I was diagnosed with secondaries from the start, and was told my cancer was strongly oestrogen receptive (at the time it was Her2 negative and progesterone negative). However, I had a biopsy of a secondary tumour in June this year, which has revealed that my cancer is now strongly Her 2 positive, and weakly oestrogen receptive. Will be seeing Prof on Monday to discuss options.
The reason I’m posting this is to urge people with secondaries that are progressing to press for a biopsy. The fact is that cancer changes its receptor in around 30% of cases, and it is vital to know what is going on to ensure appropriate treatment. There is no point having treatment for oestrogen receptive, if the cancer is Her2 positive is there ?.
Sadly NICE have said that doctors should not biopsy secondaries, so some doctors will not do this. Luckily my Prof ignores NICE, but patients should always remember that they can vote with their feet.
Hi Lemongrove,
Thanks for sharing that piece of information especially about the dr’s not doing biopsy’s on secondaries. I presume now you are her2+ they will put you on herceptin, myself and quite a few other ladies with secondaries are doing very well on this drug and the SE are minimal. I recently had my herceptin and the nurse who administers it to me (healthcare at home because its an expensive drug) told me a story about a lady whom she has been giving herceptin for the past 12 years! The lady in question had spread to liver, lungs and spine she was being kept stable by the herceptin. This information certainly gave me a boost.
Sending you lots of love and light
sarahlousiexx
Thanks Lemongrove; that’s a really useful reminder and I will ask next time I have progression. When I had a regional recurrence last year, which they did biopsy as it was easy to get at, I think that was already less Her2 negative than my original tumour although it came out as negative in the end (they had to send it off for the second type of test to be sure) but it was still pretty ER+. Hope the prof will come up with an effective and easy to tolerate plan for you.
Thank you lemongrove, really helpful to know. Also shows that we should never be afraid to ask or question what is happening with the mets and treatments. long are the days you just listened and said nothing. And with sites like this with amazing strong ladies who do ask and continue to question help those of us are are a little nervous to do so.
I try to go in appointments thinking its my life… mine to decide and mine to fight for but thats taken time to get there and when I got secondaries it knocked me back again but slowly with the help of you guys on here starting to gain my strength .