHS for treatment but I can't. It's starting to feel like there's no end in sight for me if the masses don't care about covid and then they are being brought up north to my local hospital and receiving care  

Yes I will speak to them this week. I was doing okay until they cancelled and then the op date came and went. We've already had my husband's diagnosis to get through in the last 12 months so it's a lot to handle without all the extra worry of not knowing when I'll get a date.

Thanks Susan xx

Yes it does make me angry when everyday I see yet another news report of another illegal party, wedding or rave with hundreds of people attending being broken up by the police in the London area. These people put themselves at risk and if they get ill they can access the NHS for treatment but I can't. It's starting to feel like there's no end in sight for me if the masses don't care about covid and then they are being brought up north to my local hospital and receiving care  

Yes I will speak to them this week. I was doing okay until they cancelled and then the op date came and went. We've already had my husband's diagnosis to get through in the last 12 months so it's a lot to handle without all the extra worry of not knowing when I'll get a date.

Thanks Susan xx

I felt exactly the same Chrissie, and it's only natural.  You will get through this!!! XXXXXXX

Thanks Susan.

Just have to try to stay positive I guess ♥️