DCIS

Moz61 1 day ago

6 replies
35 subscribers
117 views

I've just been diagnosed with DCIS and been provisionally booked in for a mastectomy for my left breast - I have an appointment 9th Jan to speak to someone and surgery booked for 21st January. What questions should I ask on 9th? Has anyone decided not to have a mastectomy when diagnosed with DCIS? I'm feeling so down and scared - thank you

BethS 17 hours ago

Hi Moz61

Did they say whether it was low, medium or high grade DCIS and how big it was. My consultant showed me the mamo and mine was widespread and was high grade so a mastectomy made perfect sense for me. I could see why a lumpectomy wasn’t an option. Have you been told what your plan is yet? What are the chances you’ll need radiotherapy and/or chemo? My consultant advised me pre op that there was a 30% chance ( might have been higher) of finding micro invasions post surgery and sure enough they did. Very small but more than one. I have read articles from the USA where some DCIS patients ‘wait and see’ and have regular checks instead. I’m not sure I could have coped with that. Xx

Moz61 16 hours ago in reply to BethS

Thanks for replying. I didn't ask. They just said 41mm and as I have small boobs it means mastectomy on left breast. Didn't say anything about radiotherapy or chemo. I guess I'll find out more on 9th Jan. How were you after surgery?

latchbrook 15 hours ago

Hi Moz61 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and I was diagnosed with breast cancer in April 2022 so know how scared you're probably feeling right now.

The online community is divided into different support groups so I'm going to recommend that you join the breast cancer group, which is a great place to ask questions, share experiences and get support.

To join, just click on the links I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

It would be great if you could put something about your diagnosis and proposed treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Moz61 15 hours ago in reply to latchbrook

Thank you

BethS 13 hours ago in reply to Moz61

Yes, they should tell you what the treatment plan is. I wasn’t too bad after surgery. It was mid summer and for once it was sunny in Scotland so I was out of hospital next day, ( drain was removed whin 24 hours of surgery), and I went out for a walk in the local park. I diligently did the stretching exercises in the following weeks but it did take me a long time to get back to ‘normal’. Even now, 18 months on, I can’t quite stretch as far as I used to. I’ll keep trying . I had 5 sessions of radiotherapy which was easy enough and I didn’t need chemo. DCIS is pre cancerous so fingers crossed for you. The mastectomy might be all you need. The waiting is the worst part so try distract yourself over the next few weeks. I watched a lot of TV for distraction. Make sure someone goes with you to the consultation as it’s hard to concentrate. Also ask if you can have a copy of any reports they read out. I took photos so I could read them again in my own time as the detail didn’t sink in at the meeting. Best wishes. Xx

Moz61 4 hours ago in reply to BethS

Thank you - that's really helpful x