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SCAN SCAN SCAN SCAN - Why survivors should ALWAYS BE scanned -

mykidsmommy's picture
mykidsmommy
Posts: 78
Joined: Apr 2007

Hello Fellow Survivors ~

I was on these boards 10 years ago - almost to the day. I was 32 went in for a colonoscopy and went straight to surgery. I did 6 months of hard core chemo - my kids were 2 and 7. That year was a total blur. About a year into remission there discovered a tiny nodeule on my lung - biopsy showed it was cc. We opted for RFA - and my case was put in front of a tumor board as to whether or not "mop up" chemo was neeeded. It was decided by the board that chemo was not neccecasry. 

Every six months I was scanned then every year. I was NED for 7 years. In 2013 my Onc told me I no longer needed to be scanned. Well guess what.... it was during those past two years that the tiny nodule in my lung grew and grew into what is now a 5.6cm mass in my right lung.  The truth is, had I been scanned all along we would have caught this much much sooner and smaller. WHAT A DRAG! So now I am grappling with what I thought was LONG since bedind me , and headed down this surreal yet familiar road again. Needless to say I will not be going back to my onc - I am seeking new docs from two huge cancer centers in my town. I am not angry... I am thankful. I am thankful because a few weeks ago something very odd ( a pulled muscle from tennis ) and some shortness of breath brought me to the ER. I know without a doubt that GOD sent me there that night so I would be scanned and FIND and FIX this mass. 

I wanted to tell each of you my story .... not to scare you, but to remind you. We must be monitored , maybe even forever if need be. Early detection is key. BUT here I am to tell you that I will beat this again - just like I did the first time. I plan to grow old ( getting scanned every year) and not let this be my whole story. I thought this chapter had closed , and I always felt amazingly blessed to have surivived stage 3 colon cancer- and I will will feel that way again - after this new chapter is done. 

Let me story be a lesson - cuz we all know no one wants to be doing this again. 

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

...reinsured me about the way I always felt. Of course every case is different and has to be handled differently whether it's Stage 1 or Stage 4, family history, lifestyle etc. I was stage 2-3 three years ago and getting scans twice a year. Next year I'll go once a year and two blood test. And I would be ok with that for the rest of my life. You have to talk to your doctor and put in your opinion according to your knowledge and gut feeling. If your doctors are too rigid and won't consider your concerns and wishes find one that does. Our life is too precious to hand it over to someone, you have to be your own advocate.

Thank you for your valuable insight and wish you success again.

Laz

beaumontdave's picture
beaumontdave
Posts: 1114
Joined: Aug 2013

You answered my questions from the other thread, I'm sorry as hell that things played out as they have, but I'll take note of your experience and push for the yearly scan, if and when I get that far out. Meanwhile, tell the new docs to get that junk out of there pronto,. and as far as chemo goes, it didn't stop mets from popping up in me, so it doesn't guarantee anything in my book, and for some it's caused a lot of grief. I wait to hear the plan that gets you back to Ned.............................Dave

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Scans. scans, scans, and radiation poisoning.

There's a "lifetime limit" to the amount of radiation you can take before it becomes a serious problem (think cancer). Between all the scans and X-rays, and the more radiation infusion of the PET, we can only take so much......

I have had scans initially (2006) every three months, and later, every year, and at times twice a year. Blood tests and scans did not ever indicate a problem. But I did have a problem in the "rectal stump", and my Gastro doc (who I trusted with my life) did not accept my plea for a sigmoidoscopy. My problem was due to a signet cell tumor that grew large enough to now call for a very major (total pelvic exenteration) surgery.

So scans blood tests are not enough; they do not indicate things that other tests can. Getting one's hopes up with the "NED" concept can be very damaging. If you have cancer, you will always be subject having cancer. My Mother went for 17 years after her DX of lung cancer before dying of lung cancer. Seventeen years post diagnosis may sound great at year one, but diminishes greatly at year 17. I doubt anyone here can rally and brag about their longevity when the new diagnosis is returned. I made it since 2006. Big deal. Ok, I did it without the chemicals and radiation, and that.... I am thankful for. I stopped my herbal therapy in 2008, since I felt that I no longer required it. I was  fool.

The point? Don't rely on scans and blood tests, they don't tell everything. You have to be vigilant and note any problem you feel should be addressed. If your favorite physician does not take your concerns seriously, GET ANOTHER PHYSICIAN.

Physicians are human and make mistakes; they can and do overlook things that can kill you. Never put all your trust and faith into one physician, especially if you feel you have a problem that should be addressed.

A malpractice suit does not keep you alive.

Best of health,

John

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