Yes, the support that you are describing was certainly was not what I was getting from the highly paid consultant with his private clinic on Harley Street (I am not joking, my work place pays a private health insurance for me, I am not that wealthy). 

Suffice to say that I am blessed with some good friends who have put me in touch with some leading UK doctors who are involved with the LORIS trial and the the NHS Sloane Audit of DCIS so I feel that I am getting first class advice now. 

I am realising that my question has turned out to be a really emotive one. If anyone else is interested in this issue in future or would like to find out more about the choices that I am going to make I would be happy to email with them privately outside this forum. 

Max56, really appreciate that you are naming places where emotional support is available, massively important! 

Just had to say that I can relate to some of your comments about your consultant - I too have insurance and have had a Harley Street oncologist for the past 8months. He is fab but It is the first time in 10yrs that I havent been given an assigned breast care nurse and have mentioned that to him.  I found my nurse at my previous clinic invaluable and really miss having someone to turn to without going to 'the boss' (although he is very approachable and always answers my email queries with a phone call).  It is bizarre that this service isn't given at the place where you would most expect it though!  Please dont be put off the private route because of this one consultant - there are many treatments I would not have been able to have if I had gone NHS, so keep that in mind.  Also keep in mind that your insurance will pay for a second opinion if you are not happy with the person you have just seen.

You are right that this seems to be an immotive subject but I guess we can only give our personal opinions and I genuinely think that Daisy was summising that LORIS was an 'alternative' treatment as opposed to a WandW one.  I agree with her sentiments regarding herbal/diet treatments totally but also realise that this is not what you are talking about. I am glad that your friends have been able to help put you in touch with somewhere you can get more information.

Just as a last comment (sorry to run on haha) - the forum has a new format which has included taking away our ability to private message each other.  We are not allowed to give our email addresses on the public forum (which is a good thing) but many of us here would like to be able to talk privately one-to-one. There is a petition you can sign requesting that PM is reinstated on around page 3 I think - please sign it if you have a moment!

Best of luck Juliana - I do empathise with the turmoil you must be feeling at this time - its awful - and I hope you can get a treatment plan sorted soon. Somehow things calm a little when we have a plan to work to.  Take care x

Hi again Juliana,  How are you doing?  This time in no mans land waiting for test/results in such an emotional roll-a-coaster.  Yes I agree with you we need to own our decision and owe it to ourselves and our families to ask all the relevent questions. I strongly believe we should be advised of the research used to base normal protocol and treatment plans given. Thoughout my experience with cancer (Daughter aged 10, two years treatment - now in late 20s) I felt I had to research to be in a position to ask the relevent questions of the consultants. My daughter was on a trial that compared the best known treatment at the time, with the same plus extra.  She came out of the bag with an additional intensiveification of chemo and radiatheraphy to the brain.  Ironicly this side of the trial was abandoned because of late side effects  (cancer of the brain) caused by the radiotheraphy.  This properly saved my daughters life as the alternative/ comparison was a drug methotraxate which effected her liver function badly and she would not have been able to tolerate.

Cancer is such a very steep learning curve. Not sure how I would feel about treatment/verus monitoring. Like Max56 not sure I would be brave to deal with the wait  between the checks, re  Loris, very personal decision, not easy.

Anyway back to DCIS - The trouble with DCIS is that its only in the last few years or so that the mamogram machines have improved and give higher resolution, which has increased the numbers being picked  up  so much sooner, and thankfully before progression into invasive breast cancer.  Research often is not published until 5 year follow.system so is limited.   I found the below useful,  mybe of interest to you.  http://theoncologist.alphamedpress.org/content/12/11/1276.full   I think it mentioned that some low grade DCIS has been followed up for15 years. Also the NICE guidlines will give you the NHS view of treatment.

Thankyou for mentioning the NHS Sloane audit, I shall be checking this out  with interest, at no time have I been pointed to this by the NHS.  Glad to hear you have access to an MRI at this stage, ( not something offered in the NHS at your stage) I hope your results are good and reasuring

Hope you can join the tots in my bad spelling! Take care and let us know your progess, Gardenlady.

Hi Juliana

It’s 4 years since your post and I wonder how you are and what you did in the end?

I was diagnosed with intermediate DCIS in both breasts this week following 2 biopsies in each, and the surgeon wanted to operate next week. I said no as like you I wanted to explore the options open to me other than lumpectomy, and a week was not enough time for me to prepare.

I’d be interested to hear from you if you’re still on here!

Best wishes

Suze

Hi Lana

I’d also posted a question, which hasn’t yet been answered, as I have intermediate grade in both breasts, so I think you might be interested to know of a facebook page (if you haven’t found it already) that is in favour of active surveillance and lifestyle changes. It seems a bit USA dominant but I’ve found it really helpful and reassuring - at last, I am not alone in wanting to avoid surgery! 

You can find it as DCIS Integrative Support and Empowerment. It also links to a website https://dcis411.com/ 

I hope you find the information helpful.

Best wishes,

Suzanne

Hi

just came across this discussion and having been diagnosed with DCIS, I just wanted to add caution - post op pathology found invasive cancer and I would advice anyone with DCIS (regardless of grade) to insist on a MRI breast scan before making a decision.

Hi!

I’m trying diet and lifestyle for intermediate grade in both breasts. Have a ‘second opinion’ meeting booked for tomorrow, same hospital, different surgeon, but really don’t want surgery that the NHS push for. Breast care nurse has advised me that their surgeons are all likely to be of the opinion that anyone who doesn’t want surgery is a bit odd!! Have a list of questions to go along with!

There are some great facebook groups if you’re on FB and interested? Many people taking vast amount of supplements so I am considering seeing a naturopath too. There are some great books too.

Hope your path is good!

Suzanne

Just wanted to stop and say hi SuzeS and Slock,

It's great that you have a list of questions to take with you, as it's important to talk through any alternative diets or supplements with your medical team. Again, when it comes alternative books, always check with reliable sources and your doctor.

All the best with your decision,

Moderator Anastasia

Hi, I hope you're doing ok? Can you give any further info on your journey with DCIS, I am trying to find out as much as I can before I make any decisions.

Thanks