OPERATION IS APPROACHING AND I'M TERRIFIED

Hi Fiona

Thanks for your concern. I did see a psych, bless her who gave me some silly exercises for body image. Basically you stare at yourself and breathe deeply. Though I accept it may be highly effective treatment for some it does not help me. She actually did not diagnose depression, she just thinks I feel sad, which is not the same.

I am sincere in what I say and I think it is important to be honest, even if it is sometimes scary, I think there are any well meaning people who sugar coat this horrific reality. Women who feel like me, whether many or few, must remain silent and not express our sadness to our loved ones, medics or even on here for fear of offending anyone.

If “vulnerable” women read my posts and question some aspect of what they are or are not being told then that’s a good thing. I think it’s the only route to informed consent.

Actually, I have never complained about chemo. For me it was far from the worst bit, the SE’s were doable and I was lucky that my hair and nails etc grew back - it is the mx and sorry attempt at recon which repels, disgusts and distresses me. It is the only irreversible and permanent effect I have.

And nearly 18 months on I feel worse than I ever have in my entire ife as the new normal unfolds.

I don’t known what IFKWIN means.

It’s precisely because there are no guarantees that we should question and be happy with any advised course of treatment. It is that unpredictability in outcome that makes me want to make everyone aware that you may have more options than you havebeen told. What’s wrong with that? Percentages are totally irrelevat - you either are cured or not, have recurrance or not, can live with mx or not.

Best Wishes to all
Jane x

Hi Annys - just some practical advice about appointments, as your reaction of not really taking it in and getting to ask the right questions is, I suspect, very common. I found it very hard - I get weepy - so my husband came to all my appointments well briefed to take over if I needed it. Is there someone that can go with you next time?

IFKWIM probably meant to be IYKWIM - if you know what I mean

Thank Finty!

It’s obvious now you explain it - I’m so not on the ball these days! Also really good advice - definitely worth getting someone who is assertive to go with you, to record, advocate, challenge or whatever.

Jane x

Hi Annys

If you are not ready for surgery it is unethical for surgery to be carried out. It must be carried out with your informed consent. You must not feel pressured into surgery unless and until you feel it is you driving it - if you go into surgery with your present state of mind, there will be emotional repercussions afterwards. It is not going to suddenly be okay for you.

It is absolutely wrong to expect someone to commit to mutilating surgery when they are in a state of shock and not give them time to assimilate the information and feel ready to make their own decision on what to do about it, whatever it is. Your medical team should be aware of your feelings of shock and confusion, should be sensitive to this, should give you the time to discuss the details with them - and above all whether there are any reasonable alternatives, and what these are, in an unbiassed and unpressured way.

Your diagnosis is DCIS which is controversial anyway, and is not an emergency in that it may never develop into life-threatening disease, and is certainly not going to do so by next week. You have a right to put off surgery or any action until you are ready to take whatever action you decide to take. You absolutely do not have to be thinking about pleasing or not pleasing them. It is your body.

sno

Hi

I just wonder how many recons you have seen? Where I live my BCN organises re-con meetings every so often. She takes about 6 women who are contemplating recons and six women who have had recons who are willing to show us the results. I have been to one and have to say I was very impressed at the results of each of the different recons available and would have gladly have had them myself. Unfortunately due to the progression of my cancer I haven’t been able to fulfill that ambition yet, but the results were so natural looking that I wouldn’t have been able to tell that they were recons if I hadn’t of known.

Linda

Hi Annys

Wow, what a weekend you must be having - I’m so sorry but hope you’re bearing up.

Firstly, please please please DON’T feel that it’s a ‘done deal’ and you HAVE to go through this on Monday if you’re not ready. Sno and Jane really do know what they’re talking about where they’ve advised not to feel you have to ‘please everyone’ by being a brave girlie and ‘get on with it’, you don’t! We all cope differently and have different issues/lifestyles to contend with. I’m not saying leave it but ask for a little while, (I took about 6 weeks (my surgeon said I was ‘probably OK for a few weeks’ before I was comfortable with the decision).

