I dont know my tumor markers, I dont know my white blood cell count. I was trusting my onco. I had my regular CT scan on 1/7 and I was complaining to my onco (I had to send her several emails and then I left two messages with her administrative asst. and then I left a nasty message and then she called. She said my CT scan was STABLE and then is when I lost it about my back pain. She then said she would have her asst. call with me an appt. Of course, the call never came and I had to call again and then got an appt. with palliative pain specialist. My next appt. with her was 2/20 which I obviously made a whole topic about. I waited an hour in that room (NEVER BEFORE)...it sounded like she was being REPRIMANDED (I think so as I stated). I never had my appt. with her really. She just said I will go ahead and tell them that you need to go ahead to get your infusion shots bc you were waiting too long now and off she went. It was odd....she was there...I seen her with the head honcho and yet I sat there and never had my appt and I was sitting in that room for an hour which never happened before. The whole thing was a bit strange. I remember asking for a copy of it which I never did before. Anyway, it was boring and I didn't really understand so when I came home I tossed on my table and then more papers got tossed on that (you know how it goes). I just found it two hours ago and am just laying here and reading and reading that portion.
I have no idea how to understand a radiology doctors report. I did read online it can be hard to understand even for doctors, but that the last paragraph the IMPRESSIONS paragraph basically sums up in laymen's terms what the radiologist suspects or sees. Does the part that states SUSPICIOUS FOR MALIGNANCY, mean what I think it may mean. Why am I feeling that sentence DOES NOT MEAN STABLE.
Please. I have to go there to see nutritionist and pain specialist tomorrow at 1 pm. I am getting very angry. Am I reading too much into what it says. The onco never mentioned that part on the phone. The non-appt. appt. that I did not have with her on 2/20. Am I being a bit over the top or does this mean that the crazy one (now my nickname until I know for sure) missed this? Or knows she missed this?
Please I know some of you ladies have become quite adept at this. I mean this part is in plain English. I just cant wrap my head around this. I will check to see if I get any responses bc I'm thinking now because I am so angry that I am going to go up to the cancer center and insist upon seeing her (not even going to email to inquire and give her time).
I just need to know what people who have some understanding of their reports and this is the most important part from online googling is this last paragraph.
Please your thoughts. I am shaking with a fury and I really do not want to have to get arrested tomorrow at the cancer center unless I have good cause LOL (not really)
It says it could be malignancy but needs an mri to identify precisely what the abnormality is.
Id focus on getting the mri and keep an open mind at the moment.
I don't know what the left anterior superior endplate is but it looks like it is a region of the L2 of your spine. So it is saying that there is a schlerotic change. It means the bone is hardening (it comes from the Greek; I speak Greek). I don't know if that means your bone is hardening due to it repairing itself or if it means something else. When it says "this is suspicious for malignancy" this means it could possibly be cancerous. But without having an MRI and bone scan they are basically speculating. I would go ahead and have the MRI and bone scan, as these will accurately tell you what is going on in your spine.
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My onco said she told me over the phone that it looked better and that the holes may be closing a little. But I never seen that report so I panicked (bc I caught her in a lie once about my CT scan report) but she said it is NOT cancerous but he is seeing that so my onco said she sees no need for me to have those procedures. That all is all right. Thanks. Greek, I would love to speak Greek. I would love to speak any foreign language. Thanks for responding.
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That is wonderful news if it means the damage to your bones is healing! I really hope that is the case. Radiology reports are not easy to interpret. I wish they were not so complicated! I am British Greek-Cypriot. My brothers and I were raised bilingual. I speak Greek with my dad and brothers, but English with my husband as he is American. Although he does know some Greek and understands more than he can speak. I hope you have a good day today. ❤
I think you need your previous bone scans to compare this one to. If the radiologist didn’t compare, it could be that there was previously lesions in this spot that are now healing which would make this no progression. However without comparison all you know is one point in time. You need to know if it was better or worse previously. Don’t get angry, just be firm in the fact that you need more information than what is currently being shared with you. At one point you may have indicated you didn’t want to know something so they decided less information was better, but now you are at the point you need more information. Just be firm but not emotional if possible. We are rooting for you. Elaine
There was no prior bone scan which it even says on the paper. For comparison, it says No prior studies are available. I am a mess now. I have emailed my onco three times and they keep coming back as undeliverable. She told me over the phone bc I was worried that it came back as stable. I was supposed to have my appt. with her on 2/20. I was in the office room waiting for her (which in the past takes about 15 mins). I was in there for an hour, then could hear her being reprimanded it sounded like by the tone of the head honcho guy, then she came in the room where I had been there and just basically said (she looked stressed and like she was going to cry) and just said to me I will go and tell the infusion room to put you first rather than you have to wait on line to be called.
