Have you requested a double mastectomy and were turned down?

Gday everyone!

Now I was hoping to hear from any of you out there who have been in a similar situation to me asking for a bilateral mastectomy and either got the double mastectomy, or were refused like me? Shouldn’t it be our choice? What do you think? Please tell me what area you are from in your reply please as some areas may be different to others?

This is my story:

My diagnosis was hampered by having had lumpy breasts since breast feeding my children. I have breast cancer in my left breast ( 3 lumps and one in the armpit), and am scheduled to have a mastectomy in early march after 6 sessions of FEC chemo.

I asked my surgeon today if I could have a double mastectomy because I felt that I could never be sure if I was feeling my normal lumps or cancer lumps in my right breast and didn’t want to do this all again on the other side in a few years time.

The surgeon said that she wasn’t allowed to give me a bilateral mastectomy if my right breast was healthy due to the NHS not paying for it. Wouldn’t they be saving money if they did it as a prevention?

I would be grateful for your comments please?

Many thanks

Lone x

Hey Lone, that’s a toughie.

I’m not in that boat, but I have a sneaky feeling from somewhere that if NOT having the extra surgery were having serious adverse effects on the quality of your life, even for psychological rather than physical reasons, it could possibly be done on the NHS. I could be completely wrong on that, so don’t quote me. I’m sure others more knowledgeable will come along and answer that one.

That said, you might find that you don’t feel the same tomorrow, next week, next month, so you could probably do with giving yourself time to get your head round the cancer diagnosis. It’s such a huge atom bomb in our lives that changes absolutely everything, you might benefit from letting the dust settle a little from the explosion before reaching any conclusions.

You might also find it very helpful to talk it over with the helpline on here, or Ask The Nurse if you’d rather to it by email. Having an impartial and uninvolved but very informed person to bounce ideas off can sometimes be really useful to give you an alternative view.

I’m not saying you’re wrong, I’m not saying you’re right - that’s not for me to say - but taking the time to look at it from all angles might help you, and help you feel confident with whatever you do conclude.

I was diagnosed in Aug 2009 and I asked for a double mastectomy and was turned down as they said my right breast was healthy. I went through the Tac and the rads. In Sept 2010 I was referred to have reconstruction and I was offered the tram flap. I decided that I wanted to be symmetrical but I didnt want to go through the long operation. I spoke to my bc nurse and my own gp telling them that I didnt want the op as I have been told that my bc will come back and I dont want to go through the ops to have to do it all again at a later stage. They referred me to a counsellor who I chatted to about my feelings the way i feel about my body etc… To cut a long story short I was told yesterday that subject to funding I have my wish and I will be having my left breast removed. So if your prepared to fight your corner you should eventually get what u want. I have also decided not to have any reconstruction and go flat chested and bear my scares with pride. Sorry to rattle on. Hope this helps.

Hi KulaKatz - sorry that you are in this position. My situation was that I was diagnosed end of 2009, had 2 WLEs which failed to get clear margins, was then recommended Mx. I asked for double Mx because I was anxious about recurrence & asymmetry (was large breasted - 42e). I did not want any reconstructions - so what I wanted was relatively less costly than asking for a single reconstruction (lower future maintenance costs as well + no more mammograms). I had several conversations about my request with BCN and surgeon - I think I made a good case, which I had thought about quite carefully - also the surgeon asked me about cancer in close relatives (my father has prostate cancer). It was suggested that I should have single Mx followed by another after a year or so depending on how I felt, but I was clear that this was what I wanted and so it was carried out. I didn’t feel I had to push too much for this so I am surpised that other ladies have had this refused.

I’m nearly a year on now and I can say that it was a much bigger decision than I realised at the time. I do miss having my pre BC healthy breasts - but that’s what all of us feel. However, I would make the same choice again in a similar position. It doesn’t make coping with cancer diagnosis any easier, & it doesn’t protect against recurrence or secondaries. Coping with body image, prostheses etc can be a pain - but less so during winter.

I live in Herefordshire and had my treatment locally here.
Best wishes with your negotiations & decisions…
Maggyx

Thanks guys for your posts. I am determined to have a double mastectomy and will be trying to find out what I can do or say that may help me get what I want. So anything you can think of that would help me, I would be so very grateful?

