Hi everyone - about to see the surgeon having been recommended WLE for DCIS. The thing is I would not have known about it before the mammogram because there was nothing for me to detect. I had never even heard of it and have suddenly found so many women go through this.
BUT in all my searching on the internet I cannot find out why we have surgery while it is non-invasive. Why can’t we just be monitored more frequently to see if there are changes? What is the difference between having it cut out when or if it has slightly started to spread rather than before, when they know in lots of cases it might never happen? I feel as though I might be getting something done which will have a major impact on my life and may not be necessary. I’m afraid about the effect on my family and friends and work as much as for myself (I haven’t actually told anyone about it yet) since I currently am perfectly fit and well. I can’t find any serious research on alternatives to keep it in check or if others have chosen not to go ahead with WLE at this early stage. Will they let me do that? I know lots of you had no choice or felt they had no choice and I am wondering what advice you would give me before I take any steps at all.
Going on Friday so need to get my act together to ask the right questions.
Thanks for any input.
xx
Hi kbgood
I am posting a link to the BCC publication about DCIS which you may find useful, please also feel free to call our helpline where you can speak to one of our specialist nurses about your queries and concerns, the details are in the back of the booklet:
Best wishes
Lucy
Thanx Lucy but I have the leaflet etc and already raised what I am saying more or less straightaway with the nurse before even looking on the net. I know this is a sticky subject but if I don’t find out about possibilities before doing anything then everything I am seeing suggests I am on a treadmill that I cannot get off. I’m seeing the stuff about radiation and surgery that does not remove everything and has to be repeated or taken further still and nothing about wait and see with regular checks/tests.
Any thoughts anyone pls?
xx
Hi,
Obviously this is just my opinion but I guess that’s what you’re after.
If I were you I would have it out now, why wait for it to turn into an invasive cancer and then potentially spread elsewhere. I think if you ask most people on here, especially those with secondaries if they’d had the choice, they would have it out. You do have to weigh up the pros and cons but to me the pros outweigh the cons. Yes it may not actually develop into an invasive type but it might. How often do you think they should monitor you? Each cancer grows at it’s own speed and rate so you may be checked once a year and this might not be frequent enough. Plus the effect of all the mammograms on you and the cost to the NHS (yes I know we pay for the NHS in taxes but it’s still alot). By the sounds of things you’ll just have the WLE, would it be radiotherapy too? It it turns invasive then you could be looking at WLE/mastectomy, node clearance, Chemo and rads.
What long term effects do you feel there will be form having a WLE? You will probably not even notice a difference and if there is you’ll prob be offered some sort of solution. I was driving within about 10 days, infact I was a bridesmaid the day after my surgery, granted I was drugged up. The pain from the WLE wasn’t that bad, it was the pain from the node clearance. I had a WLE to remove the initial lump- IDC but then they found some DCIS so I had a further WLE but they kept finding more so did a mastectomy. It was hard to see on the mammogram because I was only 28 at the time.
Do you not worry though that if you didn’t have it done you’d be constantly worrying about it turning invasive?
Good luck in your decision, it must be a tricky time for you.
Em x
Thanx em
I’m a lot older than you and I guess I need to get my head around the whole thing - I’m sure I would not have been as brave as you at that age! I keep thinking about seeing grandkids that I might have in the future (I don’t want my kids to have any yet!) and weighing that up against setting this whole thing in motion when I feel absolutely fine and I know it’s going to make me feel bad. I don’t know what ‘grade’ I have cos they did not have that info when I got diagnosis so I don’t know about further treatments either. Thank you for trying to give me a positive spin when you have been thru so much. I guess I am also feeling a bit of a fraud because I feel perfectly ok. When I eventually do tell people about it I feel like I will have to be saying to them it’s all ok as well! It’s all really weird! Anyway bedtime now! xx
Hi kbgood,
You keep saying that you feel well at the moment. I think that is true for most of us that had cancer diagnosed at an early stage. Mine was an invasive tumour that I felt as a lump and it couldn’t be seen on the mammogram. I felt absolutely fit and healthy, but if left untreated, it would have spread.
There are different grades of DCIS and so have you asked about what grade yours is? I’m sure they wouldn’t be recommending WLE if it was low grade. Keep asking the questions. At the end of the day, it is your body and your decision, but they do have a lot of experience and are acting in your best interests. Often, the stories you have read about insufficient margins and further surgery are because they don’t know exactly what they’re dealing with until they get in and remove it. It could turn out to be worse than it appears at the moment and then you would be glad that you let them go ahead.
E xx
Hi Kbgood
I had two WLEs for invasive lobular cancer (that didn’t show on the mammogram) and to be honest they were the easiest bit of the treatment. Ok, it’s not pleasant but I was up and about after a few days, driving after about 3. The scar healed quickly and inside took a few months to stop being painful but now it’s fine.
