prophylactic mastectomy

Hi ladies,

Is there any of you who have taken the decision to remove your other good breast and gone through the prohylactic mastectomy? What made you decide? Those who have mastectomy of 1 breast are normally given tamoxifen or other aromatase inhibitor to protect the other breast. What medication were you given after the prophylactic mastectomy?

That thought has crossed my mind in view of the side effects of the medication which we have to take for years.

Miss Piggy

Hi Miss Piggy,
I have decided to have a prophylactic mx and am at the moment waiting to see a plastic surgeon to discuss recon.
I had a mx last September after 3 surgeries which did not get a clear margin. On the third surgery they found lobular cancer which they had not expected to find. I was more than happy to have the mx and in total I had 11cms of cancer both ductal and lobular.
Luckily out of 11 nodes removed none were affected thank goodness. I had chemo and rads and am now just over a year on from dx.
When they told me I would need a mx the first thing I said was good, can you take them both!! I really didn’t want the bad one and although the good one was clear, because I had to have an MRI scan to check for lobular that side, I don’t want that one either. I look at it as a time bomb waiting to go off and I really want it gone as soon as possible. However, my lovely BCN and surgeon advised me against it at that time.
Throughout my treatment I have been adamant that I want a prophylactic mx and my onc and surgeon were quite happy for me to have one. There is a slightly bigger chance of lobular returning the other side although there is nothing to say that it would.
I am now having to make the decision of do I want recon or not. That would be done at the same time as the mx and I would have fat removed from my overlarge tummy to make new boobies. Great, but a big op and I’m not sure if I want it.
I am on tamoxifen at the moment and will be for the next few years. I don’t think that will change if I have more surgery.
Hope this helps,
Love Jane xx

Hi Miss Piggy

I had a left mastectomy and full axillary lymph node clearance and a right prophylactic mastectomy 13 months ago.

I had to make a strong case to my surgeon and Oncologist about why I wanted it done. I too was diagnosed with lobular cancer. I was 45 years old so too young for screening but was told that lobular cancer doesn’t always show up very well anyway. I’d done breast checks and I couldn’t feel a thing. I’d be having some possibly menopausal symptoms and was put on HRT and then the tumour grew like wild fire in less than 4 weeks.

What made me decide was that when I went to the GP and then the first surgeon neither of them thought that the massive tissue thickening was cancer. In fact the surgeon thought it was an abscess until he saw my mammogram and quickly changed his mind. I had some chemo first and the tumour shrunk to about 3 cm and then two doctors in the hospital couldn’t feel it on examination. I knew exactly where it was so could guide them.

My surgeon explained that the lobular cancer i had was multi-focal (in more than one place) and that basically those areas would have been difficult to detect until they joined up. I was told that an MRI would pick that up and that I would be offered that every 2 years.

So I decided that I did not want to take that risk and be worrying every 2 years and in between times about the other breast. I also had very large breasts and I didn’t know how I would manage with one and such a large prosthesis as I was already having back problems from the weight of my breasts.

I have not regretted my decision for a single second. I’m not going to have a reconstruction as I’ve had a lot of surgery in the past few years and can’t face it. I have my prostheses and feel great when I wear them.

Everyone feels differently and you need to make the decision that feels right for you. I had a long talk with a nurse on the helpline which really helped me enormously to be clear about what I wanted and why.

take care
Elinda x

I didn’t respond to your other question. I am currently on tamoxifen. A mastectomy isn’t a 100% guarantee that all the breast tissue or every cancer cell is removed and hence why you may still be offered radiotherapy and chemo after a mastectomy plus hormone therapy if appropriate. Yes there are side effects to treatment but that’s got to be preferable to cancer.
It sounds like you really need more information before you make any decision. Everyone has their own treatment plan and there are different types of cancer etc. I’d strongly recommend talking to someone on the helpline first and then to your Doctors.
Elinda x

Hi Miss Piggy

As Elinda has kindly mentioned, you may find speaking to someone on our helpline useful, you can call 9-5 weekdays and 9-2 Sat on 0808 800 6000.

