Hi everyone, I thought I’d start a thread for those of us who are going to have a mx in July, so that we can share the journey and experiences.

I’ve just finished my chemo and found out that my surgery will be on 25 July, they recommend a mx of the left breast and complete node clearance on that side. Because I have the BRCA 2 gene mutation, I have opted for a bilateral mx. I will also need rads in September.

I am 41 and I have decided that I want a reconstruction. The surgeon has given me three options:

  1. mx on left, rads, followed by another op next year for ld flap recon on left + mx (leaving nipple) and straightforward boob job on right, in one op
  2. bilateral mx, rads, bilateral ld flap recon after.
  3. bilateral mx leaving nipple on right and immediate tissue expanders, then rads, then at some point change to silicon implants

The option that appeals to me is the last one because it would mean a major op immediately and only minor ones after, and the cosmetic result is normally better I am told, but I am worried about the risk of capsular contraction, and some people say that it’s horrible to have the expanders.

So a lot to think about and decide, and I need to start to prepare mentally for my natural breasts to go - not sure how to prepare for that.

I would love to hear from others and share thoughts.

Hi Barbwill,

Thanks for starting this thread.

I’m having a mastectomy on 18th July. I’m 39 and had surgery in January, my tumour was large 76mm and DCIS of 94mm and I had 600 gms removed but still no clear margins and multifocal BC so I’m having a mastectomy. I had my last chemo on 14th June. I’ve also been referred to genetics but the appointment isn’t until 11th July so the outcome of any genetic testing will not affect the surgery I have on 18th. I was recommended the delayed recon and was told this would give me the better cosmetic outcome as I will be having rads??. I did consider the expanders but I think this is more suitable for smaller cup sizes. My original size is a G cup (still got one at G cup) and although I won’t get anywhere near that on a recon, I am more likely to get a larger size from having a recon using tissue frommy tummy. Is it called a TRAM flap? When I have my Mx, I will also be having node clearance and a reduction on the good side to the size that they will eventually be able to reconstruct me too on the right. I am so pleased that I am getting a reduction on my good boob as I would be terribly lopsided otherwise.

I haven’t fully prepared myself for the Mx yet. My biggest fear is how am I going to look at it? I’ve also been burying my head and haven’t read up too much about it. I looked at a few pictures of recons a few months ago but at the moment I don’t want to research and look at any Mx/recon pics. I have seen on another thread that there’s a website, I think it’s called breastfree, that has pics, but I am too scared to look.
I’m going to the younger womens forum tomorrow and there will be a talk about recons so I am hoping to learn more then. I will also ask about cosmetic outcomes re immediate expanders Vs delayed recon and the effect of rads.

Take care,

Lisa xxxx

Lisa, I will be seeing my breast care nurse on Monday and she’ll be showing me pics and will tell me more and I will certainly have more questions for her. I will also see the surgeon again the week after for the final decision. The surgeon did say option 3 for me gives best results but I also did hear that rads are a problem for immediate implants … they are planning to give me rads over 5 weeks, very slowly, so perhaps they don’t expect them to damage my skin too much ? I don’t know, I’ll definitely ask.

Today I looked at the first pics on the McMillan website, in the reconstruction bit. There is a pic of a woman after a mx, without recon, and then at least one for every type of recon. I have to say they look good, not too shocking. Please let me know if you would like me to post the link on here.

I am a cup C so I guess a quite standard case. I have been told I don’t have enough fat to do the recon with my own bits so it will have to be implants in any case. Talking of fat, the BBQ is on and I hear that the burgers are ready! Talk to you later!

Hi I’m booked to have a double mastectomy on Tuesday 5th July, (with no reconstruction planned until after treatment is completed) following a recent diagnosis of breast cancer on the 24th June. I’m 37 married and a mother of two aged 10 and 6. Still very much in shock but am defo a glass half full kinda girl so trying to remain positive would love to be in touch with anyone going through or been through the same thing. x

Oh Eozev, so sorry to hear you also got diagnosed, and only just a week ago, and so young. In fact I feel quite weird to be the oldest one on this thread so far at only 41. How absolutely awful for all of us and our families. It is really terrible but somewhere inside all of us find a way to digest the diagnosis and cope with the treatment. I also have kids, 3 year old twins (boy and girl). How did your kids react to the news ?
Have you had your pre-op assessment already ? What have they told you about how long you’ll have to be in hospital ? Do they need to take glands from the armpits as well ?
I remember that first period after the diagnosis as such a hectic time, having to go to hospital every day for tests and chats with doctors and nurses, and all the practical things to arrange after such a big change to my life. And having to tell people about it, and being on the 'phone a lot. It leaves really very little time to think but maybe that’s a positive thing actually. I am not sure one can ever be prepared for an op like that anyway, no matter how much time we’re given to think.

