to scan or not to scan?

reece · September 2003

hi
i am a year from dx, stage II, MRM, chemo rads.
At the time of my dx my onc did not do any scans to see if the cancer had spread further than my nodes. I was happy not to have them, because I thought that I could not handle any more bad news. However, looking back, I wish I had just gotten them while all of that was going on.
My onc relys on blood work(not tumor markers) and symptoms of metastatic disease to determine if it needs to be looked into further. I really trust him, but I wonder - has anyone else NOT had scans after having stage II (with nodes involved)?

The thought of having thoses tests and finding something now, scares me to death. He'd do them if I asked, but, I'm not sure I want to ask. I'd rather just go along with him and think that nothing is wrong (if it were only that easy)

reece

TylersMom1 · September 2003

Hi Reece,
I was diagnosed with Stage II BC with one node positive. Had AC and taxol for chemo and then 33 rad treatments. I also did not have any further testing to see if there any further cancer. I felt like you did and talked with my doctor about it. He assured me that if there had been any cancer, the chemo and radiation would have taken care of it. If it did not take care of it completely, it would be so small at this point that the tests would not pick it up anyways.

About a month after all treatment was over I began getting terrible neck pain (it was at the same time that I went back to work so I believe it was stress related). I called my onco and he suggested a bone scan which I was very happy to hear. It turned out negative but the relief it gave me was tremendous. Peace of mind is a wonderful thing!

All doctors are different and their treatment plans are different. If you REALLY are uneasy about not having any further testing, I would talk some more to my doctor and insist on it if need be. You are the patient and you are the one in control of your health, no one else.

Good luck and God bless...
Cheryl

jeancmici · September 2003

TylersMom1 said:
Hi Reece,
I was diagnosed with Stage II BC with one node positive. Had AC and taxol for chemo and then 33 rad treatments. I also did not have any further testing to see if there any further cancer. I felt like you did and talked with my doctor about it. He assured me that if there had been any cancer, the chemo and radiation would have taken care of it. If it did not take care of it completely, it would be so small at this point that the tests would not pick it up anyways.

About a month after all treatment was over I began getting terrible neck pain (it was at the same time that I went back to work so I believe it was stress related). I called my onco and he suggested a bone scan which I was very happy to hear. It turned out negative but the relief it gave me was tremendous. Peace of mind is a wonderful thing!

All doctors are different and their treatment plans are different. If you REALLY are uneasy about not having any further testing, I would talk some more to my doctor and insist on it if need be. You are the patient and you are the one in control of your health, no one else.

Good luck and God bless...
Cheryl

Both of these messages indicate the current protocol which I was under too. I was dx in Dec. 2000 - had surgery Jan 2-01 - then four AC and four taxol and radiation finishing Sept 24, 01 - then on tamoxifen until 8/28 when I had a bone scan because of pain. I had extensive mets in my bones although the bone scans shows both arthritis and bone mets so in some areas, it is uncertain how much is one or the other. In the case of a left rib, it is clearly metastasis because arthritis does not hit the middle of a rib!

I had asked about a bone scan at a three month check-up last October which was a year since treatment had ended - the nurse practitioner said it wasn't done until pain indicated a problem. I can't believe I just let it go - perhaps I didn't want to find out anything because I didn't feel unusual symptoms - I had thought in terms of precautionary testing. Looking back I would have gone to my primary M.D. and had her order a scan. Then MAYBE I would only be dealing with bone mets on a small scale instead of also both lungs, 5 small areas in the liver and enlarged nodes here and there etc.

I have to admit that I keep mulling this over in my mind wondering who to blame when i know I should forget about blaming anyone and look to future needs.

There is a new nurse practitioner there now and with the visit to look at the bone scan results she said to me when the doctor was out of the room that whenever anyone has even one node involved oncologists assume cancer cells are already in the blood stream and hope the chemo will take care of a sufficient number so the immune system can take care of the remainder. Chemo never gets all the cancer cells with the treatments.

