Hello,

there are lots of mastectomy lasses on here and I know they will pop by when they get a chance.....I was lucky and had a lumpectomy, but a friend ( who has had a mastectomy) was advised against a double one as there could be a risk of the cancer going to the chest wall ( of course this is only ifs and buts and there is also every possibility it won't come back) a big decision indeed......it's good to get other opinions....good luck xxxx

Hi marlyn,

thanks ever so much for your reply. It’s such a big decision I know but like you say, there are other options:)

Take care,

Fe x

Hi there and welcome ...

I had a grade 3 and total right masectomy ... get the little xxxxer out ... and although I was scared to look at it the first time, I felt nothing really .. I think I just looked at it like my surgeon took my boob ... but gave me something far more precious... time .. I'm proud of my scar .. it tells me of my journey through cancer... and still here 2 years on and doing o.k ...

There's a wonderful lady that helped me through those early days .. [@Jolamine]‍  ... she had a single masectomy ..or lumpectomy... then later had a double masectomy .. if she picks this up, I'm sure she'll pop by .. 

Chrissie  xx

Morning Chrissie,

Lovely  to hear from you. So pleased that you are 2 years down the line, that’s fantastic!!!!! I feel exactly the same as you about my mastectomy, I’m not worried about the thought of no boobs at all which is why I really don’t want reconstruction.  Having Cancer has changed my life temporarally but when I do come through this, like you I will be proud of my scars xxx

Hope [@Jolamine]‍  pops up as I would love to hear her story too.

Have a great weekend, 

Fe xx

Hi Fechar,

I am sorry that I haven’t got back to you before today. I am on holiday and relying on a phone which needs to be replaced to reply to you. I am sorry to hear about your diagnosis. I understand from Chrissie that you are to have a mastectomy, but are keen to have a double without reconstruction. What treatment have you had so far and how have you coped with it?

Initially I was diagnosed with a lump in my right breast which turned out to be a grade 1, mucinous cancer. I was told that, if I had to have cancer, this was one of the better ones to have, as it is one of the least aggressive and a rare form. I had a lumpectomy. I had no radiotherapy or chemo but took Tamoxifen for a year. After 6 months I discovered a large lump on the outside of my left breast. My surgeon gave this a cursory glance and insisted that it was of no consequence. No tests were carried out at that time.

I was not happy about this, so, when he suggested radiotherapy, I told him that I saw no point in treating one breast whilst ignoring the other. We thus reached an impasse, which continued until 11 months after my lumpectomy. At this stage, I was referred to see the surgeon who was in overall charge of all the surgeons in my area. Ironically, this was the gentleman who I was deliberating going to privately for a second opinion.

He dressed me down in a freezing cold lecture theatre for about 1 and a half hours, telling me that they couldn’t have patients dictating what sort of treatment they required. He was drawing our discussion to a close, telling me that he didn’t think that I had listened to a word that he had said. Very quickly I told him that I had listened to every word that he’d said, but that he hadn’t answered any of my questions and, pointed out that I thought that I was there for a second opinion on my new lump and not about any treatment.

At this point, his manner changed completely. He was more in his comfort zone and he said that he would be happy to do that. He took me down to a treatment room and examined me, then referred me for a mammogram, ultrasound and a biopsy. Fortunately his wife was the senior radiologist in the area. She worked in the same hospital and saw me immediately. She talked me through all that she was doing and all that she saw on the scans and, she suggested that her husband would be happy to take over my care if I so wanted. I then went back to see her husband again. We were able to discuss the findings of my ultrasound and mammogram straight away, as his wife joined us to discuss her findings.

I then had to return 1 week later for my biopsy results. Much to my relief, the lump was benign. At the time of my lumpectomy, my pathology results indicated that a clear margin was not achieved at the time of my first surgery. This would normally have resulted in further surgery, but my original surgeon informed me that he had realized this at the time and, had taken an additional sliver of tissue away, so there was no need for this.

My new surgeon suspected that not enough tissue had been removed the second time and, that this was why the lump had returned. After this, we discussed the possibility of radiotherapy treatment. I wasn’t overly keen to have it, as my mum also had breast cancer and suffered all her days after, with horrific burns from her radiotherapy treatment.

My surgeon kindly offered to refer me to speak to 2 researchers in radiotherapy. One gentleman was very keen and told me that I might as well try it. The other seemed much more open minded and, told me that there was absolutely no point in starting it any more than 3 months after surgery - at this stage I was 11 months after my lumpectomy, so I decided against it.

However, a month later I discovered another lump in my right breast again. My surgeon recommended a mastectomy and, I asked him if it would be more prudent to have a double. He was quite surprisingly agreeable, although he never mentioned any potential downsides to having the double.

I had both breasts removed at the same time. I then changed to Letrozole, as the Tamoxifen obviously hadn’t worked for me. I asked if I needed any further treatment and was advised that this was not necessary, as everything had been removed and this was another grade1 mucinous cancer. I was terrified about the thought of going for this operation, as I have previously stopped breathing under anesthetic, so any operation is an additional risk. In the end, I found that it was very straightforward. In fact, I had less bother after this than I had with my lumpectomy.

