Hi May

I saw a different (female) consultant last year, who was informative, caring, thorough, patient - everything I needed - and she agreed I could have active surveilance, which is one check up per year for 5 years, then back onto routine screening after that. She explained that the risk is that invasive might develop but also said that they don’t know if it will and if I had surgery I could still get invasive or more DCIS later on. Apparently, I’m one of about only 3% of women who opt to avoid surgery.

I had my first year check up back in February and the mamogram was all ok. Interestingly, when I expressed my worry, the consultant said “I don’t expect to see any change ...”. There is definitely no urgency and it frustrates me that the initial consultant tried to scare me into surgery “next week”.

I don’t think about it as often as I did during the first year but it is still with me. I have lost some weight but haven’t made too many dietary changes - I aim for less alcohol, mainly dairy free and vegetarian.

I hope you find what works for you and you have support from those around you.

Suze

Thank you so much for responding I really appreciate it.

I'm glad there was no progression for you and you are still ok. I'm still deciding, I have a sibling who had a mastectomy but not sure on her exact diagnosis, so I don't know if I will be at at extra risk with this route.

I have given up alcohol and have become vegan, just got to make sure I get on the treadmill everyday now, changing my food and drink habits aren't a big deal to me I'm more attached to my boobs, so to speak. 

Hi Juliana, I hope you're ok, I am wondering how you're getting on. I'm researching my options with intermediate DCIS in two different areas, can you tell anymore about your progression with this route?

Hi

Ah, a more difficult decision with your sister’s surgery, would definitely be interesting to find out what her diagnosis was.

I am the same, I am attached to my boobs too. 

The DCiS Facebook pages (some more helpful than others) and Donna Pintos DCIS411 are very useful.

Really hope you find the path for you. x

Hi Suze

i just wondered what your calcification area was. I too have intermediate grade DCIS on one breast 3 by 3 cm. They want to do a mastectomy due to my size. I too like you don’t want to jump to surgery but am scared of the implications of not.

Like you, but since diagnosis I am now dairy free and have minimal meat and fish. I believe that diet and health speaks volumes with health and cancers. Also that alternative can work along side traditional medicine. 

I feel everything is quick and you have to make huge decisions and there are different answers and opinions. 

Did your consultant say why they didn’t expect it to move I suppose you could be one of those that DCIS always stays as DCIS and are luckier, that’s the trouble none of us know which category we fall into

x

Hi Suzanne,

How are you getting on with your journey?

I have recently been advised to have a mastectomy, after being diagnosed with med grade DCIS. This is a reoccurrence as I had a lumpectomy in the same breast 3 years ago. I am looking to treat this naturally as I just feel the NHS offer a one option solution, and it just does not sit right.

I have done quite a bit of research, however you posted this some time ago, so I'm guessing you have also. Anyway, would be great to chat if you are happy to?

All the very best, 

Anthea x

Hello Anthea

Thanks for your message. I can imagine how hard it is to be faced with more surgery. I am due my second year follow up soon and I'm really hoping all will be well, I know that I am still not ready for surgery.

I don't think it's just the NHS, it's pretty much worldwide with the US being even worse than the uk! I really had to push back at the consultants so they agreed to put me on active surveilance. Part of me wishes that I was brave enough to avoid further mamograms and find a clinic to do ultrasound instead.

Happy to chat further.

Suzanne

Hi, sorry I didn't see your message before now and I guess I may be too late to answer.

What decision did you make? 
 

Hope all is going well for you.

Suzanne

Hi again, 

When I was diagnosed with DCIS in 2017, I was told I could go for surgery in 3 days time. You can imagine, I was shocked at the news and felt it must be super serious as a mastectomy was suggested and then I was offered surgery so quickly. I luckily went away to assess my options and decided to go for a lumpectomy about a month after this appointment, and no radiation or tamoxifen. I worked with a naturopath and stuck to a super stick diet, however did not change my on the move/stressful lifestyle. 

For active surveilance, I am currently looking into thermography, it has quite conflicting reviews, but if I try it I will let you know. I am also considering going on a Keto style diet and taking huge amounts of Vit C and D, as well as aiming to reduce stress etc. It is so hard to take your own path, but I really believe to be able to trust your own body is the way forward.

I wish you all the very best for your next Mamo. If yu have any advice you can share I would be super grateful. If I can help you in anyway just shout x