I have just had the results from my lumpectomy a week and a half ago and been told I now need a full mastectomy. there were 2 lumps - 3cm & 1 cm but an area of DCIS making a total so far of 7cm. I am in shock as this was never on the cards and the first question I asked was am I going to loose my breast & the surgeon said NO so although I realise how unpredictable this can be I am still VERY shocked & feel like I’m just starting all over again. I also have 3 nodes affected & it is hormone negative grade 3 so all in all I know this is a bad result and I’m basically very scared. I am 44 with a 4 year old daughter & so frightened I will not live to see her grow up.
On the less important but still relevant side I have very large breasts (40F) and so am horrified at what this will look like & the limitations for reconstruction. my surgeon waits until treatment is over before doing recon so that everything can be treated more effectively which is fine as the most important thing right now is that treatment is as effective as possible but assuming it hasn’t spread further i.e secondary & I wouldn’t want to waste my time recovering from ops I would like to get recon done later as at my age I feel I don’t want to live with just 1 breast for however long!.
they mentioned 2 options - an LD flap with implant but that would need a later reduction on the other side to even them up as they can’t go above a D cup or something involving my abdomen which they can make a larger one with??
PLEASE can anyone out there just help me with this - I know I am not alone but right now feel very lonely. I have a wonderful husband and we can get through this together BUT hearing from others who have been through stuff would really help me
Just wanted to send you a, you are not alone hug. I remember my consultant almost guaranteeing me a hormone positive, node negative result and it didn’t turn out that way. It is very hard to start again and come to terms with the diagnosis that you have got. My children are 3 and 5 and for a long time I found it v hard to look at them without being upset. But they are strong and have coped really well with my ops and chemo.
I didn’t have a mx, but I hope someone comes along soon to give you some advice. Or phone the helpline. You have been given a lot of information and sometimes it is good just to talk it through.
As midge says, you are not alone. It is a lot to take in and you need to take it one step at a time otherwise it is overwhelming. I am four years down the line, having had mastectomy, chemo, and 12 months ago reconstruction.
With the support of your family and friends and team at the hospital you will get through this.
This site is wonderful for support, and I’m sure there will be others coming along to talk to you.
Best wishes,
Rosie x
Hi Millykins
Sorry to hear that your results were not what you wanted. Back at the end of January this year I was in your position having just had a lumpectomy. I was then told no clear margins, extensive dcis and additional tumours found. I had mx a week later and since then have had chemo and rads. My surgeon too wouldnt do immediate recon as it was on the cards I would need rads but I knew from the start I would want this at a later date and I am waiting for an appointment to discuss this now. At the start it all seems so much to take in but as others have said take one step at a time. There is a light at the end if the tunnel.I have found the support of this site invaluable. Whereabouts in the country are you? Some areas seem to have very good support groups that you may be able to join, unfortunately where I am there is nothing around. Best wishes. x
I had/am having a very similar story to you. Initially told a lumpectomy and rads would be what was needed, but during the lumpectomy, they found additional tunour and DCIs plus 2 out 4 infected nodes…
Came as the worst shock.
Worse than the intial diagnosis, as I had been so POSITIVE. Think I actually hate that word now…
So then was given the choice chemo or mascetomy (they recommended chemo first, so that I could consider my reconstruction options) but was advised to go for the chemo. So that is what I did, am now 2/3 of the way through. Trouble is I have been given no tools to consider reconstruction “options” and have no real idea what this might entail for me…
Anyway Im not sure how this is helping you, execpt to say. The shock is awful, but you will get over it…some how, and Lord knows how, you adjust. Focus on getting through the treatments one by one, and take up every offer of help you recieve.
Here is a good place to cme for support, a place where you can voice your worst fears, but one word of caution: be carefual where you look on this sight. There’s a lot of sadness here. Stick to threads you have joined, and dont be tempted in the dark hours of the night to wander into the worst case scenario threads.
Hi Tree. Saw your comment about reconstruction. Apart from all the leaflets, online advice etc you can find about recons one book I have found really useful is “breast reconstruction your choice” by Dick Rainsbury and Virginia Straker. Lots of facts, photos and first hand experiences. You can get it on Amazon. Px
Hallo Millykins
I am in the same position as you. I got the results of my lumpectomy on Tuesday and they were not what I had hoped for. I had felt so good after the lumpectomy and was pleased with the look of the breast. I really thought that I was OK and all I had to go through was three weeks of rads.
I am booked on for a mastectomy on 1st November.
Like you, I have large breasts (44E)and the prospect of losing a breast seems horrififc to me. All the positive feeling have disappeared but I’m hoping that they will return in due course.
