I’m new but have been reading the posts for a few weeks now and think it’s time to join in as i need your advice!
Have DCIS, grade 3, clear margins and clear nodes. My question is, have any of you had more tissue removed than what you were originally told by the surgeon? I have had the one operation for WLE and SNB. I have only recently read my pathology result and it shows that the amount removed was double what i expected and of course i’m confused and angry about this. I have small boobs and my breast is now quite a bit smaller than the other and has a dent. To make matters worse i have been told that my breast WILL shrink from radiotherapy although my oncologist said there was a 3% chance of shrinkage.
I’m due to start radiotherapy soon and am pretty stressed by it all. Any advice would be appreciated.
Hiya, they didnt think they had clear enough margins from my first WLE so had to have a second op - (which were clear) so just felt grateful for the good result. I too have a dent but have a large bust so it doesnt notice. Perhaps a padded bra will give you a better shape? As I understand it they really dont know what the outcome will be until they are in there so to speak - the NICE guidelines have something on margins that all surgeons should follow (I know this because my onc and surgeon were in dispute over the first op - surgeon is eastern european and was adamant he had taken enough but the onc contributes heavily to the NICE guidelines and he inisted they took some more!! Ever felt like a piece of meat… lol take care x
Hi fitgirl,
Sorry to hear your are confused and angry, l had a lump. and node clearance in March, sadly there was not enough clearance, so had more of a margin taken, but again not enough clear margin so after 3 months l had a mastectomy. The surgeon was sure they had got enough of a clear margin, but that is how it goes sometimes, l just hope l am ok, and l am sure your main concern is that you are fit and healthy and the cancer has all gone.
I hope in time you will accept the dent, yes we all love our perfect bodies, but the main thing is that you are clear of cancer.
Hope the radiotherapy goes well for you and their is not too much shrinkage.
Good Luck
Sandra x
I’m sorry to hear that your WLE has been more extensive than you expected. Like the others say, they often don’t know what they need to do till they actually get into it. What would you have chosen if you had known the outcome upfront? Would you have rather had a mastectomy?
Don’t worry about the radiotherapy. I don’t know how they can predict that your breast will definitely shrink as it does vary a lot. I finished radiotherapy 4 months ago and my breast is actually at least a couple of cup sizes bigger than it was, and bigger than my other one!
Take care of yourself and try not to worry. Good luck with the rads too.
Fitgirl - I, too, was surprised by how much breast was taken away, especially as my lump was only about 2cm and on the outer edge of my right breast, but the scar goes horizontally past my nipple. Like you, I don’t have a big bust. I saw my pathology report and can see how much was removed - it even gives the weight! Also, like you, I have an indentation which, when viewed from the side, looks as if a horizontal segment has been cut out. After the op, the scar was about 4 inches long, but my breast was swollen. The scar shrank after the swelling went down to about half that length. I was particularly surprised because I had had an MRI scan beforehand, as I had lobular bc, and I assumed they knew exactly how much would need to be removed. I was going to ask the surgeon why he took so much, but I always seem to see someone else at my appts.
I can’t really say that the breast shrank during radiotherapy but it does firm up. I only finished mine in January, so I don’t know whether it eventually returns to normal in that respect.
Having said all that, I really don’t mind, if it means that they managed to get rid of all the bc. You will get used to it.
I bought some t-shirt bras in M&S with moulded, padded cups and from the outside, you would never know I have a bit missing! I also got a small prosthesis from the BCN for wearing inside an unpadded bra but I haven’t bothered with it, yet.
You can try to speak to your surgeon to ask why. I understood that they cannot necessarily tell which tissue is cancerous just by looking and so they take more to be on the safe side. When the registrar came to see me after my op, he told me that the surgeon had taken more for that reason. At the time, I hadn’t seen just how much, though!
Ann 04, you are lucky that the Registrar told you that they had taken more than you had expected, i only found out from reading the pathology result that i had asked my GP for. I can appreciate how busy they are but hey, it’s my body and i would have liked a bit of communication as to what had been done to it. My breast is still changing so will see what it looks like after radiotherapy. I am interested in Lipofilling if i still can’t accept how it looks. For my peace of mind i will be asking my surgeon about the extra bit removed.
Elsk I was asked if i wanted a WLE or masectomy and i decided on WLE as i had been told 3cm was coming out. If i had known that double that was being removed then i may have went for the masectomy. You said your breast was bigger after radoitherapy, is it because of swelling?
I was thinking about you last night and wondering if it was because you had DCIS that they didn’t accurately estimate the amount that would need to be removed. With my WLE it was a tumour which they could measure on the ultrasound whereas DCIS is more spread out. So my surgeon was able to reassure me quite categorically that there would be what he called a good cosmetic outcome. I still don’t like my scars - two under my arm that are clearly visible if I wear a sleeveless top - but I imagine I would be even less happy if I ended up with a large dent as well. I think you’re right to wait and see how it is after the radiotherapy and give yourself time for it all to settle down and heal.
