Wednesday, June 5, 2013

Why I Am Deciding Against Having Post-Op Radiotherapy

Breast Conserving Therapy means two steps: surgery (partial mastectomy, lumpectomy - same thing), then hand in hand with that: radiotherapy.

I was meant to go to the mapping session today for radiotherapy, get positioned and tattooed, but the lymph node removal wound under my arm didn't heal well and they won't irradiate you if you have anything like that going on, as the immunity system gets compromised during radiation. So I cancelled it in the meantime.

I told my breast care nurse that my lymph node surgery, under my arm, was weeping and she said "go to my GP". So I did.  My doctor was booked out, so the on-site nurse at my doctor's office looked at my wound instead - but then my doctor walked into the room, and said she had been following what was going on with me and would like to talk to me - and I felt so glad to see her.  

She has been my doctor for thirty years and is holistic, she also delivered my daughter 20 years ago. I made an appointment and went to see her yesterday.  I really wanted to pick her brains about radiotherapy. I should have spoken to her from the time of my diagnosis, but I have been kind of "toughing it out". 

I asked her what she thought of  radiotherapy and she said "use your intuition".  Oh boy. OK. She also said "you can just say no, you know", and that I don't have to be rushed into a decision about radiotherapy - there was no reason why I can't take a couple of weeks to think it through. I had been feeling pushed along and "processed". 

I always intended to have radiotherapy - but three things happened that pointed out to me that I should look at this more closely:

The first thing was the underarm wound taking time to heal, which gave me a bit of time to think, and caused me to run into my GP.

Secondly, I had seen a Radiation Oncologist last week, my first and only visit with her, and I was quite shocked she was giving me a LOT of grays (radiotherapy units). 56 over 3 weeks, 3 a day, which is well over the usual conservative 2 grays a day, including boosts to the tumour bed. This may be what is called hypo-fractionated radiotherapy, or it may be accelerated. I wasn't told.

She also uttered the alarming phrase: "you are pretty much guaranteed lung scarring". I took this at the time, and signed the consent form.  And then she said I should be on Tamoxifen as well. THAT'S when I realized her hard right point of view, which is quite different to my surgeon, who had said it was fine for me to not take it, as it only lessened my chances of re-occurence by 1.7% and it had some not great side effects. 

If the radiotherapy prescribed is hypo-fractionated or accelerated it is 5 or 6 weeks condensed down into three, BUT the overall gys are supposed to be reduced, and they weren't?

3gys a day means that if they get it wrong and the beam goes even slightly off, the damage is much worse (permanent) than if they give it in the standard 2 grays a day. There are people whose lives are ruined by the field not "hitting the target volume" at 3 gys. This is, of course, rare, (but I have already experienced someone adding 1 + 1 = 3 on my histology report!)

Here is a medical essay advising against use of above 2 gys a day:  and - Hypo-fractionation in radiotherapy:  investigation of injured Swedish women treated for cancer of the breast

She was also grimacing as she told me what I was getting, which set off my alarm bells. What was going on?

But before all that, there was a mistake on my histology report.  My Nottingham Prognostic Grade was put down as 3.32, when the real grade was 2.32, which artificially elevates my risk towards moderate, instead of the lowest risk category. I had told my breast care nurse about this error weeks ago, and she did nothing about it.

Yesterday I realized the importance of this mistake, this is the third thing.  I have since found online medical documents that state the NPI score is the basis of radiotherapy treatment.

Between the Radiation Oncologist being quite far right in her idea of treatment AND basing treatment on a mistake I feel I was getting "the heads up" about something. 

FURTHERMORE: I was diagnosed with Tubular Breast Cancer, which is just 2% of all breast cancers, so doesn't get much attention, but is the least aggressive, least likely to travel. I could not have got a better one, word for word "if you are going to get cancer, this is the one to get", they said at the Breast Clinic, on the day of my diagnosis.

Here is some information on Tubular Cancer: - I had never heard of it before a few weeks ago when I found it on my histology report (the analysis of the removed tumour). It seems Tubular is a "favourable" kind of cancer, the most favourable in fact.

