ANOTHER WLE OR SHOULD I HAVE JUST GONE FOR A MX!

Hello ladies, your thoughts and advice needed here please.

had wle for grade 1 lump and snb. they got the lump successfully. no nodes involved.

they said low grade dcis in one area, so wanted get that as well, so have had that done as well. (all other area was 5/6 mm clear margins btw).

results after this some ‘busy breast tissue’ (ADH) - so now want to go in again and clear that away as well. this would mean another WLE. they have said if i want to go for mx now they would be happy to do that as well, but at moment they are happy do a further wle. after this wle if there was still ADH they would probably advice mx to be on safe side, which i would definately be saying i wanted anyway - couldn’t cope with a further wle.

i am so confused. i hate these ops and get so stressed, and dont want to keep having them, but is mx too drastic at moment. if I had mx they have said rads wouldn’t be needed as grade 1 no nodes fairly small lump -unless something else turned up. having the rads doesnt bother me as much as the ops!
may be it should!

this morning told my bcn would go for wle. she said ‘good for me’ and that it is worth doing again and that there was good reason to think next time would ok - obviously no guarantees as they dont know.

have i made a mistake, now am i thinking should i just go for mx. i am thinking if next time it isnt ok i will be thinking i could have had it over with a mx. this is what my bcn has said i have to be happy with that this could happen. will be having op next week.

Lots of hugs to you all

TTM xxx

Hello TTM,
Oh gosh what a shock that must have been for you, I’ve no idea what to suggest I’m going to find out my results today and they might say the same to me.
How do you make that decision?
Let me know what you decide I’m sure you can change your mind if you want to!
Sending big hugs to you.
Love fran
xxx

hi fran,

i am so fed up. just wanted to move on to next step, but i know its for the safest.

TTM xxx

I had a WLE and SNB in March last year. The results came back that one of my margins wasn’t clear enough (only 1mm), so had another WLE. The results of that were that they had got clear margin, but had found some DCIS as well and one of the margins on the DCIS was again only 1mm. Had another WLE and yet again they found more DCIS and the margin wasn’t clear enough. So after 4 months of chemo I ended up with a MX in December.

Do I regret trying a WLE each time than going straight for a MX? No.
Am I now glad I’ve had the MX? Yes. Like you, the MX meant no rads required, so that was one good thing to come out of it. And I also have the comfort of knowing that they definitely got it all this time, and the chances of it coming back on that side are pretty remote.

The one thing my surgeon said which really hit home, was that they hadn’t seen the DCIS on my ultrasounds or mammograms, even when they went back to look after they’d found it surgically. So if I’d not had the MX, they would always be worried about my follow ups as there was a chance I’d get more DCIS that they wouldn’t be able to see.

You just have to do what you think is best. The results of my MX were that they didn’t find anything else, so you could argue that I had it done for nothing. But for me the peace of mind after 3 bad results made it worthwhile.

Good luck.

I had the same decision 2 weeks ago, and we talked about it in a PM. My surgeon kept on saying that my life outlook was the same with either treatment. In the end he said if I was going to continually worry about it coming back (goodness knows how he made that observation as I sat with wet tissues!!!)I would be better having the MX. Neither decision was going to be right in my mind, but the surgeon said neither decision will be wrong!
A few things made me decide the MX; not wanting to go back if they didn’t get it all next time, reduced risk of recurrence (I think!!) and the bonus was no rads.
I go back to the hospital tomorrow for results, so i guess what they tell me then may make me reflect on the decision I made…
It is such a personal thing as losing your breast is obviously really difficult, and I do feel for you. My surgeon told me to just tell him before he started!! I did feel better once I had told them.
Thinking of you - so difficult, but remember, whatever you choose it is getting rid of the cancer!
Mary x

I had a WLE and then a re-excision because of DCIS they found, and fortunately got clear margins but I would have opted for a third op if it had been necessary. After that, it would have been MX. For me that was the right decision, and rads was not a problem - a bit of a nuisance to be at the hospital every day but other than a couple of sore skin bits towards the end (for which I got treatment) it was fine, and certainly better for me mentally to keep my breast and have rads than to lose it.

If you do go for mastectomy, would you be able to have an immediate reconstruction? that might make a difference to how you feel about it all.

thank you so much for your thoughts. i think they have given me choice now for mx as they know i said to start with i didnt want to have further excisions, but i was hoping i didnt find myself in this position.

the adh is something which if they had seen on its own they wouldnt be too concerned about but because it was in area of lump the safest is to get rid now. they said this time the tissue they are taking is really more preventative. but if they come away with still adh at margins they wont be happy at that.

if i did have mx i dont think i would consider reconstruction. maybe i would change after a while but at the moment i couldnt deal with doing reconstruction at this time. i have already discussed this with them briefly to start with and then just recapped with the BCN other day after these results. dont think i would be able to tummy one as i havent enough there i dont think, and the BCN thought this too and possibly from the back either. i am only size 8. i think she said it would be implant or something where they push some tissue round from under arm/back of shoulder of something? she said name of procedure but i cant remember. i am not too big busted so hope lopsided issue wouldn’t be as bigger problem as for some ladies.

if i go for this wle, then that will be it, i’m not going for another, it will be mx and think they will agree - bcn said this morning she would agree with me on this.

Nels - bcn said to me this morning exactly same that neither decision was right but neither decision is wrong.

TTM xxx

Hi TTM,

I had WLE and nodes first time but incomplete excsion so on to MTX 3 weeks later. I was recommended that as I have invasive lobular cancer, they did not feel further WLE an option.

I have friends who have has more than 1 WLE and they have not gone on to MTX. I did not find the MTX as bad as I thought I would, but I would like to have some of my own breast tissue there still. I will be going for reconstruction once given the all clear in 1 year or so.

I did sort of feel , just get rid of it all, but if they feel you do not need MTX, I would probably try another WLE.

Only my opinion.

x

I had two WLEs because they couldn’t get clear margins and then had to have mx. They offered me mx at second stage but I am forever glad that I went through all three stages because I would always have wondered…
After second WLE my breast looked so disfigured because I am small chested and was glad that I didn’t have to keep that and decide upon ‘new’ alternatives!!! The mx dx was very very sad but I coped with it far better than I ever expected because I was then SAFE!
Not sure if my account will help/distress anyone. Do hope it doesn’t but the decision making at this time is SO UNBEARABLE.
I just wanted to offer my personal circumstances.

Good luck to anyone trying to make this momentous decision. I couldn’t have recon at the time because of recent infections and am still content with flat side and prothesis after two years.

thank you welsh girl for your thoughts and experience.

i too couldnt face reconstruction at the same time as a mx and dont think i would want it further down the line, but i suppose could always change my mind, which my bcn has said this is still possible - if i dont want it now i could still have it at later date.

TTM

It’s such a minefield of ‘what ifs?’
It’s utterly exhausting for you.
Do hope you can make the right decision for you! And yes, recon is always an option for years to come…
(I think about it regularly but am ok with my symmetry with prosthesis now that I look for the right clothes to make the best of my looks. No one would ever know about my flat side because prosthesis and bras are so good! I found Amoena range the most comfortable and still wear their Mona style!)

Again, I just want to reassure you that this struggle to decide is the very worst decision to make. Afterwards you can rest a little before op date.Like you I didn’t need rads after mx but would have needed them after WLE.

Take good care now Wx