Complete Newbie to forums etc

Hi, I’ve never written on a forum before, it’s taken me 45mins to work out how to do this :see_no_evil:
I was diagnosed with quite widespread DCIS in my left breast and invasive ductal carcinoma in my right breast. 7 days ago I had a bilateral mastectomy. I thought I was doing really well until I run out of codiene last night. I had cut down and thought I’d be okay with just cocodamol 8/500. Boy was a wrong! Hubby was great getting in touch with GP who prescribed more codiene. Is it normal to be still in this much pain a week later? I feel I’ve gone back a whole week. No sign of infection or anything that I can see. Although I am surprised I have had no check ups or even a phonecall. Still have 2 drains, I was told just to get in touch after 2 consecutive days of less than 30mls. Feel quite lonely tbh.


Sorry to hear you are struggling with the pain. I’m glad you have been able to get more codeine. I don’t think there is a ‘normal’ really, everyone responds differently and that’s ok, just make sure that you are getting what you need. I had very extensive DCIS and underwent a mastectomy with immediate DIEP flap reconstruction just 12 days ago. I really struggled with the pain at first but have suddenly turned a corner and am now coping fine with just paracetamol. Be kind to yourself and remember you have undergone very major surgery so it is going to take time for your body to heal. I hope the pain improves quickly xx


Good morning mrsdj,

So pleased you have come to the forum, not the place you you wanted to join , however, we are all here to help you as we’ve all been there ourselves. I’m so sorry you are uncomfortable

Please contact your breast cancer team this morning, your drains need to be checked, and possibly removed, you needed to be seen, hopefully you will get an appointment very soon.

Wishing you well going forward, please let us know how you’re getting on.

With the biggest hugs Tili :rainbow::pray::rainbow::pray:


Hello mrsdj

Welcome to the forums, and well done on persevering with joining and posting.

I understand how you feel about being abandoned after surgery. I had a mastectomy in 2020 and a wide local excision on the other breast this summer. Both times I felt just left to get on with it. I knew I could call the nurses if there was a problem but never had a follow up call just to check in. I feel that after this type of surgery some kind of check on your emotional well being would be useful.

Have a look around the forums, there is a very supportive and informative community here.


Hi @mrsdj

Welcome to the forum - I hope you find it a helpful and supportive place. I’m sorry to hear about your diagnosis, and that you’re in pain and feeling lonely. As you will have already seen from the responses, the forum is a lovely community so you’ve come to the right place.

Please know that our nurses are here for you any time, here on the forum on Ask our Nurses your questions or over the phone 0808 800 6000.

Sending our love,

Alice :heart:


Hi @mrsdj

So sorry that you are struggling - I hope your pain is back under control now . I can’t offer much personal insight re mastectomy pain as I had lumpectomy however if you use the search box at the top of the page I think there will be topics which might offer some reassurance - if we were to post on those hopefully someone will respond.

Well done for getting yourself onto the forum , :clap: if you don’t do something quite right nobody will mind believe me .

I’m really surprised that you haven’t had a follow up phone call . My BCN service hasn’t always been perfect but I had 2 phonecalls after lumpectomy , though there does seem to be a variation depending on where you live. I’ve been in the situation before where I thought " shall I call them or not " and didn’t but then wished I had so I think it might be a good idea for you to call them in case you’ve somehow fallen through the cracks and I think you need to ask about your drains as well

I think your pain should improve once the drains are out ( incidentally have you been given little bags to carry them in ?) but make sure you take some good pain relief a good half hour before you have them taken out .

Hope you feel better soon
Joanne. X

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Like a previous responder I had a double mastectomy in 2020. I can’t remember the pain levels, or how long they lasted - except that on car journeys my partner had to drive slowly so I wasn’t jogged about too much. As others have said, everyone is different, and the surgery is huge so there is a lot to hurt and to recover; be kind to yourself. Best wishes

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Hi Mrsjd

I had a bilateral mammoplasty last year. I was in hospital 2days on morphine and paracetamol. At home I had to cope with a few days morphine and then paracetamol/ibuprofen as I can’t take codeine. If you are in pain contact your nurse or GP. And I would contact your nurse about the drains. I had one out the day I left hospital and the other at day 5.

You are not alone. There is lots of support on here.

K x

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Thank you all for your kindness. Such a lovely welcome and good to feel less alone. My husband collected more drainage bags and spoke to nurse who seemed quite happy for me to wait until drainage is less than 30mld before I need to be seen. However, my GP asked me to get in touch and reading some of your comments I will get in touch with them again today. Pain however, is now back well under control with codiene and paracetamol. I shall let you know how I get on. Thank you again for the welcome and reassurance.


I am a total newbie as well
I was diagnosed with secondary breast cancer in november I am full of fear,anxiety and paranoia
Does anyone else feel the same and is it my fault?


I have no idea on how to introduce myself i do apologise

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Dear Thalia,

We are here for you, anytime day or night, so sorry to read your post, please don’t blame yourself, we can all feel like this or apologise for anything.

I hope you are getting support from your love one. I would like to wish you well going forward if you can remember to have a little notebook around, write down what’s on your mind before going to your next hospital appointment I found this helpful.

Please keep posting and letting us know how your getting on

Hugs Tili :rainbow::pray::rainbow::pray:

So many thank yous Tili
I hope for support from husband at some point!!!weve been married for 50 years so having managed addictions etc we certainly can get through this
Its naturally a first!!! As is me having suicidal thoughts! However i am still here which speaks volumns

Welcome to the forum @thalia

I am so sorry to hear about your diagnosis and the anxiety that you’re going through. It is understandable to feel fear and paranoia when there is so much uncertainty.

As @Tili has said, the forum is here for you anytime. Please know that our nurses are also here to talk things through, on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.

Sending our warmest,

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Hi Thalia,

Sorry to hear your news. I’d recommend that you request counselling to help you come to terms with your emotions regarding this news.

Make a note of any questions you have and be prepared to note down all the tests mentioned to make sure they happen.

Once you are on an agreed treatment plan you will have regular hospital appointment and feel calmer. I’m not going to lie and say you will feel better as its difficult to come to terms with why this happened to you…

Its not your fault. Try and enjoy xmas with family, delegate those tasks…

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Hi Thalia , welcome to the forum . Lots of support here from people who understand the horrible emotional rollercoaster . Please post anywhere , someone will reply but if you want to connect with people also living with secondary breast cancer you could post in the Living with secondary breast cancer section and also ask to join the private secondary group on the forum .Best wishes Jill x


Its now feb24 had oncology apointment last monday it was awful the ribociclib and latrozole are not working
Now awaiting liver biopsy oh jeez it just gets worse anyhow thank you all for your support i really appreciate it
I am defo having some counselling thats what i really need as im in constant fear and anxiety

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Hi Thalia,

So sorry to hear that Letrozole and Ribociclib hasn’t worked.

The biopsy will help the oncologist work out if your cancer has changed and as a result work out what alternative drugs could work.

Its frustrating that there are no drugs that can manage this condition for a long period of time (yet), which is the case for many chronic conditions which we are told to think of secondary cancer as being. There are however lots of different drugs that can help.

Counselling should be offered via the BCN, if they haven’t done this then ask as there will be a waiting list.