I have huge boobs and the thought of having one left is a nightmare for me. I was guttered when they refused me. I think I will be running around in circles with right boob feeling like a rudder and altering my balance.

If they left me with one breast I am worried that I will turn paranoid go to the Gp every week to ask them if my lumps are cancerous or not. Do you understand?

The Breast cancer nurse said that having the ‘healthy’ breast off does not mean a guarantee I wont get breast cancer again. She said that it would be unlikely for me to get breast cancer in the other breast. It is more likely to be in the same breast. But I have heard of so many people who say they have had breast cancer in their other breast at a later date. What do you think about this?

Please let me know what your thoughts are? Even if you think I am crazy to want a double mastectomy. I have little support from home and family and need help going through all this.

Many thanks,

Lone x

If you are as determined as you sound then I think you should put the emphasis on the imbalance in your body after the mx and the trauma this will cause rather than your fears that the cancer will return. It is much easier for the health professionals to argue against the healthy breast being removed than it is to gauge your psychological feelings on being left with one boob.

My case was different to yours in that I had residual cancer in both breasts even after lumpectomies so there was little choice for me. Be warned though that it is major surgery and that recovery takes time.

I hope that in the end you get the outcome that puts you at ease.

Rose

Hi Lone

I requested a double mx and was given this. I did have to make a strong case for it. You don’t say what type of BC you’ve been diagnosed with or how old you are and whether it was picked up in a routine mammogram or you found it etc.

My situation was that I had lobular cancer which is notoriously difficult to see on mammograms. I was also 45 so wasn’t in the programme anyway, did breast checks but couldn’t feel anything until it became very large - again not uncommon with lobular. In fact the only way to be sure the other breast was clear was to have an MRI with contrast.

I basically said to the surgeon that they weren’t going to be giving me MRIs every year which they agreed they wouldn’t. That I had checked my breasts but been unable to detect anything until it was large and had gone to my lymph nodes.

I was told it would make a reconstruction more difficult as you’d be looking for muscle/tissue from elsewhere in the body for two rather than one breast or even if you had implants then two long operations.
I didn’t want reconstructions anyway. But the surgeon did not say at anytime that I would be refused those if I wanted them.

I’d recently had a lot of other surgery, gynae/bowel and so I said I’d rather just do this and not have to face more further down the line if it developed in the other breast.

I was also very big busted, 40 G so I would have been very uneven and needed a huge prosthesis. I already had back problems that would have been exacerbated.

I don’t know if any of the above helps. It might be useful to list all your reasons on the forum here so we can help you make your case to the surgeon.

I did speak to the BCN first and it was a good tactical move. Might be worth trying to get her on side and then she can also speak to the surgeon on your behalf.

I’ve never regretted it and know it was the right decision for me.

take care, Elinda x

Hi Lone

Right from the start i said I wanted the other side removed too and the consultant said that we’ll deal with the bad side first and then the other side at a later date. He kept to his word. I never had to fight for it and had it in April 2010 (I was diagnosed in 2007 and had a mastectomy on affected side in Nov 07). I had quite lumpy breasts and also my mum’s sister had had breast cancer and so had my dad’s sister at quite an early age. I was determined I was doing this for medical reasons.

Ruby

It is certainly possible to get BC in both breasts. I have a friend who had ops and chemo when she was 30 and ops and chemo again last year (at 46)for primary cancer again in other breast.

As others have suggested, set out all your medical reasons and press ahead if that is going to make you feel most comfortable.

Good luck.

Stella

I work in the NHS and as far as I can work out under the NHS they are not to operate or remove healthy tissue. Therefore they are not suppose to remove the healthy breast, unless there is very strong evidence that it will be affected, this would mostly likely to be if you had the hereditary BC gene which makes it more likely that both breasts will be affected.

It is true that you can get BC in the other breast, but you are equally likely to get it in other places like liver, kidney, lungs, bones or brain.

I think that is why most ladies will not have a double MX unless there is a very strong possibility of both being involved.