Hi Barbwill, yep such a shame we’re all in this boat but hey I’m a strong rower and we’ll get there!
The children were amazing real troupers my son who is the oldest is rather quiet at the moment and asking very good questions and unfortunately he knows a bit of cancer through losing my dad his grampy. My daughter hmm shes 6 and I think maybe we explained it a bit to matter of fact and casual we tried to make it as light hearted as we could to make it less tramatic but now she wants to announce it in show and tell at school etc so I’ve had to warn all the teachers. We thought the book “mummy’s lump” was great though have you seen it?
I had my pre op last Thursday hoping to be in hospital just the one night if I can and having just some of the glands removed from just one armpit.
Can I say how gorgeous you look in your photo you should be a model like you say we are so young I was sat at the hospital the other day waiting and was the youngest by at least 20 years it did feel a bit strange. I’m so sorry you are now requiring more surgery, have you decided on what is right for you re reconstruction? I’m going to wait but would be grateful if you could send me the links for any sites with photos as I haven’t looked yet.

Life is very hectic and I’m not quite up to date on all the jargon and bedtime reading leaflets that are coming out of my ears lol
For me telling other people was the hardest thing after telling the children I seem to be managing well at the moment and its only when people mention the children I start to well up a bit in fact I feel a bit guilty when other people are in tears and I end up reassuring and comforting them but maybe I’ve run out of tears and thats why I’ve decided to try and make light of the situation when possible.

Hopefully catch up again soon, take care x

Hi Eozev,

I recognise so much of my initial spirit in your words, that strange something that clicked in my mind and kept my head high through that initial, very difficult phase. At the time I was worried that I would come crashing down at some point but it hasn’t happen. My mental state has changed but without a crash, I just settled into a less heightened but still positive way of coping with it all. And don’t children help us cope. My children are my main worry but also my main source of joy, determination to withstand the side effects of treatment, and strangely, of my serenity.
I haven’t got “mummy’s lump” but have heard about it before. I must get a copy and see if it would be suitable for 3 year olds. I have been told that in the book the surgery happens before the chemo. In my case it’s actually the other way round. I started the chemo straight after the diagnosis and I am having the surgery at the end of the chemo. This is also quite a common approach nowadays apparently.
Thank you for your comments about my pic! I am actually hairless on my face too so all the facial hair you see is due to the magic of makeup! Have you heard about the “Look good, feel better” workshops? Worthwhile signing up for one at some point when life is a bit calmer. Everyone seems to enjoy them a lot.
Like you, I feel very young at the oncology unit, I bought a lot of really flowery clothes after my diagnosis and I love to bring a bit of colour among the mainly beige world of cancer patients! It sucks to have cancer at a young age but I think that it must be harder in many ways for older people.
About photos, here you can see one of a woman after a mastectomy on one side:
And here are some pictures of reconstructions with implants:
There are many more. What I understood so far is that with the reconstruction one can get a really fantastic result with clothes on, which is already a big thing because, I don’t know about you, but I spend most of my life with clothes on!

Hi ladies,
May I join? I may make you feel even younger as I am the grand old age of 46 and the one perk of this situation is being called young by the doctors (in cancer terms).
My mastectomy is on Tuesday and I have seen it coming for 5 months now. I don’t have full blown cancer I have intermediate grade DCIS so I am one of the “lucky” ones . It was caught after an invite for an early mammogram (trial in our area for 47-49 year olds and I slipped in somehow).
I have spent 5 months (poss too long!) researching recons and waiting for appointments with different surgeons and have got so stressed. But now it is here I am calmer , just scared. I am so glad I don’t have to go through Chemo and keep reminding myself that’s why I am having this op to avoid the chance of needing it. However it messes with my head that I am not even ill and could possibly not even become ill but still it has to come off.
The thing I am most worried about is depression afterwards but even that is a small price to pay compared with what you are going through.
Got my blue dye injection tomorrow, no turning back now! Good luck to all of you and I will let you know how it went, or will try (I might forget!)

Eozev and Captaininvincible,

Good luck for your ops tomorrow. If you can please do let us know how it went, we’ll be thinking of you.

