DCIS pre op isolation loneliness-not sure what to expect

I was diagnosed with DCIS in right breast in Nov, surgery delayed but now given date 02/02. 
In non Covid times my friends and family would've visited and kept me busy but that can't happen.
I now can't even go out for a walk as am in pre op isolation for 14 days and post op for 3 days. I can't believe how much I'm struggling with it all.

My pre op assessment on 14/01 felt chaotic. The nurse was lovely but was understandably clearly stressed in these difficult times and just poured out all her troubles to me. The doctor wasn't available as they had Covid and no other doctor could see me so no chance to have the procedure explained or for me to ask questions about what will happen before, during and after or what sort of scarring I will have. I understand that is just how things are now and no one is to blame but it has oddly unnerved me.

I'm unsure if I need a Covid test before the op as I had Covid in Dec (it's been a tricky few months!). The nurse said it may lead to a false positive and she would have to find out. I also don't know when the wire will be put in. It maybe 01/02 or 02/02 but they couldn't tell me. They said they would ring me but they haven't and I don't want to ring them and be a nuisance.

My usually lovely husband couldn't attend any of the appointments because of Covid restrictions, seems very detached and is now camped out in in a separate room due to me isolating. 

I feel guilty for posting as I know it could be worse and my prognosis should be good but I'm just thinking about it and worrying all the time. I don't want to bother friends and family as they will worry especially as they can't visit so I just brightly tell them "I'm good" and change the subject if they message.

I'm not usually like this and take everything in my stride. I'm not sure if having Covid had left me a more anxious person at the moment. It's like my brain is struggling to function properly! 

is there anyone here who could tell me what to expect for dcis surgery, what happens after, how long will I need off work, will I be able to do things after op or is it rest and if so, how long before feel ok again, what will the scarring be like, is there anything I should avoid doing or anything I should do before/after, how long does the op take, does it hurt, any hints and tips?

 I know everyone here is going through worse but I feel like I'm going under or maybe I just need a hug x

  • [@JulesW]‍ 

    Welcome to the site no one wants to join. I only joined recently and everyone is very friendly.

    I was diagnosed with breast cancer in December after a mammogram. I had left breast ductal cancer. Grade 2. 5mm lump. Ostrogen and progesterone both positive. Her2 negative. I had a wide local excision and sentinel node biopsy. Went in 29th December at 7am home at 3pm. I have 2 scars, one on my boob and the other is under my armpit both are about 4inches long. On coming out I had 2 dressings which I took off after 6 days with advice from my breast care nurse. Started my excercises the next day gently at first. I found under the armpit the most uncomfortable, I used a soft sock tucked underneath trapped by my bra straps. You will be given stockings to wear for 2 weeks after the operation. Take any painkillers that you need. I was very tired and weepy for a few days after my operation. 

    The magaseed was put in the week before. Bloods were taken on Christmas Eve and I had a covid test on Boxing Day. 

    Unfortunately when I was given the results my lump was actually 15mm, removed 2 lymph nodes. Now I am having another operation on Tuesday 26th January this is to scrape all the pre cancerous cells and remove more lymph nodes. (DSIC) I had a covid test yesterday.

    Everyone is different in how they deal with cancer, I'm the type of person who has told nearly everyone. My husband is my rock. Fortunately he has isolated with me. That was hard when he couldn't come to most appointments but was able to come in for the results.

    I have cried and moaned a lot over the past few weeks, but also laughed with others.

    You don't have to be strong, you can have wobbles. 

    Phone your Breast care nurse for more information as that's what they are there for.

    Good luck with your operation.

    Litchielou x

  • [@Litchielou]‍ 


    Thank you for replying and for all the information.

    It's good to have an idea what to expect and to hear there are exercises to do afterwards.
    I have a lot to learn and felt I had no one to ask. I didn't want to call the breast nurses as could see how busy and stressed they are. I know they need their time to help people in much worse situations. 
    We have a lovely but energetic dog so been told my husband can't isolate with me as has to go out to walk the dog. Also two sons so trying to be "brave" for them. Very strange times when this leaves us in separate rooms. I guess I'm usually very busy, now have too much time to think and am missing them all.
    I'm surprised how lonely I feel and know it's my own fault because I have told my friends and family what is happening and they are all amazed how positive and unphased I am! It seems I'm very good at hiding how I feel.

    It sounds like you are really going through it. Thank you for sharing details about your journey with me. It's very kind of you and has really helped.

    Best wishes for your op tomorrow and for recovery afterwards.
    Thank you so much for replying

    Jules x
     

  • [@JulesW]‍ 

    At first I put on a brave face but now with certain people I have let them know how scared I am. I've also started to write down everything I'm going through. As something's I'm forgetting.