According to online prognostic tools Tubular Cancer is about as third as active as the most common breast cancer women are diagnosed with, being Invasive Ductal Carcinoma (IDC), which mine is a subgroup of, but has these different, favourable characteristics:

Link: Tubular Carcinoma Study - contains the sentence: "Breast conservation treatment results in low rates of local recurrence for tubular carcinoma with or without the use of radiation therapy.

The oncologist used general statistics in the conversation - but my case is very different to the overall average woman with Early Breast Cancer. I walked away feeling a bit bewildered. Later I re-read the NZ Guidelines doc, as below, and realized, she should have already worked out and showed me my INDIVIDUAL statistics, to weigh up pros and cons of radiotherapy. This was not even approached in the slightest.

Here is an excerpt from the guidelines document:


The use of radiation in the last 15 years has increased rapidly, since lumpectomies instead of mastectomies have become more the norm. 

Lumpectomies nearly always are accompanied by radiotherapy, as the resulting stats reflect the same amount of breast cancer re-occurence as those who have mastectomies (which generally don't require radiation - one of mastectomies's advantages). 

Currently only women over the age of 70 with small, non travelling cancers are not recommended radiation (negatives outweigh benefits).  

Radiotherapy can kill the initial cancer, but can also cause a myriad of other cancers starting from around the three year after mark. They are not huge numbers of cancer, adding up to under the 1%, but add that to the cardiovascular and lung damage problems from grays "scatter" (there is an "acceptable amount of grays" to the heart and lungs apparently) and it is not looking like the benefits outweigh the risks to someone like me, who is, it appears, getting small benefit, as my risk is lower to start with.

The most common radiotherapy induced cancers are lung and leukemia. The fields of grays penetrate lungs, heart and spine. Radiotherapy Induced Lung cancer for example, tends to be further down the years, 3-15 away - just as someone who has radiation to the chest when under the age of 25 has increased risks of cancer, including breast.

Additionally there is an increased risk of heart disease.

Below is recent information about the range of increase being from 2.4-3.4%. The average of the two scores added to the inherent/natural risk of 1.9%, would bring my post-radiotherapy average heart disease risk to 4.8% - this is already, without any consideration of radiotherapy induced cancers, not looking very viable compared to the 5.8% improvement in recurrence rates radiotherapy would give me:

I was "pretty much guaranteed scarring of the lungs" by the Radiation Oncologist. Additionally the she mentioned rib necrosis, which means some of my ribs would be "cooked" - they change their composition and become more prone to breakage and pain down the years.

Effects of lung scarring can lead to lifetime problems with lung capacity, dry coughing, further inflammation, becoming more prone to pneumonia and the scar tissue actually predisposing your lungs to developing common lung cancer. So possibly immediate lowering of the quality of life, with serious long term possible developments. Many people notice no side effects however, and the damage is only visible on an X-ray. Being a singer, I think I would notice the difference.


The Radiation Oncologist was planning to give me boosts to the "bed" where the tumour had been (despite my massive clean margins). For some reason she had me in the 50 and under age group, yet according to NZ's own guidelines I should be in the 50 and OVER age group,(50 IS over 50!), whose statistics show little benefit from boosts (0.8%) AND worsened long term side effects.

OS in the above text means Overall Survival, as you can see, these boosts have no bearing on that. It is not life saving, its about cutting recurrence rates.

The screen shot below is a discussion in the context of the newer shortened radiotherapy regime. It cautions that boosts should NOT be combined with shortened, more intense (3 gys a day) regimes, yet this combination is exactly what I was prescribed :

Boosts are useful for women my age, or any age, that have positive margins (remnants of the tumour found too near the excision edges). My margins were very large, and clean, with absolutely no evidence of vascular invasion or lymph node invasion. You can't get much better than that. And then its Tubular as well.


How I arrived at the level of benefit from radiotherapy is further down the page. The maximum "good" it can do me is to decrease my chances of recurrence by 5.8% (from a maximum estimate of 8.3%* - this is from the IBRT predictive tool)

I feel its only right to follow this with the negatives that reduce this benefit:

Less up to 1% cancers resulting from radiotherapy (including lung and leukemia)
Less 2.9% additional chance of heart disease (see screen shot further up, this is an average, not a maximum)

The lung scarring, fibrosis etc is an unknown, but "common" (guaranteed in my case, it must have been the high grays, so scarring guaranteed, how that would affect me, not known).