She never even really spoke to me after I sat there for an hour and I could hear what sounded like her being reprimanded.
I have now emailed her last night (bc I just found this under a pile of papers and realized what it said. To me that does not sound stable.
I got an undeliverable and then did it twice more day and it came back as undeliverable and it is her email bc I have sent her emails before.
I am just upset now. More angry but now worried bc of how weird my non-appt. was on 2/20.
I think she told me that without even reading the report. She never even mentioned that to me. And now wondering why I did not get to even speak to her after waiting her hour for my regular appt.
Just really agitated now. Why are her emails coming back undeliverable all of a sudden. Thoughts are racing through my head.
We had extensive bone lesions that got "stable". CT's keep coming back as sclerotic, the onco is vague, says the bone is hardening, says if we really want to know whether there are active cancer cells in those lesions she can order a bone scan to know for sure, she says unlike soft tissue lesions, when bone tumors get addressed by rad/chemo, will usually still show on imaging as a dark shadow. But we have had so many CTs and bone scans, we don't want to expose to more chemicals/radiation. Taken in conjunction with stable blood tumor markers and (most importantly) absence of pain, we take the onco at her word.
Gosh. This sounds so frustrating aamkearns. I wish I could help. But I don't understand. Not your symptoms, but you medical team seem to be so unresponsive. To the point of negligent. All I know is sclerosis is hardening. Or density? Of the bones I assume, in your case. I have the same thing and I'm stable too.
I am not even going to get to see her today. Just the cancer nutritionist and the pain management specialist. I wonder if I would be allowed to go to the Radiology by myself and ask what it means. Plus, I am wondering why her emails are coming back as non-deliverable.
Maybe there's an IT issue, maybe their email server is down or undergoing maintenance/backup. Multitude of reasons. I don't know what email application the hospital uses, but AFAIK there's no standard option to "block" a user on most off-the-shelf suites I've used. Another reason that emails are non-deliverable to her mailbox, is that her account was cancelled/terminated.
You could try calling radiology and checking that there really are no prior scans to compare. Did you have others done in the past? Hope your pain specialist meeting helped you today
I had it out with her about four months ago and said I need to be better informed than what you provide me with. I said I walk out of here and feel like I do not really know what is going on. She apologized and said she would. Then all of a sudden there is a lady there (not in a jacket or a resident) who just stays in the corner and now types on her laptop re the discussions we have. I am wondering now if they assigned like a "babysitter" to her to take down what is said between client and her bc of a previous problem. This is something new that has been happening.
Wonder if she blocked me even though I rarely email her because she never responds. I got three undeliverables.
are you 100% sure you have the email address right? The only other thing that immediately springs to mind, if she was being reprimanded, is it a possibility that she's been fired and the email address has been de-activated? Is there someone at the medical facility who could give you some answers to that?
Re the wording of the report, I remember back when I was first diagnosed, I got hold of a report and panicked because I didn't understand it properly, the terminology they use can be scary but isn't always as bad as we think. I asked about my spine mets at the outset because in my L1, I'd already been told I had arthritis there years ago by my GP, so I asked how did they know it was mets and not arthritis. Consultant told me they don't, they just assume until they see how it responds to the meds. Hope that helps a bit. Fact is, you need someone to explain it all properly to you.
You should get a medical degree. I emailed my onco and it kept coming back as undeliverable so I thought OMG...they fired her. (Turned out to be a problem with my new updated Outlook and was on the phone with India for about an hour but he fixed the issue).
And my onco said I told you over the phone (dont remember) that the holes seem to be closing up a bit. So basically you were right, it is nothing to worry about.
This is when I hate living alone. I read it late at night, got all twisted and had nobody at home to complain or vent to. Thanks.
I’m glad things turned out much better than you thought they would. You will have to keep reminding yourself the next time something like this happens that it doesn’t always turn out bad. A friend used to tell me not to “borrow trouble”. There are so many explanations for things we read and hear that we just need to wait and find out the truth before we react. It’s hard sometimes, but essential for our quality of life to learn how to stay calm.