My breast was OK after radiotherapy. The size increase happened quite suddenly about 2 months later and I think it is swelling and could be lymphoedema. My surgeon had a look and told me it was inflammation to one of the rotator cuff tendons in my shoulder, but its been getting worse over the last 3 weeks so my GP has referred me back to the onc for another opinion and I’m seeing him next Tuesday. I hope there is a logical explanation as I’m not too happy with my lopsided look at the moment.
Keep your chin up and take care through the rads. Start with the aqueous cream as soon as you can.
fitgirl - My surgeon didn’t say how much would be taken beforehand. The lump was fairly small and I assumed it would not be much more than that, but that was not the case and I have never found out why, as I haven’t seen him since. I seem to remember, without digging out the path report, that the length of it was 10cms!
Elsk, although they took more from my breast than they had originally said, the pathology summary of the report said the DCIS was 25mm, which was what i had been told at the start, plus they would take 5mm for a clear margin. If the summary had said they had found more DCIS than 30mm then i would accept that was why they took extra tissue but they didn’t and that is why i want to find out why they needed extra taken out.
I didn’t know you could get lymphoedema in your breast, i thought it was only in your arm and hand! I hope they gave you something for the pain till you find out what’s happening, good luck on Tuesday.
Ann 04 10cm!! That’s worse than mine. I’m sorry but i just don’t understand why these things are not explained to us! I asked a nurse on a helpline about how they know what to remove and they said the surgeon usually knows the area to remove from the mammogram.
Anyway, thanks for your help girls and good luck to you both for a quick recovery.
fitgirl - You made me wonder if I had remembered correctly, so I just had another look at the report. Yes, it was 10cms by 7.5cms by 2.2cms and weighed 71g. To be honest, it doesn’t look as if I have that amount missing. My tumour was 1.5cms plus ‘satellites’, making it around 1.9cms, so I have no idea why they took so much. Maybe that’s why I never get to see the surgeon at the follow-up appts! Having had an MRI scan beforehand, you would have thought they would know how much was necessary. Maybe that showed more than was actually there, as I know it can highlight things which are not cancer. As I said, as long as they got it all out, I really don’t mind.
Hi Ladies. Gosh this sounds like how I felt last week when seeking an explanation from my surgeon about the amount of tissue removed from me recently and the poor cosmetic result, which has really distressed me.
You might like this explanation.
I had ‘inconclusive abnormalities’ circa 1cm that they wanted to remove, reluctantly and eventually I agreed [I really did not want to change my appearance and I felt my breasts were my greatest asset and for my age fantastic]. After two months or so of dithering it happened. I was told they would take 3cm. Seems they took 5cm x 5.4cm and nearly missed the area they wanted - they found a tiny focus of DCIS at the edge of the margin, so they had to go back for more. When I was admitted second time I showed my dent [I described it as caving in the surgeon] and asked her what she was going to do about it, given that she had originally promised me a good result.
I ended up with reconstruction work during the second excision and a nasty haematoma that they then had to go back straight after on the same day to remove.
On the follow up last week I asked to see the x-ray of the first excision - it was clearly on the edge of the wire so it occurs to me that it is either sloppy work or a surgical mistake. Either way I have had around twice as much removed as originally promised for a 7mm patch of DCIS they eventually found. Grumpy - oh you bet!
It seems the DCIS is high grade so needs radiotherapy [again I am on the edge of the recommendation margins and primarily this is mainly because they have such wide margins!]. This also made me grumpy. I can do a good line in grumpy when I want - better than the other emotions I suppose.
However my first oncology appointment happened today and the consultant was just charming and properly informative - what you want under these circumstances. She told me that if I had a body image issue from this surgery then cosmetic surgery was available after the radiation effects had settled down to reduce the other breast to match, and I should speak with my surgeon about it at the next surgical follow up.
I really am a lot smaller - my right breast looks like that of a 20 year old [and would fail the pencil test if it wasn’t still too sore to fiddle with], with a slight outside flattening, my left one looks like it belongs to me - someone of 52.
If I can become a 20 year old on both sides then maybe all this will eventually fade into just one of those things. Lopsided is just too awful when you don’t feel you have much of a reason for it. It’s a shame really - she did such a good job on the incision, it’s big as it goes more than half way around the nipple but because it is around the nipple it will just fade away.
An apology would have been nice but the surgeon said that surgery is not an exact science and this was ‘one of those things’. I just wonder what is the point of the wire guide if it seems to be ignored.
I fully understand how you feel, I was angry for weeks and I am still desperately sad about the whole thing. Maybe I got it all out of proportion but the additional emotional turmoil is something I could have done without and I am sure you feel the same.
If yours is a cancer hospital - as is mine - they appear to offer plastic surgery under these circumstances, perhaps you could investigate this. I did not have to mention it to the oncologist, she seemed to know already, so it must be prominently lurking in my notes.
Yes, it’s pretty confusing the difference in the size of DCIS and the amount taken. I noticed on my patholgy they had taken “cavity shavings”, as well. Something else to ask about…! Wish i could be like you and i am not normally a nosy person but in this situation i want to know everything that has happened or is going to happen to my body!
