Hello comrades!
Just wondered if anyone had any suggestions as to what questions I should be asking my consultant/ breast care nurse…
Had lumpectomy May 07 for DCIS and mastectomy (with expander implants) Jan 2nd 08 as lumps had returned. Just had results yesterday- and I didn’t ask any questions! Can’t believe I was so brain dead! Surgeon said I had the expected return of the DCIS ,but also lobular something or rather. When I said I thought this might make it more likely to crop up in other breast ,he said it was ok because no calcifications found and that I should be more concerned about the ductal. No mention of further radiotherapy or drugs and again I didn’t ask. I didn’t even ask what grade they found .Now I’m trying to decide whether or not to have prophylactic mastectomy on other side- am I over reacting? Have read on this site that lobular hard to detect on mammogram, so how do I know if its there or not? Basically, would like advice/suggestions on what I need to know to make decision.
I wouldn’t panic as it must be most disappointing to be rediagnosed so quickly but you need to think. it seems most unfair that despite lumpectomy and mastectomy the lumps have come back. Lobular cancer is found in the lobes of the breast so there must have been some breast tissue left behind. I understand that even with mastectomy they can’t remove all of it but even so you have been most unlucky. Why not ask for a copy of the pathology/histology report which should describe what they found on dong any tests. Not surprised you didn’t ask questions, it’s very difficult to ask when under emotional and physical stress, also we are dealing with unfamiliar medical trems. lobular cancer is more likely to turn up in the other breast but it’s only an increased risk, not certain. I think generally speaking ductal cancer is slightly more often more serious than lobular but lobular is more difficult to spot as it often doesn 't form lumps. Prophylactic mastectomy may be worth considering if they do a reconstruction that matches the other side, but not all surgeons are keen on it, it’s another surgery which may not be needed. There’s risks attached to any surgery e.g. wound infection which is what I got, so I’d not be keen to have another. you can get second opinions and I wouldn’t go ahead until I had really considered the pros and cons in depth.
It sounds like you may find it helpful to talk through your concerns with someone, please feel free to contact the BCC helpline where you are able to talk in confidence to trained professionals who are either breast care nursers or have experience of breast care issues.
My word what a shock for you, please call your BCN and ask her to go over exactly what was said to you. I can’t believe what I am reading here and I wish you all the best. I had DCIS widespread dx on 23 Oct 2007, had mastect and lat dorsi recon with a small implant on 1 Dec 2007 and am not having any chemo, rads or drugs. I was assured that all the breast tissue is removed with mastectomy so no chance it can ever return in the same breast so I am now a little concerned for myself also. I was told that for me, its a 1 in 8 chance of getting it in the other breast, they did find micro invasion and I was high grade. Please let us know how you get on Juliet.
Mole if you are reading this would you please contact me as you seem to know what you are speaking about.
Hello Carole/ Mole /everyone
I’m really embarrassed to have to write this (esp after reading your new post ,Carole) but somehow I’ve contrived to completely mislead you! I think the problem must be that I wrote “expected return of DCIS”. What I meant by "expected"was that when new lumps appeared after my May lumpectomy, the consultant expected DCIS and it proved so. I didn’t mean after the mastectomy and I’m sorry to have been so unclear and to have panicked you unnecessarily!
However, I certainly was told that it is possible to have a recurrenceon on the mast.side-if the chest wall becomes involved, for instance, and that I need to remain vigilant.
I spoke to breast nurse on Friday- said my DCIS was “intermediate” and v close to chest wall, but surgeon had not recorded how close.It seems that they volunteer nothing to me and I have to wheedle info out of them! Maybe they think I’m making a fuss by asking questions when they’ve got rid of the problem, but this site has shown me all the possibilities and that some people have needed to push to find things out. The treatments seem so scarily different that I can only assume they know best!
Thanks for getting back to clarify, I had thought that you had the mastectomy and then the DCIS had come back in the mast breast so that has eased my mind a fair bit for sure.
You say that the surgeon had not recorded how close to your chest wall that seems very strange to me as I was told that I had clear margins at the chest wall of 2mm and in Scotland the safe margin is considered to be 1mm. I don’t think the grade makes much difference to how close it can get to the chest wall whether it is low, intermediate or high grade (I had high grade) these grades just tell them how quickly it is growing low=slow, intermediate=quicker, high=quickest.
Dont let them fob you off keep pushing till you get the answer as they must know. Telling you to be vigilant ha jese that is pants we are all going to be vigilant after this no s’‘’ sherlock!!! How would you know if it came back in your chest is it a nasty cough you need to keep an eye out for or what!!! My bcn is very cagey at telling me anything and what I do know is because of me pushing for answers. At my pathology results from the consultant I was told very little and went in to see bcn at 6 weeks and asked to see the pathology report most of which I did not understand but again I asked till she answered what she knew about. That helped ease my mind at the time.
With regard to an elective mast on the other side if I were you I would hold fire for now. If you check on this site it appears to me that there is a pretty high recurrence rate of DCIS in the same breast for ladies who have lumpectomy or wle even with rads. Remember I was told 1 in 8 of us with high grade, widespread DCIS will get it in the other breast so on a good day that is 7 out of 8 of us who wont have it coming back, fingers crossed for everyone. LCIS I dont know that much about so you need to research more and then decide. Ultimately tho it is what you can deal with I guess as in if it affects you badly to worry all the time then get it done, if you are feeling lucky then leave as is. Best of luck to you Juliet and please keep updating on your progress.
Take care and will keep you posted on what my bcn says today when I call her.
luvnhugsCarolexxx