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How does the survival rate increase with radiation after a lumpectomy and chemo? Does it add 5%, 10%...anyone know?

Connie Herrick Profile
Asked by

anonymous

Survivor since 2011 over 4 years
 
  • Coco Smith Profile
    anonymous
    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.
    over 4 years Flag
    • Connie Herrick Profile
      anonymous
      Survivor since 2011

      Coco, thank you for your detailed response. I agree that the rad onc gave me "global" statistics when I posed the question to her rather than my own statistics. She also mentioned the reason for radiation is to lessen the chance of local...

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      Coco, thank you for your detailed response. I agree that the rad onc gave me "global" statistics when I posed the question to her rather than my own statistics. She also mentioned the reason for radiation is to lessen the chance of local recurrence. Her statement was something like, w/o radiation, the local recurrence is app 20%, and with radiation that number goes down to as little at 5%. I am going for the cat scan on Monday, but I will press to get something more specific to my individual case. My cancer was Stage IIa, infiltrating ductal carcinoma, high grade (fast growing) with no lymph node involvement. I am leaning toward going ahead with the radiation. I am 60, and if it comes back, I will be OK with having a mastectomy.

      over 4 years Flag
    • Coco Smith Profile
      anonymous
      Learning About Breast Cancer

      Connie - your Radiation Oncologist certainly sounds more forthcoming than mine!FYI - I was stage 1 [just into lowest b] and low, low grade - my ki 67 was -1% which is not only as low as the test can measure, but also anything under 3% is...

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      Connie - your Radiation Oncologist certainly sounds more forthcoming than mine!FYI - I was stage 1 [just into lowest b] and low, low grade - my ki 67 was -1% which is not only as low as the test can measure, but also anything under 3% is considered normal breast tissue replication anyway. If I had had a fast growing ie., aggressive BC, even with no lymph node involvement - and if I could get a 15% lowering of my recurrence risk with radiation, I would certainly have had RT. As you can see I only faced a 5% risk of recurrence without RT and RT would only reduce my risk by a couple of percent points = at best. I would have had RT for any percentage benefit IF I had an aggressive cancer. Those of us that omit RT tend to either be at my indolent BC end or at the other extreme where BC is diagnosed so late and is so aggressive that they accept they are terminally ill and do not want treatment that cannot extend their survival. Most people are in between these two extremes and tend to want to grab at any treatment that confers benefit on them in their fight against this insidious disease. Remember: a CAT scan delivers something like the equivalent of 2,000 x-rays to your body and if you are having RT for breast cancer on top of that, that total volume of RT can also add a percentage point to your recurrence risk profile. I am not having CT scans - have elected to have MRI's [Magnetic Resonance Imaging] which does not expose me to radiation in such high doses. In Australia where I am located MRI's for people in my age group with BC are not government subdidized, so I have an annual MRI which I pay for myself in full but I prefer to keep my RT exposure low as I can so I accept paying for the MRI. I don't drinl alcohol or smoke etc so I just pretend that I spend my vice money on my MRI instead! I also have very dense breasts so MRIs are much more sensitive at cancer detection for me compared to eg., mammograms. MRI's are supposed to detect cancer many years before mammograms can as well. I figure MRI's give me my best shot at getting a recurrence early as it possible and also does not increase my risk at all from radiation exposure. I sincerely wish you the best with your treatment decisions - so many millions of women across the world face BC and having the internet and support systems makes us feel less alone.

      over 4 years Flag
    • Jacqueline Rodriguez Profile
      anonymous
      Learning About Breast Cancer

      I had a mastectomy my margins were clean, no lymph nodes with cancer. The radiology team of course wanted me to get radiation, I decided not to and feel comfortable with my decision. There are times we have to feel we can choose what we feel is best.

      8 months Flag
    • Jan Watt Profile
      anonymous
      Learning About Breast Cancer

      Hi Coco, I realise that your answer to Connies question is over 4 years old :-( but your approach is mine exactly. {Early Stage Grade 3 HER3+ clear margins, no node involvement]
      Lumpectomy completed, Chemo underway and I don't really want to add...

