Hi all, I’ve been reading a few posts and am sorry so many of you are having to go through so much treatment. I suppose I am one of the lucky ones, as I only had DCIS (early stage non-invasive cancer). I first went to my breast care unit in October last year concerned about a painful lump on my right breast. There was no evidence of a problem there, but they were concerned with a lump and a lot of calcification in my left breast. After having a needle biopsy and then a wide incision biopsy on my left breast, I was diagnosed with DCIS in February this year. I was given the option of having the areas removed followed by radiotherapy or to have a mastectomy - my consultant advised the latter. In March I had a bilateral mastectomy, followed 6 weeks later by an operation to insert chest expanders - that was nearly 4 weeks ago. I will start to have these ‘inflated’ in June. I wondered if there is anyone else who has had a similar experience. As I said, I know I am lucky to not have to go through any chemotherapy or radiotherapy, but feel it would be helpful to speak to others who have had a mastectomy. I wish you all well. Samm xx
Hi Samm,
I too know that I am one of the lucky ones - so to speak, but at times I find this journey quite difficult. I had turned 50 and to celebrate this major milestone received the invite for my first mammogram. I toodled off to the screening place and thought nothing more about it. I was shocked and stunned to get the recall but still didn’t think to much about it all until my appointment. I had further scans and then was shown the extensive micro-calcifications all over my left breast. When they discussed the biopsy’s, 5 in all and what they could mean I was terrified. I couldn’t feel anything so it couldn’t possibly be the big C could it? Unfortunately, it was reported as DCIS and following the visit to the breast surgeon was informed that it was so extensive I could only have a mastectomy so how did I feel abou that? !!! I decided to a have immediate recon and plumped for a DIEP as the other options weren’t able to be used for me. The pathology showed it all to be non invasive and so I do not need chemo, rads or even tamoxifen how lucky am I? however having had surgery to good boob and now having nipple recon on the 1st June I have at times thought myself not quite so lucky, why (and yes I know the answer) if it is all non invasive did I have to have such radical surgery? and if one more person tells me how lucky I am I think I might lose it and punch their lights out!!!
I now look in the mirror daily whilst creaming all the scars and yes I have a very long one on my tummy and wonder if life will ever get back to normal - whatever that is.
Great to hear from others with DCIS,
Take care,
Maggie (Marjay)
Hi Maggie, thanks for your reply, it’s good to know I’m not alone. Well, I appear to be having one of those ‘not feeling so lucky’ days today and am wondering why the hell I’ve had my boobs removed! With the weather getting warmer and the clothes we wear getting less, I am having a bit of a nightmare. The ‘softies’ I have been given to insert in my bras are ridiculous and couldn’t be any more unflattering - the shape, the colour, the size - everything about them is horrible! I am still too sore to wear a bra, so I have been pinning them to a vest with hidden support, although I find this uncomfortable too. If I don’t wear them I look like a freak and if I do wear them I feel like a freak. I am 37 years old, a widow (my partner died 5 years ago), and now have no boobs! I did this to stop my kids ending up orphans, but feel that it’s stopping me from living a normal life now. Rant over, I feel a bit selfish now for anyone living with cancer, I’m sorry, at least I’ve got rid of mine!
Hi Samm and Maggie
I hope I can lift your spirits… I was diagnosed July09 with DCIS and some invasive cancer in my left breast, surgery didn’t get clear margins and a mastectomy was recommended. I decided to have bi-lateral mx and recon, which was done in December09, with expandable implants.
Now 6 months on and they are fine. I’m still aware of them, but not all the time. The scars have faded brilliantly and I’m waiting to have nipple recon and to have the expander ports removed.
I’m sure that once you’ve had your expanders inflated things will begin to feel better, Samm. Will they replace them with silicon implants? Or are you having another type of recon. It’s still early days and it takes time to get used to the new you - and there’s still a way to go.
You’ve eliminated risk - I felt that was very important. And having the bi-lateral has the advantage of them both being the same - though I realise this may not be the case for everyone.
Hope you feel more comfortable soon.
River
Hi
All your stories seem eerily like my own. Like Maggie I had just turned 50 (with lots of plans and certainly no breast symptoms) and was called to my first mammogram. Surprise surprise when I was recalled, biopsied, and diagnosed with IDC, and then later on with DCIS. Now, 8 months on from that mammogram here I am with no breasts (I don’t mind the softies too much). Yes it is hard to work out how I got from there to here, when I thought I was perfectly well, and the only thing that has made me ill, tired and anxious has been the treatment. It takes time for the realisation of what one has faced to sink in, and it is easy (for me) to slip into wondering what the h*ll happened. I am very grateful to the NHS screening programme for picking up something early which otherwise would have ‘hit’ me later, and needed more extensive treatment (I didn’t have rads or chemo). So the way I try to look at it is to think I had a lucky escape and my breast free body is the price I had to pay. Don’t know if this helps. Sorry if it doesn’t!
