After my first routine mammogram at the age of 51 I was recalled and after a core biopsy I was told I have DCIS. After a few hectic weeks researching immediate reconstruction I decided to just have the mastectomy. There is a possibility I might need radiotherapy after this but the surgeon said I probably won’t have to have it but I might need hormone therapy. The reconstruction sounded more complicated than I first thought - I am a big lady so I would need the other breast reduced and tissue taken from my stomach and/or back. My OH has been fantastic, friends a bit insensitive without realising it (but I am super sensitive at the moment). My OH said the traumatic thing is having the mastectomy (but I should just think of that as getting rid of the cancerous cells) then the practical thing is how to fill my bra afterwards and look “normal” with my clothes on - either with a prosthesis or a reconstruction. I seemed to spend ages with health professionals discussing reconstruction but now I have opted for a mastectomy (Oct 7th) I feel like none of them want to talk to me any more and I feel so isolated.
I am so scared of the operation and how I will feel immediately afterwards.
I had my mastectomy last Feb. My arm still feels strange - a bit numb even now. Not something I was warned about. I found I reacted well to the mastectomy cos I was so keen to get rid of the lump! I agree profs dont seem to want to talk. I suggest joining a support group where you can meet others with the same situation. Also brest cancer info days are a really good way to get to meet others who understand.
Thanks for your reply JayneRob. Your suggestion to join a support group is a good idea. Friends mean well but they can’t possibly understand how I feel - they say things like “you will be much better after the operation”. Why will I be much better after the operation?? I will only have one breast!! Like you, my husband says just think of it as getting rid of the cancer cells. On a good day I think like that but on a bad day I am panicking.
Everyone says I am brave to just opt for the mastectomy without reconstruction. I don’t feel brave, the reconstruction sounded so complicated that’s why I opted not to have it. Now I am wondering if I can cope with just having one breast.
I know I am “lucky” because my prognosis is good and when I read other entries there are women who are having lots of treatment and are still unsure of the outcome. That’s when I feel like I am being selfish moaning about what is happening to me.
You are not selfish Maude,this is happening to YOU and you need to get your head round it the best you can (if one ever really does) Don’t compare your story with others on here.
I like you, feel lucky because it could have been worse but it is still a very traumatic thing to go through.My emotions have been more troublesome than the surgery!
I had a reconstruction immediately as I knew I wouldn’t want further surgery. The main thing for you is to get rid of the DCIS.Many women cope with one breast and maybe you would meet some at a support group and it might help to chat to them.
Hi there Maude, I just thought I’d add my two penn’orth to say that reconstruction isn’t always straightforward so don’t be pushed into it if you don’t want it. I’m now 9 weeks post-op following bilateral mastectomy and immediate reconstruction with tissue expanders. The discomfort isn’t really lessening, in fact my Consultant increased my pain medication 3 weeks ago and started me on Tramadol and Lorazepam which makes me feel sick so I’m now on anti-emetics too!!
I went back to the Royal Marsden last Tuesday and it turns out the pain is being caused by my left expander moving!! Can you believe that? I couldn’t when the Consultant told me but she was able to move it with her hands and that reproduced the pain I’ve been getting in the ribs. She doesn’t know why this has happened and quite honestly told me that she doesn’t have any magic solutions for me. She has suggested I try wearing a tight fitting sports bra 24/7 until my next appointment in 4 weeks and see what happens.
The right hand implant is nicely in place where it should be but for some reason the muscle on the left hasn’t contracted around the expander.
At least I now know why which is something but if it doesn’t settle and I’m unable to live with the pain the only option will be to take the expanders out. I hope it does settle. Otherwise I’ll just have to live with prostheses. And the way I feel right now I’m wishing I’d opted for that originally, despite being only 46.
Thank you both so much. Your comments and support have helped me so much! Trudie, I am so sorry to hear you have been having trouble with your reconstruction. I hope it can get sorted out soon - you have already been through enough without all this. I used to think reconstruction was simple but when I started looking into it after my diagnosis I was quite shocked. Like I said before, I feel like I have “chickened out” by not having the reconstruction.
