Yeah I agree I don't think the wait can have helped at all but I don't think that is something they would want to confirm to you.

Can you remember if your DCIS grade was low, intermediate or high?

My husband is doing okay now - just has his blood tested twice a year to look out for warning signs of it returning.

Sounds like a nice adventure for you both. We lived overseas for 10 years and would always recommend giving it a try :0) xx

Hey,

Sorry I meant to answer that question but forgot and then posted.  Mine was intermediate.

S

Same as mine then  

That's a little concerning but hopefully I won't have to go through the same 4 month wait 

Thanks again x

Hi Spookcat.

Just reading your old posts here. 

Can you tell me a bit more about the Choose & Book please?

My surgery for mastectomy has just been cancelled (DCIS - intermediate grade) for next Thu 21st and I'm wondering if I have any options in terms of another hospital that hasn't cancelled reconstructions yet or going private if the NHS hasn't already taken over the private theatres?

Thanks in advance for any thoughts you can offer :0)

C x

Hi Chrissie

So sorry you find yourself in this situation. It totally sucks! I'm happy to chat if it would be easier, as it's a bit difficult to explain exactly what I did to get a second opinion. I used some of my doctor contacts to put me in touch with an oncologist who did a bit of asking around for me. He found a service which was a bit ahead of the game. However, the big caveat is that getting a referral to that service took about a month, as the referral got lost in the post!

He found a service which was a bit ahead of the game. However, the big caveat is that getting a referral to that service took about a month, as the referral got lost in the post!

I found that the best thing was to keep on hassling the clinic where you're going to get your treatment. I rang mine frequently to ask for updates. Going private will cost you about £20,000 if you want a recon  

I wrote a blog: www.bigholeblog.wordpress.com

which helped me process everything. Do PM me if you like
Sending much love to you and solidarity. 
 

Marisa 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