OPERATION IS APPROACHING AND I'M TERRIFIED

I’ve been reading the posts and am feeling overwhelmed by everybody’s experiences. One of the forum’s correspondents has advised me to stick reading about the condition I have which is DCIS. A lumpectomy was ruled out because I have small breasts and a mastecomy was ruled in as my only option. No choice. I know I should be glad I’m having a potentially life threatening condition sorted out but I’m not. I’m totally fixated on the fact that I have to have a mastectomy.
My mastectomy operation is in one week’s time on Mon 25th Jan and I’m feeling sick and scared. Ever since my diagnosis I have not registered the cancer side just the mastectomy and although I’m having recon I still feel as if I’m going to be mutilated. I have microcalcifications throughout my right breast but I don’t know how worrying they are as I was firstly told they were low grade but more recently my breast care nurse said they were intermediate to high grade. I haven’t seen my surgeon since he broke the news to me a few weeks ago and I was totally incapable of listening to a word he said at the time. The next time I see him I will be on the operating table. I haven’t questioned the nurse either as I was upset when she visited. It was only afterwards that I remembered what she said. I have to pinch myself to believe this is real as I have no lump, no pain, just a mammogram splattered with white dots and a biopsy result that has sentenced me to surgery.Those of you who have had DCIS and mastectomy ops - how long will the op take and will I get over the emotional trauma?

Hi Annys, I had a mastectomy on the 30th December '09. I was only told on the 23rd Dec that it was going to happen, like you I was shocked and frightened all I could think about was the actual operation and everything else went over my head. I did not have recon I may think about that later, but I think I was in theatre for about 1hr - 30mins. I went in hospital in the morning and had my op in the afternoon (couldn’t believe I had to walk to the operating theatre though) must say everyone was fantastic and put me at ease, it felt I was no sooner put to sleep when I was awake again. I was amazed the day after the op. at how well I felt. I had two drains in and they stayed for 5 days they were a bit uncomfortable but bearable, I was in hospital for 5 days. During the op some samples were taken from my lymph nodes and this left my underarm a bit tender and stiff. I was given excersises to do and I do them daily I am almost 3 weeks post op and I feel better everyday. I have looked at my chest and mourned the loss of one of my 36DD’s and decided to get on with it - Hey I woke up this morning didn’t I -
Everyone is different and we all have our own way of dealing with things, I wish you a speedy recovery both physically and emotionally.

I can’t answer re your op as mine was a lumpectomy and some lymph nodes taken on the 11th Dec…but what I can say from my own experience is the waiting is worse…I waited 5 weeks from diagnosis for surgery, then another 3 weeks for result, and now I’m waiting to see oncologist next week before starting rads…
Please don’t be terrified, we can all try and help with the emotional side. hugsxx

Hi Annys

First of all, it doesn’t matter whether your surgery is one hour or five hours – you’ll wake up just the same. It depends on whether you’re having recon at the same time, and what type. I assume you discussed the possibility of reconstruction?

I understand the lack of registering the cancer – I’ve been the same and had to pinch myself sometimes to remind myself if you know what I mean – I was always focussed on the surgery. I’ve had 2 ops and can honestly say that the recovery has been much better than I expected, especially after my recent Mx op. I wish I’d had an Mx straight off – I had a segmental Mx but the DCIS was more widespread so I needed the full Mx. I had several small tumours which hadn’t shown up on the mammogram or the ultrasound, surgery seems to be the only way to be really sure what’s there. The first thing seen on my mammogram was the calcifications too.

Don’t read too much on this site, tempting though it can be. It takes a while before you get used to the whole thing. There are areas which I don’t read because I’m not affected by them, and they can be frightening, especially in the early days. This is a horrible disease, but remember too that there are lots of ladies out there who’ve had breast surgery and treatment and have recovered and are living happy healty lives – they don’t all post on this site!

I encourage you to go back to the BCN. She will be able to answer your questions. Write a list, and if you can go to see her, take someone with you who can listen too and take notes and then discuss it through with you afterwards. My husband is brilliant at this – I come out of appointments with only a third of what was said. He fills in the gaps for me! You must try to have your questions answered before you go for surgery.

