i was originally diagnosed with invasive cancer in the left breast and DCIS in the right back in April. I had 1 WLE to the left which was succesful in May and although they also carried out a WLE on the right did not get it all. I had an MRI in June which showed nothing else and then a second WLE in July could not get clear margins and I had a third WLE in 3 weeks ago.
I have just found out that they still have not got clear margins and they have already removed 4 cm of DCIS (which did not show up on mammogram or MRI) I have been told that I need a right sided mastectomy with immediate reconstruction! Due to the invasive cancer (which was lobular and ductal) on the left they are recommending bilateral mastectomy.
This has hit me really hard I can’t really talk about it without crying. I have to go back in 10 days to tell them which reconstruction option I prefer DIEP flap or implants. I am normally an outgoing person who loves to be around people but since this bombshell has been dropped I don’t want to talk to anyone or go out of the house. My husband works away and had to leave on the day we were told the news and is not back until tomorrow! This has made it even harder to deal with. I feel completely lost!!
Hi Roxygirl,
Before anything else, I am sending a BIG HUG.
You have really been through it one way and another, and what started off as fairly straightforward has mushroomed into something huge, so wonder you feel all at sea (sorry there are too many metaphors there, but I’m sure you know what I mean).
My experience was nothing like your, so I can’t imagine how it is for you, but I can reassure you that you will get through. Just now it’s too big isn’t it? So try just taking baby steps, one day at a time. Have you had time to look at the leaflets about reconstruction and/or to look at photos? This might help you with decision making. Also, you don’t have to immediate reconstruction if you prefer to wait - I did and am glad I did, but it isn’t for everyone.
Be very gentle with yourself, make sure you have at least one treat planned every day until your decision making day.
You can do this. You will do this. But it is OK to be scared, wobbly, whatever else along the way.
Hi Roxygirl
I’m sorry to read you’re having such a tough time at the moment. As well as the support you are receiving here it might help to talk things through with a memeber of staff on the BCC helpline. Here you can share your feelings and concerns with someone who will offer you a ‘listening ear’ as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Hi Roxygirl, i just popped over from the “maisies” and found your post. Like the others, my experience is not the same as yours but I just wanted you to know that i’m rooting for you, sending you big virtual hugs and i think you are coping better than you think if you can talk about it at all. Just take one hour, one thing, one day at a time. It really does help all of us to talk to others who have been where we are, thats why we’re all on this forum. None of us should be here really, we’ve done nothing to deserve all this, but as we’ve been told, we’re like teabags, we don’t know how strong we are till we get into hot water. Hope you get the support you need and deserve from your husband today. Please keep posting xxx
Hi Revcat and Rollercoaster
Thanks for your replies and the virtual hugs. I am normally a strong person but I woke up again this morning in tears! I seem to have had a permanent headache since they told me last Thursday. I have had a week to digest the news and still can’t seem to get a grip of myself. I am sure it has been harder to deal with as every time I saw the consultant he seemed to think the DCIS on the right was no problem and even said prior to the second WLE that once that was over I could consider myself 'cured ’ on the right side. I think I will be reminding him of that next Thursday when I go to see him to discuss my decision.
My worry has also been that during the four months since the invasive cancer was removed from the left side I have had no further treatment to that side such as radiotherapy and haven’t been started on tamoxifen etc. I was told I had to wait until all the surgery was completed before moving onto the next stage.
I have tried to be strong during this rollercoaster of a ride, and I know that there are lots of women in much worse positions than I am right now but this has really floored me and I didn’t think it would.
I am going to ring the breast care nurse at the hospital today(if I can get some privacy as I have four children at home aged 21, 18,16 and 12) to see if I can go in and talk to her, she wasn’t there last week nor the consultant as they were all away on holiday. I think i’m also finding it hard as don’t want the kids to see me in floods of tears all the time!!!
Thanks for your understanding.