Hi Lone

Im sure we meet this Tues at QA on the pampering session!
I asked for a double masectomy was given the OK by the counselor, but the Surgeon said " I had more chance in getting cancer in other parts of my body than I did in that breast so he would not do the double mx.
Like yourself I said I do not want to go down this route again in a few years time hence opting for the double mx bearing in mind I had BC 19 years ago and it reared its ugly head again last year.
Im sure its all down to funding targets and money!!!
I Live in Cowplain and attend Queen Alexandra hosp Cosham Portsmouth
Take care
regards Maria :):slight_smile:

As Elinda said, if you have Lobular cancer it is easier to arrange to have a bilateral. My surgeon suggested it to me once he realised that I knew the implications of being diagnosed with Lobular. I knew straight away that I wanted one . When the results came back for my ‘healthy’ breast it turned out that there was LCIS in it. In the surgeons words “it was a time bomb waitng to explode”. I’m so pleased that I trusted my instincts.

I also asked for a double mastectomy and was refused it by the Consultant who said he wouldn’t consider it. The Breast Care nurse also said that I’d feel different in 2 years. I hate having one boob and hate my Prosthesis even though it is comfortable. There are days though when I’m quite sensitive and would love to go without my Prosthesis. Obviously you can’t go out with one boob and look ridiculous. I’d be quite happy flat chested. Keep fighting if you really want it done, it would be so much better than having to consider it later and go through it all again xx

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Lynberi - you’ve hit the nail on the head here. We’re all different and that’s why the surgeon and oncologist should talk it through with you. Your nurse just assumed how you’d feel in 2 years and was wrong.

I was told by one BCN that they rarely did a risk reducing mx and even if it was considered that I would have to have a psychological assessment. The reality was that I had a half hour appointment with both the surgeon and oncologist who asked me lots of questions, listened to how I felt and made sure I understood all the implications of having the double mx.

I think Norberte’s given you a lot of good advice. If you get on well with your GP it might be good to speak to her/him. Also think about giving the helpline a call at BCC.

take care, Elinda x

Thank you so much everyone for all your comments. You have all been incredible and I really didn’t expect such a great response. Thank you sooooooooooo much!!!

Yes Maria, I do remember you! Take care honey.

Lots of love

Lone x

I was told 3 weeks ago that they wouldn’t do a double mastectomy due to cost, it not being essential surgery, and that I may regret it in the future. I told my surgeon that I definitely wanted it and it was left that she booked the time slot for a double and would talk to the multidisciplinary team and apply for funding.

I hadn’t heard anything and so I kept ringing the surgeon’s secretary to ask what was happening but got no return phone calls or information.

I had an appointment with the breast care nurse last thursday. She told me that she didn’t think i was going to be able to have the double. When I quizzed her about you ‘don’t think’ and is that a definite no, she said that the PCT were not funding any non essential ops and equated what I wanted to a male wanting to get rid of excess breast tissue!

When I pushed further, I found out that not only had they decided that I couldn’t have the double, no one had bothered to tell me and that they hadn’t even tried on my behalf to apply for the PCT funding!

The news got worse when I asked to talk to the surgeon as the surgeon had walked out the day before (for extenuating circumstances) and would be off for at least a month!!!

The BCN said that I would have to try and find a new surgeon to take me on and that I needed to do this as my surgery is scheduled for 2 weeks time! The hospital was in chaos and they were trying to sort out the surgeon’s case load but were struggling. As if I haven’t got enough stress on my plate?

Apparently because I have had my chemo first, I should have a bit of priority for having my mastectomy as it is time sensitive before the cancer starts to grow again, but the chances of me getting approval from a PCT panel for my double is impossible now!

I am absolutely flabbergasted! I feel very let down by the surgeon (because I told her in Sept that I wanted a double and I am only being told now that it wont happen and secondly, because she didn’t even try to apply to the PCT panel for funding for me).

I know a lot of people think that I am mad to want a double mastectomy. But I really don’t think I can psychologically cope with having a large, lumpy, painful breast left and put all this behind me. They can do nothing to convince me that I will not get cancer in this ‘healthy’ breast as the symptoms I have are similar to what happened in the other breast (which ended up with 3 tumours in it). They wont even give me a MRI scan. (no one has even felt my right breast since september!)

I feel that I would cope better with two scars, than one scar and a breast that I am so fearful about and yet this is not the argument that they feel is a reason for me to have a double.

