I had a CT scan of the head on Saturday due to ongoing tinnitus in left ear and it constantly feeling 'full'. My oncologist has just called me to let me know that he has just had the report which shows 'abnormalities'.
The left ear does show something on a small bone within it and there are apparently a number of small deposits within the brain. The report describes all these as 'enhancements'. My onc has an issue with this terminology he says as my scan was without contrast so therefore whatever is there isn't 'enhanced' so he is emailing the reporter of the scan with this confirmation of no use of contrast to see if they still have concerns of possible mets.
Either way, I am now being scheduled for an MRI to clarify what is there, asap.
He went on to question me as to whether I have ever had meningitis? No. A serious case of chicken pox etc...apparently I did have it fairly bad as a very young child!
He did say that to him they had appearance of calcium deposits due to their more 'dense' appearance as opposed to mets, but of course they may not be showing properly without contrast.
Has anyone had similar experience? Currently don't know what to think/feel about it, feel a bit numb.
Thank you very much sandra for your response. I would agree that at the moment it does sound ambiguous. Onc did say that after seeing many CT scans of brain mets over the years, mine looked 'odd' by comparison. Well that doesn't exactly fill me with confidence! So I don't know if that's a good or a bad thing🤔
Apparently whatever is there isn't affecting the surrounding tissue, no swelling etc...
I cant say it wont be on my mind all weekend, but I will try to make the most of what appears to be a decent spell of sunny weather.
I am so sorry you had to get this news right before the weekend. The CT scan sounds ambiguous. Depending on what radiologist is reading it some times they can be interpreted differently. A MRI would definitely give you more information. When is it scheduled? I hope you are able to enjoy your weekend.
Hi jade thank you for replying. I'm not sure as to when the MRI is, however I already have an appointment scheduled for tuesday for my routine CT of abdomen/thorax to check my already known sites of disease. My oncologist was pondering on the phone last night as to whether he could pull some strings to also have the MRI then also, I'm hoping so as I just want to know now. I will keep updating on here.X
Hi CarolineI’m sorry you’ve received this news. I want to say not to worry until you have clarity with the MRI and to try to find something to distract yourself in the meantime. But the not knowing is the most difficult. The few months of tests, scans and biopsies before my de novo diagnosis was the most anxious time of my life. So I’m not in a position to dish out that advice. But I’m routing for you all the same. xx
Thank you stardust. Yes it's definitely the not knowing that's the most difficult. I'm planning a walk later with my husband, it's a lovely sunny day so I'm sure that will distract me.
Enjoy your weekend x
Hi Caroline. As you know I have developed Tinnitus over the past few weeks. My Oncologist recommended a hearing test. I’m going for that on Wednesday. It seems your results were a little complicated but I will mention what you have written to my Oncologist when I next speak to him. The annoying noise we have is a torment at times. I’m looking forward to you next post as this is my guidance right now. Wishing you all the best with your outcome. Cheryl
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Hi Cheryl, thank you for replying. I hope your hearing test gives some explanation to your tinnitus. I will definitely keep you updated on news with my issue as and when it comes in.Take care x
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Please do. Hope it goes well.x
Hi Caroline,
I hope you get your MRI done soon so you will know for sure what is going on. It sounds like there is a lot of speculation and uncertainty at the moment, which can't be helping. I'm hopeful for you that this is nothing serious. Please keep us posted on how you get on.
Take care,
Sophie 💐
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Thank you Sophie, I will update when I have developments. Hope you are well x
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You’re welcome, Caroline. I’m not doing too badly. I had my first Covid vaccine on Wednesday. I’ll be getting the results of my second thyroid aspiration on Friday and then it will be time for my CT scan next Saturday. I’ll be glad when that’s all done and I see my oncologist for the results on the 15th. So it’s going to be a busy couple of weeks coming up.
Sophie
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Good to hear you've had the vaccine now too. Best wishes for results on friday. X
SophSP what was going on that you have thyroid aspirations done. Just asking because my PCP doctor has ordered a thyroid sonogram because my TSH number dropped but it was still in the normal range low end but still normal. I feel like it is unnecessary and I'm thinking of refusing it. But she will probably drop me as a patient if I do.
I requested further investigation of my thyroid when a nodule showed up on my last CT scan. When I mentioned it to my oncologist she didn't seem concerned that there was anything going on, but she agreed that I could have it looked at. So I had the first aspiration in December. Unfortunately, the doctor didn't gather enough cells to be able to make a proper diagnosis, so I had to have the procedure repeated. The multidisciplinary team meets up on Monday to discuss my results and I'll get a call from the consultant on Friday with the results. I've not had any symptoms and I'm hopeful that the nodule is not cancerous, so this is precautionary.
