H Sa1lor and welcome to the Cancer Chat community.

Hopefully some of our members who have opted for this course of treatment on their breast cancer journeys will get back to you soon but if you feel talking your options through with one of our cancer nurses may help then do give them a call. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

I hope you're able to weigh up all the pros and cons and come to a decision that's right for you.

All the best,

Steph, Cancer Chat Moderator

Hi Sa1lor,

Welcome to our forum. I am so sorry to hear of your dilemma.

I have had 2 bouts of breast cancer in the past 11 years. I was 60 when I was first dianosed.  The first time I had a lumpectomy, followed by Tamoxifen, but my cancer was back within a year. Second time around I had a bilateral mastectomy, followed by Letrozole. Due to previous non-cancer related surgery and problems with anaesthetics, I decided not to have reconstruction. I have never regretted this decision.

Do you just have cancer in the one breast? Most surgeons are reluctant to remove a perfectly healthy breast for no reason. Their argument is that it doesn't improve one's chances by doing this. I honestly haven't found it that difficult. The operation itself was easier than my lumpectomy. I feel happier in that, I had as much removed as could possibly be removed.

I have a selection of different prostheses for different activities and cope fairly well with them all now - I did have a few embarrassing experiences at first, especially with swimwear. I found silicone prostheses were too heavy and ended up around my waist. Foam ones needed to be wrung out as I came out of water and, polystyrene bead prostheses came up around my chin when I was in the water, but I have got this sussed now.

If you are still unsure what you want to do, have another chat with your surgeon to discuss your options. Whatever decision you make has got to be the right one for you and, I hope that you manage to reach this.

Please keep in touch and let us know what you decide to do. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine, 

Thank you so much for posting a reply to me so quickly.

I have just had the post surgery report and it is good and bad.

The good: it has been caught very early, the cancerous bits were about 2mm and  it hasn't spread to my  lymph nodes.

The not so good: the area of precancerous change was about 3x bigger than they thought and I need to have a further operation to clear further.

Speaking to my surgeon this morning he said that if he had known the size of pre C change before my op we would have discussed mastectomy - at which point I asked about bilaterally M again (whilst I realise the disease is only in one side I do not want to be asymmetrical). He said that if that is what I decide he wouldn't "fight" me. He also said that I wouldn't need Radiotheapy (no more mammograms either). I presume I'll still have to take aromatise inhibitors. Does anyone manage to stay on them - all you read is how awful they make you feel. My B C nurse is very anti removing a healthy breast.

I have a couple of weeks before my next appointment to think about it. If I hadn't needed a further op, I think I would have accepted it and kept them even with the radiotherapy.

It is a shame, he has done a beautiful job - they are currently the perfect shape and size; with hindsight I should have had a reduction 10 years ago.

However, I think I will opt for bilat M without reconstruction (this would have been a very traumatic decision when I was younger).

I want to feel that I've done all I can to beat this vile disease. I'm eating healthily/carefully, I've lost weight so I don't need BP tablets any more and I'm exercising every day.

As far as prosthetic breasts go, I think all I would want would be minimal padding sewn into bralette/sports bras - are these available?

Again, many thanks for your kind reply,

best wishes,

Helen

Hi Helen,

I am so sorry to hear that your surgeon hasn't got clear margins following your recent surgery.  What a pity, when you've got such good post-surgical results. My post lumpectomy results showed the same, but my surgeon insisted that he had realised this at the time and had taken an additional sliver, which wouldn't have showed up in pathology. He insisted that, as a result of this, there was no need for further surgery.

I took his word for this, but developed another cancer within a year. I also discovered another lump in my other breast 6 months after surgery, but this was fortunately benign. When I got the second cancer, I was attending a different surgeon and, we discussed my options. He suggested a single mastectomy initially, but was happy to go with the double, when I suggested this.

It is good news that you have caught this early and that there is no lymph node involvment. Like you, I didn't want to have operations every year and felt that, as a person I am more than a pair of boobs. I gladly had all that I could removed to save me from needing further surgery and treatment. I still took Letrozole for 6 years after this and, did have a number of side-effects from this. However, some people seem to sail through without any problems - it's impossible to predict before you start.

Your BC nurse is trained to conserve breasts where possible, but she doesn't have to live with any consequences.

You have to be sure that your husband would be happy with you having the bilateral mastectomy, as your chest won't be as sensitive as your nipples currently are. You are entitled to a new pair of prostheses every second year on the NHS. These are made of silicone and, are the more expensive types to buy. I had always had a large breast, so my breast care advisor insisted that I should stick to the same size. I found these very heavy and noticed my bra straps digging into my shoulders. I have found the prosthesis gradually getting lighter over the years, but they are still not light enough for my liking. You can buy bras with pockets in both cups, or you can sew pockets into existing bras.

You can buy foam breast forms from Marks and Spencer. These are sold in 3 sizes and sold individually. They are lightweight, can be used for swimming, sports, are washable and keep their shape fairly well. I now wear these most of the time, but prefer to use a pocked bra to prevent them from popping out of a normal bra. When I'm at home I often go without any support, as this is so much more comfortable. When you buy any prostheses or post-surgery bra, you will now be entitled to have the VAT taken off the item, because of your surgery. I used to have to sign a form for this, but since Covid, I have not had to do this and, you will get the VAT taken off the price at the till.