    The information can overwhelme me occasionally. Also write down any questions you might have for the team that's looking after you. Have you had your pre op yet. I was able to ask a few questions there.

    Another little bit of information wear a front fastening top on the day of op and loose trousers. Not like me I wore tight jeggings and the nurse had difficulty helping me put them on because of the stockings.

    Come back anytime and chat if you want. Please phone your nurse that's not your fault they are busy. You are just as important as anyone else.

    Take care

    Litchielou x

  • [@Litchielou]‍ 

    Thanks for the advice. I had my pre op assessment on 14/01. The nurse was very stressed and offloaded her difficulties and the doctor not available as he had Covid so I came out with more questions than answers. I understand things are very stressed and stretched for them all especially at the moment so didn't want to bother them but took your advice and called the nurse today.
    Thank you, of course the nurse was lovely. Feel daft for not doing it earlier! She said no Covid test before op as I've had Covid within last 90 days. (Thankfully recovered as it was horrible). She also said both procedures will be done on 2nd instead of over two days which is a relief.
    I also had a (distanced) chat with my husband. He'd realised I was struggling but was at a loss at what he could do. I guess it's tricky for them too. 

    Thank you so much for your replies. You have helped me more than you will ever know.

    Good luck with your op tomorrow. Hope all goes well. If you think of it and get a chance, let me know how you get on. I'll be thinking of you x

  • Hi Jules,

     

    I have just read your post and wanted to offer you support. I was diagnosed in May last year, Grade 3 4cm tumour. Weak receptors HER 2 neg. I had chemo first then lumpectomy in December. 
    I was so scared of the operation, so can really empathise with you here. But it was nothing at all like I feared. 
     

    What kind of op are you having? Are they doing a lymph node biopsy at the same time?

    What I'm hearing though are the underlying problems you are having thanks to the pandemic. It is so hard having cancer treatment when you can't get a hug from your friend. 

    It feels lonely and isolating. You cope the best way you can. Your cancer-your way! Staying positive helped me hugely and I believe helped saved my life. 
     

    Reaching out to others in my position was the best thing I did. You're doing that here. 
     

    You have had somegood advice here. Let me know what you're having done and if it's similar to me I'll tell you my experience. It really was good snd I recovered very quickly. 
     

    Take care.

     

    Mrs Boo xxxx 

  • Hi Mrs Boo,

    Thank you for replying. You sound like you have been through a tough time and it's kind of you to take time to reply. 
    I really have been feeling quite pathetic and I think you have hit the nail on the head that it is more likely to be due to the pandemic restrictions and isolation. Like so many, I am really missing my friends and family and hugs.
    I have DCIS (ductal carcinoma in situ) non invasive and low grade. I'm one of the "lucky" ones compared to so many on here and know others are having to cope with much worse.

    The op is breast conserving wide area local excision. I've been told it's like a lumpectomy but they have to put a wire in first as they can't see or feel the area that needs to be removed when they operate. I really don't know anymore than that as was diagnosed in Nov, advised need surgery but no theatre space and sent home to await follow up in 3 months. I'm presuming no lymph node biopsy as it's non invasive (?)

    I'm lucky to now have a date for my op 02/02. I was told to think of questions for the doctor at my pre op assessment appointment and at first I didn't have any but by the time of the appointment on 14/01 I had lots. I guess the doctor would've explained the procedure at that appointment but unfortunately, half way through my pre op appointment, I was was told the poor doc had Covid, no one else was available and I was just, understandably but abruptly sent home. It can't be helped and the breast care department were having to deal with so much. The nurse I saw seemed so stressed and virtually gave me her life story. She was dealing with a lot more than me but it left no chance to find out about the procedure so I've stupidly asked Dr google which of course, hasn't been entirely helpful.
    I'm usually such a positive person and just get on with things no matter what life throws at me but I have to admit this has floored me a bit. I know it's just a blip and all will be ok.

    I am sure you're right and I'm probably just missing friends and family due to pre op isolation (14 days before and 3 days after) and of course, all the Covid restrictions before that. 17 days is such a short time but it feels like time is standing still. I feel a bit daft really. 
    It's good to hear you recovered quickly and I hope you are doing ok in these difficult times

    All the best

    Jules x

  • Hey,

     

    You are NOTstupid or pathetic. You are a human being trying to make your way through cancer planet withoiut a map!  And...on the back of a global pandemic. 