There there are possible pain issues, hardening and shrinking of the breast tissue itself, getting worse at 5 and then 10 years.

So now the advantage/reduction in recurrence risk by having radiotherapy, is reduced to a tiny 1.9%*

I can take Tamoxifen to lower my risk by an additional 1.7% - add radiotherapy (1.9%) and tamoxifen together = 3.6% advantage all up - NOTHING like the 19% improvement in overall statistics quoted for Early Breast Cancer patients in NZ to me at the last meeting with the RO.

1.9% is similar to the figure of 1.7% my surgeon discussed with me as "not being worth it" in regards to taking Tamoxifen.

*According to 2010's Comparative Study TC to IDC -

- the outcome of recurrence in TC cases was 6.9%, Invasive Ductal Carcinoma, (the commonest breast cancer) recurrence was 25%.

In the above study NO women died of TC (there were 102 TC cases in the study, and this is one of the larger studies). There was a tiny mortality from women originally diagnosed with TC, but they had a recurrence of a more aggressive kind - which was the true cause ultimately, of death by breast cancer.

It seems surveillance is my best protection.  And to reserve my one shot at radiotherapy, should a more aggressive cancer emerge, at some time in the future. 


Mostly the word "recurrence" is mentioned in favour of the use of radiotherapy. Some of the figures on this page also talk about mortality i.e. deaths and sometimes Disease Free Survival. One has to keep an eye on these different terms.

Radiotherapy is exclusively used to reduce recurrence. So therefore it CAN also have a long term effect on mortality, but not usually.

On most information websites about breast cancer risks, one of the risk factors, along with ageing and being a woman is:

"Having had breast cancer previously"

My chances of getting breast cancer again are heightened, compared to a woman who has never had breast cancer before.  This is not the recurrence rate affected by radiotherapy.

Some studies say there is a 16-26% risk of a "new primary breast cancer" for a Tubular case like mine, which is still less than the average woman with IDC (as high as 30%). But compared to 14% risk for the average woman (i.e. 1 in 7), my new risk, post-diagnosis risk is elevated

So this risk is far greater than my risk of recurrence in the ipsilateral breast (original site), which seems to be somewhere between 8-11%.

So radiotherapy has little bearing on this new inherent risk factor: This is something doctors conveniently don't mention. Radiotherapy is ONLY about preventing "recurrence" in the same area. Radiotherapy is to the affected, diagnosed breast only.

A "new primary" breast cancer can happen, for example, and is unrelated to the original cancer and radiotherapy, if treated with radiotherapy, especially highlighted when diagnosed in the opposite breast (contra-lateral), and is by far, the larger risk for me, that radiotherapy can do nothing for - although some studies suggest radiotherapy can CONTRIBUTE to cancer in the opposite breast.

Sometimes "new primaries" will also occur in the same breast as earlier diagnosed, and it can be difficult to know what is related to the former cancer and what is a "new primary". However, recurrences are usually diagnosed within three years of the initial diagnosis and operation, so there are many ways to observe whether a cancer is a recurrence or a "new primary".  The paragraph screenshot below, explains it quite well. The full text can be read via the link.


I came across this new nine year study about women with Early Breast Cancer, Radiotherapy vs No Radiotherapy, from May 2013. This is considered "radical", as my probable decision is:

"Post-op Radiotherapy Not Needed in Select Breast Cancers"

The overall result is only a 1% difference in recurrence between radiated and non radiated women - but this is in particular for small, early, low grade cancers (such as mine). The recurrence rate without radiotherapy was 4.4% compared to with radiotherapy at 3.4%. 

If they do a few more studies that agree with this, in a few years, women like me won't be pressured to have radiotherapy at all. Its considered very controversial to not have radiotherapy in currently. But I am very much in the grey area as to whether it is worth it for me. I wasn't aware of this, until fate and instinct intervened.

