Thank you so so much CC, I am thrilled that you have come this far and your wonderful positive words are amazing. Very grateful to you and will keep reading these kind and positive words and let you know how I get on with this thing. I know that if I was going to get anything then DCIS is the best of a very bad job but so far it feels like a nightmare. Having said that keeping a diary detailing everything that is going on so I can physically tick off the days to resolution and remember every detail of people’s kindness xx
Helena your timeline is so very helpful in giving me a little idea of what I might expect thank you x
Kathryn i forgot to add my new breast is amazing they managed to save the skin and the nipple so it looks exactly the same as before except without the dcis going on inside.
They attach a flap for a few months underneath (you cant see it looking down or through clothes, only in the mirror) but after a few months i will have day surgery to have it removed and the breast aligned with the other one (mine barely needs aligning) it looks so normal! I will have a scar underneath in the crease so unnoticeable!
Surgery was 5 wks ago. Dont get me wrong it was uncomfortable afterwards but i was up and about walking after two days. You realise you can do more each week but i would say at 4 weeks i turned a corner and could do more or less everything bar lift or hoover or work just yet!
Results found a small amount of invasive c so all gone now apart from a small amount of dcis in skin so need further treatment for that. But basically everything is fast.
Giid luck lovely
CC
Hello KathrynB
To answer your question by treatment if you mean first surgery then guidelines are 31 days from diagnosis i wld have waited 36 days or treatment after surgery well that varies on what type of surgery but the quickest i have seen on these boards after surgery is about a month or some 6/8 weeks
I too am new to this but have learnt to manage my expectations and realise its not an overnight stop but a journey that we go on which isnt going to be a short one.
I pleaded for a sub cutemaeous mastectomy as wanted the lot out but was told even with that there is still potential of 5% being left in and coming back and that the recovery time is so much longer
I am having a wide excision via wire or what it terms i suppose a lumptechomy
My journey at a top London NHS hospital has been bumpy and lengthy , i checked with a friend who was being seen privately and actually there is very little difference
I was diagnosed 7th Feb, Grade 2 Invasive and like you DCIS but grade 3with the cancer receptors being ER4 and HER2 3+
I then had an MRi 8th Feb, then another ultrasound 22nd Feb and had to chase them up for my followup for surgery which was last week 7/8th March with surgery this thursday 15th March - so 36 days where as my friend had her surgery in 28 days
My next appointment is 27th March i made sure i had this booked and if no further surgery is required then my treatment is being proposed as 6 months chemo, 12 months herceptain and 5/7 weeks radio - however I like everyone else am dependant on what they find when they go in and do the surgery - and this regime might change - but my treatment is because of my particular cancer receptor type - i couldnt see yours?
What i am learning fromt this journey is our breast cancers are as different as we are and there is not one package to meet or treat all but the progress that has been made over the last 40 years even last 8 years is astounding and I cannot be more grateful to breastcancercare for these boards and support from others
Yes its scary knowing we have this disease (virus) yes its life changing - Good Luck and Big Hugs
I just wanted to say thank you to all you ladies who have replied to this thread. Another day ticked off. Feeling pretty tired today probably due to raging emotions. I will let you know how everything pans out for me.
Hi
i was diagnosed with high grade dcis in July 2016 and had a wle and 5 weeks of radiotherapy. Haven’t as yet had to have any further treatment. Just annual mammograms. Are you being treated at Addenbrookes.? People I know speak very highly of the team there.
Glad to hear you are doing so well Ali?
Hi jas58 thank you so much for your post. Particularly grateful to read as I thought I was calmer this morning but have spent the whole afternoon panicking. I think it might be because I spoke to my GP. One of the things that is concerning me massively is that although they have described it as DCIS intermediate because I have had nothing in writing I am scared that it will turn out to be more. The GP said he thought that was because they wait until I have had absolutely every test (I am having a mri biopsy and they are putting in markers) before giving you all the facts. They have said I can have a WLE or mastectomy at this stage. Do they say the same to everyone? Am encouraged to hear you know of people being treated at Addenbrookes and would be grateful to know something of their experience. I realise that panicking is futile and I am not sure why my mind is in this overdrive but it is! Thank you x
Jas58 sorry should have added glad your treatment was successful and you are well. So kind of you t taking the trouble to reply to my post as with the other ladies. Xx
Yes Kathryn, in respect of the final diagnosis, they do say the same to everyone, as it is all usually finalised after the final lab results after surgery. They will tell you all they know currently & it’s all usually pretty accurate anyway. If on the off chance the final results do throw up something else, then the treatment plan will be adjusted to deal with it. It will be fine.