If your doctor feels that the test is necessary I would go ahead and have it done. At least then you will know for sure what is going on with your thyroid.
Hi Sophie, I had the same thing while having my first scans etc at my MBC diagnosis. Two thyroid aspirations before they got enough cells. Nasty! Four months later I had a total thyroidectomy for thyroid cancer. Often there are no signs or symptoms. I didn’t have any. But often these things are not cancerous and people live with abnormal but harmless thyroids for years. Because we have regular scans things get picked up which we would sometimes not know anything about, like harmless liver cysts, abnormal thyroids etc. I hope yours turn out to be nothing to worry about and that everything goes well next week. Vicki
Thanks for the words of encouragement. I really appreciate it. You're right that thyroid aspirations are unpleasant. I felt like I had been strangled after the first aspiration and the second one was very painful, so I hope the results show that there's nothing sinister going on. I hope you have managed well since you had your thyroidectomy with no further complications.
I have my fingers crossed for you Sophie.It was unclear when I went in to surgery if I’d need a partial or full removal of the thyroid. The surgeon made the right call as it was all cancerous. This got over shadowed by the MBC diagnosis at the same time but it has been plain sailing ever since. I just take levothyroxine meds first thing in the morning and it’s dealt with. Blood test every six months. ✅
Thanks for sharing your experience with me. It's good to know that the surgeon got the cancer out and that you are doing well. I will push for surgery too if the results come back and it's cancerous.
Thank you, Marianne! Kim is off work on Friday, so he will be with me when I get my thyroid results and he will take me to the hospital on Saturday for my CT scan.
Dear Cazlav....questionable scans are certainly a thing...and while they may fill us with anxiety, they also illuminate a path to different treatments. I’ve had my share and will no doubt have more. Trust the science, continue to communicate with your doctors, ask questions and bring up your concerns. I’m sorry you are dealing with this kind of issue...but it’s our journey. You’ve heard some wonderful advice and suggestions...I hope they help!
I'm glad you are intruding always welcomed!! My doctor is having another blood work done that is checking those T3 and T4 along with the sonogram of the Thyroid. She will see me again April 6 to tell me the results. I do not feel bad I feel great and that tsh is low of normal. But still normal I could see her checking stuff if it was below normal or over normal. I get so tired of doctor appts. And scans sometimes I feel like I'm being used as a cash cow. I know I need to be monitored and I do want them to catch things if they are developing so I guess I shouldn't complain.
See that is my point I feel she is just being nit picky! I do have insurance but I have to pay 3500.00 out of pocket first. Insurance is so confusing I think cause a lot of stuff doesn't count towards that 3500.00. Then we also have to pay out for stuff for my husband so to date we have paid close to 5000.00 and it's only the end of February. This doesn't include the monthly premium . I know if we didn't have insurance it would be a lot worse. But to order tests that will have to be paid by me if they are not absolutely necessary gets me upset! The problem is the area we live in doctors are few and far between. So as I said if I question her or refuse what she says she will drop me as a patient. Then I will have to travel 3 hrs one way to an appt. The doctors in our area have very high egos. I do trust them but they have big heads. The oncologist I see almost refused to take me on as a patient because I had gone outside our area to be diagnosed. See around here if you are seen in certain hospital settings people start spreading the word real fast so and so must have cancer I saw her at the cancer place. So before you even get home to tell your husband half the town knows already. ( might be a slight exaggeration) but you get my point. So I chose to go to Chicago Illinois to the cancer treatment center to get my diagnosis and find out what my options where. But I couldn't keep going there for treatments way to far . We flew there . So once I decided what I was willing to do as far as treatments went I asked the oncologist I have now if he would take me on as a patient. He said she started in Illinois let her finish in Illinois! It was like if I didn't feel he was good enough before don't come to me now. I explained it was not because I didn't trust him but I didn't want my family finding out I had cancer before I was ready to tell them . And even then I don't think he would have taken me on except a friend of mine knew his wife and interceded for me. So you get the gist of my predicament. If you choose to question the local doctors they will tell you find someone else. That someone else is 3 hr drive away. The thing is I saw my oncologist (well his physician assistance who I really like and prefer to see) before the appt. with my pcp and she says your blood works all look great ill see you at the end of June. She didn't think there was anything wrong with the tsh number. Sorry this is so long I'm just frustrated !!! To give you accurate info May of 2020 my TSH was 1.430mcIU/ml. On Jan 22 ,2021 it's 0.996. The range they have listed is 0.360- 3.740
So sorry you are dealing with this. I am supposed to have chest Xrays with contrast but am alergic to iodinated dye and so I always wonder what is really going on. All the best to you
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