Hi, I have recently been diagnosed with an intermediate grade DCIS (also have 2 other areas of microcalcifications in same breast). I have been given three options-do nothing, a masectomy or take part on the Loris Trial. Is anybody out there on this trial who can help me with my decision? Thanks
Hi Goperty
Wow, that’s a very wide range of options, from do nothing to mastectomy.! I haven’t heard of the Loris Trial. But when my sister was diagnosed with DCIS a couple of years ago she was offered either WLE or a place on a trial which was effectively watch and wait. So I wonder if that was the Loris Trial?
I really feel for you, I had high grade DCIS and had to choose between therapeutic mammoplasty and a mastectomy, and that was hard enough. You have to make these decisions when emotionally you’re still in shock and trying to take everything in at once is so difficult.
My sister opted for surgery because she didn’t want the uncertainty. I chose not to have the mastectomy because I wanted to save my breast if possible.
I hope someone else can tell you more about the trial, sending you a hug and wishing you all the best.
xxx
Hi I’m new to this forum but have recently been diagnosed with intermediate dcis spread over a wide area. My first hospital gave me no choice but a mx. On referral to a specialist hosp and a much more in depth chat with a fantastic team where I though it was a cut and dried decision for an mx and recon with diep they told me about Loris which has sent me into a spin. I am now going for a 2nd biopsy In another site to confirm I am intermediate, not high risk because they will not nominare me for loris if so. If I am accepted my dilemma is do I a) undergo several years of uncertainty and numerous uncomfortable hospital visits or do I b) have the mx and recon and rid of the uncertainty forever hopefully? Anyone else had or have this decision to make? Is surgery and recon so bad ?
Hi goperty I am in exactly same position as you. Intermediate dcis in several areas waiting to see if accepted on Loris. My 2nd biopsy today but ive decided i’m going to cancel and go ahead with the mx andc recon. It’s a major decision for me but I dont want this hanging over me for so long and just want to get on with my life. Pls let me know how you go on if that’s ok.
Hi Conorchloe,sounds like you have made the right decision for you and your peace of mind .Good luck with your op .Jill.
Hi Go! After much consideration i decided against Loris because i think they wld have declined me anyway and decided against do nothing (i would have been wondering every day).
I opted for mx with immediate diep recon. It was the right option for me personally.
There are a few ladies on the “high grade dcis and dcis” thread who have only very recently had the same op you have opted for. Flip over there and take a look specifically at “Miffy” who is up and about doing 10,000 steps and “Whales” who is doing great.
My personal experience is that everything has gone brilliant. My new bresst is possibly better than the other and they were able to save my nipple so like they say, exactly the same with different stuffing!
Im not going to lie, the diep flap is tight and sore and a bit of a shock at first but i was up and about in hosp on day 3. 3 wks post op and its just a case of keeping on top of the pain and moving.
The waiting is the difficult bit and i can see youve had this hanging over you since oct same as me.
Hope this had helped
Cc
Sorry Goperty
Its the “high grade dcis awaiting mastectomy” thread
Cc
Whoops i meant 2 wks post op. Just been for routine app at dressings clinic. All is well. Saw surgeon who is happy with everything and I’ve been discharged from his clinic until the next stage which is realignment 6 months down the line.
Mx specialist to see next week for results and hopefully all will be good.
Hope you are ok x
Yes it will. Its a tough decision to make when there’s a percentage who could have what me and you have and actually outlive it without any change.
Goperty - best wishes for tomorrow. This time tomorrow evening you will be on the road to recovery. I will be thinking of you. Hope to hear from you soon.
CC xx
Miffy - great advice. I bought 3 bras all wrong to be told yest i should be wearing sports bras. Ordered a pack of 2 back fastening from asda at £8 and hope ive got it right this time.
Hi Goperty how are you feeling?
Hi, i have just been diagnosed with intermediate DCIS. For the last few weeks I’ve just gone along with things as the hospital says reassuring things like ’ we’ve just seen a tiny bit of calcification following mammogram’ and ’ very unlikely to be anything, but would like to do a needle biopsy’ and then needing a vacuum assisted biopsy as they didn’t get enough cells first time. But now with the results, they have offered me the option of taking part in the Loris Trial. My head is in a spin and I’m feeling sick with anxiety at having to make the decision.
I really really don’t want unnecessary surgery, but then panic in case the watchful waiting in fact ends up in a worse situation with invasive cancer!
Has anyone else opted for Loris and been accepted on the watching part (I know I could still be allocated surgery) and if so how do you feel about it a year or two down the line?
I am am so bad at making normal decisions about small things, so this is horrendous for me!
Hi Pips,
This is always such a dilemma, ie the risk of over treatment versus knowing it’s there…what if…?
I’m not in your position, as I did have an early invasive bc picked up on mammo, so even if this does happen, it can be sorted out, with full recovery the normal outcome.
From what I’ve heard, you are well looked after on trials, so all should be well anyway.
Hopefully, one of the other ladies will be along to share experiences of this.
ann x
Hi, I was offered the Loris trial yesterday after having been told I have low grade DCIS. The idea of being monitored as opposed to surgery/radiation therapy really appeals and there is the added bonus that you may perhaps be helping future patients. However I feel that an annual check up is not frequent enough. Also, I have already had two biopsies and would not want another (poking the wasp’s nest I feel), so if something does show on your first annual mamogram, then do you have to go through a biopsy process again. If anyone out there is already taking part in the trial, how are you getting along psychologically? It’s bad enough waiting for results, let alone, knowing you have cancerous cells and having to wait a year to see if they have grown.
Any advice would be greatly appreciated because I have to see the surgeon in the morning and I am completely at odds as to what to do for the best. Thank you
Hiya,
I live in the US but am considering a trial here. Did you do the trial, are you still on it, what is your feedback? Or have you had surgery?
Thanks for replying
Rebecca