Grandmother - 28 years later.

Hi,

I am new to this site and am here to find out information about my grandmother. She is 96 and has just been diagnosed with a tumour in her left upper arm (in the bone). She had a mastectomy and radio (no chemo) 28 years ago for breast cancer. The doctors seem to think it is related to her bc and are not treating her for it apart from pain relief. How common is it for bc to recur like this so many years later?

I love my gran very much even though I know she is very old and has fought through so much already. The main question I want to find out is does it develop quickly if left untreated and in the bone?

She lives in france and I have just been to see her - I want to see her again but have no experience of this.

Sorry for the ramble.

Many thanks

Jess

Hello Jess, you must be very worried about your grandmother and I am afraid I cannot give you any definite answers, but here are some thoughts. No doubt others will be along soon with some more.

First of all, twenty eight years between a primary breast cancer and then secondary spread (which is what, I think, the doctors are saying this thing in her arm is) is a very long time. The most common time for breast cancer to return as a secondary is within a few years - within two or three years is most common. So it is possible that your grandmother has a very slow growing type of cancer that has taken all this time to show up.

When I was first diagnosed with spread to my bones my breast care nurse told me that some people live for many years with bone spread and it is unusual for bone spread, on its own, to kill you (it can, but it is unusual). It is usually spread to other organs that is more dangerous. In the UK, therefore, a diagnosis of bone spread does not mean that the doctors will be rushing into chemotherapy or any other aggressive treatment, and it would be even more unlikely that they would do this with your grandmother, considering her age.

However, most people with spread to the bones receive some sort of bone strengthening drug - known as bisphosphonates. These help to strengthen the bones to try to prevent any further spread and to stop the bones from breaking. There is also some evidence that bisphosphnates can help prevent further spread to other organs. I wonder whether there is any reason that your grandmother has not been prescribed these bone strengtheners and it would be worth asking her doctors.

SOme people with bone spread can keep things stable for a good long time through use of hormonal drugs (e.g. tamoxifen, arimidex, aromasin or femara). I suspect your grandmother may not have had any of these before, bearing in mind how long ago her original cancer was. And maybe her original tumour wasn’t tested to see whether it would respond to hormonal drugs. But again it is worth checking with her doctor whether it can now be tested (if the hospital that treated her first time round still has a tissue sample from the original cancer) and whether hormonal drugs might be effective.

Hope this helps

Deirdre

I couldnt possibly add anything to what Deidre says it is very comprehensive and accurate. The only thing is they may not have a tissue sample of the original tumor, I dont see why your grandmother couldnt at least try tamoxifen, it is not invasive, side effects might be minimal - worth a question at least.

28 years later…its incredible that it should do that.

Cathyx

Thank you so much for your replies. I was shocked to hear that it is likely to be related to the bc - especially after so long, but apparently not impossible. I am not sure if she has been prescribed the bone strengtheners (I will ask). She is an amazing lady and I can’t bear her being in any sort of pain (she says it doesn’t hurt at the moment), fingers crossed it will be slow growing and painless.

Many thanks

Jess x

Jess, one other thing that has occured to me is that if there is no sample of the original tumour available (I am not sure how common it was back there to take and store samples) then it may worth asking whether you can get hold of a sample from her arm. Bone samples are not usually done, but bearing in mind that the arm is more accessible than, say, the spine, then it could be worth a try.

Deirdre