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Surgery - decisions decisions

18 REPLIES 18
Janet_BCC
Member

Re: Surgery - decisions decisions

Hi Mackay

 

Here is a further reply from our nursing team:

 

Very best wishes

 

Janet

BCC Moderator

 

 

The reason there is a difference in recurrence rate but not overall survival is because

women are more at risk of cancer coming back in the breast (local recurrence) if some breast tissue remains as is the case with a wide local excision. With a mastectomy where all breast tissue is removed this is much less likely. What’s important to remember though is that if someone does have a local recurrence after a wide local excision they can have it removed with further surgery (often a mastectomy) which is why overall survival is the same.

 

Talking with your specialist team about your individual case and future MRI/mammogram can help to clarify your follow up plan.

 

Cancer returning and the worry of detecting a possible recurrence early is very real for many women. Our information about follow up might be helpful

 

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/your-follow-after-breast-can...

 

If you would like to talk this through with one of us here please feel free to call the confidential helpline again. We are open Monday to Friday 9am-5pm and Saturdays 10am-2pm

 

0808 800 6000

 

Regards

 

Bluesky123
Member

Re: Surgery - decisions decisions

Thank you all for the replies, I have been reading them and am still chewing it all over in my mind.

 

Janet can you tell me why there is a difference in recurrence rates over a ten year period but not in overall survival rates?

 

One of the things about future lobular cancer detection is that I believe it can easily be missed in mammagram, and so can be larger when detected, yet post cancer treatment screening is by mammogram.

 

A also worry about how easy or difficult it would be to detect recurrence after mastectomy - how would I spot signs at an early stage.

 

Doea anyone know the answeres to any of this?

 

Thank you all for your support and guidance i the last few weeks 🙂

Janet_BCC
Member

Re: Surgery - decisions decisions

Hi

 

I have attached a link to the "Someone like me" service which the nurses have mentioned:

 

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/one-one-support

 

Very best wishes

 

Janet

BCC Moderator

 

 

Janet_BCC
Member

Re: Surgery - decisions decisions

Posted on behalf of the website nurses:

 

Hi Mackay

As others on the forum have said, making decisions about what type of surgery to have can be very difficult. Just to clarify, there is a small difference in local recurrence rates between lumpectomy with radiotherapy and mastectomy (10% over 10 years v 5% over 10 years) but no difference in overall survival rates.

You may find http://www.bresdex.com/index2.html helpful in explaining the differences in local recurrence between lumpectomy with radiotherapy and mastectomy.  The site also has other women talking about how they made a decision that was right for them.

You can also speak to one of our volunteers who will have had to make a similar decision through our Someone Like Me service or you would be welcome to call us on the helpline again to talk through your concerns.


keeks
Member

Re: Surgery - decisions decisions

Hi Macky

 

decisions decisions they are so difficult aren't they.

 

if you are looking at the stats they are too general and sometimes out of date, lets face it treatment has improved so much.

 

you could ask the doctor to put your individual details into their computer with your own specific details and it will give you the statistics relevant to your specific diagnosis.  Based on your details not overall. They take into account your age, type and size of cancer and give you very specific numbers with both treatments.

 

I did this when deciding on hormone therapy and found it very usefull when making my decision.

 

you have to make a decision you are happy with and if you are undecided then it's just extra stress.  I had a WLI.  Very pleased with the decision, ended up with a very cute dimple but it seems to be disapearing. 

 

good luck with this.

 

take care

 

Keeks

 

 

Donnaandfamily
Member

Re: Surgery - decisions decisions

Hi Ladies

I asked my oncologist whether I should have a mastectomy at the end of my treatment (op and FEC-T) rather than radiotherapy. He said the difference was 1-3% difference...........don't know if this helps?

xx Donna

mary32
Member

Re: Surgery - decisions decisions

Hello Jo and Macky

 

Mine was/is lobular too. Someone else on the forum the other day said that lobular is usually grade 2, I hadn't heard that before but mine was grade 2.