And as Tally has said, everyone on this site will support you, me included.

Thinking of you

River
x

Hi
I agree - you need to go back to your breast cancer nurse and get all your questions answered. Its a good idea to write down all your questions and the answers you are given. It is all very confusing. You will receive a lot of support on this site. The waiting is the worst.
I had a mastectomy last June - for widespread DCIS. I chose not to have recon. I recovered quickly thank goodness.
I wish you all the very best. The op will soon be over and then you will start your recovery.
I wish you all the very best.
Liz

Hi annys

Please feel free to call our helpline where you can talk things through with our specialist nurses or trained helpliners, they are there to offer you support and a listening ear. You may also find the following information helpful, I have put links up here to information about DCIS and also breast surgery:

breastcancercare.org.uk/breast-cancer-breast-health/diagnosis/primary/dcis/

breastcancercare.org.uk/breast-cancer-breast-health/treatment-side-effects/surgery/

The helpline is open weekdays 9-5 and Saturday 9-2 on 0808 800 6000.

Take care
Lucy

Sorry you feeling so scared. I had a double mastectomy without reconstruction as it wasn’t an option for me and I’m 7 months down the line. Yes I would rather have breasts of course but emotionally I’m okay about not having any. I shed quite a few tears both before and after the operation.

There is a lot to come to terms with so it’s not surprising you feel like this. There is the cancer diagnosis and then the whirlwind of tests and treatments.

Once you’re op is out the way you may want to consider some counselling? I had this via the Cancer Counselling Trust and found it really helpful. They offer 9 sessions over the telephone on a weekly basis and ask for a donation. It doesn’t solve all the issues but I found it helped me to come to terms with things more. This is the link if you want to take a look.

cancercounselling.org.uk/

take care
Elinda x

Thanks to everyone who has responded to my post. Feeling very overwhelmed today. I’m due to see my GP tomorrow who is very understanding so I plan to chat to her. Thanks for op details, I’ve not had one before so that is another fear to face. I will also consider the counselling suggested by Elinda. My bcn was keen for me to go on antidepressants but I have resisted this. Counselling might be better. These are all things I’ll consider in the weeks following the op. You’ve all been very kind to respond and I appreciate all your good wishes.You’ve been there and done that and I’m grateful you’re sharing your t-shirts with me! Thanks again.

Annys - I had a mastectomy and reconstruction 11 weeks ago and it is so much better after the operation than before it - I felt like you do now but it is so much easier to cope once you’ve had the op. The wounds aren’t as bad as you think and the results are great. I have ups and downs but talking helps. Hope all goes well for you.

Hi Brook, thanks for the reassurance. I’m so looking forward to life after the op as this waiting is sheer hell.

Annys x

You’re welcome. I had some hand massages the week before, listened to some relaxing music and tried to do some deep breathing - it all really helped. Hope this week goes quickly for you.

Hi Annys,
Exactly one year today I had mastectomy for DCIS widespread and high grade, 4 nodes removed no other option then mx or wait and see well I waited for 3 weeks before going into hospital for op. as I wanted to be o.k. for xmas and that was the worst 3 weeks of my life so felt I made the right decision. I did not have recon. as due to other circumstances at the time needed the quickest recovering option. I went in to hospital at 12.30 down for op at 2.30 and back on ward having a cuppa of tea at 4.30 could have gone home next day but felt another day in hospital would be benificial. had drain in for 3days.
You will need to take things easy and the excersises each week get better. As for the emotional side I feel I have coped quite well with losing my breast but do have days when I feel really p----d off but it could have been a lot worse as many ladies on here bravely go through chem and r/t and still have to have mx.
I wish you well and a speedy recovery .
Maggie.

Hi Annys
I’m having my op on the same day, but mine is lumpectomy and axillary clearance. Have been to see my breast care nurse today for the first time since my diagnosis on new years eve, then straight on to my pre op assessment. I too have never had surgery. I totally understand your fears but I try to think positively. Whatever I’m going to go through it is going to be worth it. I want to be around to see my 2 young sons growing up. xxx

Hi Annys.

I won’t repeat what has been said before, just that I agree with the great advice already given by the other ladies. Please ask as many questions as you like in order to feel you are fully informed.

