Newly diagnosed dcis

I thought I'd do an update as I had my appointment today after the MDT meeting today.  I wish I could say it was a good appointment, but it was actually pretty awful! So I'm sorry its long but I'm so frustrated!

I saw a new consultant/surgeon and a new breast nurse. The surgeon spoke at a million miles an hour, about a load of stuff I'd never heard of before. She was so obviously in a rush. I tried to ask the questions I took, but a lot were irrelevant as she basically said 'we are doing this procedure and that's it'.  All the booklets and literature say you will discuss options and make choices, but there was none of that.

She said she is doing something called a LICAP (well actually she didn't say what it was called, I had to ask the nurse!). She has booked me in for 17th October as that's 'the only space she has' (a date she only mentioned as an afterthought). She was talking about the procedure and kept saying obviously this and obviously that.... nothings bloody obvious I'm not a breast surgeon and haven't had breast surgery before!

If I hadn't prompted her she wouldn't have told me the grade (it's high grade). she just said that normally she 'puts all that in a letter'.

The caveat to all this is that she actually ISN'T certain she is going to do this procedure as they've now decided I need an MRI first to double check there isn't anything invasive. Only then will it be definitely confirmed what is happening. If something  shows she has said we may need more biopsies and will discuss other options. But my next appointment is now on the phone instead of in person so I'm dreading trying to talk about these things on a phone call, especially if it's as rushed as today!

And then to make things even more laughable the nurse in the appointment was very hard of hearing and she misheard half of what the surgeon had said. She thought the surgeon had said mastectomy was most likely as I am too 'slim' for LiCAP when actually she had said the opposite! The nurse couldn't hear most of my questions or misheard them, and when she did hear she didn't know the answer (like I asked if I had to isolate before an op due to covid and she said she didn't know as she's just had a load of time off!)

I then asked for more information about LiCAP and the BCN went to find some as its in none of the books. I could hear her asking the surgeon in the office where it was, and the surgeon told her to just 'look it up and print it off'. Google I'm presuming as she gave me a leaflet from another NHS Trust! Apparently it's a new procedure.

And so I don't really understand much more as the leaflet wasnt specific to my circumstances (it referred to invasive DCIS which I don't have). And it seems the surgeon I saw today is the only one in the hospital who does/knows this procedure!

I'm actually feeling angry as there was no dicusssion, no time to talk (like all the lovely posters in the waiting room always say you'll get!) The nurse I'm sure was a nice person, but if she can't hear what is being said she can't really help.

I'm so upset as its more waiting, an MRI and then another appointment. And even if MRI shows nothing I'm waiting 6 weeks+ before they do anything, and even then it's a procedure no one can explain properly to me, and there are certainly no options!

@DaisyB that sounds awful . I'm having a LICAP partial reconstruction after removal of DCIS and it's been explained to me as taking a flap of skin and fat from the side of your chest, leaving a bit of it connected so the blood vessels are preserved, and using this to fill in the hole left by the removal of tissue from the breast. I'm having a quarter of my left breast removed so it seems like quite a big flap, but apparently it will all be fine... My surgery is 21st September so I'll let you know how it goes,

My appointment was useful, but I did have to wait 2.5 hours for a 10 minute appointment, so could have been better!

Hi ladies, 

It sounds like you are all going through some really difficult times, wish I could give you all a proper hug! Afraid a virtual one will have to do. These appointments are so difficult, especially if the plans keep changing. 

I've had my final day at work and am now trying to get everything sorted before my "big op" day.  Tomorrow includes an important trip to my favourite wool shop (I love a bit of crafty therapy) so I have something nice to make when I'm feeling a bit better. Kids are at a sport event all day.  Got to start blitzing every room in the house, and meal prepping for the freezer.  Think this will make me feel calmer before the big day.  

Think I've just about told everyone who needs to know by now, my youngest was keen her friends' mums knew what was going on.  Hoping I'll be able to take up all the offers of help for when I'll need it, do you think they'll agree to clean our toilet and do the several loads of washing my family get through each day ?  Suspect they're maybe just thinking they'll pop round for a cuppa and a biscuit...

I'm a bit obsessive about finding as much info as I can to feel prepared. Love the positive pictures of people at the top of mountains just a couple of months after their surgery.  Helping me to feel we can get through this. And maybe I'll get a lovely tattoo on my nipple free boob!  

Take care everyone and hoping everything gets easier soon xx

Oh  I am so sorry to hear this. Seems like the two of us can’t catch a break right now! 
why did they switch your surgeon? Can you request a different surgeon? You certainly don’t want to be rushed when going to an appointment and they definitely should have the information at hand to give you!!

