I am positive you will be able to help and support the ladies who come on here after you xxx
I do not know if this will work, but if you click to reply again, it is possible as it was a lengthy post that you might be able to reload it again. When you click on reply, sometimes at the top of the box there is a message and asks you to click on Load or Discard, click on Load and it might come back.
Kathryn, great to hear you've made a decision that you're happy with, and I hope it all goes well.
Thanks for recommending the John Boyages DCIS book, it is so helpful and reassuring. I really wish I'd had it when I was diagnosed, I think it would have really stopped some of the panic.
Kathrynb, I don't have anything like that on my profile, I have also looked quickly on the search bar, they suggested looking for an envelope icon???. It may be that because I only registered today (literally after reading your post) I am a 'newbie' member and can't have that option yet.
i have a bit more time to search tomorrow night....I'll let you know x
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
Good luck for tomorrow, will be thinking about you xxx
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!
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.
Digital Community Officer
You are welcome Kathryn and as everyone says the waiting for results is the hardest part. We aren’t allowed to mention specific people/surgeons etc on this website understandably, but you can privately message if you want to get more information. I found having someone to talk to who had had the same diagnosis as me very helpful. Breastcancer.uk can arrange this for you through the main website. I had a lady phone me before, during and after my treatment. Can also recommend the book DCIS Taking Control by John Boyages. He is an Australian, but the book is very readable and informative, in a really positive way. It helped me a lot. X
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.
Kath i wish i could give both you and your hubbie a big hug. Xx
Ann-m is right you won't get any final answers until after surgery once they have analysed it all. Unfortunately things can change.
I had mammo, scan and biopsy and was told it was DCIS between 7 & 9 mm, low to immediate grade. I was warned that they would look at the DCIS under a scope but it is non invasive cancer but there is a chance it may contain some invasive cancer. It turned out to be 6.5mm and all non invasive but the wait was awful.
A letter was sent to my GP after my first meeting with the surgeon, i believe that's the plan Ann-m was talking about.
I know what you mean about trying to keep calm my emotions are all over the place. I've just had my nightly cry. Now I'm off to bed.
Are you still working? Apparently you can ask your GP to sign you off. I didn't know that and worked for a further 2 weeks after my diagnosis. I wanted to tie up all my loose ends, which i did. I told my manager 2 days before the op.
hugs to you both💞.
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😘
My experience was similar to yours, everything took a long time to happen. Initial mammogram early June, finally diagnosed end of July, surgery 24th August, another op to get clear margins 21st September, started rads 30th November.
And that was only because I complained at all the delays, which were outside the NICE guidelines. So it took six and a half months in total.
I do have private medical insurance but never used it, the surgeon told me there was no difference between BHS and private care. In my area they were really overstretched to fit in radiotherapy in particular. And they were very blunt that I wasn't a priority., which was hard to take.
On the good side, I never waited more than three weeks for any operation, once I got the appointment with the surgeon. And two of my operations were breast reduction to my non cancer side for symmetry, I thought they might have a long waiting list because it was cosmetic, but they treated me exactly the same as if it was the breast cancer.
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