Hi Juliana, welcome to this very informative site, while I had the same diagnosis as you, I did go for the lumpectomy and I am half way through a 25 dose of radiotherapy, I would like to follow your discussion to see what other thoughts others have on alternative options.  Wishing you well, Shirley x

Dear Shirley, thanks for replying. Did you consider not having surgery or trust your doctor that this was the thing to do?  And how are you feeling  now after the lumpectomy and radio therapy?  Both, physically and emotionally?  I hope not too bad! Juliana 

Hi Julia, sorry you've needed to join us but welcome!  I was diagnosised with DCIS in 2011 from 3 tiny spec of calcification on a rountine scan, a wire was place at biopsy stage so if I choose lumpectomy they could locate.  I decided to have a mastecomy. My decision was based on prior evidents that biopsies do not allways give us a fully informed picture.  My Husband had only one  biopsy out of eight positve for med grade cancer.  Three treatment options,  one was watch and wait -  He choose to have his prostate removed - Histology report upgraded the cancer to high grade/aggressive and widespread but luckily contained. He still has radiotheraphy in the bad should his cancer return.

I know biopsies for breast cancer are not so hit and miss as in prostate cancer but I felt more comfortable with a radical op, also I did not want unnecessary repeat surgery if clear margins were not obtained by lumpectomy. By having a mastecomy I was told I did not need radiotherapy to mop up stay cancer cell not visable on a scan, providing my lymph nodes were clear. At histology my three tiny specs (not visible on ultra-sound) had grown to be 2cm high grade cancer. The remainder of the breast had many differing types of abnormal cell change close to the area of DCIS.  (pre-cancerous I assume)  My consultant changed his opinion from possible overkill with my choice to stating that these cell changes would  have been very difficult to monitor!!

Sorry I have no recommendations or knowledge of other approaches, only my own experience. I will follow your post with interest.   This is a very difficult time for you, a shock to the whole system so forgive me - May I ask why you are against the removal of your cancer? - Cancer caught early is very treatable.

Hopefully other views will be forthcoming.  If you have any questions re my expeience please ask away.

Take care, gardenlady.

Hi "GardenLady" - 

Thank you very much for the reply. Firstly, I really need to emphasize that I am at the really early stages of my research into all this.  

Although I am deeply grateful that I live in the UK where all sorts of medical options are available to me I also think that the focus of western medicine is sometimes very narrow and that it looks at 'body parts' rather than the body as a whole.  I may well opt for a lumpectomy or even a mastectomy but I want to understand whether that's the standard presciption made by a private consultant or really the best solution.  

Several years ago I had endometriosis and a couple of small cysts in my womb.  The consultant wanted to put me on HRT and operate on the cysts. I opted for a more natural solution (bio-identical hormone treatment) and the cysts and the massive period pains are now completely gone. I was pretty certain that stress had been a major contributing factor when the pains first started (my father died and I had a very serious situation at work) so I felt I wanted to explore other non-chemical/ non-invasive options first. Of course this did not carry the risk of cancer so it was easier to experiment.  

As far as I can see the LORIS clinical trial is doing something quite unusual.  Normally in clinical trials an existing treatment is compared with a new and hopefully better treatment.  In this case an existing treatment is compared with no treatment, just monitoring.  I want to understand why there is this possible revision in thinking - unless I am over-interpreting?

I hear in Germany they have a couple of specialist clinics where western medicine and a holistic approach are more integrated and the different experts talk to each other to find the best solutions for individual cases. I would really love something like that.  

I think in the end for us to come out well on the other side we have to really 'own' our own decision and feel that we made it based on the best possible professional advice and research.  I felt my consultant lacked humanity and empathy when he gave me the results of my biopsy, drew some diagrams with some dots to explain what DCIS is and then concluded that a lumpectomy/ mastectomy was the solution and then sent me on my way. I had gone to see him on my own because two previous biopsy results had been fine so I found myself alone on the pavement outside his clinic in a state of shock. I lost some trust in him. 

