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So the break didn't last long

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

Hello 

                  So while my dad was doing the wait and see approach with his onc the radiation onc called so the break was kind of short . We went to see the radiation onc and he said my dad could be a canidate for radiation on his tailbone expect one spot in the front of the pelvis worried him . The radiation onc said he thought the spot in the front of the pelvis was " glowing " on pet scan cause of my dad's surgery . Said the surgeon had to move the spot that was " glowing " on the pet scan . Which of course kind of freaked me out thinking maybe my dad is actually stage 4 like the thought a month or so ago . 

              The radiation onc went on to say it's a odds are 50 50 that the front spot in the pelvis is cancer even said my dad's onc doesn't think it's cancer and he really doesn't either but if the front spot is cancer he doesn't want to do radiation on the tailbone . So now we are waiting for another pet scan again next month without any treatment . So it's concerning but my dad made the call the put off chemo so I got to live with that . However all this confusion with my dad's pet scan got me thinking . 

                        Has anyone else had all this trouble with a pet scan ? Cause I have read online pet scans are the most accurate test for it yet my dad has went from stage 3 to stage 4 with spread to the abdominal lining then back to stage 3 again after onc spoke to surgeon . Now it looks like it's 50 50 that they could go back to saying spread to the abdominal lining again it's like wtf ? 

                 The radiation onc and onc are both basing alot of what they are going back on the surgeon saying when she was in there there was only very small amount of cancer left on the tailbone none on the abdominal lining . There not even considering that my dad's surgery was 3 months before the pet scan what if the cancer spread after surgery ? I guess I am just looking for some information if anyone else has had this much trouble with pet scans ? Also has anyone else heard of a onc and radiation onc believing what a surgeon says over the results of a pet scan ? Thanks for any help you guys can give as always . 

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

Although I've never had a PET scan, they can be reliable, but can show uptake of areas that might not be cancer.  You have to really base your father's care on what the doctor's are saying.  It sounds like they are all corroborating with one another on what to do next, which is good that they are communicating.  Wait until next month's scan and then see if things change. Maybe they are waiting to see the comparison of the two scans to see what approach they want to take.

Kim

beaumontdave's picture
beaumontdave
Posts: 1132
Joined: Aug 2013

I had one light up on armpit nodes and a neck node, near or at the end of chemo treatment, after the original colectomy. Later, with a rising CEA, it didn't pickup the mets in my liver for quite a while, until they already decided to go after the growing lesions, in fact. PET scans [I must have had 15+] can have both, false negatives and positives, biopsies can miss as well, since they needle biopsied me twice in the liver and still didn't get a positive. My onc/surgeon was head of his department, so though I didn't like his style, at all, I trusted his skill and experience, and it worked for me. I liked an aggressive approach, the watchful waiting of four months before getting the liver resection just frustrated me, and my one met being talked about, became three during that time. Had I pushed harder for a faster response, would they have missed two spots in my liver because they hadn't gotten big enough to detect? I guess you have to pick doctors you trust and then let them make the calls, to an extent at least..................................Dave 

Real Tar Heel
Posts: 202
Joined: Nov 2019

Your dilemmas are always curious. I don't know about oncologists beliving one over another. Mine work in concert with each other, the radiologist, oncologist, surgical oncologists talk amongs themselves. There's also a cancer board (which I'm sure are operating at your father's place of treatment).

They may be split regarding the best course of action, but it's left to me in the end as long as I'm informed to make a decision.

They may place great emphasis on the surgeon's report because he/she has actually had eyes and hands on your father's organs. The doc who performed my colon resection described how the section of colon he removed felt and appeared, and I guess with experience you can have some idea what is happening inside your body's organs.

It's my understanding that radiation in the area you're talking about is very destructive. They may be taking appropriate caution.

worriedson714's picture
worriedson714
Posts: 253
Joined: Dec 2019

Radiation to the tailbone is destructive ? the radiation onc said he thought there would hardly be any side effects cause my dad has no rectum or bladder or prostate down there . Also that's basically what they said about the surgeon was since she had eyes on there they believed her . But three months is a long time I am worried that even if there was none in there during surgery it spread in three months before the pet scan . They don't seem to think so though and the surgeon is sure it's on the tailbone so idk . 

Real Tar Heel
Posts: 202
Joined: Nov 2019

Had a friend who had radiation treatments a year after her colectomy. She still had her other vital organs, but she was warned about the potential problems she would have.

One never knows with cancer, I went a year with nothing then within 3 months I had new relatively big mets. That is probably not unusual.

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