Secondly, I have to say that I felt pretty much exactly as you feel now at the time of diagnosis. I had, at that time, 10 cms of med grade DCIS and was told mx was only option due to size. I was told that if I wanted reconstruction then my hospital did LD flap. My hobby is kayaking and so that wasn’t a doable option for me. Believe me, I totally freaked out - not about the cancer threat - but about being mutilated when I had DCIS not full blown cancer. Fortunately, by expressing my fears and not stopping until I had the full facts about what was going to happen to me, I was referred to another hospital who did the DIEP op (using tummy fat) which, for me was a far better option (ie, didn’t mess with my back muscle). After the operation, the histology provided showed that the DCIS was in fact ‘predominantly high grade with 4 foci of invasive disease’ and I was, in fact, going on to develop IBC which would have been fatal without any treatment whatsoever. So, I have the comfort (I consider myself lucky for this) of ‘knowing’ that the operation DID save my life. That said, and as Jane and Sno have said, with DCIS, a great number of people will have unnecessary operations in the name of ‘preventing’ rather than treating cancer - ie, low grade DCIS may never develop into anything else whereas high grade is likely to.

Annys, all I can say is that you ‘may’ have a little time to think on this and I would personally suggest pressing the ‘stop’ button (even if only for a week or two) before you decide, but that’s just my opinion. I personally could not have psychologically coped with waking up with no breast (although many women do - fear of cancer usually works!) Sorry for such a long post but really wanted to offer some support as I’ve been in your situation.

Lastly, I totally admire and respect Jane for her honesty and opening up on her feelings that so many chose to keep private and ‘put on a smiley face/get on with it’. We need to hear the truth from all angles, or at least have access to those who will tell it. Knowledge really IS power here! My recon isn’t briliant but it’s OK, however, I remain with issues as a single woman, despite being one of life’s ‘copers’ and can sympathise with anyone who feels they would rather take the consequence than go through recon if they had the choice again. My first surgeon, to whom I remain in deep gratitude, told me when I apologised for ‘being a baby’, ‘What’s the point in me giving you surgery to save your life, only to give you a miserable one in return’. Thank you Miss Evans!!

Lots of love to all. Cathy x

Hi Annys

I’m in a similar position to you, and understand exactly what you mean about not taking in the cancer and feeling so overwhelmed. I really agree with what most people have advised, that you should make sure to ask your questions before any surgery and be certain that you understand everything. (As far as I understand it) there isn’t a great big rush regarding DCIS. My BCN admitted that they try to process you quickly so that it looks good on their waiting time stats! But I’ve refused to rush, and am feeling better for taking even that small amount of control.

My initial diagnosis of DCIS was back in October. Diagnosis sounds very similar to yours (though I’m a bit larger, at 34C/D - depending on time of the month!) I went in in Novemeber for a WLE, but the margins weren’t clear and I was advised a mastectomy. I said I didn’t want to do anything til after christmas, and I didn’t make an appointment to go back, but left it open. I read as much as I could, talked to loads of helpful people here on the forums, then had a holiday from thinking about it over christmas, which was lovely!

I went in to talk to my surgeon again in January and during a mammoth hour and a half consultation where I went in armed with a notebook, pen and attentively listening boyfriend, went through every single little thing I wanted to know (including, ‘exactly how many pies would I have to eat for DIEP to be an option??’, and they listened and explained everything thoroughly, even the stuff they’d told me before at least once.

I have decided to have another WLE even though I know there’s a good chance the margins won’t be clear again and I’ll end up having to have the MX anyway. And even though I know it’ll leave me lumpy and misshapen. And even though I’ll then be looking at weeks of radiotherapy and maybe tamoxifen (which I probably won’t even take for long, cuz I want to have children pretty soon!) All of that is worth it for the chance to keep most of my real breast with its feelings and sensitivity - rather than have some weird alien lump for the rest of my life!

I know we’re all different, and your experiences and priorities might be very different to mine, but I wanted to explain all this to show that there are options, and you can assert yourself more (I could be wrong, but it sounds as though maybe you haven’t?)

I’m going in for my second WLE next thursday, then I’ll get the results about 10 days after that. Of course I’ll be devastated if the margins aren’t clear and I’m looking at an MX after all, but I really believe I’ll be able to cope with it a lot better for knowing that at least I’ve tried alternatives. I don’t think I could live with the knowledge that I’d allowed my breast to be lopped off in a rush of panic and confusion, and not really even understood what was going on, what the risks were, what the options were…

I think snowwhite is right that going in for the surgery feeling helpless and uninformed is likely to lead to emotional repercussions. It’s not necessarily even about avoiding the MX, but doing all you can to understand the issue and the problems and the options, and feeling as confident as you can that it really is the best option. That’s how I feel anyway.

