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DCIS

20 REPLIES 20
Kjbuni
Member

Re: DCIS

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
lizred
Member

Re: DCIS

Hi, was reading this thread with interest as it sounds so similar to where I was at last year - thought you might like to hear from someone a bit further along the line, though the other two ladies have been offering some great support - this board is fab! Anyway, like you, I was diagnosed with widespread high grade DCIS last year (following a routine mammogram) and offered a mx and immediate implant recon (also too skinny for own body recon). It does feel like a crash course in breast cancer terminology and procedures doesn't it, at a time when you're probably least able to take in new info because of the shock of the news. I had the injection for the sentinel lymph node biopsy first thing - it sounds scary as they inject into your nipple but it only stung for a few seconds then was fine - then I went up to the ward, operation that afternoon. I don't react very well to anaesthetic so was pretty sick that evening but felt much brighter by the following morning and went home the day after. Didn't need any pain killers after the first couple of days but everyone is different of course in how much they bruise etc so best to stock up.

It took me a little while to get used to carrying the drains around - take a cotton shopping bag with long handles in with you to put over your shoulder and put the drains in - it makes it so much easier and leaves your hands free to brush your teeth, hold a cuppa etc. There's a good thread on the Going Through Treatment bit of the site that has lots of info re what is helpful to take into hospital with you. I'm small breasted so didn't wear a bra at all for the first week or so, just a camisole vest type top, since then I've been in cheap soft crop top type bras (Peacocks do them for a few pounds) but obviously you may need more support, especially if you are larger breasted.

It took me a few weeks to get back to a more normal range of movement in my arm on that side - got to practice the exercises you will be given several times a day - and several months for the implant to feel a normal part of me rather than a tight ball on my chest (not painful, just odd feeling). It took me several months to go back to work but that was because I was struggling emotionally (had other stuff going on last year as well and it all got on top of me).

Enough about me, hope some of this has been helpful and your op and recovery go really well x

Kjbuni
Member

Re: DCIS

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
cookiefairy
Member

Re: DCIS

Thank you both, yes appointment went well, she is pleased with progress - as for the seroma it is just a waiting game for my body to realise that it needs to drain!! It could be days, weeks or months, but I feel better knowing that i haven't done anything to cause it and can't do anything to hurry it along. Will monitor me weekly and can be drained again if I need it. I know the NHS get poor publicity, but I can't fault them 

Good luck girls positive vibes coming your way 🙂

 

Kjbuni
Member

Re: DCIS

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 😘
Ezzie1698
Member

Re: DCIS

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

cookiefairy
Member

Re: DCIS

Hi Ezzie,

glad to hear that you are recoering well and you will feel much better without the drain. Although I did get quite attached (no pun intended) to it, felt like a teddy in bed ha ha

Good luck with your results and yes, keep busy 🙂

 

Ezzie1698
Member

Re: DCIS

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

 

 

cookiefairy
Member

Re: DCIS

I had my pre op at the main hospital just before my nucler experience (we call it that because it sounds exciting!) I am fortunate in that we have a local breast haven unit where all other visits take place and the bcn are based.  Mine were at the end of the phone or same day appointment, not sure if this is the case everywhere, but just to talk through concerns. I usually went with a list of question, some clinical, others maybe silly (what pjs to take into hospital), but all were treated with kindness. Maybe give them a ring and take a list of your concerns, just to put your mind at rest - if you are like me you will then think of 20 more to worry about. I even bulk made cakes so that I could offer them to visitors, like it mattered, but kept me busy ha ha. 

I did find this forum re-assuring, just to know that I am not alone. Everyone reacts differently to the news,  I didn't want chinese whispering so sent out a text to all with basic details and request for no reply and no kind words as just wanted to get on with it. Obviously didn't text my parents, sisters and kids (the worst bit of the whole episode) - that would have been a bit harsh ha ha!

As they say, good to talk Woman Happy

Kjbuni
Member

Re: DCIS

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 😀
cookiefairy
Member

Re: DCIS

Yes the two week wait for the results...... but I tried to put it to the back of my mind and kept busy, lots of visitors then my daughter came to stay with me for a week to give her dad a break (he went off to stay with a friend for a couple of nights, he so deserved it ) so that broke it up and before I knew it the dreaded day had arrived. 

I dont want to make light of the op and the after op discomfort, but like child birth I have forgotten about most of it. If you are having an immediate implant just bear in mind that as my surgeon said it is several ops in one. She said it was the removal of the breast, lifting of the muscles to insert the implant and the lymphonode biopsy. The initial pain was the muscle across breasts and the tingling sensation of the nerve ends, but this is controlled with the pain killers. My daughter set an alarm on her phone for every 2 hours and fed me paracetomol and ibrorofen alternatley as the bcn said not to suffer and to keep the pain killers topped up. So start stocking up as shops limit the number of packs purchased ha ha...

