WLE results - no rads - confused!

Hi Jools,
I don’t blame you for digging your heels in, lack of care/info on this sounds appalling!
I had mastectomy for DCIS, but the surgeon made it quite clear that if I went for the lumpectomy I would need rads afterwards. (This was one thing that influenced my decision.) Mine was high grade rather than intermediate, but even so! And not to have a mammogram for 2 years seems pretty poor to me too, I have a check-up every 6 months, and had mammos every year. I’m 3 years down the line now, and neededn’t go back for a year, but will still have annual mammograms for 5 years.

Did you see a BC nurse while you were there, she may be able to throw some light on the difference of approach.

Hi Jools456,

just wanted to let you know that i admire your spirit,you certainly need more re-assurance than you have been given so far.

I think some doctors forget that there are lives behind these hospital files,and although they may well be right in what the’ve told you,they certainly owe you an explanation to put your mind at rest.

Communication skills are an important attribute for a doctor to have,especially when their dealing with life threatening illness,and unfortunately your doctor doesn’t seem to have mastered this skill

Good luck and don’t give up until you have a satisfactory explanation.

Traceyxx

Hi Jools

I had a similar situation. I had WLE for intermediate DCIS. Was told by the surgeons that radiotherapy was an option and sent to oncologists to discuss this. The oncologist didnt say it was necessary or unnecessary and said it was done to me. I tried every which way to try to make him come down on one side or the other, but he wasnt having it. Infact, if he sat on the fence any more he would have splinters. I was left to do my own research and I found lots of variations. Basically, if you are over 50 and have low grade DCIS with clear margins, then rads not necessary. If you are under 50 with high grade or widespread, then rads needed. I was 48 with intermediate, so right bang in the middle, statistically. There is a clincal trial ongoing which is looking at the need for radiotherapy for women with DCIS. I guess it does depend on your individual circumstances. You need to get your oncologist to really explain things to you.

Cathy
x

Hi Jools

You sound like you are not going to stop until you get the answers and good for you, you deserve them and shouldn’t have to fight for them in this way.
The first onc I saw had a terrible bedside manner. I had to put on a hideous yellow top thing that was far too small even for my remaining breast and a half (!) and when he came in he introduced himself by his surname then stuck his face in the notes rather than looking at me. I had no confidence in him. Luckily, the main man was back for my next appt and didn’t make me wear the yellow thing and had the notes there at the side, but looked at me and had a proper conversation. Amazing how much they vary. Good luck getting your answers.
Kinden
x

Hi Jools
I was diagnosed with DCIS intermediate grade a year ago.
I had a WLE with clear margins and no radiotherapy or tamoxifen was offered.
I am 68 and saw the consultant every 3 months,then 6 months and after a year had mammograms of both breasts. I have to see the surgeon in 2 weeks,then 6 monthly again.
I also felt worried that I wasn’t getting enough treatment,but the doctor explained that the risks would outweigh the benefits in my case.I just hope he was right.

All I can say is things seem ok so far,I will know more when I go for my next checkup. The results on my mammogram report state" no significant abnormalities were found"

I hope all goes well for you

Love
Annalyn