Im sure you are very anxious with the wait and the uncertainty now. It’s like you’ve gone to that appointment and come away with more questions than answers. It certainly sounds very confusing. I would make a complaint and ask for a different BCN- if that one has been off maybe there’s one who’s more knowledgeable. I’m sure someone has been covering while she’s been off. 

usually (in Northern Ireland) consultations are recorded by the doctor on an online system that can be accessed by the Gp. This might be a good time to contact your Gp and see if they can even help- maybe to explain it a bit better and put your mind at ease. I’m sure this is done across the uk.

im here if you need a chat,

Helen

 thanks, its nice to know someone else is having this mystery procedure! I did a lot of googling when i got home to get some more information.  I am going to have to try and get clarification on how this surgeon does it as it doesn't always seem to be a 2 step process.  The surgery itself seems reasonable, it's not that I'm against it. It may well be the best option, but it'd be nice to discuss how they came to that conclusion.

I do have a 5.5cm area of dcis and only size D breasts, I'm also only a size 12 in clothes so don't have loads of 'spare' in that area. I mean she did have a look at me, but it was brief! So it seems like a lot of removal and replacement to me. What I can't find in my googling are many before and affer photos, which I thought I'd get to see

MamaH 0h gosh, what I'm going through isn't comparable to you as I know you have a huge op ahead of you and with your baby too! I know I'm lucky to be offered some partial surgery instead, but it would just be nice to have more details,  and without such a delay too! Honestly the 6 week wait has shocked me, and that's before I then have recovery time, start radiotherapy etc.

My surgeon I had been dealing with before did say I may end up with a different surgeon for the procedure if it needed cosmetic/reconstruction. Which is a shame as I liked him! And I assume this surgeon was picked as she is the only one who can do the LiCAP procedure. Doesn't really explain to me why the LICAP procedure was selected though.

I'm going to make loads of phone calls today, to a couple of helplines, to the BCN team and then maybe my GP if that gets me nowhere!

I had a 5.5cm area of DCIS in DD breast, they did a wide local excision with mammoplasty, which is basically moving everything around to fill the gap. To be honest there's a bit of a difference in size (not noticeable with a bra or clothes on) and a bit of a dent which the surgeon said he could fill with fat cells at a later date if I wanted.  I think it depends on the surgeon and the health authority that you come under as to what procedures they do.

Hi 

Good on you for preparing. When is the big day? I’ll be thinking about you and hoping all goes well. sending you a big virtual hug too. 

 how did you get on today? Did you manage to get any more information?

Gertie15 thank you for sharing your experience. Things do differ so much between trusts. I am very fortunate as I have private health care through my husbands job so I’m just awaiting confirmation that they will cover both mastectomies (as there’s only disease in one breast however it’s what my surgeon has recommended and would recommend regardless of nhs/private). My grandmother died when my dad was 14 of breast cancer in her 40s so they want to reduce my risk as much as possible. The insurance company was in touch and thinks there shouldn’t be an issue so they are contacting the consultant to confirm all before approval. I hopefully will have approval next week and surgery the following.

Happy Friday everyone, today is the first day I haven’t cried this week!! Long may it continue.

Helen xx

how long do you have to wait until your op now? I've had lots of offers of help too, but I do wonder myself how much that help will extend to cleaning and all the other tasks!

I'd love to think I'll be climbing mountains in a few months.... but I'm not sure I could climb a mountain before to be fair! Although I did do one of the Macmillan 26 miles mighty hikes last year, which was awesome!

Gertie15 I really do find it amazing they can take so much out and still find enough left to pretty much fill the gap! Our bodies and modern medicine are pretty amazing really aren't they!

MamaH   Yes I managed to speak with a breast care nurse at the hospital today.

She was really good and explained lots to me. I know now that the after the MRI on Sunday there is a 50/50 chance i will need further checks and biopsies. So at least I'm prepared for that. And it does mean with the surgery not being until October there'll be time for any results to come back if biopsies are needed.

If the MRI shows nothing different then I should be told next Thursday exactly which surgery I'll be having. 

Surgery will definitely be 17th or 19th October depending on how long whichever surgery needs to be. Then the radiotherapy part (if needed) won't be until at least 4 weeks after surgery.

So I'm happy as I know a bit more now and she was really lovely and helpful! 

I have felt less emotional today too, I also hope it continues for a few days at least!