63342members
333205posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Loris Trial

25 REPLIES 25
Member

Re: Loris Trial

I have just gone onto the trial.  I decided that, as the trial was to see if surgery was necessary, it would be ironic to have surgery and then get to the end and find out it wasn't needed.  I was pleased therefore to be in the 50% to just have active monitoring.  However, I am the sort of person that refuses to worry about things until they happen and realise that many people don't feel like that.  I am quite happy with being tested once a year.  The team have been clear that I can get in touch with them if I feel the need.

 

Member

Re: Loris Trial

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

Member

Re: Loris Trial

Thank you Ann for reassuring words. I must admit part of me feels I should do the trial because the results may help my daughters in the future if they were to find themselves with DCIS.

Community Champion

Re: Loris Trial

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
Member

Re: Loris Trial

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! 

Member

Re: Loris Trial

hi, friend do you all know that ANDC Cut Off 2018 will be going to announced soon.

 

 

Member

Re: Loris Trial

Hi Goperty how are you feeling?
Member

Re: Loris Trial

Goperty - all the very best to you for tomorrow. Xx 

Member

Re: Loris Trial

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.
Member

Re: Loris Trial

Hi, I’m miffy, I had sentinel node removal, masectomy, implant reconstruction on my left breast and reduction on my right breast at the same time on January 30th. It was a long operation but I wanted it all over at once. It was a relief to have it all over. I was sick, due to the anaesthetic but was still able to come out of hospital the next day. I am fortunate that my husband was able to look after me, but in the end I was pleasantly surprised at how quickly I progressed. I’d recommend a small cloth bag to hold your drainage bag, a charity provided one. I used a triangular pillow to keep me on my back. The hospital provided a bra, I got extra ones from Asda on line. I started doing my exercises the day after I came home, gradually at first, then built up. The same with walking, a bit further each day. I took co-codamol for a few days, but got constipated, so stuck to just paracetamol. After a week I only took them at night and was soon able to go without anything. Anything else I can help you with just say. It was a relief to have it all over with. I’m waiting for extra results on March 1st. All the very best to you xx

 

Member

Re: Loris Trial

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.
Member

Re: Loris Trial

Hi Conorchloe,

Thanks for all the time you have given my post and I hope all goes well for you. It will be interesting to learn the results of the Loris Trial whenever that may be. I wll take a look at the other posts you mentioned.

Member

Re: Loris Trial

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
Member

Re: Loris Trial

Sorry Goperty
Its the "high grade dcis awaiting mastectomy" thread
Cc
Member

Re: Loris Trial

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

Member

Re: Loris Trial

Hi Conorchloe

 

my pathology for the Loris Trial was too high so I opted for one of the other areas of calcification to be biopsied, this came back as DCIS also, so I am due to have mx this thursday with imediate implant reconstruction. Would you mind telling me how it went etc for you ?

 

 

Community Champion

Re: Loris Trial

Hi Conorchloe,sounds like you have made the right decision for you and your peace of mind .Good luck with your op .Jill.
Member

Re: Loris Trial

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.
Member

Re: Loris Trial

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 ?
Member

Re: Loris Trial

Good to hear your mum is okay. I am pleased to be able to support my Mum it takes my mind of myself. I had the biopsie, but they need to do further pathology before they can accept me on the trial. I took a friend with me to sign up for the pathology and she explained how her mum has had breast cancer three times, 2 lumpectomy and finally mastectomy, this was quite reassuring.

 

Thanks for listening

Spoiler
 

 

Member

Re: Loris Trial

Oh my goodness, that has been a horrible couple of months. You must have been so shocked to get your diagnosis so soon after your mum's.  She obviously has a different diagnosis if she's having chemo. And it's very hard to support someone else when your head is full of your own situation.

When I was diagnosed my mother was having investigations for a suspected cancer, and I'm a bit ashamed I wasnt there for her in the way I should have been. She got the all clear in the end, but I just wasnt in a place to help in the way I should. Luckily she lives with my sister so I knew she was there for her.

 

So are you now waiting for biopsy results? I assumed you must have already had them. Waiting for test results is so stressful. The other thing I found difficult, when they were offering me a mastectomy, they also started to talk about all the reconstruction options and it was all so complicated.

 

I hope you don't have long to wait for the pathology results.

Member

Re: Loris Trial

Hi Dizzybee,

 

The appointment went very well, thank you. I have signed up for the first step, which is pathology, however if the intermediate grade is on the high side they will not take me on the trial. if it is on the low side, you are correct in saying that i will be randomly put either on the monitoring or surgery list, saying that I can decline either.

 

I hope your surgery goes well and is the final step.

 

Thank you for your support, I'm in need, my mum was diagnosed a couple of months ago and has had a lumpectomy and is now waiting to start chemo, then radio plus she has to have a monthly injection for a year?

 

Hugs to you

Member

Re: Loris Trial

Hi Goperty

 

I was borderline for getting a reasonable cosmetic result from an ordinary lumpectomy, although I was a DD cup size I had a large area, 5cm. So I had a lumpectomy with lift and reduction, where they move the remaining tissue around to fill the hole and recreate a smaller shape. It was done a year ago, and I needed another op as they didnt get clear margins. I've also had one operation to reduce the other side, that didn't go well so I'm having another in a couple of weeks. And that is hopefully the last step on my breast cancer journey.

 

I think it's very hard to get your head round a DCIS diagnosis, on the one hand they keep telling you how lucky you are that it's only DCIS, but on the other, that you may have to lose your breast.

 

I googled the Loris Trial, I think if you go on it you get randomly assigned either surgery or monitoring. My sister didn't go on it because she wanted to have it removed, but that was only a lumpectomy. If they think monitoring is safe for you, can you ask for that without going on the trial?

 

It's really difficult to make these decisions when your emotions are all over the place and you're still in shock at being diagnosed. There's lots of women going through these things on this site, and lots of support available. I now have friends on here who are really special to me, other people often don't really understand what we're going through.

 

So sending you a hug,  I hope your appointment goes well and you get more information so you can choose what to do next.

 

 

 

 

Member

Re: Loris Trial

Hi Dizzybee,

 

Thank you for repsonding, What is the mammoplasty that you opted for ? how have you been ?

I am going to see the LORIS trial nurse today, the trial sounds similar to that your sister went on, i would prefer to have the monitoring as I don't really want to have the masec but as there are 2 more areas of calcification and my breast is on the small side they said it was not possible to have a lumpectomy.

 

Thank you for listening.

 

Member

Re: Loris Trial

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

 

 

Member

Loris Trial

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