Captaininvicible, I felt a bit the same way about the decision of doing the preventative surgery on my healthy right breast before I knew the result of the genetic test (which only came back two weeks ago). I was resolved to have it out anyway, for several reasons. You were lucky that the mammogram picked up your problem, I had one last May, my tumors were already there, and the mammogram didn’t detect them. Even after my diagnosis, when I had two masses of 5 and 2 cm next to each other, the mammogram couldn’t see them. My surgeon told me that the mammogram doesn’t work for many young women so I have little faith in early diagnosis of breast cancer in young women. also, I know of people who were diagnosed very early, had a very small tumor, which was treated according to all modern standards in good hospitals, and still went on to develop metastasis after several years. So treatment is very good, but it’s not bullet proof. and especially in young people, breast cancer just has too much time at its disposal for coming back. So I personally believe that preventative surgery is the best option for young women, if they can live with well with the consequences of surgery. reconstructions have a much better chance of looking really good when the surgery is done on a healthy breast, especially if you don’t need radiotherapy. They really can look as good as new then. and I guess that also the recovery from the op is generally easier on a person who hasn’t been weakened by the chemo.
And yes, you’re right, it is a good idea to do everything possible to avoid not only the chance of dying of cancer young but also the chance of having cancer treatment. I am just trying to start to recover from 4 months of chemo, I was lucky in that I didn’t have any serious problem during it, but even so it is a very very tough thing to withstand, especially because it’s over a prolonged time. So yep, I’m going to chop both breasts and hopefully my ovaries off as well, I’d rather live with the symptoms of early menopause than risk another cancer.

I am also a July Mastectomy lady!!! I am 34 with a daughter of 8. I am having a Left side mastectomy and lucky for me I didn’t excercise that Mummy tummy off, so I am having a DIEP. I go in on Sunday 10th July with my surgery happening on Monday. I have been told to expect a week in hospital, I go for my pre-op on Friday and they have told me to expect a long appointment with photos etc all being done at this stage.
Things have moved forward very quickly for me and for that I am grateful as to me the waiting is the most difficult thing. All the tests on my tissues will be carried out post op and I will then know where I am with everything. I have been told as soon as I have recovered from my operation my chemo will start.
It sounds like a crazy statement, but I really can’t wait to get started as I believe that brings me closer to the time when I can finish all this treatment.
I have a tattoo around my tummy button so I will wait with bated breath as to where my pink lilys will end up!!! My PC is a lovely lady who assures me wherever they are she will make sure it looks fantastic. So good luck to you all and will be interested to hear what decisions you make, take care x

Hello this is my first post. I am 46, single and live in Norfolk. I was diagnosed with bilateral breast cancer 9th June 2011. I had bilateral sentinel node biopsy 21st June which mercifully showed no cancer spread. I am having bilateral mastectomy Monday 11th July 2011. I can hardly believe it is me sitting here typing this! I found a lump in left breast, saw my GP and was seen at the Breast Clinic at the Queen Elizabeth Hospital in King’s Lynn, Norfolk within a week. The lump turned out to be a benign cyst but underneath in both breasts was calcification which showed on the mammorgram and ultrasound scans. Finding that cyst and acting on it quickly has quite possibly saved my life. Left breast has DCIS high risk 2cm tumour. Right breast has DCIS intermediate. Today I have been to see photos of reconstructions - not bad. I am having immediate reconstruction with expanders initially then silicon implants in approx 9 months. It was a difficult decision to decide whether to have reconstruction but I felt that if the sentinel node result was clear then I would as I then had to only go through fairly minor surgery later to have the implants inserted.
Toothfairy I look forward to hearing where your tattoo ends up!XX

Hi all,
just wanted to send you all love having been where you are now in March. I had bilateral mx with no recon. It’s a bit of a slog but it wasn’t as bad as I was expecting it to be, and I’m feeling great now after 4 months.
The site mentioned earlier is breastfree.org and it’s well worth a visit even if you don’t look at the photos. There’s stuff about recon, and also about alternatives. There are also stories from several women in different circumstances. You can avoid the photos altogether - most of them are after healing, although there’s one set of immediately post-surgery ones. I personally found it very helpful to prepare myself, though it’s a personal choice of course.
Although I’d rather have kept my breasts, I’ve not had a real problem with my scars which really surprised me, and I think preparing myself for how I’d look helped. I’ve used Bio Oil, and the scars are looking good and the swelling and puckering has reduced lots. I did ask for minimal skin to be left, as I was 99% sure I didn’t want recon by then, so I’d advise you to talk to your surgeon about that - a few people seem to be surprised by how much is left afterwards.
Wishing you all lots of luck, and feel free to PM.