At my final results, the bc was graded 2 from 1 initially, but it made no difference to the treatment plan.
As ever, it’s the uncertainty when waiting when the mind goes into overdrive in trying to fill in the gaps, which is hard at this stage. We’ve all been there & have got through it.
ann x
Thank you Ann for replying. Today has not been good. My lovely husband is I think frustrated by my increasing anxiety and I want to keep calm. Got no choice really. Not easy though but your positive messages really help. All the best to you x
Kathryn
Have you not had any biopsy at all yet? Normally you aren’t formally diagnosed till the biopsy results are received. I was told based on mammogram and ultrasound that I almost certainly had DCIS, but it would be confirmed by the biopsy results. The first lot of biopsies came back as highly suspicious but not conclusive (they had a lot of trouble reaching the right area as it was close to the chest wall) They sent me to see the surgeon, who referred me straight back for more biopsies.
The second lot of biopsies were done using a vacuum assisted machine and did come back positive. The whole process took 5-6weeks to get a confirmed diagnosis.
I didn’t think they did MRI scans for DCIS, Did anyone else have one? My were done stereotactically, which means using a computer aided mammogram machine.
I was very worried about the size and grade, because mine was large and grade 3. But they told me not to worry, the outcomes for DCIS are excellent whatever the size and grade.
It is a hugely stressful process to go through, and I think this is the worst stage, when you’re still trying to come to terms with it all and there’s a huge amount of information to take on board. You’re bound to be anxious. Waiting for tests and results doesn’t get easier. But once the results are in and you get a treatment plan, things settle down. All the treatment is perfectly doable, and afterwards you can start to find your new normal.
Hi Dizzybee yes I have had a vacuum assisted biopsy and have been officially diagnosed. I have been told that the MRI biopsy is assist to place two markers to show where the surgeon will need to cut if I had a WLE as he said it made it clearer for the surgeon. I am having that tomorrow and then meeting the consultant next Friday 23rd. By then hopeful I have also seen the plastic surgeon who will be able to advise me of alternatives because I believe at the moment it is my choice. All these tests are so so stressful and it seems that no two people’s experiences are the same. All of which makes you read all sorts into things xx
Dizzybee I should add that my first appointment was 8 feb so my the time I see surgeon on 23rd March it will be six weeks too.
Breast Cancer Care have a great service called Someone Like Me, where you can be put in touch with someone who shares a similar diagnoses or issues as you. This is a free service and it can be done either by phone or email.
Best wishes
Anna
Digital Community Officer
Thank you Anna I will definitely look at that. Much appreciated
Yes that’s who I meant! An excellent service
Kathryn
That is a long delay, I can understand why it is so stressful. I was given my diagnosis by the surgeon who then pitched straight into the mastectomy and reconstruction options versus lumpectomy plus radiotherapy. It was a lot to take on board at once, so I can see there would be some advantages to separating the diagnosis from the surgery consultation. But delays are horrible when everything seems so overwhelming. I’m sure it will be better when you know what is happening.
I hope your appointment tomorrow goes well. An MRI must be better than being jammed in the mammogram machine!
Xxx
Hi Kathrynb
i have just read your post and registered to comment on this forum. Unfortunately because I am a new member, I am unable to pm you. I too live in Cambridge and had the same diagnosis as yourself. I am always here to help if you have any questions xx
Hello Elmoss thank you so much for the message. I would be very grateful to talk to you. Unfortunately I seem unable to private message you. I am sitting here dwelling on everything and your message has boosted me. I will try and work out how I can private message you Kathryn
Elmoss I was just looking on my own profile and there is a tick box for turning on private messages. I just wondered if yours was ticked to enable me to message you? X