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 Marisa
I'm sorry you are waiting so long, and here's me complaining!
Unfortunately there is nothing to really report. I went for the blood test which was to identify my blood group. The nurse wasn't aware that I didn't have an op date. My mother has convinced herself that I will be getting it in at least two weeks since going through the pre assessment which to be fair would probably be right in normal circumstances........but it's not normal is it. I believe these are just processes that are driven by some unknown hospital metric and nothing to do with whether you have a date or not and are simply not joined up. I'm sorry about your recent possible (invasive) diagnosis. It's hard enough being told that you have a large area of DCIS and then this. Fingers crossed that it's not and all will be well once we get our boobs lopped off! Zvigo has had her op so hopefully all NHS Trusts will follow suit. I will update you if I hear anything my end (I live in Northumberland).
Take care and look after yourself x
SX
Aw, thanks Susan
I do hope you get a date soon! Deep breath and soldier on...
hugs to you
Marisa x
Hey Marisa,
Hope you are well?
Not much of an update but might be worth following up with your own hospital. I spoke to the breast nurse today about timescales. There are still no plans as of this moment to start reconstruction but what she did say was as of next week they were starting to do some ops as a trial in one other hospital (using metrics like the patient self isolating for 14 days, all staff to be swabbed prior to ops etc) and if this was shown to be successful they may consider restarting some operations using this technique at my local hospital. Obviously there is no guarantees that this would include reconstruction but at least its a move towards progressing surgeries. She told me to ring in a couple of weeks time and check in. I know we are all living under different Trusts but you would assume they all think along the same lines. Might be worth asking?
Take care,
Susan
Hi Susan
Thanks for the update. I have a phone appointment with my surgeon next weds to make a plan. They have not been given the go ahead for reconstructions yet so I guess it will be Hobson's choice. Do I go for mastectomy with reconstruction much later (who knows when?) or wait for immediate reconstruction to resume and risk more invasive disease developing while I wait? It's horrible. I am stopping clinical work after today (though will still be doing admin from home and teaching) as my head is now done in.
I hope you get some movement soon. Sending hugs.
BW
Marisa
Hey Marisa
It's terrible that due to the pandemic you are having to make such a choice when all you want is one operation to get it over with. I guess all you can do is take direction from your consultant tomorrow and weigh up the risks along with your own sanity.
Let me know how you get on x
Take care,
S
Hi Susan
I finally have a date for surgery! They have resumed implant reconstructions. 1st July, 2 weeks from today. What a relief. I have to self isolate now so am trying to find ways to keep fit at home whilst helping my husband not to go stir crazy.
Any news from your end? Hope you are doing ok.
Marisa x
Hi Marisa
OH MY GOD I am sooooo happy for you truly, what a relief!!
No I don't have any news from my end other than they are trialing ops this week so it looks like my trust is behind Burnley by a few weeks. It's good to hear that other areas are now starting up. Hopefully I won't have to wait too much longer.
Keep safe and keep me posted xx
S
Hi Marisa
Just wanted to say good luck for your op tomorrow.
S
Oh, thank you so much Susan. Fingers crossed it will all go swimmingly with no complications...
How are you doing?
Marisa x
Oh, thank you so much Susan. Fingers crossed it will all go swimmingly with no complications...
How are you doing?
Marisa x
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
