Colon cancer screening -- yes or no?
I emailed his doctor to ask if there's another option. The doctor's assistant said she has mailed him another kit -- so frustrating because now I have to try to get to the mail first or I'm in for another round of his stressing over this. The doctor's assistant said the only other option would be a colonoscopy, which I know would be just as stressful for him. (He becomes agitated any time we go to the doctor's.)
I've been struggling with the question of whether I should have him screened at all. If there was an issue, I'm not sure that I could put him through the stress of further procedures. We're at stage 5 with the Alzheimer's so I know he could still have several more years with us. I'm conflicted as to what is the right thing to do.
I'm wondering if anyone else has had to make a decision regarding the screening kit.
Comments
-
This doctor and the assistant sound absolutely clueless. Throw it away and forget about it. And honestly i would think hard about finding another doctor who knows more about dementia. Screening tests are for those without a terminal illness. So sorry they are putting you through this, it's ridiculous. Infuriates me.
welcome to the forum by the way.
6 -
My SIL with dementia got one of those in the mail by her doctor. She was so upset and said she would die before letting anyone help her with it and she didn't know how to do it herself. I told her it was meant to do only if you wanted to. She threw it away.
1 -
Life expectancy in stage 5, based on DBAT is 3-6ish years.
As with any routine screening or test, what would you do with the information? If kit was positive, would you escalate to a colonoscopy? If the colonoscopy was positive, would you move forward with treatment? Keeping in mind that he already struggles with medical appointments and that anesthesia can cause progression of the Alzheimer's, it might be kinder to not know.
HB5 -
I would toss the tests, and find a good fiblet such as that test was faulty and we're waiting on a new one. Or the Doctor ordered a different kind that will be easier, should arrive next month. Rinse and repeat until he forgets about it. The dementia is already an incurable terminal illness and likely to affect his lifespan before colon cancer, which is known to usually be a slow moving one. And it doesn't sound like even if he was positive for it you could move forward with treatment. Some doctors are clueless about dementia and will throw everything at the patient that they would for a cognitively normal person.
3 -
I would not do any type of screening procedure. It’s a waste of resources and stress on both of you. So many doctors can’t see the forest for the trees. This disease is not curable ( yet) and what would you do if the screening was positive. I can only imagine having to help him prep for a colonoscopy, it’s bad enough without dementia.
2 -
if he is so focused on the test and you can’t get it away from him, let him take it and you tell him you will get it in the mail and then toss it. My DH gets hyper focused on this medical stuff.
1 -
I would tell him you’ll mail it. I would throw it away. Tell the doctor you and he discussed it and there’s no need for the test. He’s not going to be able to handle the colonoscopy or any cancer treatment if the tests were positive. Why would the doctor want to perform preventative testing when his quality of life is so poor and his prognosis is fatal? If your spouse has not filled out a DNR form, now is the time to get one done. One that specifies comfort measures only. If your spouse hasn’t given you medical power of attorney, now is the time for that too.
2 -
Thanks for this discussion. It's been about 7yrs since DB had a colonoscopy, and new VA doc asked if he wanted one. He said to go ahead and order it. Re the above "what's the point" paired with folks with dementia not doing well with anesthesia I'll suggest he revisit that decision.
1 -
Hi and welcome. I declined that screening last year for my husband. Once I truly grasped that my husband has dementia and is not going to recover, I embraced the idea of comfort care for him. If it relieves a problem or pain without causing unnecessary difficulty for him, I would pursue it. Otherwise it was off the table. Major dental surgery: no. Colonoscopy: no. TAVR procedure for his stenotic heart valve: hell no (and let's skip the stress test while we're at it). It's hard to get in that mindset, but once I thought about what I would hope for if it were me, it became a little easier. Hang in there.
5 -
What QBC and Jeanne C. said. That's a no for me. I actually had a conversation with DH's former long time PCP when they kept pushing things like this on DH, to ask him "WHY would we do that?". It was an enlightening discussion for us both. I realized he was on auto-pilot with the testing and whatzit calendar of things to do, and bill for. And he learned that lay people, perhaps especially spouse caregivers are not ignorant people and perhaps should be consulted, especially when HIPAA is in place. We can be pretty good thinkers when it comes to determining what makes sense for our PWD LOs, who we are with 24/7.
