I had a WLE June 07 no clear margins. Surgeon said that would take a bit more and if margins still not clear then would have to have a MX. No clear margins again but he said that as I had fairly big boobs ( c cup) he could take a bit more without having a MX. I ended up with a WLE and 3 further excisions until finally had clear margins. I have quite a deep dint above nipple and towards the armpit but you cant see it under my bra. Had Chemo and then rads and everything ok.
Recently I found a small lump under my scar. Called my BCN straight away and went to see her the next day. I was then prodded by my orig surgeon who said that definately could feel a lump but most probably scar tissue but would send me for an Ultra sound.
Ultrasound Dr said that it was scar tissue and had not come across any cases of recurrance so soon after treatment finished. So went away happy. However was called out of the blue last week to see the consultant Surgeon who said even though u/s was ok he is worried about the lump and wants to take it out to check it is ok.
If he finds any Cancer cells then he said I would have a Mx no ifs or buts.
So my mind is in turmoil and I so wish I,d had a Mx in the first place. I,ve been picking out songs for my funeral and thinking morbid thoughts again. I had been so positive and happy the last 6 months or so.
Thanks for your comments, not been on for a while. I live in Renfrewshire, Scotland, but am originally from Wales - where my family live. To complicate things my husband (who is from Sheffield) works in London - he comes home at weekends, but has been home for a while to see me through last lot of surgery and the Chemo last Friday. I feel really well, so far so good. Going down to London tomorrow to look for a wig in the Bloomsbury salon.
Andrea, how did you get on with the surgeon, I hope it turns out to be just scar tissue, but better to have it taken out and examined. Will be thinking of you for the next few weeks until you get your results.
hi there sue i have just been reading on here that you have been having chemo for dcis? i had dcis and have had a masectomy im 4weeks post op i had 6cm of dcis in my breast widespread the results came back as just dcis my consultant has said they are going to ask the lab to test for estogen i am now worrried as being 26 i am thinking may be i should of had chemo my lymph nodes were clear andt reading your treatment makes me wander. i understand everbody has different treatment but giving my dcis was 6cm i guess that wa a large tumor although they never said tumor they said 6 cm dcis which i guess is the tumor any way i just thought would see if any body else as had similar to me with such a large area of dcis and no chemo
good health to every one
kimxxxxxxxxxxxx
Hi, I was diagnosed two weeks ago and have had wide local excision and sentinal node biopsy. Got my post op results yesterday and thankfully the nodes were clear but the excision margins weren’t so need more surgery. My consultant has asked me to decide if I want to have a further wide local excision or a mastectomy and immediate reconstruction, I have an appointment tomorrow with him to discuss my decision. I am edging towards mastectomy and recon as I feel I just want it gone, however I am really, really scared and am very tearful today. Can anyone give me an idea of how this surgery is and also how you are afterwards re recovery etc. They are talking of taking a muscle from below the shoulder or the abdomen for the recon. The whole thing terrifies me. Would really like to hear from anyone who can give me some insight on what to expect, please
hi jules, i had a lumpectomy first, and then had to have a mastectomy, but i felt less pain with the mastectomy than with first op, i think that was because id had all my lymph nodes removed first time as well. i also recovered very quickly, and didnt feel sick like when id come around first time. i must admit i felt more anxious the 2nd time, but i was honest about this, and had a pre med, which made all the difference, if you feel it would help you, just ask the nurses.
Sorry I haven’t been on site for a while and reading your posts I wish I had if only to reassure you.
Faith, yes I did have dcis but this was only found when they removed a tumour and the margins showed dcis (ductal carcinoma in situ). Just to reassure you, the dcis are not a tumour, i.e. the cancer has not started to grow outside the ducts. Sorry to hear you have been through all this at such a young age. Anyway, the reason I need chemo is because of the tumour which was Grade 3 and aggressive, which means that the cancer had moved out of the ducts and the cancerous cells started to grow. Hope this helps.