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      Hi Coco, I realise that your answer to Connies question is over 4 years old :-( but your approach is mine exactly. {Early Stage Grade 3 HER3+ clear margins, no node involvement]
      Lumpectomy completed, Chemo underway and I don't really want to add radiation complexities to the chemical bunfight. I too am a statistical and information driven person (non emotional) in making decisions. My radiation oncologist (public Australian system) yesterday hit me with statistics I have never heard of (30% difference in survival rate - rads vs no rads) so I am now madly trying to find statistics / research to inform myself... I have a month before I have to commit.... appreciate any feedback.. and now 4 years on :-) Hope all is well with you. Jan

      about 2 months Flag
    • Coco Smith Profile
      anonymous
      Learning About Breast Cancer

      Hello Jan, I am over 5 years post lumpectomy - my last mammogram was clear and I am off for an MRI as my more sensitive check in a couple of months. There has been ongoing research into this issue over the past 5 years and Oncologist tend to only...

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      Hello Jan, I am over 5 years post lumpectomy - my last mammogram was clear and I am off for an MRI as my more sensitive check in a couple of months. There has been ongoing research into this issue over the past 5 years and Oncologist tend to only recommend omitting radiation post lumpectomy if you are over 70. I was 51 at diagnosis/surgery. I do continue to monitor research on this issue but I am not aware of the huge survival rate difference he or she referred to. I will have a quick look to see if I can locate it as it is likely quite recent. One of the issues for methodology is getting a group like us to study versus the radiation treatment group as radiation is such a standard treatment. Most non rad versus rad studies include women with far more serious BC profiles compared to ours. Obviously if your Oncologist can cite the study [I would email or phone and ask for its citation or better still, a copy] and sit and read through it. If it is sound methodology and the methodology not biased one way or the other or even if it convinces you not to take the risk of omitting RT - then it is a good thing as further enquiries have helped you make up your mind. I am always careful not to be pushy about the path I chose with anyone else - it is such a personal decision and people's appetite for risks vary so dramatically. If your Oncologist is able to provide a citation for the study I would welcome you sharing it. I also always ask my treating specialists when they make recommendation X citing stats or a study - "and are there any studies that come to the opposite conclusion?" That direct question usually dislodges an admission that there are. So my follow up question is " on what scientific grounds do you prefer one over the other?" and focus them in on methodology, patient typology or even status of the lead investigator/institution. I steer them away from gut feeling preferences where ever possible.

      about 2 months Flag
    • Coco Smith Profile
      anonymous
      Learning About Breast Cancer

      Hello again Jan - here is the reference to the most recent large scale review of this topic dated May 12 2016 http://www.ncbi.nlm.nih.gov/pubmed/27243924. It is titled JAMA Oncol. 2016 May 12. doi: 10.1001/jamaoncol.2015.5805. [Epub ahead of...

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      Hello again Jan - here is the reference to the most recent large scale review of this topic dated May 12 2016 http://www.ncbi.nlm.nih.gov/pubmed/27243924. It is titled JAMA Oncol. 2016 May 12. doi: 10.1001/jamaoncol.2015.5805. [Epub ahead of print]
      Postoperative Radiotherapy After Breast-Conserving Surgery for Early-Stage Breast Cancer: A Review.
      Speers C1, Pierce LJ1. Its conclusion Ïs "Adjuvant RT in early-stage breast cancer significantly reduces in-breast tumor recurrence and improves overall survival. Although risk reductions observed in randomized trials have been relatively consistent across series, the absolute benefit of RT is not equal for all women. Efforts are under way to identify which patients benefit the most from local or locoregional RT vs those at very low risk for recurrence in whom RT can be omitted. For patients who will benefit from RT and are appropriate candidates, hypofractionated RT should be strongly considered." So matters are pretty much the same as those of us in the very low risk category remain
      unidentified in the research. One thing of note though is - if you are having RT hypofractionated RT should be considered. Does your Rad Oncologist offer HFRT? I would ask them and if not - why not? And where does?

      about 2 months Flag
    • Jan Watt Profile
      anonymous
      Learning About Breast Cancer

      Hello Coco - THANK YOU for your prompt reply and for the link. I have researched Hypofractionated RT which sounds like a sensible alternative to Conventional RT... and it has been around for quite some time. Thank you I feel more in control by...

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      Hello Coco - THANK YOU for your prompt reply and for the link. I have researched Hypofractionated RT which sounds like a sensible alternative to Conventional RT... and it has been around for quite some time. Thank you I feel more in control by being informed :-)
      Regards Jan

      about 2 months Flag
    • Jan Watt Profile
      anonymous
      Learning About Breast Cancer

      Coco - forgot to thank you re your numbered items in your original post. I did demand (nicely) my recurrence risk statistics today and received them. These only refer to Chemo and do not include radiotherapy. mmm They are generalised but it is...

