Is this the end?

Hi,

My elderly Mum was diagnosed with secondaries to the lungs & liver two years ago & a hotspot was found in a rib a few months ago. She had chemo, followed by Tamoxifen, followed by Arimidex and bone phos

About 2 months ago, she started getting intense pain in the knee with swollen, painful tissues. None of the painkilling medications prescribed have had much positive effect however & she has become really depressed & sleepy & her appetite has diminished.

She has just had her followup appointment with the oncologist, who has said there is “extensive spread” since her last appointment with him 4 months ago. He also says that the knee is part of this spread.

They took her off immediately to give her chemo in the form of a pill.

My brother (who accompanied my parents to the appointment) said the nurses in the clinic told Mum she “had done really well to last two years” (not exactly those words).

This sounds like they are not expecting her to last much longer to me!!

Have they written her off??

We are very frightened now. This is not at all what we were expecting. We just thought she might have had a spread of BC to the knee but not the rest.

Psyche

Hi Psyche,

It sounds like you and your family are having a really difficult time at the moment. If you feel you would like to talk to someone in confidence then the Breast Cancer Care Helpline is here for you, offering support and information. Calls to the helpline are free, lines are open Mon to Fri 9am - 5pm and Sat 9am - 2pm Tel: 0808 800 6000

Kind regards,
Kate, BCC Facilitator

Hi,

Further to my post, my Mum was NOT in fact given a chemo pill after her appointment. The onc says he wants to give her chemo, starting this Wednesday, subject to tests on her heart.

He has said that the hormonal treatment she was on (Armidex) was not working & that the only option is to try a different type of chemo (she had 5FEC 2 years ago) but that we shouldn’t expect too much from it.

Mum is really bad at the moment. Her legs have swelled up (which onc says is due to the liver). He says that there has been rapid spread through her liver & bones.

She has completely lost her appetite & is struggling to eat anything. She has been sick a few times, as she has been forcing herself to eat.

Is that right that there is no other treatment & that this one may not even “do” anything? Is there any chance of tumour shrinkage or are we clutching at straws?

Will Mum be able to have chemo if her appetite has decreased?

We really have not had much support or information from the medical people. The MacMillan nurses are unreliable, not turning up when they say they will & being very vague & non-commital about things. The GPs have just tried not to commit themselves to anything, leaving it all for the onc, even though Mum had to wait 4 months to see him following her last appointment. The District Nurse might as well be the postlady for the use she is.

I don’t feel I can speak to anybody on the Breast Cancer Care Helpline unless there is some practical advice they can give. Sorry if that sounds ungrateful.

Psyche

Psyche - sorry that you are going through all this and that so far no one else had replied… i don’t know if it might be a good idea to also post all this over on the secondaries forum as they would probably know most about all this…

The phoneline is manned by volunteers who have breast cancer themeselves as well as nurses and you should be able to speak to one of them…

Theresa

Hi Rhapsodyangel,

Thanks for your kind reply. Yes, I will take your advice and post this on the secondaries site. I always feel a bit of a fraud doing the posting myself because I don’t have BC myself - but Mum has never touched a computer in her life so hasn’t had the benefits of being able to share this burden with others in the same boat.

Thanks again,

Psyche

Hi Psyche,
I’m really sorry to hear of the problems you are having with treatment and care for your mother. I have heard before that McMillan nurses are always very busy, but I have also heard that Marie Curie nurses are very good. I have not had personal experience of them, but it must be worth looking into whether they can help you at all. Hopefully, they will have more time to care for your mother, than the NHS.
Pat

Psyche

I am so sorry that you and your family are having such a terrible time. My Mum had bc which had spread to her bones by the time it was diagnosed. In fact, that was how they found it, because she went to the doctor with shoulder pain. They didn’t operate but gave her Tamoxifen and then Arimidex. I think she had bone phos, too. She had radiotherapy on various bone hotspots, whenever they became a problem. In other words, they managed it.

As far as practical help goes, well when my Mum’s appetite deteriorated and we found it best if she had her food liquidised, as she couldn’t eat anything too dry. An idea is to have a sherry before meals, which helps stimulate the appetite. We kept as positive as we could with her, but sometimes elderly people just lose the will to carry on.

I am surprised you are having trouble with the MacMillan nurses. Perhaps it would be worth trying to get a different one. My friend who had bc, thought hers was absolutely wonderful and still stays in touch over four years later, so I think you may have been unlucky - or you could try Marie Curie.

I do think it would be worth ringing the helpline, as I am sure they can help with practical matters, or would know who you should contact, if not.

All the very best to you and your family.

Ann x