I’m a bit further down this path now, and have a date for surgery.
2 things bother me:
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.
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.
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
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.
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 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.
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
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