Questions about radiation in early stage IDC

I don't doubt this one woman's experience and that others have, unfortunately, had a bad time with rads as well but the vast, vast majority of women find it much, much easier than chemo.  Some of these side effects don't sound radiation related, frankly.

I think I would of turned radiation down if I had known about the stress it put me under. For me it was way worse than chemo.

Cowgirl, that is a very vague and misleading question you claim people are asking themselves.

First, breast cancer patients don't die from local recurrence. They die from distant mets. Radiation only addesses local recurrence.  The question would be better put, how would you feel if you didn't do things that could ACTUALLY extend your life?

Anyway, I don't know what "throwing everything at the cancer" would include. Wheatgrass juice? Distilled water? Melatonin? Organic only?  Flax? The list is endless. At what point should a patient feel guilty for not doing "everything?"

Obviously, no one can "throw everything" available at cancer. Educated patients pick and choose based on their individual preference and consultation with those they respect. You set up a patient to fail when you expect them to do what you consider everything. I sincerely hope I misunderstood what you said.

MHP70--thank you for starting this thread.

The lesson I'm taking away is there is no full disclosure about radiation therapy. Has anybody written a book about what we should know to ask about our therapies?

There actually is a book about questions to ask if you have bc, I saw it at a bookstore a couple of months ago.  Wish I could remember the name or the author.  Its something like 100 Questions to Ask, or something like that.  I have no idea if its any good.

I am just as confused as everyone else. My PS thinks they will recommend radiation for me because of the size of the tumor. I'm really hoping he's wrong. I am node negative and he got clear margins. Radiation just because my tumor is 5.5 cm. It will be interesting to see what the oncologist says Tuesday. I know chemo/Herceptin will stress my heart. Do I really need the radiation to complicate that even further?

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BTW my BS did tell me that you are at increased risk of lymphedema by just getting a simple mastectomy. (I had simple MX with sentinel node biopsy on right/Modifed radical (10 nodes) on left).

I did agree to radiation after my lumpectomy but, had I to do it over again now with the knowledge I've gained through research over the last couple of years, I would have declined the radiation.  Yes, it does decrease the risk of the cancer returning to that breast by 30 per cent but how much does it decrease the expected mortality rate?  According to the statistics (those things that oncologists love to throw at us when advising certain allopathic treatments, having radiation therapy after a lumpectomy does not increase your expected survival rate by even a fraction of a percentage point - nothing, rien, nada. 

Also, perhaps my experience is not the norm, but when I asked the radiation oncologist about possible long-term side effects as a result of the treatments, she reassured me that there were none, particularly given the fact that my lump had been in my right breast.  It was only after the fact that I learned that this was far from the truth - that these treatments actually permanently altered my DNA, increased my chances of developing lymphedema, and severely impaired my immune system. 

I would never advise any woman to get or not get radiation therapy.  My only advice would be to do your research and then decide whether or not this treatment will benefit you personally given your particular diagnosis. 

In medicine "distress" is an aversive state in which an animal is unable to adapt to stressors.  Not likely used in the context of medical literature for local recurrence unless it is proved stress and suffering is causation for such.  Breast Cancer patients die in the thousands each year from distant mets and these same distant mets started from a localized area first that went undetected.  In the adjuvant setting, there's really an overall survival advantage when we prevent a rouge cancer cell from mets due to radiation therapy.  We just don't see this benefit in later stage cancers. Also, stray cancer cells aren't born from a surgery or a biopsy.  They most likely have been there a long time dividing and moving into the blood stream/lymph system accordingly unless we are lucky enough to catch it early enough so that a treatment such as radiation can possibly stop it and increase our chance of long term survival.   

According to the Fisher 20 year study comparing mastectomy, lumpectomy alone and lumpectomy plus radiation (which has been used to formulate the standard of care),  there was no significant difference in disease free survival,  no significant difference in distant disease free survival and also no significant difference in overall survival among the three groups.

http://www.nejm.org/doi/pdf/10.1056/NEJMoa022152

So although radiation may indeed prevent local recurrence in those with clear margins after mastectomy or lumpectomy, it seems to have little or no impact on survival statistics in those with negative nodes (these women all had level 1-2 node dissections). The theory had always been that reducing local recurrence will prevent distant metastatsis which in turn would be expected to increase survival. But apparently, according to this important study, that's not  necessarily the case.

Another very interesting statistic in this study is regarding  recurrence in the lumpectomy with radiation group  - although the addition of radiation to lumpectomy decreased recurrence within the first 5 years years, once 5+ and 10+ years rolled around, the tables turned in favor of those who did NOT have radiation and in particular, the rate of contralateral breast cancer began to rise. (see table 3 in the above link)

There's also a 25 year study, again by Fisher, providing statistics comparing the old radical mastectomy  technique to total mastectomy and mastectomy with radiation -http://www.nejm.org/doi/full/10.1056/NEJMoa020128

Again, radiation to the breast seemed to make no difference. The results showed no significant difference in disease free survival, no significant difference in relapse free survival, and no significant difference in overall survival.

Rose, that 40% figure came directly from the Fisher clinical trials and is a reflection of the potential benefit for the whole group of women who had a variety of different prognostic factors. It's a relative number and doesn't really provide anything useful in terms of individual benefit. Those studies included women with tumor sizes up to 4 cm (a BIG tumor). They included both stage 1 and stage 2 and all tumor grades. The ages ranged up to 75 and some of them had positive  nodes  The only thing that they all really had in common was clear margins - but exactly how clear they actually were was never really defined as best I could tell. 

40% is an impressive number to throw out there when trying to convince someone that they should commit to radiation, but beyond that there's not much worth in it. The 40% is the worst case scenario for the group as a whole but individually it could be much, much lower for those with the lowest risk tumors ( something like 3-6%) and possibly even much higher than 40% if the studies only included those with the highest risk tumors (grade 3, smaller margins, on the larger side of the 4 cm maximum etc). Since it appears you had a low risk type of tumor, and assuming your margins were very wide and clear, your personal risk reduction benefit from having radiation after lumpectomy was likely not anywhere near 40%.

And not intending to scare you but rather alert you to being vigilant in the future - cardiac problems from radiation to the left chest aren't likely going to be evident for at least a decade, especially in someone younger with a healthy heart to begin with. Although there have been great strides in making changes that lower the risk to heart and lungs, the risk has not been completely eliminated and there have been a few small studies recently that show asymptomatic changes in cardiac structures even with contemporary radiation techniques.