PETCT Scan-Questions?

LittleG

Hi Ladies,

I post every now and then with a question, but I never get much response. So, if you have any thoughts on this, please resond! I had a PET CT scan done and went this week to get the results. He said it looks good, dosn't show cancer and then went into a "but" lecture. Mentally I was done when he said it looked good. After getting the report home and reading it (with my vast amount of no medical knowledge) there are a few things that seem concerning. Yes, I know I should call him back and go over this. But I then feel like one of those crazy people who call with every little thing :-) And really I am one of those, I just don't actually call him. The report does suggest further evaluation of my right thyroid lobe, and on my uterus and bladder "attention to this region is suggested"
So...should I put this report away and just follow with the rest of my stuff? I see him again in 3 months and I have an MRI next month. I'm I going to far in trying to read these things myself??? Any feedback would be truly appreciated!!

g

slanderson

I would call and ask him. I got a ct scan last year. All clear. Great. 6 months later I had a kidney stone in the middle of the night. ER visit. and later surgery to remove it as it would pass. There is pain in this world, but I have had children and the kidney stone rivaled childbirth. Anyway, later I learned that the ct picked up the kidney stone 6 months ago. If I had known about it, I could have probably prevented it by drinking lemon juice and dissolving it. Maybe I'm biased because of this, but we are paying our doctors and we paid for the test, right? Why should we feel shy about asking questions regarding our health?

Shannon

sunshine55

Hi im the same, relutant to question anything thats bothering me but we should.. its our body and our lives that are on the blocks !i was misdiagnosed to begin with keep at it.. j

Chelee

LittleG, You sound like you have my same oncologist! I wait for my PET/CT results and she just says its unremarkable and thats the end of it. (But when I get the copy of it and read it at home...I find all kinds of things that concerned me and want answered.) This has happened to me a couple times now.

I am a stage III'er with positive nodes so I take this very serious. Once I got home and read there was *increased uptake* in my hips. Also an enlarged node under my right axilla...cyst on ovary and a few other things. I was furious to say the least. She said all was fine. (Sorry...but I don't call that fine!!!)

I called down there and she just didn't want to deal with it but I did get into see the head nurse of oncology and she went over everything with me. Things she wasn't sure of she called down to radiologly for me. So It was a hassle but I did get my concerns addressed.

I should of NEVER had to find things out like that. Again...this has happened twice to me. My onc never tells me anything. What are we paying for? Our doctors are working for us and they owe it to use to answer are questions rather they want to or not. I can so relate to how your feeling. Believe me...you will NOT be comfortable or have peace of mind UNTIL you get your onc or someone else down there to review your PET/CT results and explain each thing to you that your concerned about. Its your RIGHT to know. So yes...call down and let your onc know you have questions and need some things explained. He/She should NOT be offended. Plus I have learned you HAVE to be pro-active these days in your care or so many things can slip through the cracks. So call down there and see if you can get another appt LONG BEFORE your 3 month one. Thats to long to wait. It will drive you nuts. Someone down there can give you a few minutes of their time surely. They OWE it to you. Your request is a very reasonable one. Good luck...hang in there.

Chelee

CaliforniaKate

I would definitely call and have everything explained to me. And if I wasn't happy with the explaination, I would get a second opinion.

b445

One thing to take note of the PET/CT will show any sing of inflamation. ie artheritis, irrataed bowls, areas that are healing such as the scars from surgery.
But certanly call them back and tell them you want to go over it more. it's your right to fully understand what the test is showing.
And if you can't get them to help you understand it then take the results to someone else that can.
best wishes