Sharon
Sorry forgot to thank jojo too. Thanks for all your support
Sharon
Hi Roxygirl - I’m gutted reading your post and we have some similarity in terms of the situation we find ourselves in. Sending you a big cuddle from Scotland to wherever you may be. Last week i was dx with DCIS and have been advised to have another MX. In January 2010 i was dx with Invasive Ductal Cancer and had an MX, 4 rounds of chemo and have been on tamoxifen for 3 yrs - to say i’m gutted with another dx is an understatement. I have smal breasts and went for the expander implant route - didn’t really have much of a choice but i opted for the least invasive of all the options. I detest being in hospital and was really freaked at the prospect of a nine hr op and then a big stay in hospital - as it turned out i was still kept in for 5 days with the mx and expander implant. Its such a personal decision and you will get there with it… but i know right now your world has collapsed. It does get easier i promise, and yes as others have said you need to cry.
Please keep posting and i promise i’ll try to be as much help as i possible can. I’m still waiting for a date for the MX, likely to be mid to late sept, we can keep each other company and be frightenend together.x L.
I’m going in for my operation next week… Happy to talk to you… Big hug and take care
Hi Roxygirl, Goodness, I really feel for you. I only had half of what you are going through and it was bad enough. I had high grade DCIS last year. A WLE followed by another to get clear margins and then radiotherapy. I was told I was clear and then in June this year at my first check up they found more DCIS in the same place. I too went totally to pieces. So much so my blood pressure rocketed and I had to go on medication for it. Waiting for the doctors to tell me what I already knew, that I would have to have a mastectomy, was the worst week of my life. In a way though, expecting it made me better prepared. When I spoke to the doctors (my surgeon came in to speak to me about my options at that time too) I already had a list of questions written down. I knew I wanted immediate reconstruction, my only real option at the hospital I attend was an LD flap with an implant. Because of the previous radiotherapy an expander wasn’t recommended. I am now 7 weeks post op and very happy with the result, still swollen but getting there. I thought I was coping well until a couple of days ago when I just cried and cried. Sometimes the reality of what has happened and why it has happened is overwhelming. Most of the time though you could almost forget what you have been through. Make sure when you have your appointment you write down your questions. However silly they may appear its better to ask everything and your BCN is there to answer you. Having reconstruction is a big operation but I have recovered a lot quicker than I thought I would. Obviously I still have months before everything has settled down properly but emotionally I feel great ( apart from last weeks blip) and with clothes on no-one can tell. The very best of luck to you, and to you Lynvee, I hope everything works out for you both. Helen x
Hi Sharon, good luck for tomorrow. I’m sure you will make the right decision And I’m sure when you have made it you will feel a lot better, some of the uncertainty will have gone. Let us know how you get on. Helen x
Hi roxygirl .I’m havin a diep next week .after 2wle,s which didn’t get clear margins as dcis is still in there.been reading your post ,my breast is like yours a significant difference in size after the 2wles and my surgeonrecomended mx .I didn’t know they could perform 3wle never mind a 4th.you are in a dilemma .if you don’t want a 4th tell them you want it off,after all you have been getting used to the idea and contemplating it for 2weeks.take no notice it’s your body and what you want for the rest of your life.don’t worry about how long surgery is you will be asleep and it will be over.I chose diep because it seemed most natural ,and I wanted a boob that ages with me ,that grows with me,that shrinks when I loose weight and most of all would feel like the other .yes the recovery is longer and I will be off work longer but it’s worth it and also a free tummy tuck thrown in.all surgery is a risk but it’s a risk worth taking .implants wernt an option for me as I wanted most natural .,it’s your choice .I’ve sent you a private message .good luck with your decision Amanda x
Hi Roxygirl
Sorry to hear your story, sending hugs…
I had a bi lateral mastectomy last Nov and also had days when I wasn’t holding up too well. I think this is quite a normal response to our lives being tested in this way, so many mixed emotions.