Try to avoid it becoming invasive when you need everything else tacked on as those treatments are the difficult ones.
Have you discussed this with your team or your bcn? They should at least listen to your point of view and discuss it with you
Helen
Kbgood
hi there… you were asking why they want to remove it at the non-invasive stage… well the thinking behind it is it could potentially turn into invasive cancer at any time… while it is non invasive it doesnt have the power to move around the body it is limited to the ducts.
however with invasive breast cancer even within the breast it can still spread through the lymphatic system and vascular system which can lead to secondaries.
while it remains in the breast it doesnt have the power to do much damage but once it leaves the breast it can limit your life significantly.
x
Hi KBgood
Go for having it taken out. I agree with what the others have written here, but had exactly the same feelings as you myself when I was diagnosed in May with DCIS. I felt fine and healthy, I felt no lump and it was my first mammogram. Also the surgeon told me only about a third of DCIS becomes invasive - but they can’t tell who will get the invasive type. However, as Lulu says once it’s invasive it’s a much bigger issue. My friend was diagnosed with invasive BC the same time as me. I just had WLE and will be having radiotherapy and tamoxifen. My friend had WLE twice as the surgeon didn’t get clear margins first time, also she had sentinel node biopsy which was really painful to recover from, and is now on her first dose of chemo.
Even though you (and I) feel it’s come out of nowhere and is going to have a major impact on your life it could be so much more if you leave it and it does get invasive.
It’s the mental/psychological coming to terms with it that’s really hard. You are well, but everything has changed.
It’s like grieving for the life before diagnosis - first you don’t accept it’s true, then you are angry/sad/bewildered, and in time you come to a kind of acceptance that you are in a new part of life that you didn’t choose.
My WLE was on June 17th and I’m still a bit tender, but nearly healed inside the breast. In my head I’m still getting used to this new part of life.
How did you get on on Friday? Do let us know.
All the very best
Susie.
xx
Hi everyone - sorry I feel really bad about not replying until today - thank you so much for helping me to see the upside of getting it sorted sooner rather than later - in the end I realised I had to see the surgeon before I could know what to do. I did not have enough info about my case. Anyway, I have got high grade and the surgeon reckoned about 2 cms including the margin (so not massive)plus follow up. He was a nice guy, quite positive really and I did feel able to express my thoughts about maybe to wait and see if it changed and he knew all about the internet stuff I had seen and he did not make me feel like an idiot for discussing it. However because it is high grade he felt it was not really an option and gave me some confidence that unless there are complications he will do a good neat job! They offered me mid August immediately, which I could not do for various reasons, but am looking at early September. Over the weekend I had to find a way to tell my mum and my kids (no partner now)without stressing them out too much - anyone else find that part more upsetting than knowing what you might be facing yourself? Anyway that’s done so I move on! I have decided I will go with the flow but allow myself a bit of breathing space of normality, hoping to get a little holiday in before everything kicks off cos I guess it will be almost Xmas before feeling ok even if everything goes well. So there we have it. This site is amazing and so are all of you!!xx
Sorry it came up twice cos it said there was a problem the first time but then it did show - hey I really understand all the technology - not!!xx
No problem kbgood
I have deleted one for you
Best wishes
Lucy
Hi Kbgood,
Thank you for the update and well done for getting to this point and having your plan sorted. I believe you are doing the right thing and you’ll have the support of all the ladies on here who’ve been there before you as there will always be things that you wish you’d asked or clarified at your appointments. The knowledge among this group is phenomenal and there will be nothing that you need to worry about on your own.
Its also a great idea to try and fit in a holiday before the treatment starts as it will help to take your mind off it and set you up in the best frame of mind to cope with it all.
All the best of luck and let us know how you’re getting on.
E xx
Hi KB, good to know that you have seen the surgeon as waiting for information can be hard.
I didn’t want to tell anyone except my husband what was happening until the point where the surgeon advised an operation. Then I had to tell work - who were very supportive, and my kids who are in their 20’s. That was quite hard.
My son listened quietly and I was glad I had found out lots of info from this website and forums so I could explain the risks and the possible outcomes to him.
My daughter asked lots of questions and again I was glad I’d looked on here for info. She also wanted to know if she had increased risk of BC and I’ve asked that to people all the way through and they’ve all said no increased risk for her.
Are you having a ‘wire assisted’ WLE - where a wire is placed into your breast to help the surgeon locate the tissue he is taking out? I’m only asking to reassure you that it’s not painful even though it sounds it.
After the op you’ll find you need to wear a soft bra at night - I got 2 cotton sports bras from M&S which are rubbish as sports bras but just right to wear all night, and quite cheap too.
Good luck with it all and if you have any questions do ask - as elsk says there are lots of people on here who can help out with answers.
Take care,
Susie.
xx