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
Hey
I'm sure all will go well tomorrow x Did you have to go for a sentinel biopsy today before your op? Not sure if they do that in every case but I will have to.
Can't really say I'm OK. I experience a range of emotions daily....sadness, anger and frustration. It's 9 weeks on Thursday since I last saw the consultant. I have contacted the breast nurses 3 times (two times due to a question about letters I had received). Not one person has contacted me. I feel like I've been left, and the longer this goes on the worse my mental state. Why can't they just ring me and say.........it's still not happening because of this or that. I feel embarrassed now to call them....hey me again, any news? It's equally hard and frustrating that each Trust seems to be enacting different strategies and getting on with it. I know from a colleague that there are no covid patients at the hospital and yet............(silence).
I mean just EURRGGHHHHH!!! FOR GODS SAKE, WHERE'S THE COMPASSION?? :)
I am re-reading this and laughing..............you gotta laugh......(she says clutching her head rocking back and forward)
Anyhoooooooo rant over. Let me know how you get on after the op xx
Tarraaaaa.
S
I so totally get what you are feeling. I've been living in that exact same world until 2 weeks ago. IT SUCKS!
One thing this whole experience has taught me is how my patients feel when we don't communicate with them adequately. I'm an old age psychiatrist so I diagnose a lot of people with dementia and sometimes it takes ages to get the diagnosis confirmed. I now have a lot more empathy for how that waiting must feel for them.
I would say keep ringing the breastcare nurses and tell them how you feel. Sod it if they sound *** off that you are ringing yet again. You have every right to!
I also called the breast cancer now helpline when my hospital still hadn't got the go ahead for reconstructions and the woman I spoke too had some really helpful practical advice about how to apply a bit of pressure in the nicest possible way. It also helps that you feel you are a bit more in control!
Your mental health is as important as your physical health and sometimes I think it helps to emphasise that side of things to the breastcare nurses. The lady I spoke to on the helpline was really good at getting me to talk through my feelings as well as making some practical suggestions.
Anyway, sending "kick up the backside" vibes to your hospital and plenty of empowerment energy to you.
Marisa x
Hi Susan,
Just wondering how you are?
Sending love,
Marisa
Hi Marisa
More importantly, how are you? How was the surgery, are you healing well and how are you in yourself?
S
Hi Susan,
I'm doing well thanks! Still needing to take it easy as I have a tendency to overdo it and wound has been complaining a bit. But on the whole I am healing well. Very tired and have good and bad days in terms of mood (I've got the all clear from margins and lymph nodes, which is wonderful, but somehow I found it hard to be joyful when I heard it!). I started taking tamoxifen this morning...
I've been blogging like a mad thing:
I find it really helps me to process everything that's been happening. Any news on your surgery yet? Been thinking of you.
Marisa x
Hi Marisa
Glad to hear you have been given the all clear, what a relief xxx
You might want to grab a coffee, this might take some time.....;)
I'm feeling very frustrated and sad at the mo. Last week I rang the breast nurse and was told that she still didn't know when reconstruction would start. My husband came out of his office 15 minutes later to me sobbing and immediately rang the nurse. He asked the nurse to speak to my consultant and get him to give us his thoughts. So a day later she rang me back to say that he thinks all surgeries will restart in September. So maybe I will have my op in October, six months since I will have had my diagnosis. We haven't had the predicted outbreak in my area but the Trust seems to be sticking to it regardless and haven't even used the private health care they bought which has prevented me even considering private treatment. Can you tell I am getting really bitter? As part of this process of course I am to have a consultation with a reconstruction nurse. So today was the date I was to have a telephone consulation but this was cancelled three weeks ago. I rang the breast nurses to ask why this was and they got the reconstruction nurse to call me. She wants them in person which is understandable and I was to look out for an appointment but call in 3 weeks if I hadn't received one. I rang and left a message for her Tuesday, and again today as no one is calling me back. My closest family members can't quite believe how bad the communication is and have likened it to torture. No-one has proactively called me and If I hadn't rang the hospital I would not have had any communication with anybody. I have a 10cm area of intermediate DCIS and although they think it's unlikely to spread my mind isn't thinking that. Anyway, I plod on into the unknown.
Sx
Torture is exactly the word! The way they have treated you/are treating you is not acceptable. Do you have the energy to request a second opinion from somewhere where they have resumed surgery? You are entitled to do that with choose and book. My DCIS turned out to have an invasive component - only small but it did galvanise them to operate as soon as they could. I am outraged for you and know just how it feels to be in limbo like that. It plays havoc with your mental health. Give me a call if you need to sound off...
Not sure if you can private message on here? I will give it a try.
xxx
Hey Marisa
I have your friend request and have messaged you.
S
Have replied. For some reason I don't get an email to say someone has PMed me.
Hi Sandra,
I've been reading this thread in the early hours as I've just had a DCIS diagnosis on 22/12. My surgery for mastectomy and reconstruction was to be on Thursday 21/1 but Covid has forced cancellation so I'm in the same boat as you were last year. I'm in Yorkshire. Gutted that this has happened and can totally understand all of your emotions last year as I have a feeling I will also be waiting months to get the op.
I wondered how you went on and if you finally got your surgery when the cases settled down in autumn? I was also going to look into using our savings to go private so I was also wondering what your post meant when you mentioned that going private wasn't an option.
I really hope you got sorted and are feeling much better now :0)
Best wishes,
Chrissie
Hi Sandra,
I've been reading this thread in the early hours as I've just had a DCIS diagnosis on 22/12. My surgery for mastectomy and reconstruction was to be on Thursday 21/1 but Covid has forced cancellation so I'm in the same boat as you were last year. I'm in Yorkshire. Gutted that this has happened and can totally understand all of your emotions last year as I have a feeling I will also be waiting months to get the op.
I wondered how you went on and if you finally got your surgery when the cases settled down in autumn? I was also going to look into using our savings to go private so I was also wondering what your post meant when you mentioned that going private wasn't an option.
I really hope you got sorted and are feeling much better now :0)
Best wishes,
Chrissie
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 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