The most important thing is to focus on beyond the blip, enjoy your holiday, stock up on dvds, books etc. to keep yourself occupied in between visitors, I managed to crochet two baby blankets in the first two weeks, not that I am very good 

Good luck for the 20th - you may have to go the day before to the nuclear dept for the tracking device, took 10 minutes, if that - this is when it hit home for me

Have a good holiday too 🙂 

 

 

Kjbuni
Member

Re: DCIS

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
Member

Re: DCIS

Hi

no problems, we are all here to support each other and have had different experiences. I was very badly brusied after my biopsy, but that is me - the bcn was surprised at the colour of me! I did have sharp stabbing pains and when I think back I recal having them before diagosis.

I keep reminding myself that it's a blip in my life, thank goodness for early diagnosis and that it was caught as DCIS and not spread . It was difficult to get my head around the fact that I was having major surgery for something I didn't know about and that was classed as high potential to be cancerous and spread - therefore as I saw it was a preventative measure. (Just my thoughts)

But 6 weeks post op and I am determined to put it behind me. I just keep spreading the word of the importance of routine mammograms. 

I feel for you as it is the waiting that is awful as you say a flurry of appointments and decisions,, then a lull, then it will be all go again. 

Have you a date yet?

Kjbuni
Member

Re: DCIS

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
Ezzie1698
Member

Re: DCIS

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

 

 

 

 

 

Kjbuni
Member

Re: DCIS

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
cookiefairy
Member

Re: DCIS


@Ezzie1698 wrote:

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, firstly sorry to have to 'meet' you here, but you will get through it. I was diagnosed early March with high grade DCIS I had a masectomy and immediate implant on 22nd April. I had a drain in for a week, which was more of a nuisance than painful. It did make me hold myself awkwardly and therefore I had aches and pains in my shoulder. Easy to say relax your shoulders!! My drain was removed after a week and dressings after two weeks. I was on a weeks course of antibiotics while the drain was in as a precaution and took paracetomol and ibrubrofen every 2 hours with codiene at night to help me sleep. I eased off with these after a week and probably down to nothing after 3 weeks. I have had an issue with seroma (fluid gathering, not draining as my lymphnodes were messed about with). I became a one sided Jordan and had a pint of fluid removed with a syringe (not painful) the another 1/3rd pint the following week. It has been two weeks and I suspect that I will need draining again when I see the consultant tomorrow. It is quite common and nothing to be concerned about I am assured. I started driving after 5 weeks and today went to a pink ribbon pilates class, which was very gently and helped with the stretching. I just want to be normal so going back to work next week on a very fexible as and when basis.

As for bras I bought a pack of two from Asda - specifically for post op, available oline only (think £12 for 2) my bcnurse was very impressed with them as was my consultant - just bought a cup size bigger and set of extenders to allow for swelling.

Apologies for the lengthy reply, but I remember just needing as much info as possible. almost like cramming for an exam that you didn't know you were going to take!!!

Good luck and remember no question is a silly question

cookiefairy
Member

Re: DCIS

Hi, firstly sorry to have to 'meet' you here, but you will get through it. I was diagnosed early March with high grade DCIS I had a masectomy and immediate implant on 22nd April. I had a drain in for a week, which was more of a nuisance than painful. It did make me hold myself awkwardly and therefore I had aches and pains in my shoulder. Easy to say relax your shoulders!! My drain was removed after a week and dressings after two weeks. I was on a weeks course of antibiotics while the drain was in as a precaution and took paracetomol and ibrubrofen every 2 hours with codiene at night to help me sleep. I eased off with these after a week and probably down to nothing after 3 weeks. I have had an issue with seroma (fluid gathering, not draining as my lymphnodes were messed about with). I became a one sided Jordan and had a pint of fluid removed with a syringe (not painful) the another 1/3rd pint the following week. It has been two weeks and I suspect that I will need draining again when I see the consultant tomorrow. It is quite common and nothing to be concerned about I am assured. I started driving after 5 weeks and today went to a pink ribbon pilates class, which was very gently and helped with the stretching. I just want to be normal so going back to work next week on a very fexible as and when basis.

As for bras I bought a pack of two from Asda - specifically for post op, available oline only (think £12 for 2) my bcnurse was very impressed with them as was my consultant - just bought a cup size bigger and set of extenders to allow for swelling.

Apologies for the lengthy reply, but I remember just needing as much info as possible. almost like cramming for an exam that you didn't know you were going to take!!!

Good luck and remember no question is a silly question

Kjbuni
Member

Re: DCIS

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
Ezzie1698
Member

Re: DCIS

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

 

 

Kjbuni
Member

DCIS

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. 😬