Warm wishes to you
Maggy
Thanks River and Meggy for your input, it’ s surprising how relieved it makes me feel to know there are others who know how it feels.
River - your post has definately made me feel better. I know I just need to hang on in there and things will get better, it’s just that some days are easier than others and this time of year is not a very good time for me anyway. Answering your question, I will be having the expanders replaced by silicone implants eventually. My consultant said probably December time, although I think I may ask him to wait till after Christmas - or I’ll have to be seriously organised and get the kids pressies mega early!
Meggy - I’m pleased for you that you’re happy with your softies. Will you be getting prothetic(is that how you sell it) ones or are you having reconstruction of any kind?
I know we’ve all had this done to save ourselves and it was the ‘right’ decision to make, I guess I just have to get used to not looking like ‘me’ anymore. I still have a lot of swelling around my sides - was this the case for anyone else and does it go away? I am also still very sore over my ribs - I think that may be from when the drains were removed after my 2nd op. Also at what point do you go back to work as I still feel that I’m nowhere near ready - some days I am so tired and it’s a relief to know I can rest sometimes after I’ve taken the kids to school. Anyway enough waffling. hugs to all xx
Hi Sammi
I will be getting some prostheses and am going for fitting soon - apparently I should have had them by now but there was an oversight! I am not going for reconstruction as I can’t bear the thought of more operations. I did have a lot of swelling on each side (& seromas) and that has turned into quite hard lumps of what I assume is scar tissue each side. It doesn’t hurt and is not really uncomfortable - its just a rather surpsingly large lumpy ridge. My scars towards the centre of my chest are much flatter & neater. I assume that my lumps are here to stay since I think that’s what happens with scar tissue - but maybe I’m wrong. I’m just assuming that they are part of my new shape - I trust I’ll learn to love it!! I’ve found that work wise I’m doing a lot of what I need to. I work from home & also live on a farm so I’m doing most stuff although still can’t manage all the really heavy shifting (bales, 25kg feed bags). Its good if you can work your way into it all gradually - I think mentally its good to distract oneself with work if it isn’t too physically tiring. Being able to rest when you need it is good too.
Hope it goes well
Cheers
Maggyx
Hi Sammi,
I had my mx in February 2010 after two previous lumpectomies because DCIS was extensive and a higher grade than originally dx. Very very upset beforehand but was extremely calm after op and in fact ever since…
I’ve really looked after my wounds rather than felt I’ve lost my breast, if you can understand that???
But with initial problems from another complaint I couldn’t wear a bra, so wearing my prosthesis and comfortable bra is very recent for me and it is just instantly forgettable!!!
Can’t believe it after feeling so emotional beforehand.
The right bra meant everything to me so confidence was regained almost immediately… however I did make some costly mistakes!!!
(There is a thread on being single breasted with some good suggestions for what to wear…)
Not sure about the summer heat yet, but my thoughts are not to have a reconstruction because I am so even and symmetrical.
However I have plenty of time to rethink this decision and at present I am delighted not to have to go into hospital for another stay.
I am small breasted so maybe this is helpful to achieve a more level look. Not sure what others think with larger breasts???!!
Good luck with your journey. I hope it is a calm one.
Yes,like you, I do feel lucky to not endure chemo.
Best wishes Welsh girl x
Hi Ladies,
Interesting to read your comments. I have found it quite difficult coping with the practical issues of my left sided mx and recon. This left me with quite a lopsided boob and I welcomed the PS offer to have the non affected breast reduced and lifted to match recon. I suffered with pain and poor healing wounds post op to now. It is now 6 weeks post reduction and the wounds are only just starting to heal. I am due to have nipple recon tomorrow and hope that they will carry it out due to the probs already experienced. I have to say that I feel this has been a prob to me as I am quite large boobed (38FF pre surgery) and did have quite severe post mastectomy pain syndrome as well. The prothesis to even me up did work well and as already said in the right bra it increased my self confidence no end however now having my reduction even with the probs gives me a real lift - apologies for the pun as no one would ever know to look at me the surgery that I have gone through.
I still have a little niggle in the back of my mind regarding the good breast but will have to wait to Sept when I have my 1st mammo post diagnosis. They never offered me a bilateral mx and I have to say I have wondered if that would have been a good idea but will just have to wait and see.
Thanks for all the support received on this site.
Marjay
Hi all, thanks for your comments and support. It has now been 11 weeks since I had my boobs removed. In 2 weeks time I shall finally start having my chest expanders filled, so hopefully will start to feel better about it all soon, although I have no idea what I will look like! Welsh girl, like you, I was small chested anyway, so did not see it as a huge thing to cope with, but I think I have had to go too long without anything to fill my clothes (and my confidence)!. Marjay, I noticed you said you weren’t offered a bilateral mx. I wasn’t offered it, but asked for it as I thought it would eliminate any further worries about the sore lumps I had originally gone for testing on and also I thought it would give a ‘blank canvas’ for reconstruction, rather than having to match them up. Having said that, I do feel like my body looks really ugly and I can’t imagine ever looking normal (or sexy) again! Only time will tell I suppose! Also, I think I will miss having proper nipples!
