Hi Lesleylou,

A very warm welcome to our forum.

Like you, I have had 2 bouts of breast cancer within a year of one another. First time around, I had a lumpectomy followed by Tamoxifen for a year. Six months after my first diagnosis, I discovered another lump in my other breast. My surgeon was  pretty sure that this was another cancer, but fortunately, biopsy proved otherwise.

Almost a year to the date of my first diagnosis, I discovered another lump in my original breast, but this time I wasn't so lucky and it was a second cancer. My surgeon advised a double mastectomy, as he said that the lump in my other breast was pre-cancerous.

I wasn't a good candidate for autologous reconstruction, due to scarring from previous non-cancer related surgery. I have also stopped breathing on the operating table, whilst under anaesthetic, so I decided not to bother with reconstruction. All in all, I manage fairly well with an assortment of different prostheses for different activities and I am quite happy with my decision. I am fortunate that my hubby was quite happy with the least dangerous option for me at the time and he has always been fully supportive of my decision. I have now had 14 years since my surgery and I am fortunate in that I am still living life to the full.

A mastectomy sounds like a huge hurdle, but I recovered better from that than I did from the lumpectomy. Have you got a date for your surgery yet? Feel free to ask any further questions if you have any.

Please keep in touch and let us know how you get on and remember, that we are always here for you.

Kind regards,

Jolamine xx

Hi GoonerGirl,

I have been away on holiday this week and hadn't seen your latest news. I can understand how gutted you feel, but it's really not as bad as you're thinking. I had to have a double mastectomy, when I developed a second cancer within the same breast. At the time, I was totally in bits, but with the benefit of hindsight, I'm glad that I had the double. I could then satisfy myself that, we had done all that we could to remove the cancer and to prevent it from coming back again. 

I wasn't a suitable candidate for autologous reconstruction, due to scarring from previous non-cancer-related surgery and I have managed fairly well with an assortment of prostheses for different activities. It is now 14 years since my surgery and although my life is not the same as it was before my diagnosis, I am still living it to the full.

I am glad to see that your date for surgery is 24th, so only 10 more days to wait. I'm always here if you have any questions in the meanwhile.

Kind regards,

Jolamine xx

Hi LL   . Sorry you find yourself here having to make this big decision. Reconstruction using your own tissue is a long operation (8 hours) which needs a 3 month recovery time . It involves a scar hip to hip , a new breast and moving your belly button . Please be aware that if you opt for a delayed reconstruction that it is then classed as “cosmetic” and you will probably wait about 2 years . If you opt for a single mastectomy recovery time is about 3-4 weeks . It’s a very personal choice and not everyone is a suitable candidate for reconstruction .Please think it through carefully and chat to the nurses about it . I wish you all the best xx

Thank you for your reply definitely gives me lots to think about x

Hi again Lesleylou,

You are definitely not alone. It’s so hard to come to terms with, and it’s hard for anyone that hasn’t been through it to advise in any way. If you want to chat at any time, feel free to message me xx

Hello Lesleylou,sorry to hear you are in this position .I was diagnosed last July and also found another cancer in my other breast .I was told that reconstruction was an option ,I decided to have bilateral mastectomies to just get rid of anything there and put reconstruction on hold .Had chemo and finished that in March ,felt quite happy with wearing the prosthesis but very hot in our summer months . I am now awaiting reconstructive surgery . 
Take each day as it comes and take your time recovering ,you might want to go for reconstruction later ,you may not . In the end ,it’s your decision and see how you feel . Hope all goes well for you . The op is not painful and everyone is very supportive. Good luck now xx

Thank you for your reply I’m so glad things are working out for you I will take on board what you’ve told me good luck for the future and thanks again xx

Thank you Jolamine,

I don’t know if you are aware quite how much your replies help us all. Knowing someone really understands what you have been through is so comforting at a time when my friends are all shocked at my diagnosis and don’t really want to talk about it. This is not a criticism of them, more an observation - I think they just don’t know what to say. 

Despite feeling so sad about it, I do feel that the mastectomy will hopefully give me the best chance of getting rid of the cancer. I’m sure I will get used to the prostheses in time. I can’t help wondering if it will change how I need to dress? I’m not suggesting that I wear clothes that show my cleavage all the time, but I can’t imagine how it will be- whether I need to wear less fitted clothes, higher necklines etc.

