Hi,
I posted on hear just over a year ago, soon after my mum (77) began treatment for her BC. SHe had had symptoms for 2 yrs, but ignored them, and by the time she did seek help the cancer had spread to her lung, lymph nodes and nodules in her stomach cavity. Her skin was ulcerated.
She began anti oestrogen tablets which seemed to have some benefit, and after having a pleuro adhesis the breathing problems she had associated with the secondary lung subsided.
The tablets have given her a year she might otherwise not have had.
However, at her last two consultations the consultant has been concerned at the growth of the tumors, and the progression of the ulceration, which is now bleeding at the slightest touch, (such as a shower).
He was pushing to start some palliative chemotherapy (which at her diagnosis we were told would not be an option, nor radiotherapy) but relented to a change of tablets at my mom’s request, followed by a review at 6 weeks.
I was wondering if anyone out there had a similar experience (probably not, my mom is one on her own!!) and could say what the benefit of chemo or radio at this stage would be, and what would be a scenario if she didn’t take it…
Thanks for reading, any comments greatfully recieved.
Jen - I am so sorry you and your family are having to go through this. I can’t exactly answer your questions, but my Mum was diagnosed at the age of 76 and by then it had already spread to her bones. She did not have surgery to remove the lump but was put on Tamoxifen, which worked for some time and then changed to Arimidex, which again worked for a while. She was given short courses of radiotherapy on bone ‘hot spots’ but no chemo. Unfortunately, she had a lot of problems with her bones crumbling. She actually died at the age of 80.
I totally understand how difficult this is for you. I felt so helpless, more so in a way than with my own diagnosis.
I do hope a change of tablets will help your Mum. Good luck to you all.
My mum also has it in her bones, in addition to the lymph nodes around her collar bone, her lung (through the chest wall), her skin, and nodules in her stomach area.
After speaking to the cancer nurses at her hospital yesterday I have found out that the radio would be s good option for her to help aleviate some of the problems associated with the ulceration on her skin.
Chemo I’m not so sure about… I’d hate for her quality of life to be diminished if the “gain” was to be so short…
Thanks for your comments, I think we all feel helpless sometimes.
The change of tablets has not worked. The cancer has grown in the lung and a spot has developed in her liver.
Since I last posted she has had radiotherapy on the ulceration of her skin, which has helped that a little.
And now she has decided to persue a course of chemotherapy - 6 sessions over 18 weeks. Her docotr feels this will delay the onset of more serious symptoms for a few months… out of his estimate prognosis of 18 months.
My mum does not want to recognise this fact at all, and still seems to have it in her head that she can beat it.
I don’t feel the chemotherapy will be worth it - side effects wise - for such a small gain, when she has such a good quality and independancy of life at the moment. Am I being too hard???
Any tips, helps, or comments greatly appreciated. Thanks.
hope you don’t mind me adding to this thread.
I really do understand your concerns, quality of life is important and making the most of your life, however, sometimes Hope is all we have, and as such we grab it with everything we have.
I am in no position to offer advice, however, a frank conversation with your Mum’s Onc, your Mum and yourself of exactly what can the chemo will do for your mum, is it symptom control?, prolonging her life?, and indeed what side effects? the you will both be in a position of making an informed decision.
Mum has had her first chemo session, all seems ok so far… she is so belligerent I doubt she will ever admit any side effects, but I have noticed she has become more breathless, and tires easily.
The chemo is to “delay the onset of more serious symptoms” by a couple of months; it cannot prolong her life, unfortunately she left diagnosis too late for that.
Mum won’t engage in a frank discussion… she does not want to face the truth of her situation at all. Her choice is made - she will take whatever she can in the hope of a miracle. I have to deal with that, but it is hard.
Jen - I think it is great that your Mum feels she can beat this, even if you feel she can’t. I am convinced that it was when my Mum asked if her symptoms would get any better and she was told that they wouldn’t, she gave up and died the next week.
I guess I am one of those horribly pragmatic people - I like to know exactly what I’m dealing with warts and all, and don’t enter into a pessimistic or optomistic state of mind.
I do however appreciate my mum’s right to be as positive as she feels she can be, even if from my point it is unrealistic - as I said she is belligerent enough to not allow or admit to any side effects!
Thanks for your comments though - it’s nice to know there are others out there who understand xxxx
Hi Jen, I am sorry you are in this situation.Its never easy to watch someone we love deal with a terminal illness.Everyone deals with it in their own way too which makes it harder for us to understand.
My own Mum dealt with it by not really admitting (publically anyway) that her lung cancer would kill her. She was a retired nurse so probably knew very well what would happen but chose to carry on with life as normal as long as possible.She bravely went through chemo and rads, like your Mum not admitting to any side effects.
I think their generation is a bit different to ours,they often don’t talk about their feelings like we do.
Its understandable that your Mum wants the treatment offered,its reassuring when you are under treatment even though she understands its only palliative.Remember if she starts to find the side effects too much she can always stop at that point.Maybe just deal with it one chemo at a time?
I think I am trying to say that we need to allow our loved one deal with it in the way that they want but always be there for them.
There is no right or wrong in this.
She is lucky to have a such caring and thoughtful daughter.
