Newbie with ILC & DCIS

Hi, newbie here. Diagnosed in July with ILC after first mammogram. No symptoms so complete shock. I’m 53 so menopausal & had just started to feel in control of my health & happily taking HRT, which I’ve stopped as taking Letrozole, & night sweats have come back! Few other symptoms, so feeling lucky really.
I was dealing with things ok as ILC is unifocal & small so was expecting lumpectomy with radiation, until was advised on Tuesday that mastectomy has to be considered due to low grade DCIS. It’s floored me & I am certain I don’t want such drastic surgery for DCIS when there’s a chance it won’t progress to invasive cancer. I haven’t had any surgery yet, & am aware that things may change again depending on the results. Has anyone been through anything similar?
Thank goodness for forums like this. I have so many questions & thoughts & it’s good to share them.

I am so sorry you find yourself in this situation. I think you should ask for a second opinion about your surgery, a mastectomy seems a bit drastic for low grade DCIS. I had high grade DCIS which had just begun to turn invasive and did not have a mastectomy. I had a wide local excision with therapeutic mammoplasty and sentinel lymph node biopsy to my right breast last September followed by radiotherapy in December and January. I recently had my first mammogram since the end of treatment and it was all clear, I still have my breast and it looks and feels almost normal.
My breast care team were very clear from the start about not wanting to over treat me. I know every case is different and until you have your full results nothing can be definitely decided but it does sound as though your team may be over treating you.
Please do try to discuss all the available treatment options with your medical team and tell them how you feel. I hope it all works out well for you and that in a few months time you feel as well as I do. Let us know how you get on.

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Hi welcome , you could maybe also ask the nurses on the forum about this too ?
Ask our Nurses your questions

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Hi Nessie,I was diagnosed with invasive ductal cancer grade 2 and low grade ductal carcinoma insitu last Thursday.It was found during a routine Mammogram and cannit feel a lump.I am booked to have a wide local excision / Lumpectomy and sentinal nide biopsy to see if it has spread.Thus is being done as a day case.Did you go in as a day case and what pain relief was offred please.I am a nurse so have taken time off work as cannot cope with work since my diagnosis.Many thanks

Hi Boo,
I went in as a day case too, I think that is normal for this procedure. I was admitted to the ward at 7:30am and went home around 4:30pm the same day.
I was given codeine pain relief tablets but only needed to take them for a couple of days, I didn’t actually experience too much pain, much less painful than I expected it to be. I recovered quite quickly and was doing three mile walks from four days after surgery. The worst pain or discomfort was when travelling as a passenger in the car, much better when I was able to drive myself I think about 10 days after surgery, easier to control the speed etc when going over bumps and round corners to lessen the ‘jiggling’ on my right breast.
I hope your surgery goes well and you recover quickly and get clear margins and lymph nodes as I did.
It is now 16 months since my surgery and 12 months since I finished radiotherapy and I feel as fit as I did before treatment. In November I took part in a Women V Cancer cycle challenge and cycled 360 kms across Rajastan in India.

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Hi Nessie thanks for your reply.I am 15 days post surgery and healing well.Have been on long walks .Hope to start walking the dogs soon but need advice from bcn when I can do this .