Thank you as always for your support xx

Hi GoonerGirl,

Thank you for your kind comments. I sometimes wonder whether my replies are helpful or not, as I can be quite blunt at times and not everyone wants to know all the details. I found it difficult with some friends at first, because they didn't know what to say. Some of my closer friends surprised me by distancing themselves. Others have been absolutely marvellous. Looking back now, I think that a lot had to do with how upset I was at first and how this must have come across to them. I lost my mum to secondary breast cancer and then lost my best friend to bowel cancer, just at the time that I was diagnosed, so naturally thought that I would go the same way, leaving my son and daughter behind. This left me with all sorts of sympathetic questions from all and sundry and everyone treating me as if I was ready to pop my clogs any day.

After my second surgery, I developed bilateral lymphoedema in my arms and I had to wear compression bandages from my shoulder to my finger tips - I looked like a close relative of the Milk Tray man. I got questions every where I went at that stage, because it looked as if I had 2 broken arms, but I put a much lighter spin on it, even though I didn't necessarily feel any more confident about my treatment. This made such a difference to the attitude of people and made them more inclined to ask more sensible questions, without that terrible pitying look, that I dreaded.

None of us want a mastectomy, but if that is the best way to hang on to life, then there's no contest. Immediately after surgery, you will be given a "softie" to wear until your scarring heals. You should be supplied with a Silicone prosthesis a few weeks after surgery. This is usually replaced every 2 years. I had large breasts and was given prostheses which weighed a ton to start with. Almost every time I go for a replacement, I am told that the new one is lighter, but I still find them too heavy. I have discovered that Marks and Spencer do a foam breast form, which is much lighter and this suits me better for everyday. It doesn't look quite as natural and the nipple can sometimes be seen through lighter weight clothing. 

I was advised to wear a supportive bra after surgery. This is something that I have always done anyway, but, after I developed the lymphoedema, I was given compression bras by the Lymphoedema clinic. Although these are very comfortable, they do come up too high for a lot of "V" shaped fronts. Like you, I don't want to expose my cleavage all the time, but it is still good to be able to wear different styles. I get around this by wearing my lower cut bras and where they still show, I either sew the "V" so that it comes up a bit higher, or I pin a broach in place. I have only recently managed to get some lovely little pins in assorted colours. They have different coloured gem stones on the outside and an ear ring type clasp to grip them at the back of the material. I find these great for light summer dresses and tops.

I did have some "interesting" times when I started back at swimming and was experimenting with swim prostheses. The polystyrene foam ball filled ones, were fine until I got in the water, then my bust floated up to my chin and looked very peculiar. The foam ones were fine until I was getting out of the water, when I had to squeeze the water out of them to prevent me from leaving a heavily dripping water trail behind me. They also took forever to dry. The silicone ones specifically for swimming were expensive and their weight made them sit at about waist level. There is a charity called Knitted Knockers, where volunteers knit a prosthesis and fill it with bath scrunchie material. These don't give a great shape, but they do dry quickly after your swim. I have found the M & S breast foams to be the most natural looking and they dry well. I have also popped these into the spin dryers at some swimming baths and they seem to have survived the challenge.

I no longer wear wired bras, as these can still dig into sensitive skin, but I have had some more presentable bras fitted with pockets, which are handy for dressier wear. Some shops do provide post-mastectomy bras, which are pocketed, but the styles of these are pretty dire and they usually only come in black, white or nude colours. Apart from these problems, which are all surmountable, I have had no difficulty in wearing clothes.

Have you been advised to wear a soft bra immediately after surgery? I was advised to wear this both day and night to start with.

I am happy to answer any more questions that you may have.

Kind regards,

Jolamine xx

Thank you again Jolamine for your detailed message. I can assure you that your replies are always helpful. I would prefer someone to be ‘blunt’, rather than only tell me half truths. I’m here for support and information, and you provide both in abundance for so many of us.

The information about prostheses was really helpful. I too am big busted, and so I’d been wondering about the weight of prostheses - I’d rather wear something that I’m not continually aware of. Coincidentally I saw the foam breast forms in M&S yesterday, and wondered about them. I was there to try on some of their post surgery bras for size- they have a pocket for the prostheses. They are moulded rather than soft cup, and reasonably attractive, so once I’d checked them for size, I ordered myself a couple online, as I had a money-off code. The breast forms were very reasonably priced, and the nipple shouldn’t show through the bras that I bought, so I will give them a go. 

A friend who had breast cancer a couple of years ago is sending me the soft bras that she had immediately post surgery. They don’t come in cup sizes, and I’m not sure whether they will fit me, but I will give them a go when they arrive. I understand they provide some compression.

I’m glad that you have managed pretty well as regards clothing. It has made me feel a bit more confident that everyone won’t be able to tell that I’m wearing a prosthesis, and that I will still look like me! And thank you for testing all of the prosthesis options for swimming- that has saved me a job!! 

xxx