Forum Discussion
It’s Just DCIS, the words of the BCN leaving me feeling like a fraud
It’s like 3 in the morning and as usual the words the BCN has said to me more than once has left me feeling like I’m a fraud and I don’t have the right to say I had breast cancer. Yes I know it could have been a lot worse, while going through this process my surgeon was pushing as long as the cancer had not got of the duct it was just DCIS, then the pathology came back and she told me that it was a 3cm with 3 areas of micro invasion, the results also show they’re double negative and high grade. I needed to go back in for my surgery.
I call my BCN as she told me to so she could go over the results again with me, it’s just DCIS don’t worry about the micro invasion it’s not like there’s a lot it’s just DCIS, so now I’m confused the surgeon is pushing for more tests, so MRI shows another 1.5cm area that was missed in the lumpectomy, sentinel node and other nodes are clear. But my surgeon has decided she still wants to take the sentinel node, after discussion it is decided that I will have a SMX and SNB, everyone supports my decision, well almost. Was told not to see a plastic surgeon just yet as I would more than likely still need radiation.
well good news results came back they got it all, she was finally happy with the margins. We all got together and it’s decided no one wants to see you no further treatment no oncologist (she did tell me at first appt that cancer is over treated), drainage good, it can be removed see you in 6 months. My husband asked me to speak to the BCN as he was concerned that they had changed there minds on radiation, so I called was, the answer if want to waste your money and go see someone you can it’s just DCIS, says the BCN
Since then if I’ve had an issue something wasn’t settling down, pain I would call, I had such bad pain under my scar area was struggling to wear the post surgery bra, so call my BCN it was just DCIS massage the area, you could come in and we can have a look at it if it doesn’t settle, but it’s normal.
well good news results came back they got it all, she was finally happy with the margins. We all got together and it’s decided no one wants to see you no further treatment no oncologist (she did tell me at first appt that cancer is over treated), drainage good, it can be removed see you in 6 months. My husband asked me to speak to the BCN as he was concerned that they had changed there minds on radiation, so I called was, the answer if want to waste your money and go see someone you can it’s just DCIS, says the BCN
Since then if I’ve had an issue something wasn’t settling down, pain I would call, I had such bad pain under my scar area was struggling to wear the post surgery bra, so call my BCN it was just DCIS massage the area, you could come in and we can have a look at it if it doesn’t settle, but it’s normal.
Anyway spoke to my GP was sent for X-ray then CT scan, turns out the pain is being caused from my ligaments the soft connective part of my ribs are calcifying on that side so it causes pain with pressure.
I don’t bother calling with concerns the few times I did was enough, as getting a response at times took days and a couple attempts to reach out.
over 3 months later and I haven’t been and got fitted for a bra and prosthesis because of swelling that flares up on my side where the drain was swells still and gets very tender and having something on there is to much at times I feel like I have a golf ball size swelling in my armpit, but I keep on massaging.
Has anyone else had this experience, I was told I had breast cancer but I don’t say it as I feel like a fraud for saying it as the words of my BCN keeps coming back at me “It’s just DCIS”.
I don’t bother calling with concerns the few times I did was enough, as getting a response at times took days and a couple attempts to reach out.
over 3 months later and I haven’t been and got fitted for a bra and prosthesis because of swelling that flares up on my side where the drain was swells still and gets very tender and having something on there is to much at times I feel like I have a golf ball size swelling in my armpit, but I keep on massaging.
Has anyone else had this experience, I was told I had breast cancer but I don’t say it as I feel like a fraud for saying it as the words of my BCN keeps coming back at me “It’s just DCIS”.
23 Replies
- I am sure many have excellent experiences of their BCN, but I prefer to deal with my (communicative and informative) surgeon and oncologist myself! And I am eight years post diagnosis and still see them once a year. But yes, in the final analysis, you work out what suits you better and do that! Best wishes.
- @Afraser where I went everything seemed to be handed over to the BCN, my surgeon has never examined me since my release from hospital, the removal of the drain handed over to the BCN was told if I had any issues or concerns about my surgical area contact the BCN I had to remove my own dressings once I was home 2 weeks post surgery 😣 . But it’s ok I’ve given up on doing that, any concerns I have now I go to my GP
- I never had a breast care nurse, nor for that matter felt disadvantaged by not having one, but every profession, medical or otherwise, has a range of ability, empathy and perhaps almost as important, a personality and manner that suit you personally. If the relationship is not working well (and you can), change it.
- Unfortunately, I think they're a mixed bag.
- @Sister my aunt has a McGrath Breast Care Nurse she was amazing for her, she organized things for her, checked up on her especially post op. She’s just 2 years over and she still calls her and checks in. Me from the get go, it was me calling checking what needs to be done, she’s only ever called me once and that was to tell me what I needed to do before my first surgery, no follow up following surgery
- I sometimes feel let down by not really having a breast cancer nurse but when I read stuff like this, I think I'm lucky. She sounds like she needs a new job. Take care @blister
- I agree with other comments, a good Physio and some treatment can help a lot with sore areas in the chest and surrounding areas after cancer surgery. Some have a special interest in post breast cancer surgery cases. I speak from experience. I also had a seroma and it took a while to clear up. Five years in I still rarely wear a bra. I am not sure why but they just aren’t comfortable.You are allowed to complain and have treatment. I hope things improve soon.
- WTF? That is disgraceful that a BCN said that to you. She sounds a cow! There is nothing ‘just’ about ANY Breast Cancer @Blister ... That was the most horribly insensitive comment I’ve ever HEARD about any form of BC. No WAY are you a fraud!
To be honest, I think a carefully worded message needs to be sent to the practise manager,as you are unlikely to be the only one who has suffered from this person’s acid comments about their condition and recovery.
I had seroma and it was incredibly painful and uncomfortable .... but it wasn’t bad enough to need draining.
Take care, lean on us ... we’ll hold you up xx - I can sympathise - I had a remarkably persistent seroma and could not wear a proper prosthesis for - well, a long time. Impossible to fit as my breast area was going up and down like a whoopee cushion. I sloshed when I bent over! All the more reason to get it seen to, if that’s what’s causing the discomfort. With hindsight, I should have been more insistent. As it turned out, it was probably never going to go away by itself, although the vast majority do. I didn’t use lymphoedema massage until very late and that made a really big difference. Best wishes for a quick resolution.
- @averi thank you for the information, but I’m not struggling with the diagnosis, I’m struggling with the after care. Maybe my expectations were to high, I truly thought once the drain came out and I healed that things would be so much better, I would go buy new bras and get on with my life.I couldn’t understand why I was getting the severe pain in my ribs, swelling going up and down. I just wanted get on with it
I might get my family to read it might cover some things I may not have explained properly
