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 Chrissie,

Sorry to hear about your diagnosis, I know what thoughts and feelings must be circulating around your head at the moment.  Any questions you might have however small, fire my way and I will see if I can answer them.

I was diagnosed late March (I think) with large scale DCIS, and I eventually had my operation in mid August, so 4 months later.  Clearly, this was through the first lockdown and I live in Northumberland which has a low population. Surgery went as well as expected and I was out the next day, everyone was lovely.  

I approached the Nuffield to try and go private but they had a contract with the NHS and they had commendered all operating theatres so this wasn't an option for me.  If I had a preference,  I would have gone private, I found the waiting time torturous.  In my case, and I must stress in my case, once my breast was removed and subjected to further testing it turned out I had invasive cancer, much to the suprise of the consultant.  I am still trying to deal and understand with how this was missed. I am 4 cycles in of 6 cycles of chemotherapy, and will finish off with 5 days of radiotherapy.  Then I am buggering off to live in Bulgaria with my family, this experience definitely changes your perspective.

I would definitely recommend, if it is possible that you ask the NHS to see their clinical psychologist to talk things over with them, if not now but perhaps after your operation, and DO NOT stop asking questons, it is awful and pointless sitting dwelling on a point that hasn't been made clear to you, I should know, I like to understand the far end of a fart.

Keep positive, god knows it takes effort and I know this, worrying is pointless and gets nothing done.

Best wishes to you.

S XX

Hey thanks so much for the quick reply.

That's really disappointing to hear that they found invasive cancer after surgery. That must've been a terrible shock for you and you have to wonder if the 4 month wait (combined with worrying about the 4 month wait!) contributed to that outcome. It's just rubbish :0(

Coincidentally a friend of mine just got her mastectomy for DCIS in November (a month after her diagnosis as it just happened to fall into that quieter covid spell before Christmas). She was also told she had invasive cancer post-op. I wonder if this is a common thing as they are only looking at a tiny area with the biopsies.

My DCIS is widespread and is apparently intermediate grade based on the biopsies. Was yours high grade?

I've made a call today to Ramsay health to get the numbers of a couple of breast consultants at the nearest private hospital. I'll call on Monday.

I'm also self employed and do business admin and finance from home. I only went SE in Jan last year and only have 1 client who gives me about 20-25 hours a week of admin work. He's just given somebody else my work for the next 4-6 weeks as I said I would need time off after the surgery so I haven't just lost my surgery but also my income for the next month or so. It's so disheartening because I've asked twice in the last 2 weeks if there was any chance of cancellation and they said no they just couldn't see that happening.
 

I saw from your posts that the hospital dropped all contact with you which again must've been an awful feeling. Did you carry on calling them regularly to check if they were planning to restart reconstructions or did they eventually get back to you themselves. You sound a lot like me as I also like to understand the far end of a fart!! :0)

Wow off to Bulgaria! Are your family already living over there? I can understand how cancer makes you reassess life. My husband was diagnosed with prostate cancer in Oct 2019 (at the age of 50), so we have had two Christmas' in a row dealing with bad news. Thankfully his surgery was a few months before covid started so none of this was an issue but even just getting his diagnosis made us realise that life is so fragile and that you have to live life as much as you can while you can (although covid has changed all of our plans to travel more). 

Best wishes and thanks again for the advice.

C xx

Hey,

I did ask the question if waiting had allowed it to spread but they said no, I think they would say this no matter what.  I wonder if this mis-diagnosis happens often, if so, perhaps their methods need reviewed.

Basically I got told my diagnosis of DCIS and then they didn't contact me at all until they rang to say the op was on.  I regularly contacted them as I could see that people from other counties were getting theirs, but I started to feel like I was bothering them.

I have a busines with my husband, and I can say based on my own recovery you might be able to work from bed maybe after 2 days.  I felt really uncomfortable trying to sleep with a drain in, but other than that it was OK.

We are setting a business up in Bulgaria so we thought we'd try it out living there.  Think perhaps the UK isn't going to be good for a few years after what's gone on.

Sorry to hear about your husband, I hope he is recovering well?

SX

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 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 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