Reconstruction was mentioned briefly but my instinct is to just get this cancer out no matter what it takes.
The last time in my life that I felt like this was after my mother died so it’s akin to grief. I feel so out of control of things and it’s like a continuing nightmare that could get even worse.
You are not alone. I feel sorry for my husband who says he too feels helpless because there is nothing he can do.
I am finding te waiting until the op very hard. I want rid of breast cancer but feel devasted that I will lose my left breast. I am worried about both my reaction to what it will look like. My husband says he loves me and not my breasts and the main thing is that I will be alive.
I think I know exactly what you are going through.
Really sorry to read your news + about your upset. Sadly it is quite common for ladies to need further surgery following a lumpectomy although this will be little comfort to you I know. I opted for a mastectomy from the start so never had your experience but I do relate to the shock of a hormone negative diagnosis. I had recently had lots of fertility treatments + a pregnancy (I’m 32 with a 17mth old btw with no family history) so everyone was convinced it would be hormone related. To say we were shocked to hear I was triple negative is an understatement. However there are lots of triple neg ladies on here who are doing great so try to stay positive. Just take whatever treatment they offer- chemo, rads etc. and you will get there.
All the best
tina x
Thanks so much to all of you for taking the time to post back to me - It has helped me so much. In particular the fact that others had felt so positive Like I had and then to face this as you say is almost worse than the intial diagosis so I feel like I’m starting all over again but in a worse place. I just went to the pharmacist over the road to check if I can take Nytol with pain killers & she said yes (after I blubbed all over her in her little room) just being able to sleep will help me as I’m at my worst & lowest when I don’t sleep (as we all are)
I am just beginning to accept that I have to face this whatever - I cannot escape it, much as I want to right now, and I am hoping that once the surgery is done I may go back to feeling more positive towards treatments and feel I am moving in the right direction. As some of you have said waiting is the hardest thing.
I know I am not alone. I also have the most wonderful husband who reassures me all the time how much he loves me and that we CAN get through this but at times we are both very scared about the future. I hope I will also be able to help others here when I can & when they need it too.
I’ve only just seen this thread, and I was amazed at how similar it sounded to a friend of mine! We met on the chemo ward, as her lumpectomy had almost the same exact results as yours. She was having her chemo before going back for an MX. That was over two years ago.
She is doing really well, and looks great! She had immediate recon and was (I think!) an EE cup, so she later had a reduction on the other side. I was surprised that they did the recon immediately since she went on the have radiotherapy. I don’t know whether that was personal preference of the surgeon? Maybe you might want to ask about what all the options are. Obviously it all depends on your individual situation. My friend didn’t have an LD flap, but an expander, and chose not to have nipple recon. The other thing to consider is that the MX side will need some time to “settle” so that the surgeon can get a better match. In my friend’s case it was many months after treatment had finished, and the result looks really very good. The other thing was that the results after the MX were great: the chemo had done its job, there was no trace of the cancer!
You’ve had some great advice already from ladies who have far more knowledge than I on this subject. I just hope that hearing about someone who has come through it all might help some too. I think that we all have our low points going through treatment, it is just so hard. I hope things go well for you from here on out.
I know how devasted you are as I went through it last year. Had a lumpectomy on what I had been told was a benign lump, and opted for that just because my car seatbelt used to rub on it. After the surgery was told by the resident we shouldnt need to see you again, you’ve got disposable stitches. Two weeks later I’m back in clinic being told you’ve got cancer but its the best type you can have if your going to have any (like thats reassurring). So they sent me off for WLE and full node clearance and the expectation of having rads.
Got those results, didnt get the clearance needed, its showing as a higher grade and your pre-cancerous in two of the nodes. My surgeon was happy to try another WLE, that didnt clear either and so had mx. When they got the results, they found grade 3 cancer. Since then I relatively sailed through chemo, had rough time with the rads and the tamoxifen s/e seem to be dropping off.
I just want to say to those of you at the start of this, is yes its hard and in a lot of respects what you will do is grieve for the person you were and for your former body image. But like grief it will get easier and will hurt less as time goes on, and you will come out of this and probably looking back will be amazed at how strong you’ve been.
My fantastic OH is reading over my shoulder and has said to say, don’t hide from your partners either physically or emotionally, be open with each other. He would have hated it if I felt I couldnt let him see me after and says although of course wishes it hadnt had to happen, but would sooner this then have to lose me to this disease (luv him!)
So take care all of you, let other people help where possible and be kind to yourselves
Thanks Alx
Your comment about partners is so true - I wish there was more support for partners out there as there seems so much for us but in reality they are going through this just as much as we are. In some ways their fears may be worse particularly for those of us with younger children as there’s the worry of the possibility of bringing up children by themselves.