Best wishes

Many surgeons will be opposed to removing a healthy breast unless theer is good reason. Worrying about taking meds for a few years wouldn’t class as a good reason for having this type of surgery! Unless you are at high risk of recurrence or have a genetic mutation, I think you will struggle to find someone who will do this procedure. As Elinda said, you need to give this much more thought-and don’t be surprised if a surgeon who is prepared to consider it, will insist on you being psychologically assessed before any decision is taken.

Incidentally, I had my second breast removed as a prophylactic measure as I was BRCA2±and still developed metastatic diseases, so even on health grounds, there are no guarantees that future problems won’t arise.

I too think about prophylactic mx on my good side, had mx with ld flap recon and ANC this feb for >7cm ILC multifocal & DCIS. So far the “good” side has not been checked, the ILC did not show on the mammogram but was visible on the US. The recurrence for lobular depends on which study one reads, some quote the risk of up to 29% which seems rather high. My surgeon said it was a small risk and the onc has recommended MRI’s for follow up. Tina

Hi Miss Piggy and others

I was advised to have a mastectomy on my left side as I had widespread DCIS and I asked my surgeon to remove my right breast at the same time as I thought it would get rid of any worry of getting bc that side in the future and also would make me symmetrical. I have 2 young children and their father died 5 years ago so I was adamant that it was more important for me to stay alive than to have any breasts, so my surgeon agreed to do it. I am currently undergoing reconstruction using tissue expanders, which will be replaced by implants at a later date. Initially I thought of having the tummy flap reconstruction but when I realised how long the surgery was and what it involved, I opted for the implants. I must admit there have been(and still are) times when I question my decision to have the prophylactic mastectomy, but I am pretty sure it was the right decision, to erase any future worries.

Sorry for the ramble but I hope this may help you in making your decision. Good Luck,Samm xx

Dear all,

Thank you for your postings and valuable advice. You are all so courageous.

At the beginning my DCIS was not detectable or symptomatic, just bleeding from the nipple. Before the doctor confirmed that it was DCIS on the left breast I had two biopsies done plus 3 scans incl MRI and he then told me that the only treatment is mastectomy of the left breast. No radio or chemo therapy required, he said. But the radiologist said at that time that he also saw a slight calcification on the right breast but he’s not too concerned about that.

Because everything was new to me then, I asked the doctor if it would be a good idea to remove the right breast at the same time of mastectomy. He flatly told me that it was absolutely not necessary.

But as I go deeper into the learning curve and about the breast cancer, I realised that we would be depending on the medication for a long, long time to protect the other breast. I can put up with the hot flashes and sleep problem, but not the return of uterine fibroids, again, because of the tamoxifen.

I have been told by my doctor to change to arimidex in a couple of months. I know that it would decrease the bone density. As I am very slim built with low body mass and on my last bone scan I was slightly below normal, I just cant afford bone mass loss. My BC doctor told me that I could take bisphosphonate to protect the bone. Having learned that bisphosphonate does have some side effects like irritation to esophagus and/or gastric, which may be bad for my gastritis, I am even more disheartened.

To be honest I am also worried about the calcification on the right breast, incase it develop into something. But you are right, that most doctor will insist on breast preservation. My current doctor told me that the medical attitude has changed for longtime towards breast conservation.

I wish that I insisted on having bilateral mastectomy at that time to give me a piece of mind without having to take so many medications. I am seeing the doctor and will discuss this again.

Thank you all for sharing your experience.

Love to you all

From your posting I assume then you are post menopausal and hence the switch to different meds?
I am wondering why you needed a full mastectomy in the first place if you don’t need rads or chemo - excuse my ignorance on this one.

bw, Elinda

Also to add that they were going to switch me from tamoxifen to an aromotase inhibitor but probably won’t do that now. I’ve had a lot of back problems and stiff joints in the spine so the Onc said for that reason I’d probably stay on tamoxifen for 5 years. I would definitely speak to your Onc about your concerns so you can be reassured and given the rationale for whichever medication you are given.

take care, Elinda

good luck

Hi, I had a phrophylactic mastectomy of the left breast when multi-focal lobular and ductal cancers were discovered in my right breast nearly four years ago. When the results of the path report came back it showed that I also had ductal cancer in the left breast and when I remarked that it was a good job I had had it removed as well the breast surgeon, nodded and said it was. I have not had a reconstruction having had a lot of surgery in the past and can’t face it at the moment and don’t wear any prosthesis either - I just can’t see the point! Am I the only one?