I didn’t bother with reconstruction, as I have had previous surgery which rules out the usual donor sites. There was also a problem in that any reconstruction would take a number of additional hours under anesthetic, and my surgeon wasn’t keen to risk this.

I manage fairly well with a mixture of prostheses. I had a few incidents which could have been embarrassing to start with, but I soon found which one was best for which activity. I still manage to go to the gym and swim regularly.

If I can help you in any way, please feel free to ask. I know that I found it difficult to find anyone who had undergone a double mastectomy before I went for my op. Seemingly, most people only have a single.

Kind regards,

Jolamine xx

Morning Jolamine,

So lovely to hear from you. I am flabagasted about what you said about another lump in the left breast. I can’t believe it wasn’t checked out straight away especially as you had cancer in the other. SO glad you got it sorted in the end. I had my 4th round of chemo about 2 weeks ago, started on the Docetaxel. It was awful, my mouth/throat was so sore I couldn’t eat or drink, plus the aches and pains that go with it, was laid up for 10 days then at the weekend I had to go to A and E as I was severely dehydrated. The joys we have to go through hey:)

i feel so much better today although my next round of chemo is next week. I just keep thinking only 2 more to go!!!! My Consultant will reduce my dosage for next time as she said maybe it was a bit too high!

i still feel strongly about having a double mastectomy so I will have a chat with someone tomorrow when I go in for a line flush.

i am really glad to hear that you are getting on with life. That’s all I look forward to.

take care of yourself

Fe x

Hi Fechar,

Chemo can be like that - OK one time, then absolutely awful the next. I'm sorry that you've had to go through this. I'm glad that you've told your consultant and that she's agreed to reduce your dose next time. I'm sure that you can't wait to get to the end of your course.

You mention joint pains. I have had terrible trouble with all my joints since I started on Tamoxifen and then Letrozole. I had to have both knees replaced half way through my treatment and, it looks as if both hips will be next in line. I also developed Lymphoedema in both arms and have had to wear compression bandages from finger tips to shoulders.

I attend a Lymphoedema clinic where a specialist nurse massages me and bandages my arms up to look like the Michelin Man. I do this every 12 weeks and attend twice a week for 2 weeks.  Unfortunately, in all the years I have attended, we haven't managed to reduce the swelling, but we have kept the status quo. I do get some very strange looks from people and also some very nosey questions, when they see both arms heavily bandaged.

These are just 2 of the side-effects of medication, but hey, I'm still here after 10 years. I have never for one minute regretted going for a double mastectomy. I feel that I have done all I can to remove all the cancer that was present. I realize that realistically, if it recurs, it's probably curtains for me, but I'll live with this.

I have had some 'interesting' times getting the right prosthetic for certain activities. I initially bought silicone prostheses for swimming, but when I went in the water, the weight of these pulled my breasts to waist level. I then tried foam inserts, but these left a shower behind me when I came out of the pool, despite squeezing my breasts before I left the pool. I then tried forms with polystyrene beads, but these had my breasts up around my neck in the water. I now used knitted knockers for swimming and they are by far the best I have come across.

My bras are now supplied by the lymphoedema clinic and come up quite high, so I find that a number of dresses and tops can be too low and show off my scarring. I get over this by choosing higher tops or using a modesty panel. I used to have large breasts and find that one advantage is that I can now choose what size my breasts are from day to day. Another is that I don't need to be worried about being lobsided, which is something that worries many people who have  a single mastectomy.

I find that because of my original size, the prostheses supplied by the NHS ae far too heavy. For everyday I use a foam form supplied by Marks and Spencer or a Polystyrene bean form which I bought via mail order. You will be given a pair of softees for the first few weeks after surgery, so don't need to worry about prostheses for a while yet.

I hope that you can have a good chat about having a double when you attend tomorrow for your line flush. You will probably find it best to draw up  a list of the advantages and disadvantages of having a double mastectomy before you come to a final decision.

You say that you are really glad that I am getting on with my life - we only get one life, so we have to deal with whatever challenges are thrown against us. I fully intend to make the most of the time I've got left whatever challenges spring up along the way. I hope that you can too.

Kind regards,

Jolamine xx

Oh my days, I can’t believe you’ve had to go through knee replacements, lymphoedema aswell as Breast cancer. You truly are an amazing woman.  Thank you SO MUCH for sharing your story and really wish you every happiness that comes your way.

xx Fe xx

Hi Fechar,

I can't say that Cancer hasn't changed my life. It has, but all the side-effects can be coped with. I consider myself lucky to still be here and, for as long as I can, I intend to live my life to the full.

Kind regards,

Jolamine xx

Hello, I also asked that both breasts were removed and was told no, that no surgeon would ever remove a good breast.

I am so pleased that I did not go down that route. I had my mastectomy and followed a year later with a breast reduction on the remaining breast. I feel very fortunate to have one 'real'  breast and I now feel almost normal with the huge variety of prothesis available.

Consider carefully. There are some amazing surgeons out there. I was lucky enough to have had one of the best.

Every good wish with whatever path you decide to go on.