Friday, March 11, 2016

Breast cancer screening in PJS


I recently shared very diverse pancreatic cancer screening guidelines for people with Peutz-Jeghers syndrome (PJS) at this blog.

Now, breast cancer screening gets a spotlight. Though the guidelines don't vary as much region-by-region, there is a startling difference between those of St. Mark's in London and other medical experts. And, again, screening guidelines for Americans are much more aggressive, beginning at a younger age, using more technology and done at more frequent intervals.

Note: All breast cancer screening guidelines are for women with PJS, though men with PJS have been diagnosed with breast cancer and many have had swollen breast tissue (gynecomastia) as boys and/or men.




To begin with St. Mark's breast cancer screening guideline for women:

St. Mark’s in London recommends:

::: Breast screening as per the national screening programme (women aged between 50 and 70, mammography screening every 3 years).

::: Self examination of breasts and testes to check for unusual lumps.


That's it!

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Let's compare it to the rest of the wider world:

Here's what a consortium of European experts advise:

Question: What is the best method of breast cancer surveillance in PJS?
The earliest documented case of breast cancer in PJS is 19 years, and clearly the breast cancer risk (cumulative risk 31-54% at age 60 years, usually ductal, sometimes lobular with a mean age at diagnosis of 37 years (19-48), is significant.

Conclusion: Annual MRI/US should start at age 25-30 years, with x-ray mammography being substituted after the age of 50. (Level of evidence: IV, Grade of recommendation: C)


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Dutch surveillance recommendations for PJS patients:

Breast exam & breast MRI – annually from age 25
Mammography & breast MRI – annually from age 30


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From the NCCN in the USA:
NCCN Guidelines for Women with Peutz-Jeghers Syndrome (STK11 mutations)

Breast cancer screening: Clinical breast exam every 6-12 months beginning at age 25
Annual breast MRI and mammogram beginning at age 25

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And finally, eMedicine's guidelines:

Breast - Regular breast examination (monthly to 6 monthly) from age 18 years onwards, mammography (or MRI) every other year (annually after age 50 y)


Wow!

Everything from mammography every three years between the ages of 50-70 at St. Mark's in London, England to monthly breast exams (I assume manual exams) and mammography or MRI every other year between the ages of 18-50, then annual mammograms after age 50 in N. America.

That opens a huge range of possibilities for both under diagnosis and over diagnosis.

There are clearly benefits and harms in either scenario.

I honestly don't know what to make of this and would like to know whether St. Mark's is as strict with the no's as US practitioners are as strict with the yeses.

Please join us at https://www.smartpatients.com/communities/peutz-jeghers-syndrome to share your stories, questions and concerns. Free registration required.

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