Does anyone know of any support for partners or are they able to come along to ordinarly local support meetings as well - not sure what is OK??
Macmillan have lots of services available, through them I got support for partners, children and financial advice. They also referred me to the local day centre for complimentary therapies. It was my gp who initially referred me to Macmillan and they have been very helpful. Dx
Hi
Just to say I am feeling much more positive than I was - Just such a shock. I wish they had just told me this was however small a possibility at the start rather than saying a definite NO I wouldn’t need a mastectomy. but there we are I do and that’s it.
Have been arranging lots of things in preparation as I have the 2 week wait I am making the most of it now - catching up with friends - getting my hair cut, eyebrows shaped & have booked for a wig fitting so I don’t have to do any of that after the next op in case I take longer to recover.
CAn you advise - when I had the lumpectomy I had node clearance too and my arm recovery from that seems to be going very well. quite strong and reasonable movement - just soreness which is being helped by aloe vera, tea tree, arnica gel from H&B. Am I likely to be MORE debilitated by the mastectomy alone or is it the node clearance that is the worst physically to get over as most people seem to be having most problems with their arms but not sure if that’s the mastectomy side or the nodes? has anyone else had this done in this way who might be able to advise how long it will take to get over just the mastectomy???
HI there,
I just wanted to let you know about my experience of the two operations -my first op was lumpectomy and node clearance to level 2,with two drains post-op, then I was very shocked to discover I was to have a mastectomy with one drain post op. I personally found the first op was harder to recover from physically - the drain that stayed in for a few days was sore and my arm movement wan’t great for some weeks, altho did lots of exercies. I had no pain with second op and the drain came out so quick it wasn’t an issue. because they didn’t go near the lymph nodes again that area just continued to get better.
However don’t underestimate the impact of having a second anesthetic so soon and also the big emotional impact. I said a proper good bye to my breast and clevage, but it took me a while getting used to my new body and I did cry for about two weeks quite frequently. But better out than in I thought!
very best of luck, Nicola
Thanks that’s really helpful and what I hoped to hear - yes the emotional recovery will take longer and I cannot predict how I will be - no one can but if the physical is slightly easier that might help.
I was angry at having to wait another 2 weeks but in some ways now I feel it is giving me time to come to terms a bit with what is to come. I have looked at some pics to help & am holding on to the idea that this way the cancer is gone. My husband is actually happier that they are taking the whole breast as he has family experience & feels it is the safest thing to do & for me that really is what matters. My breast is still very swollen & bruised & sore so in a way it doesn’t feel like it’s mine anymore anyway which is also making it easier to say goodbye. I will miss my lovely cleavage and was never ashamed of my large boobs BUT slowly but surely I am adapting to all these changes as they happen - what else can you do other than howl in the night like a lost soul. I utterly utterly refuse to let this awful disease ruin my life - It will never be the same but I and my family will get used to a new way of life from now on. Less control, less obsession, more time spent enjoying the little things that we took forgranted before
arm recovered well after lumpectomy/lymph nodes, virtually full recovery of movement before mastectomy. Some loss after this operation BUT recovery has been much slower. I had to have radiotherapy and it was touch and go as to whether or not this would be delayed. I did have additional physiotherapy from GP practise, one year on I am still doing exercises, progress has been slow but I am getting there.
HAve just returned home after my mastectomy. Had some drama as collapsed after the op with low BP and needed transfusions. am home now & looked at it face on for the first time today (had looked down on it but not in the mirror) I know they have done a good job as there’s still a bit of fat there like a very small flattish boob (albeit with a large scar & no nipple) but not as absolutely fleshless as I had been led to believe, BUT I am really really struggling with it all emotionally & with how completely lop sided I am. I had large 40F boobs so looking at the 2 together it just looks awful and is really messing with my head. I am relieved that they have taken the cancer away but just feel so sad that my body has been mutilated.
I know it’s very early days & am sure my head will improve but am just taking it all out on my poor husband & biting his head off in a way I didn’t before. I think it’s that I feel he just can NEVER understand how I feel about it & he’s being so supportive & all “I still love you” & I just hate myself.
sorry to ramble - just feeling very sorry for myself today
We all understand and you need to just go with the feelings, even when they are scary and angry. It might be an idea to ask your OH to go out for an hour or two and you stay home and hit pillows, or scream or cry in privacy so you don’t have the worry of being sweet all the time and pretending it’s okay, or being worried that you are being horrible to him.
I can empathise with the feeling mutilated and it is really hard to accept the loss. Just don’t be hard on yourself and I know we are all sending you our love and strength.