 

As far as time between dx and operation is concerned I had quite a gap as I had to wait to have mri scan and genetics testing so it was about 10 weeks in between but my surgeon had no worries about this and I had confidence in what he said. 

 

Mary

Jo1
Member

Re: Surgery - decisions decisions

Hi Macky,

 

I seem to remember we both have lobular cancer. We all have the difficult job of making our minds up when faced with this, trying to decide what's best for us. When will your op be? Mine is 12th June.

 

At the moment I'm tending towards mastectomy as my surgeon said they wouldn't know what they would find until they operated even with the MRI results, being lobular cancer. I was told they might opt for a WLE but it might be necessary to do a mastectomy. But I get the quivers sometimes and change my mind!

 

I had 3 WLEs on my other breast 5 years ago as they didn't have clear margins (plus another done about 12 years ago), and it has always been mis-shapen, which didn't matter to me all that much. I didn't know you could have extra tissue put in and it's unlikely after all the palaver that I would have bothered.

 

However, I had difficulties with my shoulder and couldn't move my arm far, which was very painful (especially for radiotherapy!), had lots of physio then finally got back more movement at a special cancer physio clinic.

 

I really don't want to go through any of that again, hence my wanting to opt for a mastectomy. I was offered a mastectomy after my second and my third WLEs and refused, However, we're all different and working out just what we think would be best for us is very difficult.

 

I can really appreciate what you're going through Macky. Tke care, Jo

Bluesky123
Member

Re: Surgery - decisions decisions

Hi ladies, thank you all for the replies. I'm told the cancer is lobular and is 11mm. I've had an MR scan. I did ask about indentation to the breast after WLE, and was told that tissue is moved, as you say, and that extra tissue can be used if necessary at a later date, taken from tummy for example. I haven't been shown any pictures or anything. Aesthetics does bother me but preventing it from reoccurring is much much more important to me. I'd really like to have the best peace of mind that I can after this, the anxiety over the last few weeks has been immeasurable - I have to do somethint to secure peace of mind, but at the same time don't want to go overboard. Impossible!

mary32
Member

Re: Surgery - decisions decisions

Hi Macky

 

Have you been told what size they think your tumour is and what sort of cosmetic result you could end  up with if you opted for a wle? These points should be factored into your decision making. When the surgeon removes  tissue from the breast they also 'shuffle' the rest of the tissue around to minimise the effect of the removed tissue. It sounds as though it would be  useful to have another discussion with your surgeon to help you make the  decision.

 

I opted for wle but the surgeon said that if I was unhappy with the cosmetic result I could then have a mastectomy. A reconstruction after mastectomy can give a very good appearance but there is a loss of sensation which some women find difficult to deal with.

 

Obviously all my opinions are from the  viewpoint of having a wle so are biased in that direction. However I do not regret my decision and if I get a reoccurrance I will still feel I made the  right decision for me.

 

Mary

ncscooby
Member

Re: Surgery - decisions decisions

Hi Mackey,
Just to give you an idea of time lines that I had, from the day of diagnosis to first surgery (wle and snb) was just under two weeks. I then waited 2 weeks for the results from this and once I got these it was just under one week until my second surgery.

I wasn't offered a masectomy, then and even now I will do anything to keep my breast. My tumour was thought to be 25mm, turns out it was bigger at 33mm, which is why I understood they didn't get the margins the first time.
I didn't think that they added on the amount of tissue they took to the size of the actual tumour to come up with a final size?

After my second wle I do have a slight dent which was upsetting in the beginning, however in comparison to having nothing there I'm ok with that. They have said that once everything is done they can look at doing something cosmetically if I am not happy.

Saying all this I still have to get results back from second wle which are hopefully going to be Friday - which will be a week since surgery.

Having read some ladies stories on here it seems like I have been very fortunate with how quickly surgery and appointments are coming through, but I guess it al depends on where you are etc and waiting times...

