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PET scan results back and not sure what to think


Debbie2003

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My oncologist called to give me the results and he said that nothing showed up for the lung nodules but that something was going on in the throat and pelvis area, so he ordered new CTscans of the throat, abdomen, and pelvis next week. After we hung up I realized I should have asked him more questions. But I guess I was flustered.

How would you interpret his request? My interpretation is that he's looking for a primary cancer in the throat and pelvic area and he thinks the lung nodules could be mets. Does that sound right?

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Geez Debbie, I for one wont speculate as to what he may have been referring to. It could be a number of things. I also have had opportunities to ask questions and blew the chance and regretted it. I will say i know exactly what you are feeling right now ! Especially with the weekend here. From very early on, ANYTIME, i had any kind of conversation with my Dr. i had a pad and paper. I always write my questions out as they occur to me that way i dont forget them. It is so easy to skip over something that you were thinking of asking. I also learned that there really are no stupid questions. Hopefully, this will turn out to be nothing to fret over. Like i said though i can certainly empathise with you about letting the opportunity slip by. Good luck on your scans and keep us posted.

Best Wishes

Greg

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Debbie,

At this point, I would not try to interpert anything he is thinking, other than the fact that he is being thourough and wants to check into the areas where the Pet Scan showed there may be a problem. I don't think at this point that he is thinking anything more than that. He is still using diagnostic measures to find out exactly what is going on.

I wouldn't stress needlessly (easier said than done, I know!!). I have seen enough posts on this board where the Pet Scan "lit up" and then after additional tests, it proved to be just an infection or something. Try to take it one day at a time and know that whatever is going on, your doctor sounds efficient enough to handle it!!!

Keep us posted and I'll keep my fingers crossed for you!!

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Thanks Debi and Greg. I guess I'm just so paranoid right now! It's mainly because I have so many other health issues that I don't think my body could handle yet another chronic illness. Especially when I have one doc telling me that any potential surgery is too risky for me. Well, my appointment is tomorrow and hopefully it will be good (or even neutral!!) news.

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Debbie, Tim had two places show up on his pet scan, one on his hip and one on his back. We panicked, of course. They did say that it could be from old scar tissue or injuries. The back turned out to be where he had back sugery and the hip was from an old injury.

I hope yours turns out as well. Just don't panic yet; plenty of time for that if it's needed. :D

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I spoke with the doctor again and got clarification of what he's looking for. He's looking for colon cancer in pelvis and malignant lymph node in neck. I also got a copy of the PET report and it said the pelvis area is "worrisome" and "intensely hypermetabic" or whatever term it is. It is also WAY over the SUV ratio in both places.

I was really depressed because if it's true, then it would be Stage 3 or 4. I just don't understand how a person can have the cancer spread to a far-away lymph and not the ones near the primary cancer. And if the nodules on my lungs are too small to "light up", then I'm in even worse trouble. I'm sorry to be so negative and self-absorbed, but I can't handle this. I just can't.

I did the CT scans today with the disgusting contrast and drink. I don't know what the next step is but the doctor mentioned that I might need a colonoscopy. He is going to do more blood work next time, I think the CEA stuff. He did a regular CBC panel and my levels were fine.

I wonder if they can look at the CT scan and tell if it's an infection and not a cancer. The doctor told me not to get ahead of myself and that it could be cancer, but it could also be something else. He's very matter of fact and logical. I guess oncologists have to keep all the emotional stuff at bay or they'd go crazy.

I guess if I have to find a silver lining, it is that if I had to get cancer somewhere, the colon is a better place for me then the lungs since I already have chronic lung problems. I guess the colon would be a better place for me to tolerate the treatment.

I just don't know if I have the physical strength for this. I keep trying to remember what someone said about not worrying now, because if it returns out to be true, I'll have plenty of worrying to do then. So I should enjoy these next few days just in case my life changes with the next doctor's phone call.

Thanks for listening.

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Hi Debbie,

There’s nothing to be sorry about. That’s why we are all here to gather strength from each other. Stay positive and focused. I’ve found it better to take one day at a time and one step at a time. Not to get too far ahead of myself. To wait and get all the facts from my doctor before going on. I know the waiting period is the hardest think to do. If and when the time comes you will find the physical strength to do it. You can handle this. If you look at my signature I too was diagnosed at stage IV and I’m still (and still giving my wife headaches) here. By all means enjoy every day to the fullest. Hope this helps. Take care and God Bless.

Rich

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Debbie,

If you are being evaluated for possible colon cancer, and you have reservations about how good your docs at UCLA are, you may want to obtain a second opinion at Cedars. They are considered the IBF-Crohn's Disease-Colon Cancer Gurus of So Cal. As far as my "naming names" on my poor experience at UCLA per your request via private message, I'm going to hold off on that. You can go to the California State Medical Board site and look up information on any Physician who is licensed to practice within this State. From what you've described I don't think I would have been seen by any Physicians you may have been seen by, and my experience with two docs does not define the entire UCLA staff. Don't compare my experiences with a thoracic surgeon with your experience with a pulmonologist. It isn't appropriate.

I will strongly suggest that you obtain copies of every single report generated, every single scan made, and make certain to obtain copies of all pathology and biopsy and procedure reports, at the time the reports are generated. And keep them. Along with any reports written and sent to your Primary Care Providers or any other physicians you see.

Hoping that you don't have colon cancer, or any other cancer. Hoping this is something benign.

Best Wishes

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Thank you Rich. And I'm glad you're doing so well.

Faye - I haven't seen anyone at UCLA regarding these issues. The only time I went there was for a 2nd opinion on my lung problems. I also met with a thoraic surgeon there on the advice of the pulmo to ask questions about doing a VAT biopsy, but I decided against that. I didn't feel comfortable with him so that was that.

All my docs are in Orange County and they are the ones handling this. I was just asking you about your situation because you mentioned that you'd email me about it in another thread.

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Just to update everyone - got back from the oncologists tonight regarding the CT scan he ordered after abnormal PET Scan. The new report says pelvis lit up because of "severe sigmoid diverticulosis with suggestion of mild diverticulitis". So I have to go to a gastro and get a colonoscopy. I'm not sure what that disease is but I've seen it mentioned a few times and I'll start doing the research. As for the neck, there is a nodule on parotid gland so I will have to get a biopsy and see another specialist.

Now here's the strange thing... the 2 lung nodules (which was the reason this whole process got started when one doctor accidentally noticed a nodule on lung on a CT Scan, then ordered the PET and so on.) The big nodule has shrunk and the report says it "resolved itself" and that it was probably an infection or an inflammation. And the 2nd one that was 4mm is unchanged. It will have to be monitored. But the fact that the bigger one is gone was shocking.

So for now, I'm off to see more specialists. (Which brings my doctor count to about 17!)

Just wanted to thank everyone for all of their answers to my various questions over the past couple weeks. You are truly kind and loving people to help me and reassure me when I needed it the most. You're all special here on this board.

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