Until I pointed out the implications, this highly credential MD - a practitioner and senior professor - really hadn't processed that the 2 year + Alz diagnosis from his expert neuro colleagues (which he was fully aware of, and had access to from the exploration stages) meant palliative care was in order when elective procedures came up. Hadn't really even occurred to him. We switched to a gerontologist as the lead doc right about then and had much more realistic support and recommendations ever since.
1 -
Having been a primary care internist for 30+ years i have to protest that we're not all that stupid. Of course you always tailor screening and treatment recommendations to the rest of the person's condition. Geez. That's not rocket science. But i used to get sanction letters from the MCO's because i wasn't doing pap smears on women with complete hysterectomy for benign reasons (hello, they don't have a cervix). I also once had to gently tell a woman with terminal lung cancer that no, she didn't need to worry about having a mammogram.
6 -
We took care of the DNR and power of attorneys as soon as we got the diagnosis, when he was still able to make decisions. Before the diagnosis, he was diligent about preventive screenings. But as everyone here has noted, the question is what would I do about a positive result, and I agree, it would be too much for him if we did further tests or treatment.
1 -
I never thought about switching him to a gerontologist. That's an excellent idea. Thanks.
1 -
This is just food for thought. There is a famous doctor who stated he personalky would decline treatment for any serious illness after age seventy-five. In his thinking, the trouble of the treatments is not worth the potential few months added longevity. I'm not recommending this, but it is something to think about.
Iris
4 -
Ironically, my husband visited his PCP office for a BP check to get his medicine refilled and a week later that colon screening test arrived. He was diagnosed with FTD just a few weeks after and I don't see the point in going to the trouble of completing it for all the reasons that were shared here. I'm so glad you posted because I keep seeing that box with the kit in it and wondering what to do. Cologuard has been calling DH non-stop. Ugh.
1 -
Hey M1 - you are preaching to the choir. And I definitely wasn't including you or all medical personnel. But our collective experiences here say there are many unfortunately, who miss the boat in this regard. I think it is actually the system and my MD friends have led to that conclusion. Financial policies over patient safety and more pressure on the medical pros to toe a very rigid line. AI is poised to make it even tougher.
No need to protest my earlier complaints about our experience with DH's longtime PCP. We know there are wise and compassionate professionals in all fields and specializations. But my experience and that of many others, says the system has some MAJOR blind spots especially with regard to dementia diagnosis and subsequent support. I can stand my by remarks that this longtime PCP missed the forest for the trees for years. He was either clueless (I think it was elitism and dismissiveness that either my DH or I had any input that was worthy of his consideration, frankly). Or the alternative is, he knew better and deliberately ignored what was best to promote what would provide the greater income stream. I don't think that was the case; hopefully not as that would be even worse. I will say his increasing willingness to assume that my input was not professionally grounded (and his comfort level ignoring other professional records and common sense, silo-ing his focus to not even think through the implications of findings and reports from the memory clinic of his own teaching hospital), was a real disservice to my DH (and me as spouse/caregiver/POA, etc) in this process.
e.g. As I have shared here before, the last straw was this doc's refusal to prescribe an antibiotic despite multiple calls and pages and portal requests over several days because DH was asymptomatic with a recurring silent UTI at the time. While that (former) PCP admonished me for not scheduling a colonoscopy (no history and no reason given terminal status anyway - Alz and 80 yrs old) this doc was at that very time ignoring my concerns and insight about silent UTIs. DH would not leave the house to get a culture, but test strip verified well enough, and our history of a couple of prior UTIs said this was the issue. But because there was no odor, nor painful urination as far as I could tell, he blew off the information I shared about behaviors and how UTIs are different for PWDs.
This allowed escalation in behaviors (and misery) for days while I tried my best to keep DH from going totally off the rails. This endangered both DH and me, cost me some part time work that feeds us because DH could not be left alone even briefly, and let things escalate to the point of police intervention to help get a wanderer back home. Up all night/s, pee literally everywhere, and led to a follow up ER transport and hospital admission from which he was discharged almost immediately after UTI was discovered and treatment started (antibiotic like I had been seeking for days). It was a fiasco and for no reason other than disregarding the caregiver's insights which risked patient safety to a point that makes me disgusted all over again as I recount this.
