Hi, new to this as recently diagnosed on 25th April. Had absolutely no idea and it’s been a whirlwind of appointments and information. I’m booked in for a mastectomy week beginning 19th June and just don’t know how I feel now as well as after. Doctor says 6-8 weeks recovery. Has any one experienced this feeling and recovered quickly? All advice is grateful received. I think I’m in denial my husband says. ?
Hi Kjbuni
Like you, I was diagnosed with DCIS out of the blue - I had gone to my GP complaining of a little intermittent breast ache. I had a skin sparing mastectomy last Thursday (25/5) with tissue expander for reconstruction at a later date. Immediate reconstruction wasn’t advised as I have another minor medical issue which needed to be stabilised first and a longer anaesthetic wasn’t recommended at present.
My biggest issues have been emotional/psychological. Firstly, getting my head around the fact that I have an early stage BC. Secondly, the conundrum between having lumpectomy v mastectomy (I had a choice). Thirdly, the waiting period between making a decision and date of operation - I just wanted to get on with it. I was also in denial too and it wasn’t until the fifth delivery of flowers on Saturday morning that the emotional floodgates opened as the penny dropped as to what had happened.
Physically, post op, I have recovered extremely quickly. Full arm movement back by Sunday (but I understand that my sentinel nodes were in a slightly unusual place which meant I didn’t have to have a separate excision). My drain is being slightly less co-operative but I did wonder if that was because I have been so active. I was off all pain relief medication 36 hours post op. You don’t say what reconstruction you are having but in my case it has all been very do-able. With hindsight on the whole process to date, I could probably have used some counselling - I believe that you are entitled to some therapy type help under the NICE guidelines. Perhaps you could investigate this with your BC nurse.
If i can help further, please do ask. Stay positive! Ez. X
Hi Ez,
Thank you so much for taking the time to respond especially when your still recovering yourself.
I was diagnosed with extensive DCIS of intermediate to high grade. My only option is a skin sparing mastectomy. It was recommeded that I have immediate reconstruction but being advised again my only option is an implant. I seemingly don’t have enough spare tissue.
I habe access to call or see the breast nurses but feel I’ll be wasting their time as I don’t know what I want to say. Doctors know what’s going on and I’m just going along with it. Doctor wanted to operate after the 31 days but I have a holiday booked and wanted that first. He said it’s not unreasonable so it will be straight away after.
Thank you for the insight after the operation. Certainly seems much quicker than I’m expected to believe. Your recovering so quickly and I’m sure it’s your positivity that helps.
Some other questions, did you have to get a surgical bra to take with you? How long was the dressing on for?
Again thank you x
Thank you cookie-fairy, your certainly right, it does feel like your cramming for an exam. Both you ladies have been so helpful and lightened the unknown. I feel slightly more knowledgeable post op.
Feeling a little lower today as waited in all day for hospital to call with pre op date (given verbal 2 weeks ago for this Friday 2nd or 9th June) and they haven’t called. I had to make contact as when told 2 weeks ago the letter confirmation didn’t arrive. Then I’ve been told they can’t find me on the operating list. Just seems so fast from zero to 100% appointments and then a lull as I will wait over 7 weeks to see consultant again and that is operation day possibly.
Guess it’s just again the process.
Sorry just having a moment. Will be positive again in the morning. ? X
Hi Kjbuni
It was no problem to reply to your first post. There was much in it that I could immediately relate to and I didn’t want to read and move on without responding. I am sorry that it has taken a little longer to get back to you. I have my elder Sister staying with me for a few days keeping an eye on me and we decided on a day of ‘nice, fun’ events since I was feeling so well.
I too had quite a large high grade DCIS which on biopsy also showed a micro-invasion. My surgeon also went through reconstruction options and about the only time I have ‘laughed’ in connection with this issue was when he told me I didn’t have quite enough fat! I thought my plump, post-menopausal, hypothyroid weight gaining self would have easily delivered up enough flab to create a new boob. The jury is still out on my recon! I think it would appear we have a lot in common.
Each hospital acts differently so what I got may not apply for you. I had a strap of wide rubbery type tape giving me under boob support for my expander immediately post op which was removed the next morning when the hospital fitted me with a bra. You should check with your nurse on this latter point as to whether they or you supply the bra. I have since got two more identical ones from the Internet as they are very comfortable and more-over, quite pretty! I have no dressings other than a bit of tape over my drain outlet. I had IV antibiotics in hospital and none since I came home.
You say that you don’t want to bother your nurse but perhaps you should make contact. The NICE guidelines (part of my ‘exam’ cramming!) stipulate that everybody is entitled to psychological support. If the nurse isn’t able to help then they might be able to put you in touch with a counsellor who is trained to help you unload your fears and anxieties.
In the run up to my op, I had both pre-op and a trip to nuclear medicine for my sentinel node tracer injection the day before. This is sometimes the morning of the op if you are going to theatre later in the day. Just thought I would mention it so it wouldn’t come as a surprise.