I asked my breast care nurse about using Bio Oil to help scars heal nicely after my mastectomies. She said it was probably best to avoid Bio Oil because it contains oestrogen and to use vaseline or any ordinary moisturiser to look after the skin. This rather surprised me as I thought Bio Oil was for healing scars. What do you think?

Kattie, it might be for healing scars but if it does contain oestrogen it might not be a good idea to put it on your breasts if your tumoural cells feed on oestrogen (mine do). Do you know if your cells have the oestrogen receptors ?
Also, may I ask, are you having radiotherapy after your surgery ? I would love to have immediate expanders put in but there are issues with the radiotherapy which I certainly will need.

Hi all,
Can I join you too? I’ve topped captianinvincible-I am 48 and just qualify as a young woman in this world!
I was diagnosed on the 23rd May and am having my mastectomy on the 12th July. I have already had a sentinel node biopsy which found a small amount of spreading in my lymph nodes so I will also be having them out on the 12th. Chemo is due to start round about the end of Aug.
I dont know about anyone else but it’s really hard to say how I feel as it changes almost from moment to moment it seems!
I just want to start all the treatment and get closer to putting all this behind me.
Thanks for starting this thread, hopefully we can all support each other through all this x

Hi Ladies

Can a man join in?

My wife (who is 44), found her lump in March and after a whirlwind of visits, started her chimo - 4 FEC , then 4 Tamox.

We really hoped the tumour ( 27mm at discovery and oestrogen dependant), would shrink and avoid her having to have a full mastectomy, but after her 4th chimo the consultant said that it would have to be completely removed at the end of the chimo.

In fact the tumour has shrunk - my wife cant even feel it now, and an MRI scan confirmed it. So it seems so unfair that she has to have the full mastectomy. We got our hopes up I think and when told it all had to go it was a bombshell.

We had read so much about how full mastectomy was the last option and everything that it seemed like my wife was the only one having it removed and everyone else was having lumpectomy’s. Reading your comments I see that there are lots of young women having their breasts removed.

Has anybody got any comments please, on why the doctors decide that some have their breasts removed while others dont? The consultant said that my wifes tumour was kind of star shaped and went quite deep, though in fact it was still only one tumour.

Our treatment is taking place in France , where we live.

I wish all of you all the very best with your ops.

Welcome everyone to the thread ! I am pleased that there are several of us so that we can share the journey.

House Hubby, I am only aware of some of the criteria for deciding between a lumpectomy and a mastectomy. In my case it was because the cancer was multifocal (2 lumps next to each other) and because I have a gene mutation which puts me at risk of other primary cancers in any breast tissue. So I will have my breast removed despite what they call a complete response to the chemo, which means that the lumps have completely disappeared with the chemo (based on the MRI scan I did at the 5th cycle, and MRI can’t be wrong, I am a physicist so I understand that much). As I understand even if the lumps have totally disappeared like in my case, there can always be cancerous cells left so I am very happy to see it go.
If breast conservation is a big priority for your wife, I would suggest getting a second opinion because if your case is borderline it could be that a different surgeon would suggest a different operation. It is also possible that the grade of the cancer is a criterion. In young women it tends to be more aggressive.

Hello Barbwill,
I don’t know if my tumoural cells have the oestrogen receptors, my nurse just said not to use Bio Oil.
No I am very lucky in not needing radiotherapy or chemotherapy treatment at all. My sentinel node biopsy results were clear of cancer so I am going to have bilateral mastectomies which will remove the cancer. I am blessed to have this result.
It’s so good to know you and all the other lovely people on this site. XX

Hi House hubbie,
Don’t know if this helps at all but mx is also dependant on where in the breast the tumour is-mine is only(I say only!) 18mm but because it is under my nipple the only way they can be sure of getting it all out is to do a total mx on that side. The breast size also affects whether or not they do an mx, mine are quite small so a lumpectomy would leave me very disfigured-hope this helps.
Also thanks to bubbletrouble- it is great to hear of someone recovering and doing well-sometimes it seems it is a sea of doom and gloom as they, understandably, have to tell all risks possible complications etc- I’m up for hearing some positivity personally so many thanks x

Thank you Ladies for the very helpful comments and taking the time for us.