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?
 

  • Hello!

    Hmm, the consultant did that with me too! It's so bad and definitely feeds our fear! It's good to hear that you considered your options before opting for surgery. I'm really pleased you didn't have radiotherapy. Did you manage a few years without worrying after the surgery? My fear is that I'd have surgery and still worry about it.

    There are conflicting reports of Thermo, it does seem much bigger in the States than here. It will be really interesting to see what you find out and if you go for it. I see conflicting reports of Keto too. Lots of BC advice says to avoid dairy too. I guess it really comes down to each individual to eat and drink and live a life that suits them and hope it doesn't suit diease!


    I worked with a naturopath too and take Vit D and C (which are said to be good against covid too!), magnesium, zinc, B vits and some tummy acid and enzmes. I think they help! 

    xx

     

  • Hi Fivestar, 

    We noticed you said you were looking in to treating your reoccurence naturally. In these situations we would always recommend speaking with your medical team first as they can talk you through the evidence that is available for conventional treatments to treat or control your cancer. There is no evidence that alternative therapies can cure or control cancer. Some might also be harmful and cause side effects. 

    As you're looking in to quite a few options, we just wanted to go through them with you and make you aware of the potential risks and dangers they may pose. 

    Research studies have shown that thermography is not an effective tool for detecting breast cancer. Compared to mammograms, thermography just isn’t sensitive enough; it actually fails to spot most breast tumours. Thermography isn’t as reliable as a mammogram either, as it often mistakes non-cancerous features for breast tumours which is why thermography isn’t available on the NHS. Some private clinics do offer thermography, but evidence shows it can’t reliably detect breast cancers and it is not worth the high fees that are often charged.

    In regards to the ketogenic diet we just wanted to make you aware of what our cancer nurses said about this in a previous discussion:

    "We would always recommend that people try to have a balanced diet throughout and after cancer treatment when possible. There is no scientific evidence that a high protein low carbohydrate diet has an effect on cancer. If you are thinking of making any changes to your diet always check it out with your doctor first."

    Also, the use of ‘huge amounts’ of Vitamin C is not recommended and there is no evidence to suggest it can help treat cancer, in fact in high doses it can be dangerous. You might want to read our information on vitamin C on our science blog.

    We have some very interesting information about alternative therapies on our website but if you would like to chat to our cancer nurses about this their freephone number is 0808 800 4040 and their lines are open Monday - Friday between 9a.m - 5p.m.

    Kind regards,

    Steph, Cancer Chat Moderator

  •  

    Hi Fivestar and SuzeS,

    I am sorry to hear that you are both struggling with your consultant's advice on treatment. I was in a similar position 11 years ago and thought that you might be interested in my experience since then. I was having routine mammograms which didn't pick anything up, so it wasn't until I discovered a lump myself that I got it investigated. I was initially diagnosed with a grade 1 Mucinous Carcinoma of the breast. This is one of the less aggressive types of the disease and, doesn’t always show up on mammogram or ultrasound.

    I was advised to have a lumpectomy followed by radiotherapy and hormone therapy (Tamoxifen). Like you I was not happy about having radiotherapy. As a trained homoeopathic practitioner, I was advised to stop taking all of my altenative medication, as I was informed that these could counteract with hormone therapy. I delayed radiotherapy treatment until I had time to research the benefits, but developed a lump in my other breast in the interim. My consultant was getting quite anxious that I made up my mind quickly. He assured me that this lump was of no consequence, but refused to carry out any tests.

    For my own peace of mind, I paid for private Thermography for 3 years. After 6 months my surgeon and I had reached an impasse, as I told him that there was no point in treating one breast, whilst ignoring the other. He then referred me to see the surgeon in charge of all the surgeons in the area. He examined me, carried out all the normal tests and fortunately, my lump proved to be benign. Six months later I found a lump in my original breast and, this time I wasn’t so lucky. It was another primary of the same type. My new surgeon took over my care and carried out a double mastectomy, followed by Letrozole for 6 years. At this stage he told me that I didn’t need radiotherapy or chemo.

    My cancer did show up with Thermography, but it also showed up on mammogram and ultrasound. It did not show the cancer up until after I had found the lump and showed up more problems than I cared to know about with different parts of my body. Overall this treatment cost me a considerable amount of money and, didn’t enlighten me any further about my cancers. I did not find any evidence for the benefit of alternative/homoeopathic therapies to send my cancer into remission, so only had surgery and hormone therapies.

    By the time I discovered that my second lump was benign, I was referred to see two eminent researchers in radiotherapy. They both considered how effective this treatment would have been for me after 11 months. One felt that it was worth ‘having a go’, whereas the other was quite definite that unless I had started it within 3 months of diagnosis, it would be a total waste of time. The second gentleman offered a much better argument for his decision than the first, so I stuck with his advice. I am currently undergoing tests again due to a plethora of new symptoms, so will let you know the outcome, as soon as I get any test results back.

    Had my cancer been of a more aggressive nature, or of a higher grade, I probably would have gone ahead with radiotherapy earlier. It is obviously a personal decision as to how you both progress going forward and, it has to be a deision that you are happy with within yourselves.

    Kind regards,

    Jolamine xx

  • Hello Jolamine

    Thank you for your message, I am sorry to hear you have had cancer and are still having sypmtoms that need investigating. The conflicting nature of medical opinion certainly makes life harder for us doesn't it!

    Very interesting to read of your thermography experience. I have read about it, predominantly from the US, but have not gone along that path.

