Learning About Breast Cancer
1. It has been standard for many decades that radiation does not result in less deaths from breast cancer [called disease specific survival]. In fact, reputable studies have shown a slight increase in the overall or all cause death rate [called overall survival rate] for women treated with radiation versus those who did not have it. Before concluding radiation is overall causing more deaths than it is saving, there are other theories about these results, such as women who get radiation as opposed to women who don't tend to be more unwell and therefore at higher risk of dying from all cause conditions.Most radiation oncologists will not tell you this - most of them are trained not to as they believe this information may influence more women not to agree to RT. In fact, I find they deliberately try to obscure and dumb down any statistical information to try and get me to go along with whatever they are recommending.
2. Studies however do show an RT benefit when it comes to reducing BC recurrence. Recurrence reduction is important for the following reasons - each recurrence places you under more health stress, and expense but also each recurrence raises your risk of it being more dangerous.
3. This brings us to Connie's question. The benefit an individual breast cancer patient gets from radiation is relative to her risk of recurrence. So, first you need to find out what your individual BC recurrence risk is. I found I had to push my Radiation Oncologist to give me the true facts about my recurrence stats. In my case and with my type and grade of BC as well as other makers such as no lymph node involvement, ki 667 score and all those other results on the histopathology report arising from my excised tumour and lifestyle [I do not drink alcohol, I do not smoke, I take a daily asprin but I am overweight] - well, it was enlightening to FINALLY have him admit my risk of recurrence without radiation was 5% [ie., 95% no recurrence]and if I submitted myself to what he recommended which was 6 weeks radiation plus boost to my entire breast, the best I could improve the situation was by 2%, which means 97% no recurrence risk. I was not offered partial breast irradiation which is a less damaging RT option for women with my stats but PBI is another topic.
4. I realised immediately at this point why he did not want to inform me about my real risk stats. I am a numbers person and try to make rational decisions based on facts - I am not an emotional decision maker and I was not sitting there crying or anything like that. He knew from my personality and presentation that there is no way I was going to subject myself to radiation for a measly 2% improvement in my already great stats. So getting this most basic medical information about the the Radiation Oncologist was time consuming and he was as uncooperative as a hostile witness on the stand - it took me an hour to drag the most basic medical information out of him about my stats to enable me to make an informed decision about my own health care and stats but I hunted him down verbally an kept up a steady stream of polite but increasingly pointed questions till I eventually dragged out of him the information I needed as was in fact entitled to in order to make an informed decision about my own health care. My surgeon and Oncologist were the total opposite - they handed over information generously and wanted me to be an adult and make up my own mind.
5. I elected not to have any RT after quadruply checking on things and reading all the leading scientific reports on the topic.
6. I had a rare form of BC called tubular carcinoma which was incredibly slow growing with other helpful features even though it was invasive. I also researched thoroughly every single finding on my histopathology report so I understood what it all meant.
7. My approach was because I had large breasts and a small wide local excision meant I still had plenty of flesh left so if I had regular checks for the rest of my life, any recurrence is likely to be detected and I still have enough breast for another lumpectomy etc and RT if its worse than my first BC. However if I had RT now, I am not permitted to have it a second time - its straight to mastectomy. As my initial BC was so favourable I preferred to keep RT up my sleeve to use in the future as a future BC may not be so indolent. I am also in my 50's so I had on average another 30 years of life in which BC could happen again so I did not want to use up my one go at RT now.
8. Some women are understandably so distressed by the word cancer that they would elect to make RT even for a tiny boost to avoiding a recurrence.
9. I am being so careful here setting out the steps as the overwhelming majority of women with BC are not in my situation and they will get an appreciable or even significant benefit from recurrence by having RT.
10. The question for you Connie is what are your individual BC recurrence stats, and what is your appetite for risk? Its a sliding scale on both questions so its a very personal decision based on what you believe you can cope with. Some women I meet say they would hate themselves if they did not undertake all treatment options no matter how painful, expensive or minimal the benefit and the BC recurred. They would grab any treatment even if it gave less than 1% benefit. Others are like me, weigh up and the pros and cons and have to think there is enough of a benefit to put our bodies through more stress. Your question is where do you fit on this continuum?
11. The one consideration I constantly kept hearing from BC survivors was that RT was a piece of cake compared to eg., chemo, surgery etc simply because it was quick, there was no cutting, and they were not throwing up constantly. My view is RT is not a piece of cake simply because you cannot see and feel all the damage the RT does to your body in the same way we can see and feel surgery or chemo! To me those considerations are irrelevant. To others they feel comforted by their perception is that RT poses the least insult on their body in comparison to their other treatments.
12. I am not encouraging anyone with BC to refuse RT. To me that is irresponsible because I do not know your personal stats, values, personality, options and lifestyle. What I am doing is encouraging any one with BC to carefully question their Radiation Oncologist so you know your true stats with and without RT and you make a decision about your own treatment based on that knowledge. Other patients prefer to know nothing, ask no questions and go through whatever treatment regime is recommended by their medicos.
13. Anyone who is having RT - ask to see the practices stats on radiation errors so you understand what your risk are of over or under treatment. If they don't keep such stats or won't show them to you - flee and go somewhere that has decent quality assurance program in place and is willing to show you results!
14. I know this is a detailed response Connie but this is a very serious question you are posing here, I take it very seriously and I do not want to give you a glib answer.