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      Coco - forgot to thank you re your numbered items in your original post. I did demand (nicely) my recurrence risk statistics today and received them. These only refer to Chemo and do not include radiotherapy. mmm They are generalised but it is an indication only. In my case this is an 11% increase is survival rate. (plus radiation benefits) Makes you wonder. but as someone else commented, if you don't do all you can the regret can be immense on you.
      Thank you again - you have helped today. :-) Jan

      about 2 months Flag
    • Connie Herrick Profile
      anonymous
      Survivor since 2011

      Hi all. Just an update. I am now nearly a 5-year survivor. Just wanted to mention that I went ahead with the radiation. I am doing fine--very healthy. I agree that these decisions are very personal. I do know someone personally that had a...

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      Hi all. Just an update. I am now nearly a 5-year survivor. Just wanted to mention that I went ahead with the radiation. I am doing fine--very healthy. I agree that these decisions are very personal. I do know someone personally that had a lumpectomy and decided not to have the radiation, and her BC came back. She needed to get a mastectomy the second time around. That certainly doesn't mean that her case is indicative that everyone should get radiation. I also know someone who did everything possible--chemo, radiation, mastectomy--and she has had 2 recurrences. Sadly, it is now in her bones, and she has ceased all treatment and is on hospice. Read the research, make your decision, and then move on!

      about 2 months Flag
    • Coco Smith Profile
      anonymous
      Learning About Breast Cancer

      Jan, you have a solid range of responses, reference to studies, your Rad Oncologist etc from which to draw. As Connie pointed out - a decision is necessary. There are no guarantees if you throw the kitchen sink at it or take a mid path or the path...

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      Jan, you have a solid range of responses, reference to studies, your Rad Oncologist etc from which to draw. As Connie pointed out - a decision is necessary. There are no guarantees if you throw the kitchen sink at it or take a mid path or the path of lowest treatment. There are many studies condemning aggressive over treatment as there are about the dangers of under treatment. Much of it comes back to your personality setting, tolerance for risks, as well as how you anticipate you would live with no recurrence or a recurrence. Some people would beat themselves up emotionally if they did not go down the most aggressive treatment path - even if it led to greater disability and/or iatrogenesis. Others can remain calm if eg., there is a recurrence after a low key treatment approach and accept the stats and risks. All we can do is share our stories and be honest about our perspectives, thoroughly understand the recommended treatment protocols, read the research, ask questions and try to mould it to fit. Very best of luck at this high pressure time.

      about 2 months Flag
    • Jan Watt Profile
      anonymous
      Learning About Breast Cancer

      Hi Coco - Thank you for your sound comments and others for their feedback.
      Yes it is a high pressure time and whilst it is great to hear others' stories it is difficult to draw on them for your own personal decisions... you are right... we have...

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      Hi Coco - Thank you for your sound comments and others for their feedback.
      Yes it is a high pressure time and whilst it is great to hear others' stories it is difficult to draw on them for your own personal decisions... you are right... we have to base this on how we know (or think we know) how we will react in the future. I have heard so many stories that range from success to failure with full treatments etc. It is a gamble. Ahh well - the system is there for our taking as is the natural pathway - so I will just make the most of both and just keep fingers crossed.

      about 2 months Flag
    • Jan Watt Profile
      anonymous
      Learning About Breast Cancer

      Interestingly when reading all studies and research papers - they do not provide how the subjects lived/ate etc - ie were they heavy drinkers, smokers etc. So in reality we are reading outcomes of patients who may well have smoked every day and...

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      Interestingly when reading all studies and research papers - they do not provide how the subjects lived/ate etc - ie were they heavy drinkers, smokers etc. So in reality we are reading outcomes of patients who may well have smoked every day and drank heavily which would have impacted terribly on their outcomes... and therefore statistics.
      I know I have learnt my lesson NOT to mention the word naturopath or natural supplements etc... I have been hounded by public health oncologist on this and bullied into stopping my natural regime. I only agreed to do so, to prove that my bloods were out of whack because of chemo not natural meds. now starting again.
      Ahh well - just an observation.
      Thank you for the opportunity to engage with you all - and download.
      Wishing everyone all the best - your journeys are more involved than mine and my thoughts are with you. xoxo

      about 2 months Flag

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