Love n hugs
Dot
xxx
Mum has now managed 4/6 treatments, and is still “fine” when anyone asks!
Her hair has thinned, and she has lost some weight, but she still admits to little else.
I have noticed this time that she has been rather breathless - more so than normal, and this is concerning me, esp since the secondary tumour is in her lung.
I’m not sure she would ever admit for it all getting to be a bit too much for her; she is determined to take the full chemo course, on time, without delays.
I have “relaxed” a little I’m letting her do it all her way… and as you suggested I’ll be there for her whenever she chooses.
Thanks for taking the time to comment - it does all help.
xx
I am glad your Mum is managing to get through her treatment. I am sure you are really rather proud of her, the way she is coping. I expect she appreciates you just letting her get on with it her way. I know it is really difficult not to intervene when you think something should be done differently but this is her life and her way of coping. She must know that you will be there if she needs you and so perhaps that enables her to take the harshness of the treatment, by having your support.
Well after thinking that she was coping ok, we discovered this weekend that my mom is doing no such thing and has not entirely been honest with us again.
She has not been eating - I know appetites get suppressed, but she is down to 1/4 of a biscuit, her breathing is appallingly bad, and she has no energy because of both to ba able to do anything.
mum has gone to stay at my brothers for a few days, we thought a change of scenery might perk her up, but it seems a bit more serious than that.
She has refused to seek any medical assistance, and is desperate to continue the chemo - next treatment would be due on Friday - but I can’t see them letting her have it if she is in this state.
We are powerless to do anything until she seeks help for herself, and she is the most stubborn old bird you could come across!
Argh! *Pulls hair out*
Managed to get mum into hospital on the tuesday before her chemo was due last week, and seemingly just in time.
Tests revealed she had a pulmonary embolism, and her heart had gone into AF.
Luckily we got her there in time and she has been treated, blood thinners and beta blockers for the next 6 months at least.
Not sure if they will allow her chemo to continue now.
She has lost a lot of weight and is very frail, but has been allowed home (demand for beds is high!!)
She still refuses help from anywhere, so I am running round like a mad thing, trying to look after her and my 3 small children. Joy!
Jen, is there a hospice anywhere near you that could offer short term respite care? I know older people often think of hospices as somewhere you just go to die, but your mother being looked after professionally for a few days might make a big difference to everyone. I realise that trying to find a place quickly might be very difficult, but I think it might be worth trying. If you collapse you won’t be able to help her, and your children need their mum.
No one wants to stay in a hospital longer than they have to, but it’s a pity that there aren’t convalescent facilities any more.
Unfortunately my mum is that kind of elderly person who refuses any help of any kind, and will not consider being anywhere other than her own home.
We are aiming to get her a panic button alarm thing in case she should have a fall or another breathless episode, and especially since niether I or my brothers can be there 24/7 for her. - If anyone can reccommend one I’d be grateful!
The frustration is her lack of comprehension that, by trying to “not be a bother to anyone” she is actually creating the circumstances that result in us all having to run round after her!
To cap it all, my middle son was hospitalised least thursday after developing a cellulitis infection in his hand, which was tracking up his arm and therefore in need of iv antibiotics. Thankfully he is out now, after a minor op, but it has really highlighted to us that I cannot be everything to everyone at all times.
Oh joy!
Thanks again for your kind words and comments xx
My OH and his brothers had similar problems with their elderly father, although eventually he reached a point where a nursing home was the only solution. He wasn’t happy with that, but if he had accepted some of the earlier suggestions, he might have had an easier transition to being dependent. Like your mum, he didn’t realise that ‘not being a burden’ was actually hard on everyone else.
Sadly I can see my mum going down that same path.
I have tried the “emotional blackmail” of having someone to help me rather than help her, and the by accepting help she gets to stay in her own home longer rather than returning to hospital when she becomes too poorly.
Thanks to your suggestion I have found that we have 2 very good hospices in the area, and should we go down this path again I will look into the feasibility of having a few days “transitional care” there… whether my mom would ever accept it is another matter!
Well mum has been out of hosp now for just over a week, and though she is very frail, she does seem to be coping - that stubborn tenacity she has is working for her again.
It is going to take some time for her to regain her strength and put back the weight she has lost, but each day seems to be a short step in the right direction. She managed 4/6 FEC chemos before her PE and heart problem kicked in.
She had ct scans this week, with a fluid to drink to show up in the stomach (???) and an injection into her vein (???)
Can anyone say what these are to help look for?
She does have secondaries in lung, stomach, bone, lymph and liver…
We get results next Wednesday, when they will also reassess any strategies for treatment - I’m not sure whether she will be advised to continue with her chemo as there were only 2 sessions left and she would have finished them by now had other things not intervened.
In a way, I would be happier if they stop the chemo, and let her enjoy whatever time she might have left, rather than facing another 6 weeks of treatment regimes, and the horridness that goes with it - especially since my mum is not that good at being honest about how much the side effects are affecting her.
The main tumour and main lung secondary also reduced.
No further treatment for the next 3 months, so hopefully mum can recoup properly following the PE and heart failure … and we’ll see what the next 3 months brings.
