Frustrated....How do we know if the cancer is NED/remission

tangandchris

On tumor markers, my markers were at a 14 at dx...and as of a couple of weeks ago were at a 15. MO says that tumor markers on their own aren't reliable, but if they are high and some other symptom presents itself that is reason to be concerned.

I'm slowly getting at ease with trying to move on and put the pieces together. I realize more and more though that I will never be the same though. Transitioning out of active tx into life is a whole new challenge. However I am grateful that I am able to go thru this challenge as so many others aren't.

((hugs))

caaclark

I was diagnosed in 2006-almost 9 years ago!  The only scans I had were prior to treatment beginning.  My oncologists (MO, RO) say no scans unless symptomatic.  At first I was uneasy with that but now I am ok with not having them.  When I asked how we know the cancer is gone I was told..."When you live to be 80 something and die of something else." 

Also, transitioning back to life after treatment was hard for me.  In many ways it was harder than being in active treatment...Not harder physically, but harder psychologically dealing with the fear and the what ifs.  I didn't think I needed it but I finally talked to a counselor where I was being treated.  BEST thing I have ever done.  In just a few sessions I was able to reframe what had happened to me during the prior year.  I wish that I had gone sooner.

peacestrength

Thanks, Carol for your words of wisdom and experience. Tang, it has been very difficult for me as well but I'm slowly moving on to a different life than I had before.  I think I'm finally letting go that my life will never be the same...it's so difficult though.  I started a mindfulness meditation class last week to help teach me how to properly meditate.  Meditation sounds so easy but I find it difficult without receiving some teaching on it.  The instructor encourages 45-60 minutes per day...I did it last night and kept falling asleep.  With practice, I'm working on not falling asleep.  Blessings to you sister.

clariceak

I just passed the magical 5 year mark since dx. I prefer the 5 years past end of treatment which will be May next year for me. I almost feel like laughing if someone says "you're past 5 years, you must be cured".  I know they mean well, but five years just means the chances of it coming back have diminished somewhat or maybe it is a just a lazy slow moving cancer after being beaten by the chemo stick.

My onc does bloodwork every six months which includes a tumor marker test.  I have no idea if it accurate for me, but if it climbs steadily up then we'll know a scan may be in order.  I suspect I'll be seeing her for the rest of my life. I do think that catching a recurrence early could be beneficial for longer survival. 

I'm stage IIIC so every year in remission is a huge bonus for me! 

hopefour

clariceak...congrats on being 5 years out!! There will always be the chance BC could come back, but everyday is a blessing!! 

Caaclark..thank you for continuing to come back to share wisdom, insight and offer encouragement. I too found  life after treatment was a challenge as life now held so much fear. But, time has soften the daily fear and now there are days without fear....thankful for that! 

TectonicShift

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Anonymous

Caaclark:  I'm curious what therapy, hormonal or other, are you doing now?  If you prefer to PM me please feel free.

Shelly

pip57

After years of studying this topic this is what  helped me come to terms with not undergoing routine tests without any symptoms.  

Studies continue to show no difference in survival rates.  I understand that there are two major reasons that this could be.  We assume that the mets cells will act and respond the same as the original tumour.  Apparently, this is not the case.  Secondly, although the hope is that chemo will kill ALL cancer cells, this does not usually happen.  Cells can be left behind, mutating or becoming dormant.  If chemo is a big gun that is used before any symptoms, (usually indicating detection when cells are still small) it could serve to cause any remaining cells to become more aggressive and resistant to future tx when it does start creating symptoms.  

Of course, not all cells respond the same in every person or organ.  That is one of the reasons that this disease is not yet considered "curable".  If a cell is already very aggressive, not much will be able to stop it.   My doctors' tell me to let them know whenever I experience anything new in my body.  I have done so and have been given the appropriate tests immediately.  So far, test results have shown that any symptoms are non cancer related.  

I am not anti testing.  I just believe that having routine tests will not enhance MY life.  Scanxiety wastes prescious time.  Losing two friends shortly after they received clear results from routine testing has also convinced me that there is questionable benefit to it. 

Some people will have different views and reasons for them.  Cancer is not black and white, either/or.  Do your own research and decide what helps you live life for you in a way that does not let cancer dictate more of your time than it should.  

Anonymous

pip, the experience you had with your friends is part of the reasoning for why my oncologist doesn't believe in routine scans. I asked him specifically about brains scans (since Her2 likes to go to the brain) and he said that I could have a clear scan and brain mets two months later - so it's more important that I report any neurological symptom, no matter how small.

I'm torn on this topic because it doesn't make sense to me that one very small met on the bone or liver that can easily be taken care of wouldn't carry a better life expectancy than widespread mets. I wonder as treatments get better, there will be cases of ogliometastasis being completely cured. On the other hand, if it truly doesn't make a difference, I have a hard time gearing myself to go up on a fishing expedition. And it's not like everyone just gets scans and it's either clear or mets. I've read too many horror stories of inconclusive scans, which lead to invasive biopsies or "watching and waiting hell".

My first priority would be to live the longest life possible. My second is quality. If routine scans will help me get to a longer life, I'll swallow my anxiety and do them, even if I have to shop around for oncs who will do them. But if it doesn't make a difference, I think I'd have a better quality of life as a Stage III in denial instead of a Stage IV.

At the moment, I'm not doing anything though. I'm in a clinical trial so I get a CBC and physical exam every three weeks. I would be very surprised if there weren't scans ordered at the end of the trial. But until then I'm not going to ask for scans. My reasoning is that I had clear scans before treatment and extremely aggressive treatment. If I have a recurrence despite all those drugs, I'm pretty sure I'm screwed anyway and I can't handle that knowledge right now.

pip57

At dinner tonight we were talking about Dr David Servan-Shrieber.  You can google him if you are unfamiliar with him but he was a pioneer in anti cancer diet and lifestyle.  He is a prime example of the pitfalls of routine scanning. Within weeks of a clear scan he began developing symptoms. He didn't follow through on them because he had been given a clean bill of health.  When he finally went to the doctor, the tumour was quite large.