The only difference between myself and the women in the study, and I completely meet all that criteria, and at the lowest end of risk, is that I don't live in Italy and am five years younger than the youngest woman.

Tamoxifen (endocrine or hormone therapy, a pill a day for 5 to 10 years) is also involved in these figures, keeping them so low, but this low figure compares similarly to the chart further down, which also accounts for use of Tamoxifen.

Early Breast Cancer doesn't kill anybody, late breast cancer does. 

Radiotherapy is only ever one shot, a breast cannot be safely irradiated twice (or even once for some). I think I would prefer to keep this as an option in the future, should there be any recurrence, especially if it is a more aggressive cancer, which seems to be the only reason why women originally diagnosed with TC die, (when they get a different more aggressive kind at a later date).

6th June 2013 Update

And so it begins, my Breast Care Nurse calls me this morning and advises me my chances of recurrence are 20% (she was making it up as usual, she changes her "data" all the time, I have noticed this from the beginning). She also said (ha ha) "Oh yes, I have changed your NPI (Nottingham Prognostic Score) now - yes it was wrong, ha ha". This is AFTER the Radiation Oncologist has prescribed me radiotherapy (thanks for that!)

I said I don't want radiotherapy, and then she said "if I had known you would be like this - we would have given you a mastectomy". I can't believe a nurse, who claims she is supposed to support whatever choice I make, would say something so unprofessional and menacing. I have asked her not to contact me again.

And she actually had no idea what my ACTUAL stats and odds are. But I do. Now.

WHY DO the guidelines say "a woman should be informed of risks" when if a woman decides she thinks they are too much, she will still be pressured to take the treatment?

The fact is, I AM allowed to refuse treatment, but this nurse took it upon herself to pressure me in no subtle way.

I feel like my cancer was some kind of peculiar "gift".  A big wake up call - and the next message is yelling at me not to risk my lungs and other perfectly good bits. If I had something Grade 2 or 3, or anything in my lymph nodes, I wouldn't even be entertaining the thought of not having radiotherapy - but I am at the complete lower end of low risk.

I permanently gave up alcohol the day before my diagnosis, have since lost 7 kgs and doubled my exercise, which apparently can improve your chances by 40% of avoiding recurrences.  I am at my perfect weight.

Have I bored you long enough?  

Below is a screen shot from the Management of Early Breast Cancer NZ Guidelines document. It states that after lumpectomy and radiotherapy (and possibly Tamoxifen too, but its not clear), a women who has had early breast cancer has the recurrence odds of 7.3%. Which is about the same as my own highest odds WITHOUT radiotherapy OR Tamoxifen*.

The next bit is just all the boring figure work, as to how I arrived at my individual statistics.


Below is where I got my "recurrence of breast cancer in the next ten years" figures from, being 8.3% without radiotherapy or Tamoxifen. Without radiotherapy but plus Tamoxifen = 6.3%. The benefit of radiotherapy is 5.8% reduction in recurrence over ten years. It does not take into account the type being Tubular, just breast cancer in general. So this figure is on the high side, as Tubular cuts figures drastically on other prognostic tools. You can see the difference on the interactive prognostic tool link further down.

This calculation was via a doctor's online tool called IBTR. These are my stats entered and each is a screen shot of the different odds of re-occurence over ten years.

And here is another one below - this time it takes into account my particular kind -Tubular Cancer, which has better prognostic features than any other Stage 1 cancer. 

The calculator below considers that radiotherapy has been applied, thus the 2 persons per hundred (2% death rate over 15 years) is similar to the second table above "with radiation" being 2.5% recurrence. This calculator illustrates more the differences between Tubular and other kinds of breast cancer.

You can enter stats into the calculator here and see how Tubular compares to other kinds of cancers: Breast Cancer Outcomes over 15 Years - choose the pie chart or bar graph option, the mortality curves are hard to interpret. Ductal (IDC) is the most common and is, according to these statistics three times more dangerous than Tubular, and ductal is by no means the most aggressive breast cancer there is. The Tubular death rate is rounded up to 2 persons, the actual figure is 1.5%

This table below is from Adjuvant Online! another doctor's prognostic website:

70% of women diagnosed with breast have IDC. Other breast cancers are more aggressive than IDC. In a list of all breast cancers in the order of most aggressive to least, Tubular Carcinoma is be at the very bottom of that list (see table above)

Update 16th June - I have another appointment to see the Radiation Oncologist, as options are limited, (I need an RO/hospital specialist or a GP referral to even see another expert in this field for a second opinion).

