Low to intermediate DCIS - is mastectomy really necessary?

I have just been told by my consultant that I have low to intermediate DCIS and that he recommends a lumpectomy or a mastectomy, possibly followed by radio therapy. My initial research seems to indicate that doctors are beginning to investigate the necessity of this very drastic operation (let alone the gruelling side effects).  The LORIS clinical trial which is currently recruiting compares monitoring i.e. not operating with the efficacy of surgery which further suggests that medical thinking goes that way. My understanding is that the statistics say that low to intermediary DCIS in a woman puts her at double the risk to the general population.  

I would like to hear from other women who are diagnosed with low to intermediate DCIS who are considering NOT having surgery. 

And has anyone got any recommendations for clinics/ hospitals/ research centres who are investigating other approaches?
 

  •  

    Hi Fivestar,

    The little that I could find out about Thermography came from the USA and, it took me some time to find a practitioner in the UK, but remember that this was 11 years ago.

    I felt that I was doing the right thing at the time, but I'm not sure that it would have pinpointed breast cancer, had I not already had a diagnosis from ultrasound, mammogram and biopsy. As I said, it showed up so many other problems in different parts of my body, which luckily, haven't come to the fore since. I eventually decided that the scans showed up too much heat in general areas and that it wasn't worth pursuing, as it never highlighted the breast as a specific problem. I had the scans at 3  monthly intervals for 3 years.

    I practice both Homoeopathy and Alopathy and choose the best from both. Like you, I believe in treating the whole body, but you need to be careful not to overdose on your vitamins. We seem to have followed a similar path from the beginning, yet both have had new cancers - I wonder if that is meant to tell us something? I had a double mastectomy second time around and took Letrozole for 6 years after that.

    You are quite right. Whatever decision you reach has to be yours and yours alone and one that you can be happy with for the rest of your days.


    Kind regards,


    Jolamine xx

  • Hi Fivestar

    You can ask anything you like if it helps.

    My mastectomy was in one breast yes, I had an implant over the muscle. I was in hospital one night and I recovered very quickly, couple of weeks and had no pain. I took vit c and zinc for a week before and after the op along with a homeopathic surgery mix which included Arnica along with other things. I think having small breasts helps with implants. They also took the sentinel nodes...two for me, to check which were clear.


    The result I think is very good and very symmetrical. I would be happy to show you a picture if we can do that privately on here. I've since also had some prosthetic nipples made which surprised me in how good they are, not used them yet but may use in the summer. They also cover the scar. There was an option to maybe save the nipple with an implant but my DCIS was a bit too close to it margin wise.

    I chose an implant because I wanted the least invasive surgery and I've had a few ops throughout life with leg/hip issues and have scars so I didn't want the diep surgery with a scar across the whole tummy. My surgeon told me that the tummy surgery was the gold standard, because it felt the most natural and it would grow if you put weight on and vice versa. This wasn't such a worry for me as being so small breasted A cup I've never had much of a problem with them increasing or decreasing much. Also I worried there could be other complications in the tummy area with a bigger op.

    The feel of an implant is not the same but still very good. I chose a smooth implant. 
    A lumpectomy was never offered as an option, they said I was too small and it would look deformed. Weirdly I preferred the option anyway of mastectomy instead of lumpectomy with radiation and tamoxifen, I wanted to avoid radiation. I also was happier that with the mastectomy there was only about 3% of bc or recurrence in the future and currently I don't have tamoxifen either.

    I am however starting genetics testing to see the chances on the other side, if this comes back as high I may then take tamoxifen as that helps slightly reduces chance the opposite side too or have the same the other side if really high, hopefully it will be the same chances as anyone else, but I have BC in the family so we'll see....that history was a factor in my mastectomy choice too.

    It is a big decision, maybe the number of operations I've had in life made it easier for me. I wanted it gone and to move on, so told myself its flesh, boobs had never been my best asset. Other people are really attached and I get that too. We never know what's going to happen if we can avoid things or not, but I'm an overthinker and didn't want the weight of what if....mastectomy gave me the best odds.

    Now it's done I feel a bit more liberated, I had a really stressful 4-5 years previously which I've really been working on and this gave me the boost to recognise /understand that. Looking back my body gave me warning signs  that I didn't  read or chose to ignore.  I'm still working diet there is conflicting information, but currently food is my nervous area, I worry with dairy and meat due to hormones especially when I had ER positive DCIS and I'm premenopausal still, but I want a balanced diet too and to enjoy life. Currently I'm pretty dairy free with exception of chocolate....struggling with that one and only eat organic meat and minimal red.

     So it's a work in progress but going in the right direction 

    Hope I've offered a little help anything else I'm here

    Take Care and take your time in your decisions

    Bek xx

     

  • Thank you for your message. You are completely right that men would never put themselves through what we have to go through, they would definitely have found another method!
    The vacuum biopsies are awful.

    I am due my second year check so will see if there is any change and will continue with a healthy diet and lifestyle.

    Thank,you so much for sharing your path, it really does help.

    Best wishes,

    Suzanne

  • Hi Jolamine, 

    Thanks again for your reply. 

    I have found a Thermography compnay in London, and another based in Liverpool, however I think I am going to leave it for now.

    As for having new cancers, I honestly believe that mine has returned as I have not dealt with emotional blockages, and had not changed my life style. Some may think this sounds like complete nonsense, but that is what I believe. So now its time to do an MOT of everything!

    I wish you all the very best, and thanks again for sharing as your posts are so useful to me, and others reading xx

  • Oh my gosh Bek, your reply is amazing! THANK YOU so much for taking the time to reply with so much detail, I am extremely grateful xx

    I have now had a second opinion and the surgeon made a reconstructions sounds less scary and less of an ongoing series of ops to try to make you feel comfortable in the way you look. After reading your post it made me feel so much better to know you have been through this and it sounds like you are happy with the results - amazing for you, I am soooo pleased. 

    I cant keep my nipple so hearing about prosthetic nipples was also useful. It sounds crazy asking you for a pic, seems rather wrong, but also it would be so good to see as the inages on line are not too helpful as they are mainly people with larger boobs. I dont know if I can send you my personal email, I will have a nose and see! 

    I know I will come to the right conclusion for me, but right now it is just gathering info. After my lumpectomy my breat has never felt the same, so I presume that would be similar to having a natural boob and an implant? I am sure after time perhaps you would not notice, or get used to the fact they feel different? 

    With regards to getting your life back, I truley beleive I have got this as a kick up the bum, to address stuff and change my life. The fact you made a decision and have also made changes to go along with that too is great. I am really having a good look at things too!

    Sending you love and also a huge thank you again xx

     

  • Hello There

    i have added you as a friend, the messages are private then, so if you accept then I can perhaps give you my email. Re pics I'm completely happy with that, when I was making my decision the consultant had no photos due to data protection which I struggled with.So if it helps you that's great 

    Bek x

  •  

    Hi Fivestar,

    You have probably made the right decision about Thermography. Besides, if you change your mind , you can do this at any stage.

    In the 11 years since I was diagnosed, I have found that positivity in dealing with this has been my best tool. We all need to carry out a complete MOT from time to time throughout our lives and. I sincerely hope that this reassessment works for you. Don't forget that we are always here for you.


    Kind regards,

    Jolamine xx

  • Hi Bek, 

    I just thought I would message to say I did reply to you in a message, but I am not sure if you recieved it? I did not want to come across as rude for not replying to this post! I hope all is well in your world xx

  • Hi

    I've replied on private message, sorry I didn't see it x

  • Hi Julianna. I realize that we are 6 years on from your very interesting post but if you are still receiving replies I would love to catch up with you.