I am 10 days after diagnosis and cannot make up my mind about what to do following mastectomy. There doesn’t seem to be any discussion about living with prosthesis post-op but lots about reconstruction. I find myself changing my mind daily and need some advice. I’m don’t wear low necked clothes or strappy tops or go swimming, so putting myself through the horror of reconstruction and possible complications to me seems too much to take on when I am still struggling with the knowledge that I need a mastectomy. I don’t have a partner and my children are teenagers now. Is there anyone out there who is living with prostheses who can let me know what it is like please?
I don’t know if this helps - but -
I had a mastectomy 4 years ago. I wear a prosthesis in a pocketed bra or a sticky one in an ordinary bra. I do not wear any prosthesis when swimming.
I have not regretted my decision. I have to be a little careful when choosing clothes, that is all.
Good luck and be happy with you own decision.
gill
Hi angliagirl
Living with a prosthesis is for me just fine. I had mastectomy in 2004 and get my prosthesis from local breast clinic. I have a light weight one which goes in a pocketed bra. My breast were different sizes so for the first time in my life I can find bras which fit!
My scar is quite low so I find I can wear v neck tops with no problem.
There’s a great website called breastfree.org which discusses alternatives to rceonstruction in a positive way. I think there is far too much information pushing reconstruction as the ‘best’ option…for many women I think its probably not.
good luck and best wishes
Jane
Hello Angliagirl
I was in the same position as you just a few weeks ago and kept changing my mind as to if I wanted reconstruction or not. In the end I decided not to bother and I am happy with my decision.
I didnt want to put myself through more surgery than necessary and just wanted to think about getting on with treatment. I have not been fitted with a silicone prosthesis yet but just wear my comfie in my bra (im an A/B cup and got a lovely bra by royce from john lewis).
I still wear all the same clothes as before but have never been a plunging neckline lady either. I actually forget its even there. Im not disgusted by my scar - its really neat and my partner just jokes that that sides winking at him.
Its such a personal decision I know two ladies who cant wait to get reconstuction and think at my age (28) im strange not wanting it, but im fine about it.
I hope you can come to a decision- and I know once you have it feels good not having to think about it any more!
Yvonne x
as i understand it, you can have a reconstruction at any stage, even years into the future, so if you feel it’s not for you right now, then don’t be pushed into it, as you can go ahead later, if you change your mind.For me, it’s not an option, i KNOW i want to have a reconstruction, whatever the outcome of my operation at the end of this month.My surgeon has a real interest in the psychological effects of mastectomy/breast surgery and has asked me what i want and is going with my wishes.The other ladies have suggested you check out the websites, where you can talk to people who have made the decision not to go ahead with it and i’d also suggest you talk to your bcn and your surgeon again.Ultimately, whatever you decide must be the best decision for you at the time.just don’t feel pressured into something you don’t want.Talk to your family too if that helps…mine don’t talk to me about my cancer, so it’s difficult to know what they think, but it’s my choice, and for me, it’s right.Whatever you do will be right for you.
Hi Angliagirl,
I had my mastectomy last February, and was told I had to wait a year before reconstruction. At the start, I said, I would make up my mind after chemo and radio, as I wanted to go through that ordeal before making up my mind.
I’ve been through the treatments and while it was not nice, it was not the ordeal I was fearing.
I am now in the same position as you, I keep changing my mind, but the prospect of a nine hours operation and all the risks is rather scary. My OH will tell me to do whatever I feel, but still I keep wondering what to do.
Lately I decided to make an appoitment with the surgeon, to go through all the alternatives, risks etc (My surgeon, a lady, is lovely). I want to also find out how long do I have to make up my mind, before it is too late to have the operation.
Gill,
I wondered about going swimming without a prosthesis; did you not feel self conscious?
Sophie
If you are having radiotherapy after mastectomy this may make a difference to whether your consultant will reconstruct immediately after mastectomy. I had a bi.mx and my cons would not do immediate recon because I need radiotherapy and this can damage an implant. However aparently I do have the option to have it later if I choose. Quite honestly at the moment I do not want recon, I am 51 and have grown up children and no husband/boyfriend, whether this makes a difference to the way I feel, I dont know.
angela
Hi Angliagirl, am newly diagnosed myself, only last week, am seeing surgeon again this week. I too am totally baffled as to what to do for the best. You hear so many different stories for and against. He was a bit vague last week and said recon was risky. How can we be expected to make a sane decision when our (well mine certainly is!) brains have simply been blown away over bc dianosis! I feel as if I’m on the edge of a breakdown, and I’m usually such a ‘coper’.
Hi angliagirl
I had a mastectomy 18 months ago and was advise to leave recon untill after my treatment in case i needed rads. As it happens i did’nt need any follow up treatments other than arimidex and I sometimes wish I had gone ahead with recon straight away cos now I don’t know what to do. I have an appointment with ps coming up in dec and have a friend who is at the same stage as me who is definatly going for recon as she can’t wear anything sleaveless or low, but I find I have learn.t to live with the prosthesis and it does’t bother me to much but I will go to see ps and decide then.My other half is’nt bothered either way but I just don’t know what to do and the thought of a nine hour operation terrifies me we’re all in same boat are’nt we
Pauline
Hi, I won’t be having a recon and agree with you angliagirl on the reasons why, I’m almost a year on from my mastectomy and wearing a prosthesis is just fine for me. When you come out of hospital you will be given a “comfie” for 6 weeks or so before getting your “proper” prosthesis. I tried three different makes and had to order one in the end as my size was out of stock! I don’t think about it at all during the day, as it fits snugly in my pocketed bra, I have a lovely underwired one from Anita. I’ve just started swimming again and wear a spongy one with a weight in it, and no-one knows. Occasionally I have to be careful with v neck tops as it shows ever so slightly but I have never regretted my decision not to go for recon. Good luck with everything.
Liz
Thank you so much everyone for your comments. It has been SO helpful and I feel better already. I am not going to take the reconstruction and will see how things go. I am not due any radiotherapy or chemo just the hormone stuff, so I just want to get past this first hurdle before I consider anything more. As some of you say, just getting to grips with the diagnosis is more than enough for me. I guess that’s it then. I see the surgeon Thursday. Thank you everyone again. You’ve been a real support and helped me make up my mind.
Ruth
Hi Ruth
I really struggled with the choice (I had my chemo first and so had more time to think about it), but in the end opted for no recon. knowing that I could go back after my skin had fully healed from radiotherapy and change my mind.
I’m tall and fairly thin and so I think I can get away with it. I still wear the v-necked T’s I did before the Op as they are fairly tight and therefore do not gaap at the front. I never had a cleveage so… However it is still a hard operation to have, give your self some time to heal and get some TLC if possible. I’m back to running, cycling and swimming and feel great about the fact that my muscles are still intact (could do with new knee caps though!!).
From you login name I think you may be from my part of the country, if you would like to meet up send me a private message and let me know where you live.
take care
Pauline