DCIS to mastectomy to invasive

Such a lot has happened to you recently, and none of your choosing, it’s not surprising you are feeling as you are even though it is a horrible way to be feeling. There is a period of great adjustment to go through when these things happen to us. It’s hard to tolerate the feelings it brings, but I feel that the  only way through this is to acknowledge the feelings and process them which requires bravery and of course support. I’m sorry that your sister is not able to support you while she too is dealing with all of this. I have found it takes a little while to work out which friends and family can cope with supporting and which can’t. Is there anybody else you can reach out to who can support you? Although it is over the phone again, McMillan do offer a telephone buddy service which is run by volunteers. I have a lovely volunteer who calls me once a week, and that is a valuable strand of my own support network.

There are numerous face-to-face Cancer support groups around too. This isn’t something I have tried yet, but the prospect is in my tool kit if I feel I need it. 

I think many would say that you are at the hardest stage, you have certain pieces of the jigsaw puzzle and certain pieces are missing, and we only have our imagination to fill in those pieces without full information about what’s happening to us. Once you have your treatment pathway in place, with some dates, it gives life a bit of structure instead of everything just spinning. 

it sounds like you are close to your sister, so it must be disappointing that she is not able to support you in the way that you would like. Would you be able to have a conversation with her about it? It may be that she feels she doesn’t want to talk about it for fear of upsetting you. Also, just because she can’t support you now, doesn’t mean that she may not be able to support you when she has come to terms with it herself too.

I don’t know whether it will bring you any reassurance to know that what you are feeling is completely but agonisingly normal. Sending you support through the airwaves. Xx

My experience was very similar to you although I am a bit older (54 when diagnosed). I had mastectomy with immediate implant for dcis. They found foci of invasive cancer the largest being 1.7mm. They took x3 lymph nodes and 1 was positive, then found to be her2 pos and hormone neg. The next steps were ct scan and bone scan which were clear. It was really stressful, every appointment the news seemed to get worse and the waiting between appointments awful.

That was 2021. I completed 6 TCHP chemos, 15 radiotherapy sessions and then a further 12 phesgo. I still feel a shocked that this all happened and I’m more or less back to my normal self.

It all feels a bit better when you have your treatment plan in place and things start to move forward.

Let us know how you get on. There is a good blog by Irish girl about how she coped with treatment and how to prepare etc. x

Gilliebean, can I ask how long you had to wait to start your treatments following mastectomy? x

The mastectomy was July and then seemed to wait ages for her2 result. When that came back positive I had ct and bone scan in August - they said this was routine due to the lymph node being positive and weren’t expecting to find anything - I found this really scary and stressful!
Was about to start chemo in September but my daughter got covid so it was delayed until the middle of September- felt I was waiting for ages! X

Hi, sorry u having to go through this, I was diagnosed with Grade 3 stage 2b invasive ductual breast cancer oestrogen positive and her2 positive. I know it has gone into 2 lymph nodes as it shown up on ultrasound. With me they started chemo 1st which is ec-t 1st 3 cycles is the ec part and 4-6 being the t part which I have just started and will also have phesgo injections for a year, I have 2 more cycles of chemo left then should have surgery and radiotherapy.

It is doable, just take one appointment and treatment a day at a time and try to have things to do to keep focused on something to try and help get through some of the down days.

Good luck. 

Thanks for replying. I getting really stressed now. I’ve had 3 surgeries including mastectomy 5 weeks ago and when I saw my consultant just over 2weeks ago, he told me that I should receive a letter from the oncologist in the next 2-3wks.  It will be 3 weeks this coming Wednesday.  Yes I will phone on Monday but I’m just trying to find out from other people how long they had to wait for chemo/radio etc. 

Hi. I hope things have improved with your sister. I wonder if she might benefit from some of the family support. I read another thread from a daughter on here who seems to get strength from the group.