i am having bilateral prophylactic mastectomy surgery in about 6 months… i had bilateral BC 2 different primaries 3 years apart and both were treated surgically with WLE.

since then i have discovered i am a BRCA2 carrier so this has been the reason i have decided to have the surgery… a wee part of me is still not too keen on the idea and think that i should just wait to see if i get BC again and then have the surgery at that time and in the meantime im getting my ovaries out which will not only reduce my risk of ovarian cancer but cut my risk of further BC in half.

at our unit you cannot have a prophylactic mastectomy unless you have been counselled by a psychologist, its only on their recommendation that the surgeons can go ahead.

if you have no family history and a small low grade cancer then statistically you are more likely to be hit by a car than get a recurrence, but for some people the anxiety and fear of BC coming back is too much.

elinda some people who have widespread DCIS that covers a number of areas or is sprinkled throughout the breast will benefit from a mastectomy as they would have to remove so much tissue… having mastectomy normally negates the need for radiotherapy as the radiotherapy is to help prevent recurrence in the remaining tissue (no remaining tissue after MX) chemo therapy isnt given to women with DCIS as there isnt any spread to the nodes because it hasnt become invasive it is still contained within the ducts with no opportunity to spread… hope that helps explain it.

and miss piggy i agree with elinda if you prefer to stay on tamoxifen then tell them you want to stay on it… at our unit you wouldnt get an AI for DCIS its only given to high risk women or women who are intolerant of tamoxifen.


Thanks Lulu for the explanation, that makes perfect sense. I’d totally forgetten that the ‘IS’ stood for in situ. Also understand why a mastectomy might be needed in those circumstances from what you’ve said.
thanks Elinda


I was dx in 2007. ILC left breast. Had WLE then mast as did not get clear margins.
In July 2009, after 18 months of counselling, I opted to have prophylactic mastectomy of the left breast.
My reasoning for this was first and foremost my distrust of the screening methods.

I presented in 2005 with a small thickening in the right breast. mammogram negative. Nothing seen on scan apart from a small cyst adjacent to the thickening. They (radiologists) convinced me that there was no thickening and that what I could feel was the cyst. Said cyst aspirated and results negative. Was sent away and told not to worry.

2007 said thickening felt bigger but didnt worry too much as “just a cyst”. Delayed going to the clinic until one morning it seemed to have grown to the size of half a boiled egg. Rushed to the clinic.

Mammogram negative
USS showed thickened area so core biopsy done. Radiologist told me that she was 80 - 90% certain it was normal thickened breast tissue. Imagine my surprise when 2 weeks later they told me it was cancer!!

At the time of dx they (Dr and BC nurse) told me “it’s very small 1.3cm” - “It’s a very good prognosis” - “unlikley to need chemo” blah blah blah.

Had WLE tumour actually 3.5 cm ( 3 times bigger than uss said) close to skin and chest wall - Had mastectomy, chemo, Tamoxifen and now on Arimidex.

Was told that Lobular cancer carriers a higher risk of cancer in the remaining breast but that oestrogen inhibitors (Tam & Arim) would protect the remaining breast.

Was offered follow up (annual mammogram) which I had but was not reassured at all.

Second reason

I was adopted at the age of 6 weeks. I do not know my family history. Was told that this was not really important as only 5 -6% of all breast cancer patients carry the BRCA gene. Was told that it wouldnt be helpful to test me for it.

This said, my friend and colleague was advised to have bilateral mastectomies and surgical removal of ovaries following her diagnosis, as she had two family members on her mothers side who had had BC. This was despite the fact that they did not identify the BRCA gene on genetic screening.

I was at a loss to understand how they did not think it very important to know my family history. I felt at a distinct disadvantage.

Also my mother (not birth mother) died of breast cancer 28 years ago. She was 48 years old and had been neglected by the GP’s who basically labeled her as neurotic and only saw fit to refer her to a specialist when her breast practically turned itself inside out. Within 4 months of diagnosis she had a dreadful fungating breast carcinoma. I miss her terribly every day.