I notice you haven’t posted back here for a few days and I hope we haven’t all scared you off with our forthright advice! We all wish the best for you, and it’d be great if you could let us know how you’re doing - no pressure :slight_smile:

good luck
emma

ps, I too had never had surgery before my biopsy, and was terrified due to the unknown. But it was fine in itself. I was groggy for a day or two, then quite quickly back to normal. I wasn’t half so scared going in for the WLE, cuz I’d been through it all before. Again it only took a day or two for me to be back to normal-ish, but I was very tired for some weeks afterwards and really struggled at work a few times.

Hi Annys, my friend had DCIS and had double mastectomy. She actually requested it herself just to try to ensure she was safe.

I totally understand your fixation on the mastectomy and not the cancer. I dont think i really thought much about cancer in the six weeks between diagnosis to surgery as i couldnt think of anything but the fact i was about to be ‘mutilated’ in my eyes too. I felt angry and resentful that they were ‘doing this to me’. I was in tears going into the hospital and didnt want to go. Burst into tears entering the ward too.

Hope you get all the answers you need to calm you prior to op. I got thru it and have to say have surprised myself at how well I have coped. It didnt actually bother me afterwards and my usual humourous approach to things got me thru.

Its a scary thing to go thru and am glad you felt able to post on here cos it does help to talk to others who have been there x

Hi again

Just wanted to add that for me too, this was my 1st ever operation and, like many, I was terrified I’d die under anaesthetic (8 hour op) but have to say, was amazed at how ‘OK’ I was afterwards, even if totally bedbound for a few days (then a further 3 months recovering.

As others have said, please please don’t be frightned by honest posts on here. Personally, I felt empowered by reading both good and bad expeiences, ie, there were no ‘shocks’ for me and this helped me psychologically.

Lots of love. Cathy x

Cathy your right. I told my surgeon that i was scared of dying in theatre and he laughed and said that if he had a penny for every person who told him that he would be a billionaire.

Its a very natural emotion. I was convinced i would and i survived 11 hours under the knife with no ill effects x

Hi everyone

A big thank you to everyone who have posted their reassurances and advice for me to read. Unfortunately, just after my last posting I had to return my laptop computer back to work - I’m a teacher and the supply teacher needs it for lessons. As a result, I didn’t have access to the forum until today and I’m now 8 days post op.
How I went through with it I don’t really know. I came close to recalling the consent form an hour before the operation but an understanding nurse talked me through my worries. Now, several days on I’m a lot calmer if a whole lot sorer (if there’s such a word!) I realise now that it was a lack of information and a totally cold surgical team that freaked me out more than I needed to be. My surgeon did not see me on the morning of the op even though his colleague saw his breast patients to reassure them. When I was in the anaesthetic room being prepped for the op he came in banged my notes on to my feet and totally ignored me,not even a good morning. I started to shake really violently and the anaesthetic team clustered around in concern and genuine warmth to reassure me and then I was knocked out. I did not see him the following day but the hospital bcn came round and I told her how I still didn’t really know much about my cancer and that my surgeon’s treatment of me left me feeling like an object. She got my notes and told me that I had grade 2 dcis 52mm and that the mastectomy was essential becuase of the size of the dcis. A short time later the surgeon and his two robotic assistants came up (I’m sure becuase of the bcn) and he told me the dcis would have evolved into a nasty cancer. He then joked about my flat small breasts and said he’d tried to find an implant that was small enough and flat enough to match it and then left. I was under the impression I was supposed to be have been gratified by his visit. I did not see him again for the rest of the 4 days I was in hospital. His registrar and house officer are both women and I feel shame on them that they seem to be adopting his cold clinical manner.
At least now, I feel my mastectomy may not have been in vain. I am due at the clinic on thurs to have my staples removed and I will see his handiwork for the first time. I am worked up about his contemptuous opinion about my small flat breasts - I’d never thought of them in that way before- and it has affected my body image now. I try not to think about it too much, as I don’t have a high opinion about him either except that he seems to think he has the right to vocalise his views whilst I’m too good mannered to say that he may be a marvellous surgeon - by reputation I’m told but I’ll be the judge of that myself on Thurs- but his bedside manner is non-existant and he should have stuck to general surgery not breast surgery as he cannot empahise with women at all.
Two lymph nodes were removed and I’m not sure why as my dcis is supposed to be non invasive. I’m a wee bit worried that maybe there’s more there than was thought of at the time but I only have 2 more days to wait to find out. I have spent the last 8-9 weeks waiting for closure on this, maybe that’s now about to come.I’m nor looking forward to having this man as my consultant in the coming weeks and months but I’ll just try to grit my teeth and bear it. I’ve been reading some more comments about lovely understanding surgeons and bcns and I feel very envious. I am a naturally anxious person and need a lot of reassuring and information. To have had an understanding surgeon and bcn who’s not bustling around recommending anti depressants would have been marvellous.
Thanks again for all your comments. Keep in touchj.