Why can’t they just keep us informed???
fitgirl - I’m not sure what you meant by wishing you were like me. I also wanted to know what was going on. That is why I asked for the pathology report, although it took some getting. I think they thought it unusual, but I wanted to know it all.
I suppose I didn’t ask at the time exactly how much they would take as I assumed it would just be the lump and some extra surrounding tissue. To be honest, I was just pleased that I wasn’t having a mastectomy, because they had previously found some other areas of concern on the MRI scan, which they biopsied. If they had also been cancerous, I would have had to have a mastectomy. The day the surgeon told me the other areas were ok, I felt so pleased. Daft really, as I still had breast cancer.
So, that is why I am not unduly upset about the fact that I had a large amount removed. It’s all relative, isn’t it?
Hi,
Ann 04 Please don’t take what i wrote the wrong way, i meant that I wished that i was more content with the situation like you seem to be. In my situation, there are other factors as well which i don’t want to discuss on the forum but will be talking to my surgeon about along with the extra flesh removed. My GP gave me my pathology result and she said they don’t normally give it out, i suppose some people don’t want to ask for it! I totally get what you are saying about being thankful for not having to have a masectomy, i was scared rigid at the thought and i think we are all in shock when we go for our results - i know that i was - and just so grateful that something is being done about it. Well that’s how we are at the start i think and then we start to come round and start to question things a bit more:-) So you are not daft, just a normal lady going through all the mad emotions this bloody thing does to us.
Hi Greenfingers,
Glad there is another “grump” out there!!
Our ages are similar (yes, “fitgirl” is not really a “girl” more a middle aged woman and am kinda fit-ish but not getting so much exercise as i would like at the moment.) Your tissue removed is similar to mine as well, so if we are not told differently why shouldn’t we expect to have the lump/tissue size plus a bit extra removed? You are worse than me in that you sound a good bit bigger on one side compared to the other, whilst mine is definatly smaller but at the moment not too much different - the dent is bothering me more than anything. But i have to say that i have been applying Vit E oil every night to my boob and particulary the scar and i don’t know if it’s gravity or me just getting used to it but i think it 's looking slightly better. I think i would rather go for Lipofilling as i don’t think i could be bothered with another scar on my body but we’ll see.
When i was first diag at the breast clinic the doctor said i could have the scar near the nipple but my surgeon said not possible. I will wait and see what it looks like after rads, as i was told it would shrink, no question about it…Have you been told anything about shrinkage? I am determined to prove them wrong and smother my boob with Radiance gel, it should do something good as it’s not cheap!! The hospital where i had my op isn’t a cancer hospital but a general one.
Like i said to Ann, we are in a state of turmoil, one minute you think you are fine and healthy, next you are having bits taken out of you, given incorrect information, no explanations or apologies either so damn right we are upset, angry and sad that this has happened to us. I feel that i (hopefully) have plenty more years in me yet, so why shouldn’t i try to have my boob look reasonable?
Greenfingers, you really started me off on one!! Thanks ladies for getting back to me, hope you have a nice weekend:-)
Hi I have been so interested to read your posts. I had WLE and ANC on 27/5 after 6 x chemo dx last Nov told 12mm lump on u/s scan and biopsy, the MRI scan showed axillary node too.Interim MRI scans after each of 3 chemos showed satellite bits around main tumour and no response to chemo. Path report showed 21mm main tumour and 6.5 mm satellite bits were DCIS.So considerably more than was anticipated. Now have to go back to get very thin sliver of margins which is next to DCIS rather than main solid tumour so rather more dodgy to achieve a clear margin,I think, only missed by 0.5mm.Had a v. large chunk removed but still settling after surgery but do have dent. Would have already had surgery for margins last Weds but got an infection am on v. high dose of a-b hopefully surgery next Thurs. This has given me too much time to worry and now cannot stop weeping waiting for surgery then 2 weeks for results. Feel I will be more able to live with dent than the alternative.I am able to get copies of all letters to my GP and am able to see path report but have decided to wait for the latter until I have appt with Onc as I know him so much better having seen him so often prior to all my chemos.Then I can get a really full explanation. My GP knows less than I do about my treatment. Ladies thank you for listening to rant. Wishing you all well and a good week-end. Jackiexx
fitgirl - I don’t think ‘content’ is the word I would use, more accepting of the situation. I was upset at the time but I finished rads at the beginning of January and gradually time is distancing me from the upset. With a padded bra, no-one would know.
Jackie - So sorry you are having to go back for more surgery and then that awful wait for results. Although I asked for the pathology report, it came in the post and I have never had anyone go through it with me. I really should take it to my next appt. I can draw my own conclusions, but it is hard to fathom whether some of the margin details are as scary as they appear.
Jackie, rant away, that’s what the forum is for:-) So sorry that you have to go back for more surgery and the waiting for results is the worst time for sure. I hadn’t thought of asking to see the letters to my GP i just asked for a copy of my patholgy result and arranged for my GP to call me and explain the terms that i didn’t understand.
As i am having rads but no chemo i’ve only met my oncolgist once and do not know when i will be seeing him again…