The RO this time has agreed to discuss everything with me including the "many interesting points I raised", so I can be sure of my decision "whatever it is". I like the sound of that, and I go into this meeting knowing infinitely more about my situation, than I did at the last meeting. SHE might even be more acquainted with my stats this time.



A retired microbiologist gave me the heads up on this latest research, something that cemented her decision to not have radiotherapy: - this is a study in secondary cancers from radiotherapy

A study of actual risk for second breast cancers and the current trend for prophylactic mastectomies in an un-diseased breast.

Tubular Breast Cancer Links:

Largest Study for Excision only treatment for Tubular Breast Cancer - just 2 out of 44 patients had a recurrence within ten years, both are alive and well after salvage surgery.

In conclusion it states: "This report suggests that breast irradiation could be omitted after conservative surgery in older patients with smaller (< or =3 cm) tubular/well-differentiated breast cancers. However, due to the retrospective nature of our report, we cannot categorically make this 

Tubular Breast Cancer compared to Invasive Ductal Outcomes - again, a conservative approach is recommended in treatment.


This is just my story, my life. As my doctor said to me, "you are a unique human being, do what is right for you"..

Just the lumpectomy thanks. Nice job, stop there.


SOHONSW said...

Pauline - I feel like I met my cancer twin when I read your post. I too was diagnosed with BC - had wide local excision lumpectomy, my margins were clear 12-14mm [HUGE - I gave written instructions to the surgeon to go for it and not worry about scars]. Like you mine was tubular with a speck of invasive DCIS, cribiform - all the things that put me in the 1-2% of less lethal Breast cancer you had.
I admit I was being a bit strategic with my surgeon in agreeing to the wide local excision/lumpectomy - he assumed I would have radiation. I had done my research and decided I would or would not depending on the pathology results. I semi started to explore this with the surgeon but he signalled he would only perform a mastectomy on me if I did not intend to have RT, so I fluffed over the issue so he would operate. He was the best local BC surgeon with the lowest infection rates etc so I wanted him. As a lawyer I also knew in the surgery aftermath, they had no legal right to hold me down and radiate me, so I was on safe ground where my own medical wishes would dictate what did or did not happen. Interestingly my Oncologist - who recommended no chemo, no adjuvant therapy etc because the stats on the nomograms and others like Adjuvant Online! where clear the mortality and mortbidity associated with them was far, far greater than any benefit conferred.
My Radiation Oncologist was as bad as yours but in different ways. He had this sausage machine approach where during the consult he asked his own questions he imagined I wanted or needed to know [quite insulting kindergarten level questions at that] and then proceeded to answer his own questions - all the while grossly manipulating the stats to terrorize me into going along with this recommended treatment - 6 weeks of full on radiation + boost. He told me I had over a 30% risk without it. He did not state this was a risk of RECURRENCE - he was deliberately manipulating the meeting to lure me into assuming it was death rate/overall survival he was referring to. However by then I had time to research tubular carcinoma and DCIS and familiarise myself with the reporting methods. I pressed and pressed and pressed and finally after wasting at least an hour of his time trying to wriggle out of answering me dimply and truthfully, he and his off sider went away for about 15 minutes, crunched the numbers to the questions that actually meant something to me - and returned to admit to me the full bore RT with boost they were recommending for me would increase my recurrence rate by around 3% and after I pressed again, admitted it would not have a material effect on my overall survival.

Pauline said...

Thanks for your story. It is good to know I am not alone in making a stand about decisions in my own life. Its really something for women to be aware of. It never occurred to me to agree to radiation in order to have the lumpectomy, but well done you!

Pauline said...

Its a terrible shame we have to even entertain the thought of being sneaky when the medical professionals themselves actually say their mandate is to "support us in any decision", but it doesn't seem like it, does it?