Thanks for taking the time to be in correspondence and I am really glad to hear that your decision worked out so well for you and I will be taking the lesson you learned very seriously, 

Juliana 

Hi Juliana,  when I had my diagnosis from my oncologist, his recommendation was a lumpectomy, followed by radiotherapy, he advised that this was the results of trial data, which included the 25 sessions over 5 week and I went along with his expertise.  I don't think I would change my mind was I to go along the same route again, I think it was the right option for me.   Hope this has been of some help

IHi Juliana,

Like you I was diagnosed with DCIS in January after 2patches of calcification were spotted on a routine mammogram. 

I was told that years ago they would have monitored rather than operate but that now doctors take the view that prevention is better and remove the risk. Because both biopsies were positive my surgeon recommended a mastectomy but said that from the evidence they anticipated that I wouldn't need any other treatment and therefore could consider having immediate reconstruction. I did eventually decide to do this, opting for the implant reconstruction with acellular matrix which can all be done in one operation. 

I have to say that my results after the operation totally justified the decision to operate as they found 6cm of DCIS and also a 3mm invasive cancer (which would have presumably grown quite quickly had it been left), but because they were confident the mastectomy had removed all the cancer and my lymph node was clear I didn't need chemo or radiotherapy. I am however on Tamoxifen for 5 years. 

I was surprised to hear of the way you were given your results, I was taken into another room after receiving results to discuss any questions or concerns with a breast care  nurse and this was the pattern for subsequent appointments as well. 

Obviously everyone is different in how they respond to this devastating news but personally I don't think I could have coped with the uncertainty if I hadn't had surgery. 

Wishing you all the best with your decision and subsequent treatment,  hope all goes well.

Hi Juliana ..... I have noticed that this site has information on the LORIS trial and wondered if it may be worth you calling the nurses here (freephone) who may be able to give you more information on it. They will know centres who are involved

All I would say on a personal level, is if surgery would take away the risk completely of your cells turning into full-blown breast cancer - for goodness sake stop dithering and get it done!    I have been 'living' wiith this disease for 10yrs now and believe me it is the most all-consuming and life-limiting thing you will ever have to endure.  If you feel that life-worries brought on your former endemetrosis/cysts, then I can assure you that the worries surrounding a cancer diagnosis are far greater for you and those that love you - especially if you are in a constant state of 'watching and waiting'.  Ask anyone here what that regime is like emotiionally!

You have been given the chance to eradicate this disease from your body - yes it will mean an operation and a few week of radiotherapy - but you will be cured and can get on with your life without this cloud hanging over your head.  Grab it with both hands - and enjoy your life to the full! x

Hi Everyone, 

I wanted to thank everyone for their comments, especially those who wrote that invasive cancer was found in their tissue post operation.  That's obviously a real argument for having surgery and I am taking it really seriously.

Daisyboo, I feel that I am doing the opposite of sticking my head in the sand or refusing treatment, instead I am looking for the best option. Medical opinion and proceedures are changing all the time, there is a reason for the LORIS trial and I am trying to understand it. If I need a mastectomy I will do the mastectomy but please do grant me the freedom to ask some questions whilst I wait for the outcome of my MRI. 

Maybe if the consultant had spent more than 15 minutes with me or if I would have had access to a breast care nurse as the lady above had I would feel in less of a need to consult a public forum. 

Again, thanks everyone!

Juliana ..... think you hit the nail on the head when you say that the lack of support at the time of your appointment has kinda left you with so many unanswered questions.  As far as I am aware, it is pretty unusual in the NHS system that a breast care nurse is not present at your consultation and you were not given her contact details to talk things over with her.  It may well be worth ringing your consultant's secretary and asking for the breast care nurses contact information and meeting up with her for a chat. She should have all your information at hand and be able to go through all the options with you.

Failing that, there should be a McMillan team at your local hospital who will do the same.  I have always found them a brilliant team and you will normally be assigned a regular member who will help and support you throughout this.

You have some tough decisions ahead and really need the support of a medical professional to help you do what is right for you.  I so hope you have a good network of friends/family around to help you too.

Please keep in touch and let us know how you are getting on x