After Surgery I had a succession of other challenging events on top of dealing with surgery and cancer and eventually could not stop crying either. I am also a strong and cheerful person normally. My GP prescribed Serialize ( a serotonin re up taker ) I had never taken anti depressants in my life so was reluctant. However they were invaluable in helping me cope. It may be worth chatting with your GP for advice.
I hope you find a peaceful place within yourself very very soon. Every time I used to feel anxious or too many thoughts whirling around I would try and watch my breath breathing in deeply then controlling my out breath again breathing slowly… It really helped to calm me. Every time my mind wondered I would watch my breath. I had never meditated before as I could never get myself to put the time aside. This was different as I could do it where ever I was.
Sending lots of healing calmness…Everything will be alright.
CB
Hi Roxygirl
should of written Sertaline
:smileyhappy:
Hi Sharon
I am astounded. I was told when I had my second WLE that there wouldn’t be a third if they didn’t get clear margins, it would be a mastectomy. I didn’t know they could do 4! If it was me I would tell them I wanted a mastectomy. What if they do a 4th WLE and still don’t get clear margins? Do they then go back and do a 5th? Or at that point do they then let you have the mastectomy? Having had both WLEs and MX I would say that , yes, surgery is a risk but you are having it anyway. If you want immediate reconstruction don’t you want as much skin to use as possible? Recovery from the two types of op? Quicker obviously from the the WLE, but you know about that. After the MX and reconstruction I needed help but actually felt OK. Theres things you can’t do immediately, driving, housework, lifting, but I don’t think I felt much worse than after the shorter operation apart from being in hospital longer and taking more painkillers. I would say recovery isn’t gradual, it jumps. And now at nearly 8 weeks post op I suddenly feel as if my breast is part of me again (and remember I had an implant and LDflap). You also need to get your surgery finished so you can get on with the rest of your treatment. I am sending you big hugs and best wishes and hope you get this sorted soon so you can move on with your life. Helen x
Hi roxygirl
Just a quick post have had a bilateral mx and strattice recon with implants (ohmy is that thr right word?) 5 weeks ago. I was dx with a idc tumour. There is extensive family history of breast cancer but it is all on my dads side. That said my consultant was amazing and immediately agreed with my request for a bilateral mx. I have been unbelievably lucky to only need tamoxifen for the next ten years and am also under genetics to see if I need to consider having ovaries removed. I
guess what I am trying to say is - its ur body, ur treatment and your decision ultimately. If u chose to have radical surgery that decision shoukd be respected and fully considered by thr MDT. I know I have been v v lucky with the team at my breast care unit and I hope u get the info u need to make the decision that is right for you.
I also have 6 chikdren ranging from 24 down to 16 then a 3yearold, 4 mine and two step one of which lives with us so I know how difficult it is to try to hide ur feelings, but I have to say I found my lot to be more responsive and understanding about things by being really open with them. Info shared with them as they wanted it and as I felt comfortable sharing it. The 16yrold found it the hardest as he didnt want to know so I didnt tell him but then found that he worked himself up over ‘ifs and maybes’ which resulted in a big heart to heart. Sorry for rambling but hope it helps?Andie
Hi roxygirl
Just a quick post have had a bilateral mx and strattice recon with implants (ohmy is that thr right word?) 5 weeks ago. I was dx with a idc tumour. There is extensive family history of breast cancer but it is all on my dads side. That said my consultant was amazing and immediately agreed with my request for a bilateral mx. I have been unbelievably lucky to only need tamoxifen for the next ten years and am also under genetics to see if I need to consider having ovaries removed. I
guess what I am trying to say is - its ur body, ur treatment and your decision ultimately. If u chose to have radical surgery that decision shoukd be respected and fully considered by thr MDT. I know I have been v v lucky with the team at my breast care unit and I hope u get the info u need to make the decision that is right for you
Take care
Andie xx