Lack of mobility and lump in breast

[susanandliam]

Hi,

Mum has Alzheimers is 90 years old and her mobility has taken a tumble the last few weeks. She used to whip around with her walking frame and for no reason that I can see is now barely able to walk her brain doesn't seem to commute to her feet how to move.. The care home have ruled out a UTI and her bloods are clear.

Supposed to be having a meeting with a Dementia Liason Nurse to see if it would be of use for Mum to have a therapist visit her or whether its the inevitable decline of alzheimers and nothing will help, but three weeks later I'm still trying to get a meeting with her as she's semi-retired..

The other thing is Mum has complained for weeks of having a pain in her right arm/shoulder but when the dr/nurse practitioner visited her they said she says she's fine and was waving her arms in the air.

The latest is that the Care Home have noticed a lump on Mu msright breast on Sunday (which may have been causing this problem in her arm and shoulder) They assured me the nurse practitioner would visit and look at Mum today and they would phone me. Having visited tonight the home informed me that the nurse practitioner was on holiday and hadn't visited and when they rang the drs they were told it can wait until next week. When I said this isn't good enough the carer said but what will you want to do if it is cancer. But to my mind it's not what I would/could do it's that the doctors don't want to be bothered with my Mum. I want the doctor to come out and refer Mum for either a scan or whatever else needs to be done to determine whether the lump is a cyst or something else.

I was so upset that the home hadn't phoned me and now I will have to ring the dr tomorrow to insist that they visit Mum or I will take her to the surgery.

Am I wrong, I'm sick of this attitude that the drs don't seem to be bothered and am I right in thinking that a dr would have to refer her for a scan?

The other thing tonight was that while there tonight Mum needed the loo we told one member of staff who was having a break the other was doing paperwork, who radioed for assistance. We waited for ages with Mum looking more and more desperate in the end myself and my husband struggled to get her to the toilet just in time although she had slightly soiled her pants. Two staff turned up once we got her on the toilet and were lovely. But it distresses me to think on other evenings when Mum will be sitting there needing the toilet with no one to assist her.

 

[Dove from above]

Hi,

Mum has Alzheimers is 90 years old and her mobility has taken a tumble the last few weeks. She used to whip around with her walking frame and for no reason that I can see is now barely able to walk her brain doesn't seem to commute to her feet how to move.. The care home have ruled out a UTI and her bloods are clear.

Supposed to be having a meeting with a Dementia Liason Nurse to see if it would be of use for Mum to have a therapist visit her or whether its the inevitable decline of alzheimers and nothing will help, but three weeks later I'm still trying to get a meeting with her as she's semi-retired..

The other thing is Mum has complained for weeks of having a pain in her right arm/shoulder but when the dr/nurse practitioner visited her they said she says she's fine and was waving her arms in the air.

The latest is that the Care Home have noticed a lump on Mu msright breast on Sunday (which may have been causing this problem in her arm and shoulder) They assured me the nurse practitioner would visit and look at Mum today and they would phone me. Having visited tonight the home informed me that the nurse practitioner was on holiday and hadn't visited and when they rang the drs they were told it can wait until next week. When I said this isn't good enough the carer said but what will you want to do if it is cancer. But to my mind it's not what I would/could do it's that the doctors don't want to be bothered with my Mum. I want the doctor to come out and refer Mum for either a scan or whatever else needs to be done to determine whether the lump is a cyst or something else.

I was so upset that the home hadn't phoned me and now I will have to ring the dr tomorrow to insist that they visit Mum or I will take her to the surgery.

Am I wrong, I'm sick of this attitude that the drs don't seem to be bothered and am I right in thinking that a dr would have to refer her for a scan?

The other thing tonight was that while there tonight Mum needed the loo we told one member of staff who was having a break the other was doing paperwork, who radioed for assistance. We waited for ages with Mum looking more and more desperate in the end myself and my husband struggled to get her to the toilet just in time although she had slightly soiled her pants. Two staff turned up once we got her on the toilet and were lovely. But it distresses me to think on other evenings when Mum will be sitting there needing the toilet with no one to assist her.

 

[Dove from above]

I'm so sorry to hear your not getting the response and support you and your mum need and deserve, It's such a scary time for you.Stay strong.

 

[Beate]

I know that you probably don't want to hear this but your Mum is 90 years old and will probably die from dementia before any cancer could kill her. It isn't about not being bothered but about weighing up pros and cons. Would you really want her to go through surgery and/or chemo/radiotherapy at that age in her condition? Sometimes we have to stop and think why we want something investigated - is it for them or is it for us so we think we have done everything we could?

 

[Louise7]

You are understandingly concerned about the lump but from what you have said it's not a case of the GP not being bothered as they have made an appointment for next week. That doesn't mean that they are not taking the matter seriously, or won't bother to treat the lump. It's important that the lump is checked out, and the first thing that will be done is a physical examination (rather than a scan) and depending on the outcome of that the Dr will decide whether a scan is needed or not. I appreciate that this is a very worrying time for you (my sister had breast cancer) but things will become clearer after the appointment next week so try not to worry too much prior to the lump being assessed. I hope there is a positive outcome.

