High-grade DCIS?

[SunnyDolly]

Hello all,

I’m posting here for any advice and stories. I’m 40 and on Monday after biopsy results I’ve been told I have intermediate-to-high grade DCIS with comedo necrosis. I have a lumpectomy booked in 5 weeks time and have been told the three outcomes of this.

My head is candyfloss, it’s just all so new and so unexpected and I’m feeling really worried. Has anyone been in this scenario before with DCIS, I’d never even heard of it before Monday. Trying to stay positive and hopeful.

@CuckooLaLa wow that is a difference and must have been a shock. Hope you’re doing ok now. May I ask were you initially told it was High Grade 5mm dcis, before the lumpectomy?

@Peachsliceyes, after the mammogram and biopsy they thought it was ‘just’ 5mm high grade DCIS so a lumpectomy and 5 days of RT was the initial plan.

I had a 12mm IDC and 22mm DCIS, it was hard to detect because it was against my chest wall. I was lucky the mammogram picked it up, they couldn’t see anything on ultrasound.

@CuckooLaLa Thank heavens for screenings. I guess they don’t know for certain till they analyse what they’ve removed. X

@CuckooLaLa Thanks so much for sharing this - even when a surgical outcome isn’t what you hoped it sounds like you’re doing well. An ultrasound missed it for me too, I don’t have regular screenings as I’m 40 so I did go back and push for a mammogram - pain in my left boob and what I can only describe as a gut feeling.
How are you feeling now?

@Onthewaytothemountains Yes, it’s hard to know what to do really as I could go private with cover at work, but I live in an area with excellent NHS cancer care (Christie in Manchester) so feel I want to stay in the NHS. Already a wait though, treatment target date for me is 28/08 but surgery current scheduled for 12/09. Did your private doctors also speak with the NHS?

Thank you! I’m trying so hard to stay positive, and whatever needs done will be done.

I’ll be honest I’ve spiralled a bit though, keep feeling very upset. Really trying to keep busy and not dwell on it but my thoughts keep creeping towards the ‘what if…’ for the surgery outcomes. Had a little cry in the car earlier, my kids are still so little. I’m sure it’ll all be fine, I know DCIS has such a good prognosis. It’s just all been such a big shock, I am so so glad I pushed to be checked out.

@SunnyDolly I’m in the Manchester area too, I saw them for biopsy results on 8/7 then surgery was 31/7, results 2/9.

I am so so glad I pushed to be checked out.

I'm glad you did. In particular breast pain is often not seen as a red flag symptom but it was a symptom for me. You have every reason to feel optimistic but I know it's easier said than done. You'll feel a huge sense of relief after the surgery.

Slightly off topic but I am now a patient representative for the local NHS cancer alliance. One of it's roles is to promote awareness of symptoms and take up of screening. You wouldn't believe how many women don't go for their mammogram. Lowest uptake is in the age 50 to 55 group.

My private surgeon and oncologist were also NHS doctors, so I guess the treatment was the same. I had to have a NHS scan as private hospital didn't have the equipment, and the NHS charged this to my insurance which was quite good. However I didn't get on with my breast nurse which upset me a lot, and there were no other options as she worked for the private surgeon. The treatment was completed much more quickly but the brand new radiology machine kept breaking down and I think NHS would have been more reliable.
Oh, also when my breast got an infection and had to be drained daily, I could go to the nearby private hospital to be seen immediately instead of having to go to A&E.
But that is just my situation, obviously it will differ for everyone.

@SunnyDollyI’m generally pretty well. I have no real lasting effects from the surgeries. Unfortunately radiotherapy left me with some lung damage. This was unavoidable due to the location of my tumor - left breast 10 o’clock and up against my chest wall. I’ve just started running again and I’m hoping getting fit again will improve it.

@OnthewaytothemountainsI had private treatment too and the radiotherapy machine kept breaking. I went to a different centre a couple of times which was a pain.

For those questioning private treatment, although the radiotherapy machine broke down the treatment was amazing. No tattoos, I was alway seen early or on time and they did a complimentary transfer service which really helped as I was pretty tired towards the end of treatment - having someone do the driving really took the stress away. I felt very well looked after.

That sounds nice.. I did have tattoos and had to drive myself but it's was only 10 miles and there was parking, the NHS hospital had major parking issues.

@Peachslice oh that seems to be moving quickly for you! Where in Manchester, are you under a Christie hospital?

@Pippsy I just can’t believe people wouldn’t go to a screening - and yet saying that I have a friend who avoided her smear tests for years. Thanks so much for your advice, I really will be happier once surgery is done.

@CuckooLaLa Good luck with the running! I had pneumonia earlier this year so a little worried about my lungs too, but will cross that bridge as and when.

@Onthewaytothemountains Sounds like you had a good treatment experience. Private is still an option for me so I’ll weigh it all up this week I think. Silly question perhaps but what is tattoos?

I have my pre-op assessment tomorrow and will see the Macmillan cancer nurse as she is onsite - are there any questions I should be asking?
So far I’ll be asking:
Is there a need for other breast to be scanned / checked too
Possibly transferring to a closer (world leading) hospital - the Christie
Is surgery date set (I’ve not had a letter yet confirming it, but I know my consultant wanted to try and bring it earlier)
Any counselling options available (have been a bit all over the place this weekend!)

@SunnyDolly No I’m under the Nightingale, which I presumed most women got sent to. Good luck

I didn’t even know this centre existed, I’ve just looked it up. It’s only 5 miles from me. Will add that to the list too! Thank you.

@SunnyDolly Did your GP not refer you to the Nightingale breast clinic? Seems to be the place you go for checks and ops even if you don’t live locally. Though if you went private could be different. Good luck for your operation, can certainly put you in a tail spin x

Tattoos are for radiotherapy, used to position the machine exactly right. They are small dots. For me there is one lowish between my breasts and one under each armpit. They don't bother me, but looking back (12 years) I'm not to impressed that they did them without telling me.

Tattoos are for radiotherapy, used to position the machine exactly right. They are small dots. For me there is one lowish between my breasts and one under each armpit. They don't bother me, but looking back (12 years) I'm not to impressed that they did them without telling me.

Going private was fine for me. You could research who your surgeon would be and where/if they also work for the NHS etc. If the hospitals (I had different ones for surgery and radiotherapy) are convenient etc.

No, I’m actually at Macclesfield. They did say yesterday I could self-refer to the Nightingale but there’s no guarantee it would expedite treatment so I think I’m going to stay put, there’s a big Christie clinic at Macc now too. My care there so far has been great too.

Embarassingly, I asked the cancer nurse yesterday about scanning my other boob and they already did 🤪 and once she’d said it I sort of remembered it too. Mix of being embarrassed for worrying so much about it and relieved! It was all clear.
Pre-op done and I’m just waiting for surgery date to be fully confirmed as they are still trying to make it sooner with the secretaries.

@Onthewaytothemountains Oh that’s interesting about the tattoos! I can’t believe they wouldn’t tell you something like that.

They should do a mammogram of your other breast before the operation and then you should have an annual one until you're 50 according to the Cancer Research UK.

I had a single mastectomy (with immediate DIEP flap reconstruction) last June due to both a malignant growth & a DCIS and was worried about the other breast but statistically (unless you have a genetic defect) the chances of getting cancer in the other breast are only slightly higher than for the general population.

I found Dr Liz O'Riordan's So Now You've Got Breast Cancer podcast really informative - she was a breast cancer surgeon before being diagnosed herself.

I’ve been following Dr Liz on Instagram for a while now! I’ll check the podcast out.
Hope you’re doing well now, @1stWorldProblems