what a trying time you have had due to the arrogance of your surgical team, so sorry , its hard enough to get through this , have you thought of changing your surgeon, its patients choice and we all deserve basic care and good manners .

good luck

hi, sorry to hear you are having such bad treatment from this surgeon. I was initially misdignosed 6 months before finally being told it was cancer and the surgeons attitude will always be with me i think. He was just interested in passing the blame elsewhere and didnt look either myself or my partner in the eye. He was a very rude man but to cut a long story short i changed surgeons because of this, you are entitled to change to another surgeon if you wish to. I now have a wonderful female surgeon, who is so down to earth, even to the point of giving me a hug when she knew how scared i was the morning of the op. Speak to your BCN if you want to change, im sure she will support you.
good luck
anna

ANNYS

Please don’t take any rubbish from your surgeon even now. It took me a long time to change surgeons and hospitals but in the end it was in my hands, not theirs.

I’m new to this site but was dx a long time ago and I’d like to think my experience would not be repeated but sadly that is not what I always read. Surgeons are full of the same human frailties as us.

Please get in touch on herer again if you are unaure as to how to put yourself in the care of another surgeon. A decent man will not object to you asking to be referred to someone else and I bel;iev your GP might even be able to facilitate that.

Please don’t suffer in silence as it were.

Old Woman

Hi Annys,

What a horrible experience you’ve had! Sounds like you’re coping with it pretty well though. Glad you’re doing ok.

All the best
emma

Thanks to everyone’s advice about my surgeon. I saw him today for my results and he was actually pleasant. I was so surprised. He called me by by name and chatted about my job. He made me feel like a person. He also gave me good news!!! I don’t have to have chemo. The cancer was invasive grade 1 8mm in size but having the mastectomy means its all all all gone. He also says that the lymph nodes are probably clear - he’ll be 100% certain when I see him next month. I was surprised that they’ve not got all the results in 15 days after the op but he said they are rechecking them again but he’s more than certain it’s ok.I have to take tamoxifen because the cancer cells were oestrogen positive.
I’m also quite pleased with the reconstruction - he has done a good job. Its difficult to say for certain as I have all the staple marks across the top and its still swollen and bruised but looks good. It was also wonderful to put some make up on and wear heels and some smart clothes again. I truly felt I had rejoined the real world. Its been a terrible 3 months and I’m sure there’ll be down times still to come - I haven’t thought too much about that nasty little invasive tumour yet -but I’m savouring the feelings of relief I have tonight. Hope there’s others on line tonight who are also feeling happy and if you’re not, just re read some of my miserable past postings to realise that good times can lie ahead.
Annys x

I’m so pleased for you Annys. It’s such a huge weight off your shoulders. Look after yourself and take things easy - the healing takes a long time.
River xx

Hi Sorry darling you was caught up in your advice needed in such a hot topic, but so glad to here your doing well, just take each day at a time" you will get through this!
Take care, luv Teresa xxx

Annys - how lovely to read your last post - so differnet from just after your op. I’m sure you will be ok - its a bit of a rollercoaster but the worst is over and to know that the cancer is out is great. You have virtually the same results as me except I was grade 3, 5mm invasive but no chemo needed. I’m now 3 months post op and going back to work soon (that’s scary though as I get very tired still). You’ve done well to be in nice clothes - I’m still wearing elasticated waist leggings etc but feel like dressing up more and have treated myself to some new clothes - I had a reduction as well so I’m less self conscious now about my big boobs! I found a great bra in M & S which is slightly padded so hides the one nipple problem - its one of the T Shirt style bra’s - but I waited 2months before getting one - I wore a crop top until then. Take it easy, massage your wounds when they have healed a bit, have lots of treats and enjoy being pampered a bit. Well done. x