Anyone not gone ahead with treatment? Watching & waiting?

Hi I was diagnosed with HER- ER+ DCIS with a couple areas of IDC 2.6mm being the largest after routine mammogram and biopsy at age 50.  I was advised to have a mastectomy as the area in the breast with DCIS is extensive, the shock and worry from it all made me ill and caused a breakdown.  Has anyone else decided against all treatment for now and deciding to watch and wait instead?  I look forward to hearing

If it was just DCIS that would be a real possibility in the US. But you already have IDC with it. It’s small though and probably easily taken care of with surgery. Watching and waiting with IDC is never advisable since it has the capability of distant spread.


I’m so sorry you had that kind of reaction. I’ve suffered from GAD, phobias and panic disorder most of my life so I truly understand how awful it must have been for you. I guess I was fortunate that my reaction was one of numbness and I was able to just go with the flow, so long as they well nigh guaranteed I wouldn’t be sick (my main phobia). 

Now you’re in a better place, perhaps you could reflect on what exactly you fear. Is it the treatment, is it losing a breast, is it the cancer itself? All women experience some level of anxiety about all these things but find a way past it. If you’re afraid of surgery or of losing a breast, there are ways round it such as reconstructive surgery. If you’re afraid of the disease itself and its potential effects, then treatment is your safest and only option. There are fad/alternative treatments around that people try in desperation but the only real way through is conventional treatment - otherwise everyone would be put on mistletoe, daily yoga etc rather than powerful chemicals!

If fear of treatment outweighs fear of the disease, perhaps you could look into treatment further. Things have changed so much in the last couple of decades that the old tropes of cancer being something to dread and treatments being cruel and causing great suffering are very last century. My breast care nurse took me round the chemo suite in the evening and during a busy time. She explained about all the preventative measures in place for the pre-med treatment and it reassured me. They then arranged for me to have 2mg lorazepam so I felt no anxiety and had no compulsion to run. With those reassurances, I was able to take the risk of treatment. Perhaps your BCN could help you identify your obstacles? 

As Kay has pointed out, you know you have areas of IDC. Fortunately you are ER+ so things may move a little more slowly - but move they will. Watching and waiting is not an option in my opinion. Breast cancer is unstoppable without conventional treatments. The fact is, treatment is not pleasant but nor is it as awful as one imagines. There are thousands of women who use this forum and almost all of them have been through the mill and still would say it is all manageable - because it’s time limited. You know that, after 12 weeks of chemo, you’ll begin to feel better, your hair will regrow, your appetite recover - and your cancer will have been destroyed. We all have been able to dig deep and find the inner resources we need to get through it. 

I’m guessing this is not what you wanted to hear but I’d be surprised if you found more than perhaps one person here who will have adopted your suggestion. You have many years ahead of you if you agree to treatment. If you don’t agree, the hospital will support you with palliative care when the time comes. This is something you have to ask your oncologist - what will happen if I reject treatment?

I have metastatic triple negative breast cancer, which moves very fast and very aggressively. I was diagnosed when I was 69, 18 months after I’d finished primary treatment. I did ask at the time of diagnosis what would happen if I chose not to have treatment. It was couched in gentle terms but the message was that I’d be dead within the year. I wasn’t ready for that so I undergo constant chemotherapy now. 20 months later, I’m still on my first treatment and still have a full head of hair! We do what’s right for us.

I do hope you make the decision that is right for you, but do make sure it’s based on full understanding of your specific situation. Talk to your consultant about all the alternatives and be honest about your obstacles. My mastectomy was done early in the day so I could go home the same day because of my phobias! There’s always a solution if you are honest and open about your reservations/fears. But remember, the clock is ticking and time and cancer won’t stand still for you.

Best of luck,

Jan x