I suppose that the fact that you need the second surgery has given you another chance to opt for a mastectomy, without being rushed into it, but this still has to be your choice, as you are the one who will have to live with the result. I certainly would never have considered a bilateral mastectomy, if I had been younger, but I wasn't too bothered at 60.

It sounds as if you are doing all the right things. You have done well to lose weight and to get your blood pressure down, so that you no longer need medication for this. Eating healthily also helps, as does cutting down the amount of sugar which you consume.

I hope that you reach the right decision for you and, I am always here if you have any further questions.

Kind regards,

Jolamine xx

Hi Helen,

I couldn't have the Diep reconstruction due  to a previous gall bladder operation, when I had to have an open cholecystectomy. Unfortunately, I stopped breathing under anaesthetic and, came around to find that they hadn't done the procedure. I then had to wait 2 weeks for my gullet to heal before they could have another go. Second time around they relieved me of a 3" gallstone and my appendix. They told me that I now always need fibre-optic intubation for any future operations and, that they have to put the camera down before I am knocked out. This makes any surgery particularly dicey for me, so I don't want to risk anything unnecessary. The other problem is that I now have a scar from breast to groin, so no suitable donor skin.

It is a long operation, but it's a once off. There have been problems with some silicone implants, which have had to be removed. I have found it nice to have some shape, especially when dressed up for special occasions. I have found that bras need some sort of prostheses to anchor them to your body. Of course, if you don't have anything in, then you don't need the bra. This is a great treat for me, because I could never wear strapless tops or dresses on holiday before - now it's no bother. HAve you looked at the Latissimus Dorsi Flap Reconstruction? This is taken from your back.

It's so difficult to decide, isn't it?

Kind regards,

Jolamine xx

Hi Jolamine,

You have had a hard time with all that surgery. I do hope it is all behind you now.

I have looked at the other procedures, but I'm not sure about them using a muscle flap - I need all my strength to help my husband on the farm. Plus no doubt it would be a longer operation.

I have thinking more today and feel that I probably will ask for a bilat mastectomy with no reconstruction for the following reasons:

I want to avoid any further surgery, If it helps me avoid radiotherapy that would be good, I'm not 100% confident in Mammograms and scans as these didn't initially detect it and missed the extent of the precancerous change (hence my next operation). So all in all, I think that they have to go, then I will feel that together with my healthier lifestyle changes I've done all I can to stop this going any further. It would be awful if it came back and spread - I would then regret very much not having them both removed.

I still have a few weeks to get used to my decision, I've looked at photos on the internet so I know what it will look like. I'll be sad, but it's certainly not the end of the world.

I will then hopefully be able to move on. It's funny, I was really quite enjoying lockdown-hat staying at home, looking after my family and doing all the little projects I'd always wanted to do but never quite had the time.

Now normal looks so appealing!

Many thanks again Jolamine, 

Best wishes, 

Helen xx

Hi Helen,

You're doing the right thing by looking at all of the options. You will find yourself limited in what you can lift after a double mastectomy. I still have problems with heavier items and was specifically told not to lift them. Unfortunately, I developed bilateral lymphoedema in my arms and hands, as a consequence of my surgery.

This causes swelling in these areas and I wear a compression bandage from shoulder to fingertip all the time. I also attend a specialist Lymphoedema clinic for two weeks, every 12 weeks. The nurse massages my top half to rediect lymph to the lymph channels and, then bandages me in several layers of compression bandages. She does this twice a week for the 2 weeks. I look like the Michelin Man for these two weeks. This hasn't helped to reduce my swelling much, but it does keep it fairly consistent.

Don't worry, you'll get back to normal eventually. This teaches us to enjoy every moment in life!

Kind regards,

Jolamine xx

Hi jolamine, 

Hope your well, 

Hi Helen thought I would drop you a message as I was the same as you, I had a right sided mastecromy in May which requires no further treatment.

Although I started out with an expander in after the op I had to have it removed as I got sepsis when my body rejected it.

My surgeon wouldn't consider taking off a healthy breast.

So now I'm.wonky.

I have a softee which when I wear it you can't tell...although I forget to put it in all the time and go out with one boob, but its my body and I don't care x

I'm back at the hospital on Wednesday for my reconstruction appointment which was going be an implant but due to the rejection...i will now have the tummy tuck op. I am quite happy as I am and if they had done the bilateral mastectomy I don't think I would have bothered either.

Just wanted to wish you luck and hope you make the best decision for yourself x 

Hayley x

Hi Hayley,

It's lovely to hear from you. Many thanks for joining on this quesrtion from Sa1lor, as I'm sure that she will benefit from more than just my input. You know just how important it is to be able for each and every one of us to be able to make this decision for ourselves and, we need a mixture of other people's experiences, to be able to reach this.

I hope that all goes well for you on Wednesday and, that the tummy tuck reconstruction can go ahead.

Kind regards,

Jolamine xx