I was a nurse, but my husband told me I should have been a doctor or a lawyer! It wouldn’t be possible at this point when I can’t remember half the words I know until 5 minutes later. Elaine
My thoughts are straight up and emphatic!! GET A NEW ONCOLOGIST!! IMMEDIATELY!!
The radiation review is clear and your onc should have ordered BOTH a bone scan and MRI immediately upon receiving your report.
She is unresponsive, scattered brained, and irresponsible!! She needs to be reported!! Use your anger and save another cancer patient from this unprofessional moron!!
Please keep us posted! I am praying for your return to stable results and some semblance of sanity. Your onc is a train wreck and you need to get back on track with a physician who honors her oath: “First, do no harm!”
God bless you at this scary time. You are in my prayers!! ❤️❤️🙏🏻🙏🏻
I think it may have been me this time. I sent my an email last night to my onco...blah, blah, blah...why did you, etc. and when I woke up in am to look, it had come back as undeliverable so I resent it again and each time I got undeliverable. I had her email in my outlook so no way it could be wrong. So I convinced myself that she failed to mention this so they fired her (Yep, that is what I was thinking). Until I received a call from her and she didnt know why my emails were coming back as undeliverable to her. She said she told me after I called her right after this specific CT scan of my lumbar spine bc I was having severe pain and in the prior scan (which I have every three months) it had showed two holes. So she said what this rad. doctor was seeing was the scarring or possibly the closing of the holes (he had nothing to compare it to) so she said she explained that to me and that there was no reason to subject me to an MRI (she knows I am very claustrophobic) or MRI until my next CT scan. It was me again. Thank you so much Linda.
It sounds like you are not taking in all the information that she, your oncologist is giving you. It’s not an uncommon thing. You hear something and your brain goes crazy and the rest of the conversation is blah blah blah and nothing has sunk in. Can you ask a friend to go with you to the important appointments...those where you get information about scans? Or can you tape them so you can listen to them again? Or even tell your oncologist that you are not absorbing all the information that she is giving you, can she write it down for you? I take my husband to those appointments and many others take a friend. Elaine
Dear dear fellow fighter, I would definitely feel frustrated about your situation. I am so sorry you are going thru this. I suggest in spite of what appears to be some major mess ups here, to keep your cool but express your legitimate frustration. Hang in there, sending his.
If you are in the United States and have any sort of health insurance plan, you can almost always call up your health plan or primary care physician and request an authorization for a second opinion. And you can have a third and fourth opinion, too, or more! You have to have ALL your biopsies and scan reports sent or faxed to the new doctor ahead of time before your appointment. You need to see other doctors and get answers. Take your lists of questions and consider audiotaping the consults so you can review the answers later.
If you want to complain about the treatment you have received with your current provider/s, PUT IT IN WRITING AND SEND IT TO THE DOCTOR'S SUPERIOR or the health plan. Oral complaints can be fluffed off and vanish into the wind. If you want people to pay attention to you, send dated official complaints on paper (and consider sending back-up copies to others). Written complaints are taken much more seriously because they think, "Oh, no. This person is creating a paper trail. Are they about to lawyer up?" If you have a problem in a hospital or nursing home, ask for the ombudsman and initiate a formal complaint. Or go to the hospital's maIn administrator's office and ask how to submit an official written complaint. I guarantee immediate attention.
It was my bad. I copied and pasted what I typed above. I have medicare as my primary and full medicaid as my secondary.
I think it may have been me this time. I sent my an email last night to my onco...blah, blah, blah...why did you, etc. and when I woke up in am to look, it had come back as undeliverable so I resent it again and each time I got undeliverable. I had her email in my outlook so no way it could be wrong. So I convinced myself that she failed to mention this so they fired her (Yep, that is what I was thinking). Until I received a call from her and she didnt know why my emails were coming back as undeliverable to her. She said she told me after I called her right after this specific CT scan of my lumbar spine bc I was having severe pain and in the prior scan (which I have every three months) it had showed two holes. So she said what this rad. doctor was seeing was the scarring or possibly the closing of the holes (he had nothing to compare it to) so she said she explained that to me and that there was no reason to subject me to an MRI (she knows I am very claustrophobic) or MRI until my next CT scan. It was me again. Thank you so much Lynn. I just got crazy last night and then yesterday I had to go to Cancer center for something else and I looked and there were no replies. What everybody is not up early in the am waiting to see my post LOL.