    I think that the difficulty with DCIS is that it is often found on routine mammograms and is not cancer at the time of diagnosis, it is a change in cells that may or may not change more to become cancer and whilst it may develop there are no significant research findings into it, partly it seems because it is treated as if it is invasive ... and yet the increase in early cancer detection and DCIS diagnosis has not seen a corresponding decrease in later stage diagnosis. Which either means more breast cancers are occuring or we are overtreating the DCIS!

    I hear so many women who are scared by the DCIS diagnosis and their consultant's suggestion that urgent surgery is required, when in reality there is time with DCIS to consider all options.

    I most definitely do not want cancer but I am not comfortable with surgery if it is not needed. It is a very difficult decision to make and one that I still think about most days. I opted for active surveilance which means a mammogram each year but I check my breasts each month as I am aware that I am more likely to find cancer that way.

    Thank you for sharing your experience, it definitely helps to hear what other women have been through.

    Best wishes,

    Suzanne

  • Hi Suzanne

    My decision was to have a mastectomy, due to the size of me A cup, lumpectomy wasn't an option. I'm glad I did because the DCIS area was 5.5cm at biopsy not 3.3 as first thought. Due to my age ...47 and being premenopausal, I thought the odds were not in my favour further down the line. I feel much better now knowing it's gone, there was nothing invasive and lymph's were clear. I will never know if I was over treated or not but I didn't want the axiety of knowing something was there.

    However moving fwd I am taking alternative medicine and as best as I can trying to be dairy free and only having organic meats. I know this isn't everyone's cup of tea but I feel a little of everything is good and will also help me when I come to menopause now I am not able to take

    My mum had BC four years ago, 4cm lump and turned down mastectomy, she cut out diary and sugar, but was also on Amastrozole medication, and along side this took alternative medicine too. Whether she was brave or stupid I don't know, but that last time she saw her surgeon a month ago they couldn't find it and think now it's only a couple of mm.

    I have agreed with my consultant to have MRI each yr I'm hoping instead of not as well as mammogram, to try and avoid mammograms.

     

    Im in a good place, pretty calm and moving fwd....well trying to

    Take Care

    B

     

     

     

  • Hi Anthea

    I had a mastectomy, I thought best due to age, size do DCIS, etc which was bigger upon removal and also found out it was ER positive.

    However I try to be diary free, only eat organic meat, take some alternative medicine, meditate each day to keep stress out and I feel I'm in a good place, we'll certainly mentally.

    I'm still researching into what to do when menopause comes, without being able to take HRT, I will be concentrating on diet and alternative medicine to help me through.

    I think you need to do a little of everything and there is no wrong or right decision just what's good for you. I was lucky my mastectomy was an easy process for me I was in a good headspace before and I recovered very quickly. I had an implant which lm pleased with.

    Any questions please come back to me

    Take Care 

    B

     

  • I'm really pleased to hear that you are doing well and good to hear that you are in a good place emotionally - that's one of the most important things.

    Every little helps on the diet and lifestyle change and it is great that your mum's BC has almost disappeared. 
     

    It shows that we can seek advice from other people but ultimately we have to feel comfortable and at ease with the decision we make.

    Best wishes for the future,

    Suzanne

  • Hi Suze, 

    I have always had painful breasts. After all the mammograms and the biopsies it was so much more painful. To be honest that reduced after my lumpectomy, but it never went. When my boob wasnt throbbing I was able to put it out of my mind completely as I totally believed that I had made the right decision for me and my body. I hope this helps you to put it out of your mind too. 

    Now it is so painful again as i've been back to the hospital and had 2 vacume biopsies, both squeezed in that horrendous mammo machine for nearly an hour each go, honestly the way breasts are treated is awful. You would never get a man putting his sensitive areas in one of those!! 

    My diet is more a candida diet rather than Keto, I guess the aim is to kill the source - sugar, and also to reduce toxins, stress and keep fit. I also added some natropathic techniques to support this and took similar supps to you. What I didn't do though was change my job, I had a 1.5hr commute each way and a stressful job. Also emotinally I have a lot to sift through, and I wonder if these two combined may have had some impact to my DCIS returning, but who knows. 

    Anyway, I hope some of that is useful to you and do feel free to ask me anything if I can help xx

  • Hi Jolamine, 

    Thanks so much for taking the time to write a reply. Gosh, it really sounds like you have been through it, poor you. 

    It is really helpful to hear your experiences of Thermography as I am very torn as to wether it is an option to try this as part of my active surveilance. It is so hard as we can have a lumpectomy and then something else can come up elsewhere, or in my case return. I personally believe in treating the body as a whole hense why I worked with a naturopath etc. But really it is down to every woman to make a decision that is right for her as whatever we choose this is not an easy journey to navigate. 

    Sorry to hear you are still going through tests, I wish you all the luck in the world for some good results, and thank you for sharing your experience as I am sure your post will help many people here xx

  • Hi B, 

    Thanks so much for your reply xx

    These are the exact factors that are making me think go for the massectomy!! I have pretty small boobs (A+!!), am 44 and my last lumpectomy showed ER positive. BUT, there is still a part of me that feels it is too extreme when my diagnosis is DCIS. It is such a hard decision. Can I ask, you had a masectomy, just one breast? Also you went for reconstruction did you choose an implant or DIEP? If implant was it infront of the muscle or behind? And if infront how does this sit/look? Sorry for all the questions, but i have had two very different opinions from surgeons, and having small boobs sounds like it can affect the way the implant sits. If you dont mind sharing any info would be really apprecited. 

    I am soooooo glad you made your decision and are happy with it. I definately believe any woman in this situation must do what they feel is right and support this with diet and stress reduction, etc. Sounds like you are doing all the right things xxx