LittleG

Thanks ladies for ALL the responses. I have been trying to leave the report alone, and just figure I'm literally reading to much into it. Chelee, did your report come out to be something to be concerned about? My issues are that I have lost over 10 lbs since Nov., and then another 2 pounds in the week that I have seen him. I'm down to 108 now, which might not sound like a lot to loose, but I think it is. Anyway, I asked him about that and he said he didn't know why. A couple of things on my report say it appears to be OK "..but a small node can't be excluded." And "further evaluation with ultrasound of the thyroid and palpation may be helpful." And other crap on there too. Yes, you are all right that we do pay them, and they should be available to answer our questions. But I have this "thing" that makes me feel like I am a pain in the ass patient, and I'm just being paranoid. My husband is very supportive, but I think he thinks that I over read everything too. So, except for you girls on here, I try and leave it alone and not say anything. I know..I'm a mental case!!

g

bev920

If you are not sure of what the PET scan results mean, you definitely should call your oncologist and ask for an explanation, That is your right and responsibility as a patient. The oncologist cannot read your mind. If you don't ask, he does not know you have questions.
Good luck!

teacheng1

Call your doctor! You should not have to be confused over YOUR own health! Best of luck,
Teresa

LittleG

Thanks for the advice ladies. I think I am "stuck" in a place right now. I want to think its all over, and I'm fine. I can't even explain it. I don't know if anyone else feels like this, or even knows what I'm talking about. I want to move beyond all of this, and maybe by me questioning everything, I feel like I can't move forward. If something were wrong, he would have said so. I'm thinking I need to move forward in my head, and stop thinking everything is something. Just using this board as my therapy I guess. I'm at a stand still. That much I know.

g

scarednancy

Hi,
I am an ILC, Stage I person too. My doctors told me I don't need any scans. I'm just curious why you are having them? Do you have symptoms which called for it? Thanks for any info you can give me. I live in fear of BC.
Nancy

LittleG

Hi Nancy,

I was dx in Nov of '05 and since then have had several scares, but no return of the cancer. I recently had a biopsy of my good boob because I was having discharge. Again, turned out OK, but they want to re-check it again in July. It is still having a discharge, and I have an MRI coming in 3 weeks. I also have been having pain in my ribs since last Oct., so they ran a pet scan. It states "actual bony uptake is considered less likely than muscular uptake." and then the stuff I mentioned above. So..I feel like I'm living on 3 month intervals lately. I want to move beyond this "trapped" feeling and be done with this, or somehow be OK with this. I guess that's where I'm at. I feel like the day goes by and not matter how much I move, I'm still in the same place. I'm going to try and go to my support group tomorrow. That may help.

g

Anonymous

LittleG---I had a CT scan 2 years ago due to severe abdominal pain. They found a large (8 cm) mass on my ovary and my pancreas was slightly enlarged. I ended up having a total abdominal hysterectomy for ruptured ovarian cysts (5 in all, fortunately all benign; but during that time, not one doctor could tell me why the pancreas was enlarged--not the radiologist (who originally said "indeterminate significance" on the report), not my PCP, nor my gyn who did my surgery. They all kind of brushed it off, while I was worried not only about the possibility of ovarian cancer, but also pancreatic (which has a very grim prognosis). I saw my oncologist a few weeks later and mentioned it to him. He said "oh, it's very common to have an enlarged pancreas, 10 to 15% of people do". How I wished I had asked him the question in the first place!!! Just reinforced the idea that doctors do not know everything.

LittleG

AWB

Thank you for sharing that! I guess I need to get strong. I've been feeling like crap lately, and of course being told I just need to eat more, I feel like my fears are unfounded and that its just me. My rib still hurts, but since I'm "OK" I think I just need to suck it up. You are right in what you said. I just need to get myself together and find out what's wrong with me. I know I don't feel well, that much I know.

g

mkl48

Hi,
I don't want to worry you more, but as an ILC gal you need to know that your uterus and bladder are not involved. ICL has a sneaky behavior patteren and I would sk directly about that. What is supposed to come next if a PET/Ct shows nothing- Ask does that eliminate cancer.Beth

LittleG

OK, I put in a call to the nurse specialist in his office! I got the recorder, but its still a step forward! I asked her what was the next step since it says recomend further evaluation. Talking to all of you, and all of your support has been priceless. I mean that. Thank you to all for listening to me and prodding me along!! I'll let you know what she says once I hear from her.

g