Just updating on this. I had my 1st lot of saline put in my tissue expanders last Friday, 100ml in each so not much different to being empty at the moment. It wasn’t painful but I was very emotional at this appointment(I’ve managed to keep it together at previous appointments with my consultant). I’ve been very down for couple of weeks and only really been getting up and dressed cos have to take kids to school. I’m already on antidepressants but don’t seem to be helping anymore. Also my left arm has seized up and is painful as cannot straighten it or lift it up, luckily I was referred to physio last wk and I had 1st appt with them today.
Sorry to be moaning, how is everyone else doing? Is there anyone going through similar things?
Hi Sammidiz,
Sorry to hear that you have been feeling down, so have I, maybe it is the time of the year and nothing to do with what we have been through! I am now 8 weeks post reduction and uplift and am now expecting it to match with my recon but I don’t feel it is a particularly good match although the plastics team have said that it is still quite swollen and to wait at least another 4 weeks before we can really pass judgement. Unfortunately I am not a very patient patient and want the results NOW and not in 4 weeks time. I have also had my nipple recon and dressings came off yesterday and it does look good although a bit on the big side now waiting for the appropriate shrinkage! I find out in 4 weeks time when they will do the tattoo - can’t wait for that final bit.
My major problem appears to be my ongoing back problem and I have been to see a neuro surgeon who has requested mri scans to exclude secondary’s and to see what is going on. She did mention things like a spinal fusion, naturally I don’t want any more surgery at the present time so will just have to wait and see although it is a bit of a worry and again it is that awful waiting game which we all have to go through.
Been into work today to discuss return, looks like I will be going in on the 12th July, hoping for a phased return but knowing my boss, it will be for 1 week only!!!
Hope the anti d’s start to work and if you are no better, I suggest you go back to your GP as there are other ones on the market or maybe a course of counselling might help. Do hope you will soon be feeling better soon.
Take care,
Marjay xxx
Hi Samm,
Like you I consider myself to be one of the lucky ones and I really feel for all you other ladies that have to go for radiotherapy and chemo. I was diagnosed in March this year with DCIS and told that I had to have a left mastectomy.There was no other option for me. I had 2 areas or DCIS that had started to join together.After my operation in April I was told that there was a tiny amount of invasive cancer that had also started to develop. I was grade 2 and intermediate. I was told that the onlt thing I needed was tamoxifen. I have been attending a physio group at the Hospital but all the ladies I have met need radiotherapy and some need chemo. I am worried about it coming back.I am still have problems with arm/shoulder range of movement.I don’t know when to go back to work as I have been off for 9weeks now and I think i should be thinking about getting back.
take care
Trixy
Hi Samm
I had left mx and recon on march 19th. Im 41. The reconstruction became infected and i had to have it removed 3 weeks (and 2 hospital stays) later. This really upset me and i dont feel that i have come back from that. I too am on antidepressants but i feel that my body has been mutilated and cant look at myself in the mirror. I used to do modelling but the self confidence has been sucked out of me completely! The PS has said that he will put the implant back in when everything has settled down. We had to cancel our wedding because of the dx and have rebooked it for Nov 01 so really hoping i resemble a “normal” woman by then!
I have requested some counselling and start my first session on friday so fingers crossed this helps with the body image.
I have started a rehab programme at the gym to keep back and shoulder strong as im in the police force and cant afford to have any stiffness and weakness…but trying to get the motivation to get out of bed some mornings is hard enough, let alone the gym!!!
deed
x
Hi Ladies,
Well just as I thought things were getting slowly better I have been knocked back again. As I thought, my boss phoned me yesterday and agreed to my return on the 12th July on a phased return - yipee - but it will be for only 1 week as I had predicted and she would like me to go back to my full time hours the next week!!! and then tonight with my husband driving me home, some woman drove straight into my side of the car and has jolted my back and it has gone into spasm again, so much so that I am back on my strong painkillers again. I just love feeling like my head is full of cotton wool! and I am still waiting for my scan (mri of back to exclude secondaries) date as well, I hate all this waiting!
On the up side, my reduction is starting to look better and I am really pleased with my new nipple so I do consider myself as progressing but do still worry about recurrence in the good boob as not on any meds but will have to wait until Sept for my first post dx mammo.
Hope you are all having a better time,
Marjay
Hi all
I’ve just spent ages typing, replying to you all, and have somehow ‘lost’ it all!! Think it must be too late at night now (or morning - 01.15!! I will try again when my fingers, eyes and brain are functioning better.
Take care, Samm xx