Jules, sorry this reply is so late. I know you have now seen the consultant - let us know what you decided, either way you will get advice and support from here. I was in the same position as you, although the consultant didn’t mention mastectomy. I had a second WLE but still not clear margins so a week later I had another and he took more away - and got clear margins. It’s a tough decision some ladies prefer a mastectomy and they know that it has all gone and cant come back to that breast again, however I’m not so brave and think I would have kept on having WLE. That said, I am missing about a quarter of my breast, fortunately underneath so in clothes and padded bra you can’t tell. I did get an infection after the third op which was not painful but the “leaking wound” was a bit of a pest.
Hope this has helped, and anyone having their first E - CMF treatment, I had my first on the 28th Nov and have been absolutely fine - no nausea (I drank loads of water before and after) just a change in taste - wine and water tasted awful. Tonic water tasted ok and was refreshing. Two weeks later still got my hair but getting a wig tomorrow just in case!
Hi,
Hi,
I have found your comments really interesting. Did any of you think about not having a re-excision?
Brief history: I had a lumpectomy and sentinel node biopsy mid Dec -the node was clear but 4 of the 6 margins were not sufficiently clear. (Grade 3) Treatment recommended was a mastectomy (due to being small chested and original growth near nipple) and possibly chemo. Since been told because my oestrogen receptor reading was 8 out 8 I’m a good candidate for hormone therapy and that chemo benefits would not be that great (?approx 2%) but then today told by the plastic surgeon that he won’t do an immediate reconstruction as he wants to certain that I won’t need any more treatment
I’m really struggling to come to terms with a mastectomy despite having seen the BCN, the surgeon, a plastic surgeon and the oncologist
Thinking of just monitoring it as I can’t face the thought of having a mastectomy and finding there was no evidence of the cancer being left behind.
Is there anyone out there that has considered or made a similar decision?
Have you asked them if they will do another WLE or lumpectomy to try to get clear margins - even though you are small breasted. It’s worth asking.
Best wishes
Anthi x
I am in a similar situation to you. I had a WLE & SNB in November, went for pathology results expecting choice of 3 options re lump (nodes all clear) but was faced with option number 4!!!
The margins were clear but what was thought to be one tumour as per mammogram & scan was 3 seperate cancers.
MY choice was to have radiotherapy or MX with reconstruction. My consultant did say that if I had radiotherapy there was no guarantee that future mammograms would show up any new cancers but also that if I had MX could turn out to be a healthy breast.
The choice was mine!!!
I knew straight away that I would drive myself crazy in the future if I had Rads as I would always be wondering & worrying about it coming back & not being noticed straight away.
I did take time to consider this carefully & discussed with my husband, children & family & also my fantastic gp, they all believe knowing me this is the right decision for me.
I am aware that path results may show breast was all clear & this will be difficult to face but easier than the worry of wondering if it is there again.
The only person who can answer this is you but I know it helps to talk to people on this site as we are the ones going thru it but also talk it thru with those closest to you, it does help when they have some idea of your thoughts & emotions.
I am having my op next week 20th.
So sorry that you are both in the situation of having to make such awful decisions.
Cloud9, I agree with Anthi, if you don’t think you could cope with a mastectomy then how about asking for another WLE or did they say that this wasn’t an option? Personally I wanted all the treatment they could throw at me - not that I was ever given a choice!
Susan, I think you have given excellent advise. Good luck with your op on the 20th.
Hi Susan,
Thank you for replying although I’m sorry to hear that you are in a similar situation. You are definitely right that it is good to share as getting other peoples views is certainly helpful although the professionals are very careful not to influence one way or the other (which is as it should be).
I’m pleased you were able to come to a decision relatively easily and have such a positive attitude.
I’m afraid I seem to ask too many questions - no one seems to actually want to give me any clear indication of risk. I’m sure there must have been some research done to produce statistics re % of re-excision/mastectomies that result in totally negative results etc.
Good luck on the 20th
Hi Sue,
Thank you for your interest and support.
Thinking back I wasn’t actually given a choice until I delved too deeply and then was told that was OK if that was what I wanted.
How do people actually get their head around not having a breast/nipple - I can cope with dents (I now have 3, the previous 2 were from benign tumours)
On a good day I think how this could all have happened when my son was 3 but still can’t actually bring myself to agree.
