Hi
I have just found out that following a second WLE for DCIS in the right breast the margin was only 0.2mm. I will be seeing the surgeon on Thursday but I am guessing that I will need a third operation to get the recommended 2mm margin. That in itself is okay but I was also diagnosed with a 33mm Invasive ductal and lobular cancer in the left breast which was removed on 15 May 2013 however because of the failure to get clear margins in the right breast have not been referred on to see the oncologist to discuss further treatment such as radiotherapy or chemo and have not yet been prescribed tamoxifen. In two weeks it will be 3 months since the surgery. Has anyone else waited this long to see the oncologist? You can’t help but worry particularly when nice guidelines suggest that radiotherapy should start within 4 weeks of surgery!!!
Sharon
Hi roxygirl,
Can I suggest you give the helpline team here a ring in the morning, lines open at 9am - 5pm, calls are free 0808 800 6000.
Take care,
Jo, Moderator
Hi Roxy , I was diagnosed on 31st May with IDC , 2nd July WLE + SNB 1.8cm IDC (grade 3)plus small DCIS , attached to IDC. No nodes involved. All of the IDC tumour removed, but need wider margins for the DCIS . I had to chase the hospital for an operation date, phoned my consultant surgeon secretary and she contacted waiting list people. If I hadn’t I am sure I would still be waiting for a date. Re-excision date now 6th August . (5 weeks after first WLE !) In the meantime breast scar has healed up nicely ! :-/ . I have not been given a treatment plan either. I was initally told that I would have chemo, rads anti-ER pills for IDC . So far just WLE, and no mention of oncologist appt, Once I have had my rexcision, I am not waiting another 5 weeks again ! Feel like shoutin " GET A BLOODY MOVE ON". Did you have a word with the Helpline above or have you heard anymore from the breast care clinic? I live in the NW of England and wonder if its a postcode lottery.
Kathy
When I was told I needed a second op to get clear margins, my breast care nurse told me there was a long waiting list to see the oncologist for a treatment plan. With that in mind, she made the referral to the oncologist that same day so that I was on the list and rising up it whilst waiting for my second op and recovery. This worked perfectly. Of course, you can’t see your oncologist until the full path report after your op is ready! It requires good timing, and I was lucky. I waited 5 weeks between my two ops and saw my onco 10 days later.
I suggest you ask your BCN to do the same? Worth a try.
Thanks Lola for that top tip! I may give my BCN a call, probably get the usual answer phone message, but at least it will make me feel like I am doing something. Kathy 
Hi Kath, your BCN sounds like mine! Someone does ring back, eventually, but rarely my own nurse! I’m also in NW England and have nothing but praise for my treatment so far. Brilliant in fact. Good luck.
Lola thanks for your good wishes. You probably have more patience than me . I want everything done now ! Between DX and WLE it was 4 weeks wait too. I just wanted that pesky grade 3 lump out ! I got really depressed during that 4 weeks. After WLE op I was happy it had been taken out for a few days but, then started another period of immense worry awaiting results. I must say I am in a better place mentally now. However, I am also concernedl about the outcome of my 2nd reexcision, and I really feel for Roxygirl and what she is going through right now. I hope once I have a treatment plan I will be more in control and a little less tense. Kathy
Kathy, I was the same as you. I am a control freak, and spent hours and hours researching my own diagnosis and looking up my local area protocols for BC treatment until I could almost have done a PhD thesis on it! 
I promise you that once you see your oncologist and are given a treatment plan, you will regain control and feel so much better about things. You and Roxygirl are in the worst place there is. One way of being in control is to get copies of all your path reports, (biopsies and surgery,) then you have all the details there are to be had and never get the feeling someone is filtering out certain information and keeping things from you.
Thanks for your replies. You are right all this waiting around for a treatment plan to start is making me very tense. I have four children and normally like things to be planned and to know where I am and what I am doing all the time. It is also hard not being in charge of the decisions and having to put your trust in others.
I haven’t called the helpline yet but may do so tomorrow. i just hope that I remember all I want to say and the questions I want answered whilst I am in seeing the surgeon as the last few times I have only remembered what I wanted to say after I have got home .
I don’t know about the length of waiting list for the oncologist they haven’t discussed this yet but I might suggest that they refer me to him as I plan to ask for the oncotype dx test to be carried out. Also I can’t see any reason why if I don’t have chemo that they can’t carry out the radiotherapy concurrently to both boobs rather than at the same time.
X Sharon
Well just got back from clinic and the surgeon has said that I need to have another operation to get clear margins and that if they fail this time it will have to be a mastectomy. Beginning to think that might be a better option!!! I know that if it comes to that I will ask them to do a bilateral mastectomy and reconstruction so that I don’t have to worry about recurrance on the left. I am finding it hard to come to terms with though as I initially went to the breast clinc because of a lump and skin tethering to the left breast which turned out to be a 33mm mixed invasive ductal and lobular tumour which was removed in one operation. The DCIS in the right breast was found as a consequence of the mammogram I had and when they found it at first told me it was only 5mm of calcification on mammogram. The two operations have removed a total of 30mm of DCIS which wasn’t visible on either the mammogram or the MRI scan I had following the first operation. It does make you wonder what else is lurking there that isn’t being shown up!!!
One good thing is that they are doing the operation next week so not long to wait!!!