Table 2 Barriers to the discussion of breast cancer chemoprevention in Family Cancer Centres with supporting quotes

Evidence not strong enough

1A (med oncologist)

1

I don't think that there's really strong evidence to support a reduction in breast cancer occurrence [in BRCA1 and BRCA2 mutation carriers].

4A (med oncologist)

2

It may be effective in BRCA2 carriers, but the numbers are very small and so, we probably need some further evidence.

5C (med oncologist)

There are no randomized trials in high risk women, truly high risk women

1C (med oncologist)

3

There's no survival benefit.

2B (gynae oncologist)

4

You may... be preventing some cancers but you may not be saving lives.

Side effects outweigh benefits

2A (breast surgeon)

5

The data would support that there is risk reduction but... at a price, of the side effects and complications and I don't personally think that that sort of balance is such to encourage people to be taking the medication.

BSO superior to chemoprevention in BRCA mutation carriers

5B (genetic counsellor)

6

And next the question that I don't know, and I don't think anyone does, is what's the benefit of Tamoxifen in addition to the benefit you're going to get from oophorectomy...

4A (med oncologist)

7

Because of the very high uptake – 70%, of BSOs, it doesn't routinely come up.

PRACTICE

Not TGA approved* for prevention

2C (gynae oncologist)

8

..and also because it [ Tamoxifen] is not approved in Australia for prevention, you have to pay for it..... It's not hugely expensive but it's not cheap. And you can tell people that it is approved in the USA for this purpose but not in Australia, and you can give them the facts.

Not on the PBS** for prevention

3A (clinical geneticist)

9

When the IBIS report showed Tamoxifen reduced the risk of breast cancer, we kept a watching brief on that as it were, but didn't pursue it in detail because Tamoxifen was not and is still not on the PBS.

Chemoprevention only referred to in national guidelines as part of clinical trials

4A (med oncologist)

10

We discuss it when the chemoprevention trials are open..... But.... once the IBIS I closed, we have not routinely been discussing chemoprevention with the unaffected woman.

5A (clinical geneticist)

11

If you go back to all of the management guidelines and look at the...recommendations for chemoprevention, there's very few of them that actually recommend it.

Not many women ask about it

1D (med oncologist)

12

Up until recently I haven't really delved into it ... unless the woman has appeared interested in some way.

1C (med oncologist)

13

Not many woman come forward asking questions about this.

PERCEPTION

Participant

No

Quote

(We are) not knowledgeable about chemoprevention

3B (clinical geneticist)

14

Chemoprevention is talked about very little because basically we have very little knowledge of that' and later, 'if a woman specifically asks that question [I]would say, look that's not my area, go back to your oncologist.

Dialogue between

6E (clinical geneticist) and

6D (med oncologist)

15

LK   Do you discuss it with people, 6E?

6E   Look, pretty infrequently, that's the sort of thing that um, well if it does crop up it's usually because I've dragged 6D in to see my patient [laughs].

LK   And is that because of your specialty 6D?

6D   I'm an oncologist. So I would be more comfortable to discuss what the risks are, what the benefits are of, you know, taking Tamoxifen.

Women are opposed to hormonal treatment

1D (med oncologist)

16

This group as a whole are not really using any form of hormonal intervention, whether it be the pill, HRT or Tamoxifen, they are un-keen. And later: [They have had it] drummed into them right from the year dot, hormones are bad, hormones are bad.