The three of us had the same stage and I had one node involved. I also am HER2neu 3+. If either of you are not, you have a better prognosis.

I hope I didn't talk too much here - and was of some help.

Hugs and best wishes to both of you.
Jean

inkblot · September 2003

Hi Reece:

Sorry to hear that you're in such a quandry over this.

Two years ago when I had treatment, it was standard protocol, at least in my area, for the medical oncologists to order a scan for everyone having chemo, regardless of node status, prior to beginning treatment. I had one then but have had no scans since. Just the chemistry profile at regular intervals along with the tumor markers and counts. I also have a yearly CXR.

My medical onc also feels that scans are not warranted unless one is having symptoms and/or the blood work indicates the need for a "search".

If you aren't having any problems and if everything else looks good, then why worry yourself so?

I'm wondering if maybe because it's your first year anniversary of dx that you've got a case of "nerves"? If you really feel that you need a scan, then you should have one, if for no other reason, just to give you that peace of mind that Cheryl mentioned. If, on the other hand, you're having any persistent, even mild symptoms, then by all means, don't talk yourself into avoidance. Get it addressed right away!!! Fear is a terrible thing but the good news is that when something really is amiss, the earlier it's taken care of, the better and if nothing really is amiss, it's wonderful just to know.

If you feel great, then calm down and enjoy every day and try not to allow too much negative energy to feed your fears. Stare it down and turn it into the positive energy of living, loving, sharing and doing what you really want to do in life. If that requires a scan, then get one because "peace" is the most valuable thing we can cultivate. Without it, everything is half hearted, half appreciated, half enjoyed. The glass is always half empty. If fear is paramount, then everything else is diminished, short changed and incomplete. My philosophy is that dealing with cancer absolutely demands, like at no other time in our lives, that we work hard on the peace issue. Mostly because we now fully understand that there are no guarantees about anything. I work on the peace issue every day...my way of keeping ordinary stressors under control and reminding me that stress is something to be managed. Otherwise it may take over and manage ME! No thanks

Hoping you will find your answer really soon.

Love, light and laughter,
Ink

bullfrog13 · September 2003

been there done that..was a wreck.. still am everytime I have one..to coin a nike ad..JUST DO IT!

chemoqueen1 · September 2003

My doc did order scans, even though I was lymph node neg, some small cells can still get out. I am glad I had the scans. I was more frightened of finding something out too late than finding out right away and dealing with it.

blossomtime · October 2003

Hi reece, I had stage II with positive nodes. Had left MRM and reconstruction. I initially was not going to have scans but my LFT's rose after surgery. So had abd CT and bone scan. This was immediately before chemo. Thank goodness both negative. I know how you felt, I thought I could not take anymore bad news either. That was one yr ago. Had another bone scan in January due to back pain and subsequently an MRI which all negative. My dr feels the same way, labs and yearly chest xray. The others only if have a problem. Personally I like the peace of mind I get when one is done and of course is negative. Take care.

KimInBeirut · October 2003

Reece,
As you know, I now have 3 unexplained broken ribs, but I just had a bone scan and it showed up "normal." What a RELIEF! If nothing else, having scans done tell you whether you need to pursue further treatment, or just bear with the pain of some of the side effects. Now that the bone scan came out ok, well......I'll move on and deal with the "odd pains" you described in your long-ago post. We've all had to bear with "bad news" before --- I think you can handle it again, because I suspect your fear is of the "unknown". BUT, how nice it will be for you if the scan comes out negative!
Have the scan - it'll allow you to deal with whatever the results are in you own way - it's surely better than spending your life "wondering"!
All the best, Reece
kim

ksfc · October 2003

HI Reece - I'm also a stage II survivor. My onc ordered a bone scan, ct scan and chest x-ray before chemo and then again after completion of treatment. Now, he relies on blood tests and symptoms before ordering anything further. Diane

to scan or not to scan?

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