DH could not advocate or communicate for himself. My advocacy (with HIPAA release on file for years), was disregarded. Again, because there was literally no reason to deny my repeated requests to address DH's situation one way or another — letting it ride could have resulted in sepsis as you know. And days and days of discomfort and over the top dementia escalation was cruel and unnecessary. SMH even now. Its not like I was asking for a dangerous or risky drug that might kill (an already terminally ill) man, or a narcotic or controlled substance that maybe I was selling out of the trunk of my car, lol. Dude had no clue and he was the medical expert in his mind so why was I even bothering him. He was stumped when I asked WHY, would we disregard his escalation and assume DH's confusion is "a known symptom of dementia" (he actually pushed back on what I was describing by day 3 as if I was an idiot).
Caregivers know the difference between our PWD LOs baseline and escalation. When doc diverted to noting I'd neglected to schedule DH's colonoscopy I asked him WHY would anything other than palliative care be in order given his current diagnosis and stage? He was stumped. So after this drama was all over, we made a switch so I would not have to deal with denial on the part of his lead medical professional, the key to all other referrals and services, his PCP. Dementia and caregiving are hard enough without that.
The new PCP we selected, a geriatrician (even their nurse practitioner), brought expertise that made life SO much better. They reinforced palliative care and shortly afterward encouraged a hospice eval which set us on the path we currently are on. Much more stable through stages 5-6 and now early 7. Still a roller coaster with his condition and fairly swift progression, but the highs and lows have smoothed out and the volatile moments are fewer and further between. That's a win.
1 -
SORRY that was such a book! @M1 I am posting this in a shorter comment so it does not get lost. The expertise you, Iris, Housefinch, Marta, Mint and several others provide here, is priceless. You do not diagnose and practice here, but generously share your professional knowledge and also apply common sense.
I could jump for joy AND cry in gratitude for this precious help which is unfortunately not widely available on the frontline in the medical field where dementias are concerned. All the related things that could come with dementia, are things we often have to come here for help with - to learn from each other and those caregivers who have dealt with the issues we are facing. You respiratory specialists and MDs have been such a blessing to me and my DH personally. Let me say that loud and clear, again, for the folks in the back!
It was you, my friend, @M1 who pointed us in the right direction when DH had balanitis at the end of the saga described above. His new team listened to me, though they had never seen a case, and one said "only in her medical textbook". Thank goodness I had switched to a new team and they listened to me as primary caregiver. But I listened to you and would never, ever have known where to look or what was happening to him, when that condition developed in less than 24 hrs into something that would have required a very sensitive surgery in just 1 more day. Just priceless. We need more medical pros with the knowledge and disposition as you all.
THANK YOU!!!
0 -
No BW I am as frustrated as you are that these abuses and lapses in judgement are so common. One of the reasons why I was not unhappy to leave practice when i did—it's just a crying shame, really. I don't know how we ever get back to any system that supports common sense more and that is not driven by third party insurance. Medicine is not a market economy and never was, never should be IMHO. There are no substitutes for thoughtful clinicians and open communication. Very easy to be critical, but not easy to come up with workable answers I'm afraid. Sooo many variables.
1 -
This discussion makes me feel really good about our internist. She understands that further health screening is no longer indicated. She also started my DW on seroquel when things were getting rough and then made referral to geriatric pyschiatrist for ongoing management.
1 -
Block their phone number on his phone if you can and toss the screening test.
2 -
Great idea! Thank you @trottingalong! :)
1
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 456 Living With Alzheimer's or Dementia
- 228 I Am Living With Alzheimer's or Other Dementia
- 228 I Am Living With Younger Onset Alzheimer's
- 13.7K Supporting Someone Living with Dementia
- 5.1K I Am a Caregiver (General Topics)
- 6.6K Caring For a Spouse or Partner
- 1.7K Caring for a Parent
- 143 Caring Long Distance
- 102 Supporting Those Who Have Lost Someone
- 10 Discusiones en Español
- 2 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 8 Prestación de Cuidado
- 1 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help