Ask away on any more questions and I will try and answer if I can.
Ez. X
Ezzie, thanks for the response.
Does seem we have a few things in common. I hope I’m as lucky as both of you ladies as your both having a remarkable recovery.
I have bought a post surgical bra ready as the consultant recommended M&S. I think I will get a couple more from Asda to give me spare ones.
It has been mentioned that the sentinel nodes will be checked but no discussion as to what happens.
After talking with you both, I feel I have not been given that much info about the op it’s self. Consultant just keeps saying ‘you’ve had a lot to take in’.
Still have a niggling thought and that’s why Macmillan say DCIS may be referred to incorrectly as pre cancerous but that is what the BC nurse said and it’s only ever been said once. Seems silly I know but maybe that’s why I’m not really understanding the whole situation properly. You can read everything but as I feel fine, I often feel there’s nothing wrong. Does that make sense?
Have either of you ladies had sharp breast pain 6 weeks after the biopsy? I never had this before or for at least a month after.
Sorry, to keep going on but I feel as you’ve been through it, you have a better understanding.
Thanks ladies x
Thankfully because of my diagnoses two of my friends have also undertaken GP appointment or mammograms. 1 has been given all clear and another is waiting for her first appointment with her hospital. That’s so important that they felt they must.
I’m on holiday 10-17 June (been planned a long time) so surgery is due 20th June. At present I have no appointment letters just verbal communications. Consultant wanted operation as soon as I return. That’s all in place and think I’m probably over thinking with the pain as to all that’s going on.
I’m planning on asking for counselling for after the op as I also think that’s when it’s going to hit me more.
Did you week 2 weeks for the histopathology results?
I’m going to enjoy my holiday then mind over matter will beat this blip and I’ll be like you positive. Xx
Cookiefairy that made me giggle. Setting alarms on phones and stucking up on basic pain relief. Yet, good advice as I hadn’t thought of that. ? I have only seen the BC nurse once and that was the day it was confirmed and to be honest apart from giving me a booklet on telling the kids, I don’t really recall anything else.
They haven’t mentioned a trip to nuclear department yet but guessing that may happen in pre op.
Was your pre op done by the BC nurses or a different department? Just wondering if I’ll have the opportunity to see them again before the operation.
Ladies, you have been a fountain of knowledge for me and I’m so glad I joined. Thank you ?
Hi,
I too was bruised after biopsy but not really in pain. Just the ache in the upper outer quadrant that I had before diagnosis.
I have kept a notebook so that every time I thought of a question for consultant/nurse I wrote it down so that I had them readily to hand at appointments or when I spoke to the nurse over the phone. I could then write brief reminder notes against each query for reference later.
My pre-op was also done in a centralised department at my hospital - all breast related appointments are carried out in a separate building specifically for the purpose.
If you have seen your nurse only once, have you considered going to see her so that you can run through everything again? Mine was good at handing out leaflets on DCIS, reconstruction, etc. and even showed me pictures of what reconstruction would look like. She also had a tissue expander for me to look at so I knew before the op what was going in my ‘new’ boob as a temporary measure.
I have had my drain out today and everything is ticketty-boo. Even did a light walk through fields of sheep enjoying the countryside and lovely weather. I have 2.5 weeks to wait for my results so I am trying to put that to one side and not fret about it just yet. Keeping active helps for me.
Ez. X
Hi Cookie,
Thanks for your good wishes. I hope you had a good appointment with your consultant yesterday and that you are continuing to make good progress.
Ez. X
I also share my best wishes that all went well. Having a really positive today as hospital finally confirmed both pre op and operation dates. Pre op 9th and operation 20th. Alongside the operation they have told me “I will need to have an injection first in radiology” so I’m guessing this is the nuclear part. Thank you so much for helping me and giving me all the information so today’s little injection wasn’t a surprise ?
That’s great news and should put your mind at ease. Apart from consultants bedside manner, I certainly have nothing but positivity for the NHS. They’ve mainly so far dealt quickly and swiftly to get me to this stage. Positive vibes from here too. Xx
Thank you for your response and yes it is helpful to here someone who’s come out the other side. Again all positive and makes me realise I’m not in denial just being positive. After all they’ve slapped me twice with negative news, surely there can’t be a third!
I tried looking for the thread on treatment so I could found out what I needed to take in hospital etc and couldn’t find it. The hospital have now delayed my pre assessment until Friday 9th June, I fly on holiday on the 10th and return on the 18th ready for surgery on the 29th June. So don’t have much time to get things together after the pre assessment. Annoying! Like to be organised and ready.
Ladies, you’ve all been so helpful in keeping me positive and armed me with additional information,
Especially the radioactive injection that will happen on the morning before pm surgery.
Thank you ?
Hope your all having a lovely weekend xx