Need advice from long time survivors re when to stop scans

[CRguy]

I'm just overwhelmed and afraid because of Traveler and Esk2poo (plus many others who were undertreated, under followed).

They weren't undertreated Diane ..... they were UNDER diagnosed !

I'll make this short sista' 'cos we have exchanged many emails about pet health and my message is ALWAYS the same :
" You WILL miss more for not looking ... than not knowing. "
WHAT is proper looking ???????
You want a CT every week ? = NOT !
You want a CT every 10 years ? = NOT !

SO, your question is VERY very significant, and you have received many appropriate replies ... BUTT ...
do any of them resonate with YOU ??????????
If yes = go with it
If no = more info and input needed

IMO :
You need a good primary care Doc ... who talks WITH YOU ... NOT AT you !
your PCP MUST be wired into the after care of a Stage IV CRC patient ... many are not , so either YOU educate THEM or find a new PCP = WORD !

You may well need to go outside your own comfort zone to get someone who "GETS" you.

Talkin' outside the box here :
WE on this forum have many folks who are not only "veteran" patients and caregivers ... BUTT also have mega medical experiences.

I will only speak for myself = I am one.
When I give "advice" I try to temper it with the mindset of a newbie who has no medical experience ...
BUTT, ultimately I cannot ...
the folks here need all the resources and "attitudes" of folks who have been drivin' the CRC train for many years
without FILTERS and political correctness

IF our lives are on the line, NOTHING less than exemplary is acceptable = WORD !

end mini-rant ...

Find a PCP who will talk WITH you
ask what they recommend
bring it back HERE and we will tweak it for you

JMO

Harmony
CRguy

[radnyc]

MissMolly - Karen, that's one of the most inspiring things I've read on this board since I came on here 7 years ago. Thank you!

Al

[LeonW]

MissMolly - Karen, that's one of the most inspiring things I've read on this board since I came on here 7 years ago. Thank you!

x2 (but have only been here 2 yrs). You made may day.
L

[dianetavegia]

Well said Karen! Thank you for sharing that.

SO I go for my CT today and they'd asked me to arrive 30 minutes early. I was 45 minutes early and someone else had not shown up so that was a quick 10 minute scan. Now I was 1 1/2 hours early for my blood work and the office has NEVER taken me out of turn. Only one patient was there when they unlocked the doors and he was to get chemo, so I got in and out right away BUT while this elderly (younger than me but looked like my grandpa) man and I waited for the office to open he told me 'I was Stage II and after 5 years of CT scans and blood work, Dr. W discharged me to my primary. Now my primary, I THOUGHT, was doing blood work to watch for cancer but I got to feeling bad. Really tired and bad so I told him something's wrong. He sent me for a CT scan and I have two large liver tumors over my veins and my lungs have a lot of tumors in both of them.' He told me how he wished he'd not stopped scans at 5 years and if he had to do it over again, he'd say keep testing for the rest of his life. Then I told him about this concern of mine and how I knew I was going to have this decision pushed on me in 2 weeks.

Perfect timing.

Yesterday I called the ACS and they put me through to an oncology nurse who answers the deeper questions. She researched all their papers and said there is NO criteria for someone 5 years out after a liver resection and maybe that's because so few are cancer free at 5 years. She said only 40% LIVE 5 years and most of them are not DFS. I had not seen those numbers and mentioned to her the paper Jacque found for me earlier in this thread. She was a radiation oncology RN so most of her knowledge is old and aimed at radiation. She was telling me about RFA being the greatest thing........ NOT!

So, if Dr. W pushes me toward the door, I think I know where to go. A doctor who used to treat my husband at the VA has joined a private practice in the building next to the hospital. He always would do anything my husband asked and never seemed rushed or uninterested.

We'll see what he says in 2 weeks. Praying my CEA is normal and my CT scan is all good news. I'll get those results in a few days.

Diane

[dianetavegia]

Sounds like a plan, CR Guy! My thoughts exactly! I know what would make me comfortable and that's 2 scans a year for 2 years minimum (based on the paper Jacques found that I'd lost). At that point, I'd be 10 years post original dx and 7 years post HR. I'd also be 68. I plan on living to be 103, so I'd have to decide at that point what to do.

As of now, I have NO health issues. FBS is 87. BP at my cytoscopy was 110/74. I'm using the 'drink a glass of water just prior to BP to alleviate white coat syndrome'. The week before at the MRU/ MRI with no water, it was 124/74. All my labs are good. I'm 10 lbs over weight but working out at the gym 3 days a week. My Vit D3 is 87 to 100, depending on time of year.

I know I won't remain in such great health until 103, but I want to do everything I can to remain healthy until nothing I do can change age related issues.

I will NOT go gently into that good night!

Diane

[MissMolly]

Diane:
I can appreciate that you want to live a long life.

Personally, I would not choose to live to the advanced age of 103 as you are hoping to achieve. Body parts fail. The body echos with aches and pains. What is simple and easy to accomplish at the age of 50 is less simple and easy at the age of 80.

My mother is 84 years of age and can dance circles around me. My mother has been blessed with excellent health. She has no chronic or acute health conditions. She takes not a single prescription medication. She has no financial concerns and has a gaggle of friends and a devoted husband. Life is good.

I was a former marathon runner, accomplished academic with 3 earned master's degrees. I always ate organic food choices. I have always been of slender body build. And yet, the misfortune of chronic health found me.

As a physical therapist, I was able to guide people to a better state of health and well being. I was always the caregiver in my family, the one who provided ministration and care. And yet I cannot do for myself what Inhave been able to do for others. I cannot "fix" my ailing body. There is no horizon of getting better. There is only further loss. It is a discouraging prospect.

My body is ailing, There is not a single day where I feel well. I exist but I do not live. Live in my body space for a day and you will not be asking to live to be 103 years of hage.

I watch my financial savings earned through years of hard work being slowly depleted by out of pocket medical expenses and ancillary care in an effort to give me comfort with an eye of sadness. I am not traveling or spending my money on a new pair of Ferragomo shoes. This is not how I envisioned my place in life.

The point being: The foundation of a full and good life is good health. Minus good health, life can become much less of a joy.

Life your life now as fully as you can within the remainder deficits that cancer treatments have left you.

You do not know what tomorrow will bring. It may be something other than a cancer recurrence that presents as a health challenge in your coming years.

I certainly never say endocrine failure on my life's radar nor its debilitating effects. All I can do is make the best of a less than good situation.
-karen-

[dianetavegia]

I'm so sorry for all your health problems, Karen. That's just awful.

I come from a long line of people who live to 98 to 103. Both my parents are alive and like your mom.

There's an old song from Pinocchio and I got the words wrong as a child so just kept singing it that way. Jimminy Cricket says 'I'm no fool, no siree. I'm going to live to be 93'. I remembered it as 103 so have used that number for 60 plus years. My Daddy is 90 and runs the community vegetable garden that grows food for low income families plus he walks his dog and does his own yard work. My mother is 85 and leaving for Europe in 13 days and will be gone 41 days this trip. She goes two to four times a year and doesn't use a tour guide!

I don't want to be like Traveler or others and let a doctor push me to the side either out of ignorance or because I don't bring in enough money to his practice. I stupidly caused my own colon cancer. I refused a screening colonoscopy because I was too 'lady like'...... so at 58 got colon cancer instead.

I will be hyper vigilant now.

Diane