You say that the staff are lovely but are worried that there will be no one there to assist your Mum when she needs the toilet. From experience, there will be times when a member of care staff may not be immediately available but from what you have said it's not a case of them being uncaring or deliberately avoiding your Mum's toilet needs. I wouldn't be overly concerned if this is just a 'one off' rather than regular occurrence but probably best to discuss this with the manager if you feel worried that your Mum isn't receiving the care that she needs.

 

[Lawson58]

Sadly, I have to agree with Beate. I have a friend whose mother is in a similar situation to yours, in her nineties and suspected bowel cancer and in early stages of Alzheimer's.

This lady is still living independently and she along with her family has decided not to have it investigated and they will do what is necessary to keep her comfortable. There is a history of cancer in the family so the probability of cancer is high.

I wonder perhaps if your mum might not want all the tests and treatment which could be a prolonged and uncomfortable process and maybe some of the side effects could be quite devastating for her.

 

[canary]

Once dementia is advanced enough to necessitate being in a care home, scans can become quite scary for the PWD

When mum had a stroke the doctor talked to me about having a doppler scan. This is the normal procedure after a stroke, but as he (quite rightly) said - Would she be able to keep very still while the test was being done? Would she not understand and get distressed? And even if she could tolerate the scan was the treatment (stents) in her best interest? I decided to leave it alone; she had neither scan nor stents and was sent back to her care home.

I do hope it turns out to be something simple like a cyst, but if its not, sometimes you have to look at the bigger picture

 

[jugglingmum]

I found a lump a while back(it was a cyst, very common at my pre menopausal age), and phoned the GP, and appointment the next day(none for 2 weeks - explained issue and they released one), and hospital appt within 2 weeks, which ties into the NHS published cancer protocol.

At the hospital the first route would normally have been a mammogram, but I'd had one in last 6 months (NHS trial in 47 to 49 year olds to extend mammograms) so I had an ultrasound to determine it was a cyst. I don't think there is any other way for a definitive result. The ultrasound was OK, as most of you are aware mammograms aren't very pleasant.

Having said that I agree with Beate that there is only so much intervention that I would want for my parent with dementia especially given the effect of advancing the dementia that a general anaesthetic can have. I have read on TP of breast cancer ops being undertaken for a PWD as the pain from the tumour(which had become an open wound) was so severe it was in the persons best interests, but these ops do involve a considerable recovery time and do need to be weighed up as to what is optimum for the PWD.

 

[Lawson58]

I found a lump a while back(it was a cyst, very common at my pre menopausal age), and phoned the GP, and appointment the next day(none for 2 weeks - explained issue and they released one), and hospital appt within 2 weeks, which ties into the NHS published cancer protocol.

At the hospital the first route would normally have been a mammogram, but I'd had one in last 6 months (NHS trial in 47 to 49 year olds to extend mammograms) so I had an ultrasound to determine it was a cyst. I don't think there is any other way for a definitive result. The ultrasound was OK, as most of you are aware mammograms aren't very pleasant.

Having said that I agree with Beate that there is only so much intervention that I would want for my parent with dementia especially given the effect of advancing the dementia that a general anaesthetic can have. I have read on TP of breast cancer ops being undertaken for a PWD as the pain from the tumour(which had become an open wound) was so severe it was in the persons best interests, but these ops do involve a considerable recovery time and do need to be weighed up as to what is optimum for the PWD.

I too have had lumps, one was many years ago and was removed and turned out to be a cyst. The second lump was found during a mammogram and was immediately scanned. Third step was a biopsy which was sent off to pathology and turned out to be a fibroid adenoma which is still there. The biopsy wasn't too bad but an older PWD might find it a little worrying. And sore for a couple of days afterwards.

 

[susanandliam]

I'm so sorry to hear your not getting the response and support you and your mum need and deserve, It's such a scary time for you.Stay strong.

Thank you x

 

[susanandliam]

Thank you everyone for your replies.

I called the surgery and asked for a doctor to visit Mum today which they did. The dr rang me to say that she doesn't like the look of the lump. I'm taking Mum to have an ultrasound next week to ascertain what it is.

I don't have any intention of putting Mum through any invasive treatment or have her poked or prodded about as she shouldn't have to put up with anything else she has enough to contend with.

All I want is to make sure that she is as comfortable and as pain free as possible. The doctor did mention the possibility of giving Mum a tablet called tamoxifen (think that's the spelling) does anyone have any experience of this medication please as in pros and cons?

 

[Spamar]

I think it’s usually for post op, when it seems to stop any regrowth. My cousin had it for 5 years, but i understand post op patients now have it for 10 years. So it should halt or at least slow the tumour.