I am almost 43. I have been sufferring with anxiety depression before all this happened and have not had permanent employment for nearly 3 years although I have worked. I have 2 young children and my own family are all in Australia.

I have had soooooo many complications with the chemo and as a result I am allergic to all dressings, I have a damaged left arm from the cannula chemo attempts, have had 2 picc line infections and I am on 2 injections per day of clexane (for the blood clots)and I just want this nightmare to be over!

I know that I want the double mastectomy and will keep fighting until I have it, but having surgery ‘again’ in 12 months time, going back on the clexane injections and going through the recovery etc after the operation and putting my family through more worry again and having more time off work then seems too much to think about.

In my head it makes much more sense and seems more cost efficient that it should be all done now! I am just so frustrated with the NHS system! I have no trust in any of them anymore! (my gp misdiagnosed and had experimented on me with large doses of hormones to stop heavy periods before all this started and may have contributed to the actual problem). I don’t trust the surgeon as she didn’t do what she said she would do and then has now gone AWOL. I don’t trust the BCN as i feel she has let me down big time with not telling me what was going on and not even helping me through all this STUFF!

& I am scared that I have only 2 weeks to be operated on and I don’t have a surgeon, a date or knowledge if I am to have a centinal node biopsey or what. I have no pre op date or surgery date either!

What a mess! How do you stay positive with all this going on and now it is school holidays and I have to pretend everything is fine and dandy around the kids?

Will keep you posted.

Thanks for letting me vent!

Lone x

Hi Lone,

Sorry to read what you’re having to deal with. Please do give the helpline here a ring tomorrow, they will support you through this. Lines open in the morning at 9am until 5pm (Mon - Fri) and 9-2 Sat. Calls are free.

Hope you get things sorted quickly.

Take care,
Jo, Facilitator

Hi Lone, so sorry it’s not working out as you wanted, I’m quite surprised by the reaction you got.
Firstly, see this link (look down the right hand side column for a summary) that explains risk but also gives 3 situations in which what’s called ‘contra-lateral mastectomy’ (i.e. on the other side from the cancer) is justified on a wholly risk-based assessment. You might qualify under that and you can use that. It also says how many people change their minds later though, so that is a further thing to take into account.

breastcancer.org/treatment/surgery/new_research/20100326.jsp

I’m about to see my surgeon (who’s been away since my WLE in mid jan) as I’ve been told I need a mx owing to the size and grade of DCIS I have - all of this was unexpected, and most of it wasn’t visible on the mammogram. My mother had a recurrence of bc in the other breast last year, having had a very similar situation to my current one at the age of 54, which wasn’t visible on the mammogram despite there being an area which didn’t feel right to her - that’s why she went to the doctor. The result of that was that she had IDC by the time it was visible. The new cancer she has is extremely aggressive G3, but as she was over 45 on her original diagnosis that doesn’t necessarily count as family hx apparently! I have come to the view, after a lot of research, that I would like a double mx, and I see the surgeon on weds but the nurse has told me he’s against them. I’ve never been offered an MRI which usually picks up the type of high grade aggressive DCIS that I have, so I’m going to insist that I have MRI before my surgery, and also MRI every time I have a mammogram. That is very expensive and might put them off! Another of my arguments is lifestyle, in that I do lots of outdoor things and feel that a prosthetic will often be in the way (I’m 38C so not small). I’d rather have the option of wearing nothing on top or wearing prosthetics if I want to. I’d worry about being lop-sided, but less so about being flat as I think that’s less obvious (I’ve also looked at lots of photos on line so I have some idea of what to expect. I’ve already been offered a reconstrucion - as I think everyone is provided it’s possible with treatment etc - so what’s the difference?
You could try writing down all of your reasons in a letter to the hospital. And I’m sure you’re allowed a second opinion, and can’t you choose a different treatment centre if you want to now? It might be worth investigating that, although it might be more difficult for you. Another point I would make to the hospital is the insensitive way in which this has been managed, which has added to your distress at a time when you need care and support.
Best of luck, let us know what happens. I’ll post when I’ve seen my surgeon too. Lynne x

Sorry Lone, just thought have you tried Patient Advice and Liaison at your hospital? Not sure what they can do, but they might be able to help in some way.