I was diagnosed DCIS in Jan. Had skin sparing mast. in Feb. Got results on Tuesday. High grade, comedo, extensive (6 cm) ‘as big as we’ve seen’ said the breast surgeon. ‘Microscopic’ invasion found in one lymph node. I have been told that no further treatment is needed as it was ‘microscopic’ and I can now go on to have the reconstruction. Family/friends all celebrating. But I am concerned that there could be more lurking in the lymph nodes. I didn’t ask about margins because, until I found this website today, I didn’t know anything about margins. I’m not sure what to do. Sit around till the annual check-up I suppose. (Unfortunately, my breast surgeon is not an approachable person.)
Lynda
Hi lynda,I had IDC (invasive ductal cancer)and some DCIS (ductal cancer in situ)and was told that DCIS is confined to the ducts and hasn’t developed the ability to spread.but if it was in your node then how can this be DCIS.Its all so confusing isn’t it.They test more than one node so if there was only microscopic cells found in only one node then the rest are probably clear,maybe you could seek a second opinion to put your mind at rest.or you could phone the BCC help line I am sure that they would be able to help.
Best wishes love Mell
Hi Lynda
As Mell has mentioned in her post, if it would help to talk this through with someone please don’t hesitate to give the BCC helpline a call. Here you can share your concerns with one of our trained members of staff who will offer you a ‘listening ear’ as well as support and information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9am to 5pm and Saturday 10am to 2pm.
I hope you find this helpful.
Kind regards Sam (BCC Facilitator)
Thank you. I haven’t spoken to anyone yet - apart from friends, who have been great - so maybe it would help me to call the helpline. I waver between thinking that I really don’t need to keep delving for more information and should just trust my unapproachable breast surgeon and then thinking that I need to know absolutely everything there is to know.
Thanks for your responses.
Lynda
Ignorance isn’t always bliss.
In your position I would want to speak to an Oncologist and ask them to explain exactly what is meant by microscopic invasion and why no further treatment is necessary.
I don’t mean to worry you but in Dr Susan Love’s breast book (a highly respected American doctor and researcher) she explains that IF DCIS travels outside of the milk ducts then low grade DCIS will become a low grade invasive cancer and that high grade DCIS will become a high grade invasive cancer. However, often DCIS does not travel outside of the milk ducts. They are exactly the same cancerous cells but are being held in the duct by an unknown force in the case of DCIS.
Because you have microscopic invasion this suggests to me that your diagnosis could possibly have been upgraded to that of IDC following pathology carried out after your surgery (but I could be wrong).
I do think you need to speak to an Oncologist or get a second opinion to ensure you are receiving the most appropriate treatment.
Thank you so much Suzanne - that was exactly what I was concerned about. But I just thought I must have got the wrong end of the stick. I’ve been worrying ever since, so I have written to my breast surgeon asking him about margins, whether my DCIS is oestrogen receptive and for a copy of the histology report. He had already told me that he was going to query the ‘microscopic invasion’ findings with the lab and would write to me with the results. We asked what effect the lab’s repsonse would have and he said ‘none’ ie whether they said that it really was invasive or that they had made a mistake, his view would still be that no further treatment would be needed. I haven’t had his reply but I’m wondering whether I should take his reply along to another oncologist for a 2nd opinion. Does anyone know whether I can do this on the NHS or would the 2nd opinion have to be paid for privately?
Lynda
I’ve just taken a look at the following website re getting a second opinion
nhs.uk/chq/Pages/910.aspx
and it says
"If you are unhappy with the advice you have been given by your GP, consultant, or another healthcare professional, you may ask for a second (or further) opinion.
Although you do not have a legal right to a second opinion, you have the right to ask for one. A healthcare professional will rarely refuse to refer you for one unless there is sufficient reason."
I would certainly ask for one if not 100% satisfied as you really do have to be able to trust your doctors when you have cancer. It isn’t worth the risk of ignoring something just so that you don’t rock the boat.
Thanks Suzanne. I am still waiting for a reply from the breast surgeon so, depending on what he says, I’ll then decide whether to ask for a second opinion.
Lynda