Is there anyone out there who has chosen NOT to have treatment after stage 111c invasive breast cancer diagnosis?

Your posting is very interesting to me. I have what my Oncologist calls a trivial cancer [yes, it is bizarre to see those two words linked like that] and no therapy other than lumpectomy is happening. This is based on statistics that treatment like hormones and/or chemo will cause me significantly more damage [morbidity and mortality] than benefit. The radiation picture slightly more complex but at its very best it could only offer me a 3% benefit ie., lower my risk of local recurrence by 3%. Radiation would have no effect on my length of life but when I read up on it, it has no effect on any of our mortality rates. Its a long story but in a nutshell, any benefit I and others in my situation get from radiation is statistically wiped out by increased death rate from non-cancerous conditions [which are probably caused by the radiation itself]. Most radiologists never tell patients this fact! Anyway this is a long way of explaining I am having no treatment apart from lumpectomy but the reasons are very different from yours.I am still to-ig and fro-ing with radiation oncologists as they seem to believe a 3% benefit is something to get excited about. Its going back to their case review team for further debate. I found out during this process that the medical protocols for additional therapy after surgery for breast cancer have two furious debates occuring - one is at my end which is the very early stage of breast cancer and the other is with the far more advanced cases and essentially, it is about risks versus benefits. Unless patients are really pushy and constantly prove they have the resilience, or personality or determination for it, most medicos will squib out on giving us the full facts. Their view seems to be to only give it to us when we prove again and again [by crash tackling them and demanding the information and then not falling apart when we get it] that we can handle it. I suspect this has nothing to do with protecting our sensibilities and everything to do with the doctors being cowards, emotionally ill equipped to deal with the tough aspects of their job, a assumption patients are not very bright and a touch of concern that if we get too much information we may not meekly follow the treatment path they have laid out for us. We also need to be vocal about telling them [mostly more than once] about what our highest, medium and lowest priorities are as the doctors make a lot of assumptions about what they think they are. I actually listed mine and handed the list to them with a statement insisting that all treatment options they examine be assessed for compliance against my priorities. I have not had my fortitude about no further treatment tested yet by a more seriousn diagnosis or more devastating set of statistics, so until then,I cannot state with absolute confidence what I would do, but I would seriously consider the path you are taking. I have seen so much so called heroic medical intervention - which is extremely painful,costly and damaging to quality of life - and the actual increase in eg.,life span has been weeks or months. To me its just not worth it in terms of quality of life if that extra time is spent in surgery, in pain, having chemo or suffering terrible radiation induced side effects. This path is clearly not most people's if the few postings on it are the yardstick, but life at any cost and irrespective of the degree of suffering involved to remain technically alive and breathing simply are not worth it to me.

TeeTeeGirl,

I am just so sorry that the surgery went poorly and that you had to deal with so much pain afterward. Thank heavens for your pain specialist.

You sound thorough, thoughtful and happy. It isn't easy to make a decision to go against the "accepted" protocol, but by questioning your doctors and discussing things with your loved ones, you have done exactly that, and done it well. I appreciate your point of view and will be interested to see if others like you chime in on this thread. So often the fear of what could be dictates all our decisions.

Best wishes to you, for years and years to come.

Of course I was told I should have radiation I was then told Chemo. Since the lymp node invovlment was so "extensive" (his words) there is no guarantee cancer wouldn't show somewhere else at any given time. Weighing my thoughts on how I would handle going through chemo and maybe months or even weeks later have cancer pop up in some other organ I choose NOT to do either. It was our understanding that the lymph nodes he removed had no "deffinate margins" and it was an rather extensive. Surgery went VERY POORLY! I went through 7 weeks of SEVERE pain and if it hadn't been for a wonderful Pain Specialist I had been to previously I'm not sure I would still be in discomfort. Believe me it's not easy facing one's own mortality. I went through many weeks of painful soul searching. I spent many a night up with my husband talking about "what if's". My children were in TOTAL DENIAL when they first heard of the cancer and to this day still harbor doubts. They just can't believe MOM can even say cancer much less have it. They are carrying on with love and effection and are VERY supportive of my decision. They have talked me into doing things I have kept putting off and are thriving on the stories I relay to them. They know that I'm living every moment to the fullest. If my cancer returns I will face it when it happens. I have arranged for palliative care and have had long conversations with my specialists on what will happen if the times comes to face it again. I have spoken to 2 women that have chosen the same path and to this day one is 8 years beyond diagnosis and the other 2yrs. Everyone I have spoken to in the past with cancer and had recieved treatment are now not here to continue that discussion. I believe I've made the right decision for ME!

Dear TeeTeeGirl,

What treatment did your doctors recommend that you are refusing, could you tell us a little more about it?

And may I ask why you are choosing this route?

I did some research on the web and one of the reasons doctors may not want to give you any time frame is because it seems to vary so widely. It might be possible for you to have no further involvement for a short time or for a very long time. No one knows. What they have a better idea of is how people do when they follow different protocols of treatment, because that's been better studied. No one can tell you for sure whether or when your cancer, left unchecked, may start invading other organs.

This forum has some people discussing refusing treatment in different stages:

http://www.bcadvisor.com/refusing/declining-treatment-61695.html

and the same here on the breastcancer.org discussion boards:

http://community.breastcancer.org/forum/16/topic/735573

Can you tell us a little more about your decision, TeeTeeGirl? How do friends and family feel about it?