 

[Moggymad]

Thank you everyone for your replies.

I called the surgery and asked for a doctor to visit Mum today which they did. The dr rang me to say that she doesn't like the look of the lump. I'm taking Mum to have an ultrasound next week to ascertain what it is.

I don't have any intention of putting Mum through any invasive treatment or have her poked or prodded about as she shouldn't have to put up with anything else she has enough to contend with.

All I want is to make sure that she is as comfortable and as pain free as possible. The doctor did mention the possibility of giving Mum a tablet called tamoxifen (think that's the spelling) does anyone have any experience of this medication please as in pros and cons?

Hi @susanandliam just wanted to say how sorry I am that you & your mum are having to face this. We are dealing with a similar situation in that my mum with middle to late Alzheimers has been referred to the hospital to investigate possible bladder cancer. Have had several conversations with the doc as to how far to go with this & know it will not be possible to do any ct scans. Unfortunately mum is losing a fair bit of blood so something has to be done to stem that but we will only allow what we think she can cope with. For me, I want to know what we are dealing with so I can prepare for what's to come & more importantly do my utmost to ensure mum gets all the care/pain relief that she may need, especially as she's not too good at expressing where her pain is or how she feels. Regards the toilet situation, I also find everytime I see mum at the carehome she needs toileting & as I'm with her I always do it. Mum is double incontinent so it's never a pleasant job but it mystifies me no matter when I go it always happens when I get there so feel obliged to deal with it.
My best wishes to you, I hope for a happy outcome for both of us.X

 

[susanandliam]

Hi @susanandliam just wanted to say how sorry I am that you & your mum are having to face this. We are dealing with a similar situation in that my mum with middle to late Alzheimers has been referred to the hospital to investigate possible bladder cancer. Have had several conversations with the doc as to how far to go with this & know it will not be possible to do any ct scans. Unfortunately mum is losing a fair bit of blood so something has to be done to stem that but we will only allow what we think she can cope with. For me, I want to know what we are dealing with so I can prepare for what's to come & more importantly do my utmost to ensure mum gets all the care/pain relief that she may need, especially as she's not too good at expressing where her pain is or how she feels. Regards the toilet situation, I also find everytime I see mum at the carehome she needs toileting & as I'm with her I always do it. Mum is double incontinent so it's never a pleasant job but it mystifies me no matter when I go it always happens when I get there so feel obliged to deal with it.
My best wishes to you, I hope for a happy outcome for both of us.X

Thank you for your kind response, my thoughts are with you

 

[susanandliam]

Well we went to the hospital and after an examination and ultrasound the it was confirmed that Mum actually has cancer in both breasts and that it would be best if they carried out a biopsy (but not a mammogram) to enable them to advice on what sort of tablet medication if any Mum can take be it an oestrogen type one etc.

Mum with me sitting holding her hands and talking to her was fine during the process and four days later is thankfully still fine.

I think it will be a case of weighing up once we have the results later this week as to whether any side effects of the medication outweigh any advantages to Mum. As long as she can be painfree and as comfortable as possible that's all I'm interested in. I certainly don't want her to suffer any more if the medication makes her feel sick as she has and is going through enough and she wont be going back for any more tests

The specialist is going to discuss the tablet options with me later this week but does anyone have experience of what the side effects of the tablets given for cancer are for someone who already has alzheimers?

I'm now feeling absolutely dreadful in myself again, sick, can't sleep, irritable, worn out not sure that I can face work again tomorrow, just want to be with Mum.

 

[Moggymad]

So very sorry to read your update @susanandliam. I don't have any knowledge of the question you've asked. May be worth a search on this website to see if there are any previous threads on this. My thoughts are with you too X

 

[Shedrech]

hi @susanandliam
sorry to read of the test results
and well done (sorry not the best wording) on getting your mum through the biopsy
I seem to remember a thread on this topic before, so it may come up in a search
I had a mastectomy and then took tamoxifen for some years which didn't make me feel sick, no side effects at all - so it may be that whatever meds are prescribed won't make your mum feel ill in any way, I hope so

 

[susanandliam]

So very sorry to read your update @susanandliam. I don't have any knowledge of the question you've asked. May be worth a search on this website to see if there are any previous threads on this. My thoughts are with you too X

Thank you x

 

[susanandliam]

hi @susanandliam
sorry to read of the test results
and well done (sorry not the best wording) on getting your mum through the biopsy
I seem to remember a thread on this topic before, so it may come up in a search
I had a mastectomy and then took tamoxifen for some years which didn't make me feel sick, no side effects at all - so it may be that whatever meds are prescribed won't make your mum feel ill in any way, I hope so

Thank you x

 

[silkiest]

I remember patients complaining of mood swings and indigestion when nursing. I never experienced anyone with dementia having treatment so couldn't comment on that. It may be worth asking the specialist how common mood swings are and how this is likely to interact with her dementia