My prophylactic MX showed some benign changes but no malignancy. Still, I do not and will not regret this decision. My surgeon was supportive as he knew that it was not a knee jerk reaction. I could not live with the anxiety associated with that breast and dreaded showering in the morning. I have recently had reconstruction and am delighted with results.

It’s a controversial step and most breast surgeons are advocates of breast conservation. I had 18 months of counselling in order for me to sort my head out and understand that this decision was the right one for me. The clinical psychologist agreed that my fears and anxieties were both valid and rational.

It’s worth asking for a referral to counselling services. It really does help you to sort out and make sense of the thoughts flying through your head. Some women will become less fearful given time and will decide against further surgery. For others that fear does not go away.

Wishing you all good things

Monkey Girlx

Hello I had a prophylactic left mastectomy Dec 2009. I do not regret it, Having been a size 34e since my teens. (it has’nt been a good recovery) but it is so good to be balanced…in body not sure about my mind! I wear a lymphodeama straight jacket still but can dress and use scarfs if I feel they are needed. I am not inclined to walk around unclothed I must add after reading this back before I press the submit button.
The funny thing is my two grandsons totally accept the change in their cuddle cushions the youngest does look and I do mean look and ask why am I nacked (my bathroom is used as open house at times living in a bungalow) I just hope that it helps you Anne.

I have both my breast removed for risk reducing reasons, all the females in the family had died of bc. I don’t regret it. I had my reconstruction using the stomach muscles which was a huge op - 13 hours. Quite poorly afterward but got through it. It is now 6 years since my surgery. The boobs are very natual to look at but obviously its the loss of your own nipples which is the problem. The reconstructed nipples aren’t brilliant. The only real problem is getting a really good support bra or else you will go out at the sides.

I have had this to my left breast after initially having a small low grade cancer in it 8 years ago. Last year I had multifocal/multicentric cancer in my right breast. In all honesty the prophylactic move has been anxiety driven - all the tissue taken was clear. But having gone through bc twice I wanted to take this measure to get rid of painful worrying tissue.

The doctors suggested it rather than me having to chase it.

I wish I had done so 8 years ago with first bc but of course hindsight is a wonderful thing isn’t it!

Listen to your intuition and go with it!

I had mx to right breast in 2004 after being dx with IDC, DCIS and pagets disease.
In fact, the needle biopsy was normal, the mamogram showed small area of calcification (no tumour)and the ultrasound was negative. But I could feel 2 small lumps. I underwent guided wire biopsy and was told that would be fine, but in fact showed DCIS. I insisted that there was 2 tumours as well - I could feel them- and I wanted a mastectomy.
I was told not to be silly,just needed localised excision.
The pathology came back - DCIS and IDC(5mm) -tumour number 1.Because the DCIS was so widespread(no clear margins) i finally got the mastectomy I had asked for in the first place.
Thank goodness I did - the mastectomy found the 2nd tumour, and also Pagets disease of the nipple.

I therefore insisted on prophalactic Mx because so much of mine had not shown up on scanning (39 yrs of age and therefore dense tissue I guess) and was told to wait at least a year.
Although I didn’t think it at the time, it was good advice because I think it was an understandable knee- jerk reaction to the situation at the time.

I went through the treatment,radiotherapy, tamoxifen and oopherectomy and to be honest,that was more than enough to deal with. That time gave me the time to get through the treatment, deal with the psychological effects of having a mx etc, so that by the time a year had gone, i had had a good time to deal with everything and make a decision that was right for me at that time.

I underwent a further mx and bilateral recon with implants (it failed) and then 2 years later had to go through another “double mx” when i had the implants removed.

That was alot to deal with and I had no psychological treatment for any of it, so I think the ladies who have mentioned seeing a psychologist before is very good advice. I wish I had, because psychologically it hit me like a truck, even though it was what I had wanted!
I have now been breast -free for 2 years (since the failed recon was removed) and now cope great with prostheses. I will not have any more surgery, and time is a greast healer.I have no regrets about my decision.

I truly wish you well (and all you other brave ladies)with your decision, whatever you decide to do.
Remember that everyone will have their own reasons for doing it(or not) and you have to make the right choice for you.