I had my MX with reconstruction at the end of October, and don’t regret it. It is horrible losing a breast, but my recon (LD flap) has been fine so far. Admittedly it does take a while for the swelling to go down (still not entirely gone) and for the surgery sites to feel normal/comfortable. I am, however, seeing a definite improvement, and feel much happier with it than I did at first. I found it does take a while to get your head around the whole business - diagnosis, surgery, recovery, etc etc.

My heart goes out to you - please try not to worry too much. Brook is right, it is worse beforehand and the waiting is awful.

Sending you love and hugs :slight_smile:

hi,

i also had DCIS high grade, and pagets… I’m only a 34a… So the only option i had is Mastectomy and reconstruction the same time.
I had my op on the 16th October 2009…
I had my lymph nodes done in a seperate operation where they inject a dye into your nipple and select nodes. I found i had plenty recovery from that op. I found the lymph node painful, but it ment i did not have a bunch of nodes removed. They adviced me to do it this way because they needed my cancer surgeon and plastic to be together and it would of ment waiting. At least if there was any cancer my treatment could be arranged from there.
The surgery took place at charing cross… I was in theatre from 9.30 to 6pm … but they did a good job. You will find after the first day they will want you up and mobile. It is not pleasant, but once you have adjusted u’ll find each day gets better. Try to stay positive and you will get through this.

Sarah

Ps i get my nipple in March if my other breast behaves itself.

Hi Annys

I thought long and hard about whether to post: I had mx Autumn 2008 and I’m still not over it. In fact, it gets worse every day. I was told there was no alternative but I really question it now - mx won’t definitely save my life so I question why i had it. My quality of life, sexual confidence and pain from the reconstruction, which is not a realistic or comfortable attempt at re-creating a breast make me deeply regret going through with the op. I was not that unhappy about it at the time because I thought it had to be done and was for the best but it has got worse as time goes on. If I had my time again I would not do it even if does mean that cancer is more likely to recur.

Reading your post I wonder if you are ready for this as it does not sound like you are in immediate danger. Once the breast is gone it is gone forever - a reconstruction is not a breast, it does not feel like a breast even if you are lucky enough to get one that looks like a breast. You need to be able to accept that to be able to live with a recon.

I found BCN’s sweet but not that helpfulor knowledgeable, but if yours is any good talk to her. Don’t be rushed to please people.

Wishing you the best of everything, it’s your body, do what is right for you.

Love

Jane x

I’m another one who has not had a bad experience with my MX and full lymph node clearance. I was in hospital for 2 nights - one pre-op and one after, and then home again. I didn’t have recon though, wasn’t an option for me at the time. I had my drains in for 7 days, but was home and could walk into town and do some shopping with my drains in a bag over my shoulder!! No pain and it took 8 weeks or so to get full movement in my arm back.

When I have my bra and prosthesis on, no-one can tell I am missing a boob (except you have to wear slightly higher tops). My OH isn’t bothered by it, and my scar is healing up really nice and neat.

My mum had recon a few years ago (7 years after her mastectomy) and is really, really glad she had it, so I will be having one when I am through the chemo/rads/herceptin.

I think most women seem to get through all this and come out the other side and get back to some normalilty. Take it all one step at a time, and get as much information as you can. I take a list of questions in with me and they laugh when I get my notepad out and start taking notes!! But it works for me. Ask again, if something hasn’t sunk in, even if you know it was explained before. They don’t mind. Stop them if they seem to rush on to the next topic. They are busy people, but this is YOUR life and no-one is going to take better care of you than you. Take control.

It sounds like talking to someone to get your head around all of this would be helpful, so do call the BCC helpline in the first instance and see if they can help answer some immediate questions.

My BCN knows more (or at least as much!) about most stuff than the oncologist does, (and it was the same with the surgeon) she is a mine of information. They are not all just sweet but unhelpful, some are marvellous. I hope you get a good one.