The advice about joining a support group is very good. I feel I can’t talk to my friends because they can’t understand and I don’t want to put it all on my husband (who is being very supportive). Also I don’t want to be seen as some sort of “victim” by people around me. I want to talk about other subjects apart from my mastectomy! Joining a support group would enable me to have a separate support system.
Hi Maude, I felt I had “chickened out” by opting for implants when other people have the DIEP flap. But now if my implants have to be removed I’ll feel that I’m a failure for not being able to continue with the process. Does that make sense?
I’m sure you’ll be fine after the Mastectomy. I was surprised how much moevement I got back and how quickly after the reconstruction,
Isn’t it amazing how we all make different decisions in this journey. I too felt I had chickened out of facing life with one boob and could only face the op when I knew I could have a reconstruction. I felt weak for that!
Everyone is different and every decision is different.
I do not regret my decision and feel “in awe” ( not sure of correct term) of women who say “take it away I don’t need it” .
I thought OK BC you can take my breast tissue but not my cleavage or my life!
Maude you can say OK BC you can have my boob but not my life!
I wish you all the best for your surgery and hope to hear how you get on,
You ladies are amazing! I can’t tell you how much better I feel being able to exchange ideas and feelings with you both. It’s so strange that we have all made different decisions then we are beating ourselves up about them! We get given this diagnosis and then we get all this information thrown at us by health professionals while our heads are spinning. To cap it all we then have to make our own decision and even when we have made it we wonder if it is the right one.
My husband helped me when he summed it up like this: the mastectomy is traumatic and horrible and that is a fact but it gets rid of the cancer cells and allows us to carry on living. Neither the prothesis nor the reconstruction is an ideal option (both have their drawbacks) but we just have to pick the one that suits us best. They are both just ways of “filling your bra” and looking normal and feeling confident with how you look with your clothes on.
I meant to say before … Trudie please don’t feel a failure if you have to have your implants removed. You put yourself in the hands of the surgeon and with the best will in the world reconstructions can fail (they stressed that to me all the time). It is not your fault if the reconstruction fails and, let’s be optimistic, it might not fail - it is still early days.
And Dot I love what you said about not letting BC have my life. Why go through all this drastic surgery and treatment and then sit there feeling sorry for myself! I have got a lot of living to do yet.
Hi Maude,
I am glad we can make you feel a bit better and less alone.Thats what this forum is all about,nowhere else will you find so many people who understand.
I sounded very positive when I said “OK BC you can have my breast tissue but not my cleavage or my life” But I have to be honest there are times when my brain doesn’t want to feel that way and I just want to cry. But that is getting less as time goes on.So don’t be hard on yourself.
Hugs
dot
x
Sorry it’s been so long but I just wanted to let you know how I got on. I had my mastectomy on October 7th. A week later I was told that I had pre-cancerous cells and a grade 2 10mm tumour which was successfully removed. I didn’t need radiotherapy (thankfully!) and I am now taking Tamoxifen. I go for a check up in April.
I am still struggling with movement in my arm but I am having some physio to help with that. The prosthesis and underwear situation seems to be a learning curve. The Tamoxifen is upsetting my stomach and I feel a bit menopausal - hot flushes, brain not functioning properly etc. Apart from that I am ok. My main moan is that I feel a bit sickly when I drink wine, I think that is the Tamoxifen and I hope it isn’t going to last for the 5 years I am on it!
Nice to hear from you.I am glad teh surgery went OK.Like you I am only on tamoxifen,no chemo or rads.
I have been OK on tamoxifen ,no hot flushes but that makes me wonder if it is working properly! LOL!
I also find wine affects me but I tend to get heartburn so now I drink less or drink vodka instead!
Lets hope 2009 is a great year for us!
Love
Dot
xxx