    I had exactly the kind of op you are going to have. My tumour was high grade but loved chemo - so after 8 cycles of chemo - June to Nov last year, the solid disease had been abliterated! This was very good news. I had a number of lymnph node biopsies too - all negative , so like you feel I am one of the 'lucky ones'. That label we catergorise ourselves under suggests we are positive and optimistic, as let's face it, you are not lucky if you have a breast cancer diagnosis. Worth flagging up!

    Anyway, the op. I went in the day before to have the wire inserted. This does not hurt at all and lasts about 10 miutes. They gave me a local anesthetic. The wire goes in with the help of an ultra sound and/or mammogram. This is to guide the surgeon to where the tumour is/was. Mine had gone so they were aiming to get the wire as close to the tumour marker that was still in my breast. The wire is in then taped up and I went back to my ward. I was first up the next day. This was so scary for me. I had never ever had an operation and being a control freak, hate not knowing what is to come. As it is COVID, you are masked up and wheeled down empty corridors. It feels surreal but was done safely. The team in the operating theatre explained what was going to happen. It took about 5 minutes in this bit before I went into main theatre. I was told I was going to have a candula fitted which went in well. Believe me after 8 cycles of chemo I have now began to hate these bloody things! But it was fine. Then the pain relief and morphine go in. You are told you will feel a lilttle giddy - I did. Then seconds later they administer the anaesthtic - you are told to count down from 10....of course you don't as you are out of it!  The operation took less than an hour. This was longer for me as they were doing another lymph node biopsy too. The results take baout 10 minutes to come back. If they had found cancer in those they would have removed them all and I would have had a drain. Luckily again they were negative so only 2 were removed to check. I still have the rest! 

    You are low grade so I am expecting this means you won't have this done. 

    The surgeon took a 2cm tissue sample from me to be tested at the lab for cancer cells. These results take about 3 weeks. Again 'lucky' here as I had no cancer residue at all and was told I had a complete pathological response. You want to hear this! 

    I came round from the op to find I had been glued back together. No stitches or banadages to be seen. I was not sore at all and felt nothing. Struggled to use my arm to pull myself up but nothing else. By the afternoon I was sat up marking assignments for my students using both arms perfectly well. 

    I had brusing, yes, lots of it - but very little soreness. Paracetamol was fine for me. I did the exercises and by the first week, it was like nothing had happened to me. I did wear a comfy bra - no wires - this I would advise!

    Take your time - we all heal differently and manage your expectations kindly. Give yourself permission to feel rubbish and fed up and scared. These feelings pass. You will find the resilience you need to get over this next stage on your journey. Focus on the end result - keeping your life and getting back to it! It will happen and very soon if you are in next week. 

    I wrote and published a blog to make sense of it and I have out the link here. Some of this might be helpful for you. 

    Blog | The Counsellors Cancer

    You are doing marvellous and have strong support there. I can see that. 

    Accept this is going to be a bit tricky but know you will cope and manage and that COVID won't be around forever.

    Take care and good luck xx 

     

  • Thank you. You have answered so many of my questions by describing your experience. It doesn't sound pleasant but bearable and you're right it will be sorted soon. 
    I have started reading your blog, only a couple of your entries so far as have been working today but will read more. I have already cried, not like me and I think it was some for you and if I'm honest, some for me but i needed to do that and strangely already feel better for it. I have also smiled and even laughed which isn't what I expected from a blog about cancer. It is well written. Thank you for sharing it. 
    I have definitely been having a wobble and you have really helped me understand that it's ok to do that. Thank you for being there and taking the time to reply. 
    Wishing you all the best x

  • [@JulesW]‍ 

    Had my operation yesterday it was a longer than I thought. Today I feel fine. Taking the painkillers and have started the exercises.

    I'm sure you know this already but a few tips which might help.

    No nail polish on fingers and toes. Remove hair from armpit. No Deodorant. Or perfume.

    Loose fitting clothes. Definitely a front fastening bra and top.

    Make sure you drink water and have something to eat after the operation. You need to pee before they let you home.

    My journey was an hour down winding roads. Have a couple of bags in case you feel sick.

    And after you have put the seat belt on have a soft cushion under the part that goes across your body this makes it more comfortable.

    Good luck for your operation will be thinking of you.

    Litchielou x

  • [@Litchielou]‍ 

    Hi,

    So glad you're feeling fine after your op yesterday. I was thinking about you and hoping all would be ok.
    Thanks for the tips - all really useful and most I hadn't thought of!

    I was so all over the place, I didn't know where to turn and reached out here. Thank you so much for replying. I'm feeling a lot more settled now I have more of an idea what to expect and some useful hints snd tips to.

    I will always be so grateful to you and Mrs Boo for responding. You have helped me more than you will ever know.

    Good luck with your recovery going forward

    Xx