Take care, but be reassured that it is doable.
xxx

Hi Annys

I like others on this site sometimes find it hard to post/advise to others. It is such a terrible time that you are going through. I would just like to say that if you can can you must try to look forward to good times, because they will come back. Looking back over the years (10 yrs post mx) and I do wonder what if?! but hey I just think maybe we are the lucky ones they found the cancer and we are able to get rid of it, thanks to modern technology etc. Okay we loose a boob (and I did not take this likely!) but sometimes we have no choice… would we all rather die with two boobs or live a longer fulfilled with one boob! I know what i would prefer as I have and still here! After about 1 year had reconstruction and nipple reconstruction, I wouldnt go topless on a beach but with clothes look the same as others. Back to your op Annys you will be fine, I
know you must be very, very scared… but you will come out the other end. If you can have a reconstruction go for it, it sort of makes you feel normal again, I must admit when I first saw myself I felt a bit like Nelson!
Believe me you will feel normal again, but it just takes time! Thinking of you on the 25th.
Love DebsHx

Hi All

I know this is controversial but for some women (eg me) it is definitely better to (possibly) die with two boobs than have mx, and not be able to even look the body you live in. I realise others feel differently and respect that. I do think for some of us the prospect of years feeling the way i do is no prize. Everyone encourages us to have this hateful op because they think it’s a cure and doable. It’s presented as a life for a breast swop. Recon can easily replace the loss we are told - but recon is really an unpredictable, mixed bag. The recon inflicted upon me is painful and ugly. Some people say they get great results but I have only ever seen one that actually looks remotely like a breast. I guess the key point is some women are content with it and happily a loton here do seem genuinely pleased with all types of recons, so perhaps my experience is just unfortunate.

However, I am learning that mx is not a more effective way than WLE to control cancer and many women still die despite mx. NICE guidelines say take the breast off in many circumstances but these women still often have disease progression. Better cosmetic results with recon are not guaranteed.

I know a woman with a similar diagnosis to me who really hated the idea of mx and communicated this to a surgeon who then made every attempt to save the breast rather than take it off, even transferring her to another hospital with more skilled surgeons. When she asked why he had not done this at the start he said “Well, we see whether people can accept it first” - in other words if she had been docile and compliant he would not have put himself out. As one of the sensible, non complaining, stiff upper lip, compliant folk I resent that my blindly following “best advice” really just meant that he thought I valued my body less. And another friend, whose surgeon said “There is no point in me saving your life if it is going to be miserable” indicastes that surgeons may well listen if you let them know how much the prospect distresses you.

Frankly I have never cared about the cancer - at the start I thought it was too insignificant a threat to take seriously. As time goes on i realise that this disease can only be treated and not really cured.

All i know is that I wish i had not let the medics process me and it seems to me that you already feel strongly, so don’t let others make you feel like you are being selfish, vain or trivial in the grand scheme of things - you have to live in that body for the rest of your life. It’s true we get through it - it’s doable and you find courage for the ordeal, maybe like me even minimising it at the time. It’s the long term consequences that you can’t hope to see when you are in the thick of it that are the hard part of cancer treatment. I detest living with the consequences of mx - hair grows back, chemo ends etc and you may be happy with your recon if you proceed.

I am unhappier every day because eventually reality kicked in. I am loathe to advise but am sharing honestly because I think as women we try to encourage by saying positive things, even when we know the truth is different. Be sure you have no other options before you proceed.

Every best wish to you and everyone

Love
Jane x

Jane
I know we have ‘discussed’ before, but I do worry about your posts and wondered if you are having treatment for the depression you are experiencing.

Your points regarding questionning and pushing for alternatives are very valid - we do all tend to go along with what we are told to have, and do trust in the doctors, maybe too much.

But it does worry me - for your sake and for the sake of vulnerable people who post or read here - when you say that you would rather have died than go through your MX & chemo. I would hazard a guess that your experience is in the minority (although by no means a tiny minority, IFKWIM).

At the end of the day, there are no guarantees about any of the treatments we are offered or given. They can go well or they can be hard, they can give us more tim, or they might not work. There are percentages and likelihoods and some of us will fall into the % where stuff did not work and did not go right. Its all about how willing you are to take the chances that it might work and might go well. Those percentages are generally higher than the chances it might not, so IMO, it is worth the chance. If it doesn’t though, sadly, you have to find ways to come to terms with what hasn’t quite gone to plan…

Take care Jane
Flora xx