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...
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.
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.
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)
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.
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).
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?