You have a tough decision, but you will get there xx
saffronseed
Member

Re: Surgery - decisions decisions

yes it is a hard decison to make - I opted for a WLE as I was told with radiotheropy it is as effective as a mastectomy and I belive this is true -  However I was told you need to think about the cosmetic appearance too - I wanted to 'keep my breast' and was told it would be deformed and in my trust a reconstruction is not automatic for a WLE - whereas for a mastectomy it is.  So you do need to think about survival and long term cosmetic results (I undersand this is not the first thing on your mind at the moment).  However although I opted for a WLE they did not get clear margins and I had to have more surgery and I had a mastectomy.   I must admit with hindsight and now 4 years down the line I would opt for a mastectomy first time around and not bother with WLE.  It does so much depend on the size of your tumour and type of cancer.  I ended up having all lymph nodes removed too and had to have chemo.   Have they told you how large your tumour might be.   They thought mine was 2cm,  after WLE op said it was 4cm (without clear margins) and when they finally got it all out with clear margins it was 9cm.   So I would try and ask a few more questions before you make this decision.   xx

Bluesky123
Member

Re: Surgery - decisions decisions

This is all filling me with dread again. I don't think I'll ever be able to make this decision.

pam01
Member

Re: Surgery - decisions decisions

Sorry to jump in but those figures are not correct. It may be worth ringing back and double checking....? misheard or someone was having an off day! There is a SLIGHT xs of local recurrancewith WLE and SNB plus radiotherapy but nothing like those figures. Overall survival is thought to be identical (because its the distant recurrance ie a metastasis which kills). It would be worth asking for the reference for the original figures given!

Good luck with your decision making.xx

mary32
Member

Re: Surgery - decisions decisions

Hi

 

Yes, that does seem at odds with all the info I've seen. Perhaps one of the moderators here could comment?

Blue23
Member

Re: Surgery - decisions decisions

I was told also that WLE and radiotherapy comparable with mastectomy . That percentage seems high,, perhaps it is just comparing WLE and mastectomy, but hasn't factored in radiotherapy ??

Bluesky123
Member

Re: Surgery - decisions decisions

But only yesterday BCC helpline said the stats were 2% for mx and 10-15% for WLE. This is what is so hard, varying statistics and knowing which is the most accurate to base my decision on.

mary32
Member

Re: Surgery - decisions decisions

Hi Macky

 

The recurrence rates between mastectomy and wle plus radiotherapy are comparable, surgeons wouldn't offer wle/rads otherwise.

 

At the end of the day you need to make a decision that you can live with.

 

Mary

Bluesky123
Member

Surgery - decisions decisions

I'm a bit further down this path now, and have a date for surgery.

2 things bother me:

 

1. The date seems a long time off, it will be almost 8 weeks since I first saw my GP about the lump and was referred to the unit, 5-6 weeks since my first assessment at the unit, is this a long time or is it just me? I'm so worried about what's happening in there while all these days and weeks tick by. I've been tempted to see if I can have surgery privately just to get it done but then possibly I would be starting at the beginning again for scans etc and that doesn't make sense now.

 

2. I have to decide whether to opt for WLE followed by radiotherapy or mastectomy. SNB will be done at surgery also. I never imagined I'd have to make a decision like this. It feels as though I either keep my breast and have to live with a risk of reoccurrence or lose my breast to be safer in the future. The surgeon has said that the risk of reoccurence between WLE and mastectomy is minimal - something like 0.1%, but I spoke to BCC helpline yesterday ( absolutley WONDERFUL organisation isn't it ) and was told that the risk of reoccurence in the same breast after WLE is somewhere between 10-15% over ten years. That statistic makes me lean towards mastectomy quite heavily. I don't like the thought of losing my breast at all and feel devastated about the possible implications of that, but the thought of going through this again is worse, there is a strong desire to do everything I can to prevent this happening again.

 

It's so hard trying to make this big decision while not really knowing or understanding all the relevant facts. I want to make the right decision to stay healthy in the future but don't want to have something done which I later regret and find hard to live with.