Remember at school when you didn't know how to get to the answer to a question and you used to say to the teacher 'I'm stuck'? That's me.
I'm 51 and had my first routine mammogram in June. To cut a long story short they found 9mm intermediate grade DCIS in my right breast. I went for WLE at end of August. During my follow up appointment they said area is 11mm (now high grade ER8) and clear margin was too small so re-excision was required to shave an additional area plus likely radiotherapy.
I've had my follow up appointment this week. The consultant told me that, as the cavity had healed, he took away a 48mm area to ensure he could achieve the required margin. Within the tissue removed they found a separate 3mm area of DCIS but again the clear margin is less than 1mm. He wasn't present at the MDT meeting and the recommendation from the meeting is a 2nd re-excision. The consultant doesn't believe it is of clinical significance and in his opinion the radiotherapy should be sufficient. I expressed that I would prefer not to have further surgery if it isn't absolutely necessary so we agreed they would discuss again at next week's MDT meeting.
This has left me with a number of questions
I'm left feeling as though. if they insist on further surgery, I would prefer a mastectomy as I don't want to be having surgery every other month. However, this is drastic and would like to be able to identify if there are other areas of DCIS before taking this course of action and also work out if there's a possibility I may still need radiotherapy afterwards.
I know there are many people with far worse diagnoses. Im not unwell. I have no complaints about my treatment. The breast cancer team are amazing and everything has been done swiftly. I'm due a call from my BCN this morning to ask these questions before my appointment next week but I wondered if anyone had been in a similar situation or could offer any 'real life' advice. I've found the posts on the forum to be a great source of information during the past few months.
Best wishes & love to all of you out there who are on this uncertain journey xx
Hi BluebirdxKaren
Welcome to the forum and sorry to hear that you were diagnosed with breast cancer. In answer to your first question your oncologist can't insist on surgery before you start radiotherapy, it's complete up to you whether or not you want to have surgery or not. I can't answer the other questions I'm afraid, but this reply should put you to the top of the discussion and hopefully others will be along shortly to answer them.
Wishing you the best of luck with the rest of your treatment.
Best wishes
Daisy53
Sorry to hear all you are going though. It's bad enough to be diagnosed, but to keep getting worse news each time is just awful for you.
My one question would be if they know the grade of DCIS and that could make a big difference to whether you would have further surgery or not.
I, like you was diagnosed at aged 51 when I had my routine mammogram (nearly didn't bother with it, as I thought I'd know if I was ill!) had 15mm IDC which was grade 2 (and didn't change), but then I had 2 x separate areas of DCIS grade 3 totalling 54mm - my DCIS was ER negative Mine all showed on the mammogram. I had an 80mm lumpectomy and was ER8 for my tumour. (which is unusual to have 2 different types of cancer).
The good news is the ER8 - in as much that you will respond well to the oestrogen (ER) blocking tablets as this is the highest possible number out of 8. There is the oncotype DX test that is often done these days (wasn't around much 5+ years ago when I was diagnosed) which provides more information about whether the response to the ER tablets is high or if chemo. is needed, but it doesn't sound as if they are looking at it for you.
A mastectomy is a MUCH bigger operation and not something that any surgical team would recommend if they don't think you need it.
Radiotherapy can kill 'remaining cells' of DCIS, so it's possible that it could get rid of DCIS and we also know that some DCIS might not even turn into cancer from the leaflets they send out, but if it's high grade DCIS then as it was in the area of margin they removed it may well be part of the original cancer - if that makes sense. The fact that they did find a clear margin of 1mm with the DCIS makes is sound as if it was right next to the tumour and it makes sense for them to get a bit more margin and that's probably where the MDT team are coming from. Whereas your consultant seems to be thinking that the radiotherapy would sort it. That is the decision that you would have to think about. Is it worth another small operation for 100% peace of mind or knowing that 2 x separate professionals have a difference of opinion. Do you take the risk and run with the 1mm margin with the radiotherapy 'mopping up' any stray cells that could perhaps be there? If you know the grade, then if it was low grade, then maybe less of a risk vs high grade.
There is always, as mentioned by kitty, the possibility that there is further cancer that hasn't been found, but it isn't a regular thing, more the exception that the norm. I didn't have an MRI so I don't know if they find more on MRI's that they do with the normal mammograms. This might be something to ask from your next meeting too.
Do also bear in mind that if you decide against a further lumpectomy operation, go with just the radiotherapy and find that it didn't wholly work, then you can never have radiotherapy on that breast again. So if it were to remain and not be killed by just radio alone, then you would have limited your options - ie you couldn't go for a further lumpectomy and radiotherapy.
Whatever you decide, I do wish you all the very best with everything.
Lesley
Thanks all for your time & advice. I spike to BCN who said it's best to wait for next MDT. They wouldn't do an MRI til 10 weeks after the op so will wait and see.
It's really good to hear from people with similar experiences 
