Is ignorance bliss?

A renowned medical oncologist, George Sledge, said this of metastatic cancer: “...quantity has a quality all its own. Size kills.“

It's better to treat mets early; you could be a “super responder". And even if not, I would think that early detection would improve quality of life. See here: http://ascopubs.org/doi/full/10.1200/JOP.2015.008953

I would want to know and get started with treatment. I had bone and CT scans following dx, and have been NED for many years. Unless symptomatic, I wouldn't want to go through those scans again, with all the accompanying radiation, just to "check."

Lita, I am facing this right now. I am stage IIA and have completed surgery and chemo and am on an AI. For some reason not explained to me my original MO ordered both CT and bone scans last summer prior to chemo. This was not in accordance with guidelines as I understand it. CT found small abnormalities in one lung and liver. At my age both of these "symptoms" are common for benign conditions but of course this put me on a schedule for repeat checkups. The one at 6 mos. showed liver the same but the lung "spot" was 1 mm larger which the radiologist stated could well be just the way the camera was positioned. But never the less a second follow up scan was ordered for this coming August. I don't want it. I have no symptoms of cancer in my lung and from the beginning the risk of a state II breast cancer patient to have lung mets was 1.3%. Yes that's right 1.3% risk of mets but a 30% risk of a false positive. This is why the guidelines say no CT for patients like me: it starts you on a merry-go-round you can't easily get off for a questionable benefit and definite risk from all the radiation. I don't want the August CT and will discuss it with my current MO later this month. Unless he can show me studies that prove early lung mets can treated without major life quality detriment, I will decline the August CT. Polly

Polly it might also depend on what kind of BC you have? ER positive, or TNBC which is more aggressive, or one of the others.. Lung cancer does not have a good survival rate. And statistics may not apply to an individual. How big are the abnormalities in the first place? Also what grade are you? Did you have the chemo because of the lung and liver? I just don’t think you’ve provided enough information. Why not fill out your profile?

The oncologist I had in WI said that survival rates aren't much different with a wait on finding mets...

For me personally, I would rather be in ignorant bliss. My reasons are that I'm a worrier. If I knew I had mets, my quality of life from concern would probably be horrible.

I'm of the opinion that sometimes waiting to know bad news isn't the worst way to end my life...because the news itself would doom me mentally and there is no rhyme or reason as to mets would be treatable, prolong-able or faster death. That's just me. Different if I am uncomfortable, symptomatic, etc...that is quality of life too. My onco in WI said I think differently than most of his patients did so anyway, that's my share.

I would rather know than not know if I had mets. But, I'm also aware of how scans can produce false positives, so I've never insisted on scans if I'm asymptomatic. Just following the two week rule -- if I have an ache or pain that goes away within two weeks, I don't tell my MO. If I do, I'll tell her.

For me, ignorance is NOT bliss. I am quite pragmatic, so I will always come down on the side of knowing, rather than not knowing. I feel I'm in control when I know what's going on. Thankfully, I am able to compartmentalize my worries, so I don't have to get them all out at the same time. While I'm worrying about DHs leg wound that's not healing, I am not also worrying about my son's untreated bipolar disorder or my daughter's autoimmune disease. One worry at a time.

I did get lymphedema after my surgeon promised me I wouldn’t. But it was due to radiation and most likely because I wasn’t healed enough when radiation started. Grrr. Also had to have three surgeries, two for margins on DCIS. So much for my expert surgeon.

I wish I didn’t know. My life has been turned upside down and my emotional state upended for knowledge but no treatment. I feel just fine, I want to live my life but have this cloud hanging over my head and it’s exhausting.

My mets were discovered completely by accident about 18 months ago. I had two tiny spots - one rib and my sternum. Treatment is palliative not curative and because I’m TN I don’t have the option of Tamoxifen or AIs so for now, I’ve chosen no treatment. My MO scans every three months to watch for progression. So every three months I have a week of incredible anxiety, mostly to learn we’re in the same spot as three months prior. 3 months ago we found a new spot on another rib so I now have progression. I have minimal symptoms - some pain, easily managed, but nothing else. Whatever is happening with me is (for now) pretty slow moving.

I used to think I’d want to know as early as possible to attack it and kick it’s ass. I wish we’d never found this, I wish I was living my life without the knowledge of these small spots that are making no impact on my physical health, but taking one heck of a toll on my spirit. In 18 months I’ve lost two local friends to this disease. I know how fast things can turn and how quickly the end can come, and I get scared.

It’s just how I feel, YMMV.

I know what you mean Nancy, once it’s upon you things can move quickly and that is so scary. Every three months is a lot of radiation too. I’m sorry to hear that. I used to wonder if we didn’t know maybe it would go away by itself and we’d never know that we had it. But once I found a big lump waiting around did’nt seem a good idea. I was in the clinic in two days. By the end of the week I had a biopsy, CT, Pet, MRI, US and blood tests. They spared me that stereo thingy.

Sorry Polly I didn’t see the AI reference. Are these the guidelines you’re talking about?

https://www.nccn.org/patients/guidelines/stage_iv_...

Hello NancyHB, what does TN stand for? Thanks!

I would want to know. But yet I'm also scared to find out.

With recent advances in genomic testing of tumors, by the time anyone's metastatic disease progresses to the point that it is causing clinical problems, perhaps there will be a therapy to target the specific mutation responsible.

Instead of generalized 'shot gun' style chemo which kills every rapidly dividing cell it finds, you could have a sniper rifle taking out just those rogue operators. This approach might also reduce side effects (sorry for the military metaphor but I think it helps visualize the process) so don't give up when cancer is found to have spread.

I would want to know as early as possible in order to look for clinical studies and/or research protocols which could be of benefit, if not to me personally then for others in the future coming down the same road...

On page 15 of the link is Guideline 1 - Health Care Before Cancer Treatment. This link also includes a lot of information whether it turns out you are metastic or not. CT chest scan is included for EVERYONE. But maybe I’m wrong, maybe it means everyone that’s metatastic but then how would one know they were without the tests? A feeling? The first week, I did get all those tests for everyone except the bone scan. I wish I could cut and paste but it won’t allow me to do that. Good luck Polly!