Still BNC is organising an appointment with their psychology team so maybe that will get my thoughts clearer
I think I knew straight away I would go for MX although I did take some time to consider & if I am honest the thought of losing my ‘real’ breast does sometimes upset me but I know ‘me’ & I know I have made the right decision for me.
I do like to know everything like you & have read the leaflets from my BC nurse & the ones on this site a number of times but the one thing I have not looked into is the %/risk of my breast being clear.
I realised straight away that whichever route I took the outcome would not be great i.e. clear breast or that the cancer had spread so I decided to try to resolve as quickly as possible rather than wait around to see what happens.
Try to speak to your surgeon to discuss fully so you know you are making the right choice for you.
Take care
Susan
Hi Susan
Thank you. I’m so glad you were able to reach your decision relatively easily but then I struggle with even simple decisions let alone life threatening ones. It taken me over 3 years to buy a coffee table and I’m now back looking at the ones I first looked at so I’m obviously not a good decision maker!!!
Got yet another appointment with my surgeon on Thursday so maybe it will be clearer then
Hi Cloud9
I know you may have already thought about it but make sure you have a list of all your questions or concerns ready for your appointment.
Hopefully they will provide enough answers for you to make your decision.
I know whatever the outcome my decision is the right one for me at this time, depending on my results I may think differently but I will deal with that then. I am taking one day at a time as I work through all of this.
I wish you well whatever you decide.
Susan
I do feel for you. I was in a similar situation in that my lumpectomy didn’t give clear margins, and was advised to have a mastectomy. I had a really tough time with this. There was no way of knowing if there was any cancerous tissue remaining, and it seemed a huge sacrifice (it IS a big sacrifice) to lose a breast if it proved to be unnecessary.
Anyway, long story short, I did have the mastectomy with immediate recon (LD flap), and it turned out that there was fairly widespread DCIS that hadn’t been picked up. I know it sounds peverse, but I was sort of pleased that the mast. hadn’t been for no reason.
2 and a half months on I am doing ok, my recon is settling down. It is not a perfect outcome, but is one I can live with. Sadly there is no easy answer. Just research as much as possible, and I would suggest contacting BCC to arrange a phone call from someone who has been in your situation. I did, and found it very helpful.
Good luck in your decision making, and wishing you love
Thank you so much for sharing your experience - don’t think it’s perverse at all - I’d also be relieved that it wasn’t all in vain - it’s the opposite result I wouldn’t be able to live with.
Everyone is really trying hard to help me - yet another appointment with the surgeon on Thurs to answer even more of my questions and one with the psychology team on Fri.
So glad you are doing well and thank you again
Hello Cloud9
I do feel for you. My situation was very similar to yours. After the surgeon told me that although the sentinel nodes were clear, a second operation is needed to remove some pre-cancerous tissue.
I went away discussed it with my family and did some research. I decided to have a mastectomy and told my surgeon who was against it to start with. I followed my instinct. I had this feeling that I wanted to get rid of my breast; lump, tissue and all!!!
The one question I was repeatedly asked is: how would you feel if the result was all negative? To which I said I would be very happy that my body would probably be clear of cancer.
I had mastectomy. It was painful. I am still in some pain 6 weeks later but I felt huge relief when the surgeon shook my hand and said good decision. We found more pre-cancerous tissue in the other side (of the same breast).
Go with your instinct and your feeling, after you do a bit of research. My advice to you Cloud9 is talk to the team, prepare some questions, ask to see some photos of mastectomy, talk to your dearest and nearest. But YOU decide. Good luck my dear . I’ll be thinking of you and pray that you come to a decision that you are happy with.(((((((((((hugs))))))))))
Thank you so much for replying and talking about your situation. I think probably I’ve done too much research and have another appointment with my surgeon tomorrow to go through yet another A4 sheet of questions. I’ve also been referred to the psychology team and have an appointment with them on Friday so hope it will become clearer after that.
Hello Anthi, Gardengirl, Sue, Susan, Fulla
I had over an hours meeting with the surgeon yesterday and another hour plus with the clinical psychologist today. I certainly can’t fault the support my hospital team are giving me. Think I’m now nearly there with the decision so thank you all for your support.
