Cancer and other health problems now

RunningWorried76

LO (age 78) is going on 3 years now since officially diagnosed with vascular-based dementia (and possibly AD). Realistically probably 4-5 years since she started showing early signs (interesting how in hindsight you see all the signs more clearly). I would say she is at stage 5 going into 6 now. I've been taking care of her for 2 years now after another family member could no longer handle it.

Anyway, recent doctor visits and tests show she now also has significant osteoporosis and more importantly, a lymphoma. Meeting with oncology next week to discuss options/future. So many mixed emotions and thoughts. And questions. Obviously will have more info once we get a biopsy and official oncology diagnosis.

Just curious if anyone else has gone through their PWD getting cancer?

WhatNow?

Yes I did with my Mom.  We actually found out she had stage IV breast cancer about the same time we got her official Alzheimer's diagnosis.  She was 72.  Looking back now, we were so lucky it turned out the way that it did, since that was the real start of Mom living with us.  As far as dementia stages she was probably late stage 4 early 5 when all this happened.   We were lucky that the recommendation for her cancer was no surgery, and because of the type, no chemo.  They only prescribed her a daily pill to block estrogen and then a bone shot every 3 months since it had spread to her skull.  Even then, sometime getting her to take her pill was almost too much.  We still do take her to the oncologist every 3 months for labs and her bone shot.  So far we are still able to manage that, but it is getting harder.   She's probably now a stage 6 and in MC.  We just did her last re-staging in January and I think that will probably be the last one, because it is getting harder for her to listen and follow directions and to lie still for the test.  I felt like we should do the re-staging so we may have a better insight to life expectancy and how things are going.  

At her diagnosis 3 years ago,  I probably would have listened to the Dr if they had recommended surgery or chemo because I really had no clue how far along in her dementia she was.  She was living alone right up until that point.  Knowing what I now know, I wouldn't do surgery (can't imagine how hard after care would be) and I don't think I would put her or us through chemo. 

We aren't treating her cancer so much to keep her alive, but because I've heard cancer in the bones is very painful and we want to try to prevent her from having pain as much as we can.  

We have already mentioned to her oncologist that we won't be going any further with her treatment once her cancer starts progressing again, but so far the little that we have been doing is still working.

Good luck!  It is a shock to the system for sure.  Just make sure to ask a lot of questions and if at all possible take time to digest what is said/recommended.  You only know what is right to do for your and your LO....but when your LO has a dementia diagnosis it does add to the complexity of making it through treatment and possibly even how much you're willing to do..at least it did for us.

M1

RW, my partner has a stage 4 but indolent lymphoma that predated her dementia by 2 years or so (lymphoma diagnosed fall 2011, dementia signs showed up late 2013/early 2014).  She is now stage 5 with her dementia.  The lymphoma has waxed and waned, and has not needed treatment yet.  If/when it recurs or transforms (this is the kind that is indolent but never curable), we would not pursue treatment--joint decision from way back.

Lymphomas vary a lot.  There are some that are more aggressive but are curable, and (oddly) the indolent ones are not curable.   There are also some newer immunotherapies that are not nearly as toxic as some of the older therapies.  So there are lots of variables.  But at stage 5-6 dementia, I think you are going to have to have a careful conversation with the oncologist about what's worth it and what's not.  I would be very frank about the dementia.   It could be that no treatment is the way to go.  I'm so sorry, I do know what a hard decision it is.  Keep us posted.

harshedbuzz

Running Worried-

On the osteoporosis. The medications to treat often come with significant and unpleasant side effects, so given her terminal illness and limited life span, I might not elect to treat that especially if she can not reliably report how she feels.

On the cancer, this one is tougher. More information may bring clarity. Sometimes the more humane option is to engage hospice and not treat the cancer.

My dad had a recurrence of prostate cancer diagnosed weeks before his dementia diagnosis. Dad's original Gleason score was such that watchful waiting was not appropriate, so Androgen Deprivation Therapy was started in hopes it would keep the cancer out of his bones. After dad was diagnosed with stage 5 mixed dementia and mom assumed decision-making, which she deferred mostly to me, we elected to continue the treatment on the because-

1. Dad had elected aggressive treatment when he was making the call

2. Treatment was not particularly onerous for this situation- it's a long-acting injection of Lupron done in the urologist's office with mild hot flashes being the only noticeable side effect short term. 

3. Dad was very aggressive in the stages 4-5 when he had enough on the ball to realize he was experiencing a cognitive shift, knew he'd been diagnosed and was losing his independence. He also became stuck on topics of a sexual nature that were unseemly and illegal. I hate to admit that I hoped flushing whatever testosterone was in his system would dial back these aspects of his presentation of dementia. It didn't- but it was worth the jab, as it were.

That said, I have a dear friend who made a very different choice for her mom. FM decided to skip routine mammography when she turned 80. She told her DD she'd had friends and family treated for breast cancer and she wanted no parts of it for herself at this age. She did develop breast cancer around age 90; by this point she was in stage 5 dementia. Her PCP treated symptoms and they brought in hospice and wound care and her mom died at home in around stage 6ish. 

HB