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March 18, 2014 at 5:39 am #21877momofmanynancyParticipant
This was my 6 month PET scan after NED 3 years. I have had 3 melanomas (primaries). Two of them were Stage 1s and the other was Stage 3 with one lymph node mets. I am on every 6 month PET scans now.
I had my pre-scheduled PET scan today, after having had a tummy bug with N/V/D on Fri/Sat.
This was my first visit
not to hear that everything is fine since the initial PET.
The radiologist says there are multiple subcentimeter light ups not seen before, in the small bowel. His suggestion if timely imaging followup. I told the oncologist that I had a GI bug over the weekend, and he suggests it might be inflamed lymph nodes after being sick. I can understand how that would happen, can’t find it on Google, but I can see it happening.
The plan of action is to repeat the PET scan in 6 weeks. I am leaving town (flying) for 3 of those to take care of my mother, and I do NOT want to give the melanoma a foothold if it is growing in my small bowel!
So here are my questions:
#1 Does 6 weeks seem like a long time to wait?
#2 Has anyone had this happen?
#3 Has anyone had mets to small bowel and did surgery help?
#4 For your sake and finances, if you have had a recent tummy bug, wait for the scans!
I appreciate any help with this.
-Also in the middle of all of this, I am also going to have to change my oncologist. I have not been happy with this young fellow, and he really was careless today in how he handled telling us this news. I had doubts before today, but today was….. unbelievable. Without going into too much detail, he wouldn’t tell me the results with us sitting IN his office until he talked to me, examined me, stepped outside and took a phone call, etc. It was almost as if he was toying with us. He even asked me where I hurt, I told him my joints hurts….and he “played” a game by saying that he would give me a ‘tidbit’ that it wasn’t my joints that showed a problem, but wanted to finish his exam before he told me. He said that….said he had been burned by patients before (yes, oncology patients) by telling them their PET results and then not getting an accurate history from them. Sorry to “go off” here, but it was the most awful game I ever played, me asking
many times for the results and him playing a “guessing game”. HE said he has his method to get his answers before he discussed results ~ I told him that it was not one that I was comfortable with and didn’t server our patient/doctor relationship well. He told me that I certainly could “Fire” him from being my doctor, that was my right. Our words were not heated, I told him that I was very anxious and this was not a method of care conducive to building confidence, rather causing greater anxiety. Something similar happened with him 6 months ago after a normal scan. When I went in, he wanted to chat, type my parents names, names of all my kids and their birthdates, my dad’s military history, etc. He asked, I answered, he typed all of this DATA, yes…the oncologist, into my files. All while I did NOT have scan results sitting their with hubby. I finally said, Could we please talk about my PET results. He grinned and said, “Oh, so you are one that likes their dessert before their meal”. I found that ODD, considering we were in an oncology office dealing with a deadly disease and my first 6 month wait. It was insensitive, I thought at the time. Now I know, that is his “method”, to take data before he tends to the “heart” at hand.
It is so hard to deal with the fears, without someone we need to TRUST making us break in sweats and play games. There. Done. Sorry. I am a bit frustrated.
ThanksMarch 18, 2014 at 4:35 pm #63841TreeFrogParticipant Hi Nancy,
Sorry about the confusing scans. My money is on it being a result of your stomach bug. Not that I am a doctor, but because the light-ups are multiple, small and about the same size it really sounds like recently irritated lymph nodes. And the small intestine is EXACTLY what gets inflamed with many digestive viruses – the Norwalk viruses for example.
As for your doctor, get away from him as fast as you can. He is worse than a man with no empathy (which he is as well) – he is having fun with you. It sounds as if he has handled your care OK so far, but when you’re dealing with a professional with no conscience, you can’t count on that in the long term. I’m glad you’ve made the decision to sign up with someone else.
Too bad you have to wait 6 weeks for what will most likely be relief from your worries, but I can understand why they see that as a reasonable time. I had a stomach bug at Xmas, and I am quite sure that things were still somewhat inflamed in that area for a few weeks after that.
Think about other things (but don’t think about that doc – banish him to oblivion where he belongs!)
~WendyMarch 20, 2014 at 3:41 pm #63842bubbasmommaParticipant
I’m sorry you are having to go through this scare. I am with Treefrog in that it probably is irritation after the virus. You had the bug on Friday and Saturday and went for a scan within a few days.
I am not a fan of all these scans. In fact, I’ve refused them for myself. I feel like we give these doctors too many opportunities to find things wrong with us. Furthermore, what is the impact of PET scans every six months? We are introducing radiation to our bodies on a six-month frequency. I know I’m off topic, but sometimes I think what they try to put us through is overkill.March 22, 2014 at 1:37 am #63843momofmanynancyParticipant
Thanks yall – I did message the Oncology Dept. and politely requested not to see that physician. I got a quick response honoring my request and they will be setting me up with someone else.
I took an out of town trip that I already had planned and I am having a great time! My tummy still is not right, but time will tell.April 7, 2014 at 1:44 am #63844Shirley ZParticipant
Its just unbelieveable that some people actually manage to become doctors. They should have to pass a compassion test. Glad you switched to a different doctor.
I have been fighting a nasty stomach bug for the past week. Thought I was over it and then it came back. Stomach still feels funky when I eat.
Hoping all is well and it was just the after effects of the flu that caused the scan to light up.
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