Thanks for replying. It means a lot.
Have you had a bone scan to your entire body? I had one with my diagnosis of cancer in my hip which was what showed all the Mets to my bones. I have a bone scan every 6 months as this shows more than the CT scan. My oncologist explained that changes seen by CT can be healing of the bone (regrowth) If there was no previous met at that spot then I would demand an MRI or Bone Scan.
I remember how awful your last appointment was 😞. Fight for yourself and make them give you a définitive answer.
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My bad again Sarcie. See the reply (I copied and pasted) What your oncologist explained to me is apparently (although I do not remember what she said she told me in the phone conversation when I wanted the results). My onco said he (rad dr.) probably saw it closing up a bit or the scarring.
I think it may have been me this time. I sent my an email last night to my onco...blah, blah, blah...why did you, etc. and when I woke up in am to look, it had come back as undeliverable so I resent it again and each time I got undeliverable. I had her email in my outlook so no way it could be wrong. So I convinced myself that she failed to mention this so they fired her (Yep, that is what I was thinking). Until I received a call from her and she didn't know why my emails were coming back as undeliverable to her. She said she told me after I called her right after this specific CT scan of my lumbar spine bc I was having severe pain and in the prior scan (which I have every three months) it had showed two holes. So she said what this rad. doctor was seeing was the scarring or possibly the closing of the holes (he had nothing to compare it to) so she said she explained that to me and that there was no reason to subject me to an MRI (she knows I am very claustrophobic) or MRI until my next CT scan. It was me again. Thank you so much Sarcie, but I guess it was the same reply that your oncologist gave you. I tire myself.
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No worries. When our brains start thinking the worse we tend to lose control and panic. It’s perfectly normal and if you are like me I forget more than I remember. ❤️
Something similar happened to me. My oncologist surgeon told me for entire year that the lump in my right breast was not cancer. I believe and then I start having horrible pain in my back and my plastic surgeon request at MRI bc she did believe was cancer. So I went from stage 2 to stage 4 bc she didnt listen to me. If your doctor dont listen it's time to find another doctor that will care for your health and keep you alive.
I think it may have been me this time. I sent my an email last night to my onco...blah, blah, blah...why did you, etc. and when I woke up in am to look, it had come back as undeliverable so I resent it again and each time I got undeliverable. I had her email in my outlook so no way it could be wrong. So I convinced myself that she failed to mention this so they fired her (Yep, that is what I was thinking). Until I received a call from her and she didn't know why my emails were coming back as undeliverable to her. She said she told me after I called her right after this specific CT scan of my lumbar spine bc I was having severe pain and in the prior scan (which I have every three months) it had showed two holes. So she said what this rad. doctor was seeing was the scarring or possibly the closing of the holes (he had nothing to compare it to) so she said she explained that to me and that there was no reason to subject me to an MRI (she knows I am very claustrophobic) or MRI until my next CT scan. It was me again. Thank you so much Nmartinez15 for responding. If the cancer does not give me I will give myself a heart attack with my overthinking.
What is the pain then? It concerned me that you have that pain bc I was like that too. If I was you.... I will have a MRI to be save..... take a relaxing pill or something. 🙂
I have a MRI next month for my spine and I dont have pain in my back like before and the radiation doctor said he want to do it bc he wants to be sure still stable. And my onc though it was not necessary but he want. So I am glad that he is very cautious.
they are saying that there is a high probability that this is a malignancy - it needs to be dealt with - i.e. reassess medication you are on - do further testing.
That was me from the beginning and then from reading this board, I decided to start asking for mine. Bad idea. This was all my mistake and last night I was a mess. This is why bc I do not know what I am reading and then I made a mountain out of a molehill. I am going back to your way. It worked better for me. (see my earlier response below)
She said she told me after I called her right after this specific CT scan of my lumbar spine bc I was having severe pain and in the prior scan (which I have every three months) it had showed two holes. So she said what this rad. doctor was seeing was the scarring or possibly the closing of the holes (he had nothing to compare it to) so she said she explained that to me and that there was no reason to subject me to an MRI (she knows I am very claustrophobic) or MRI until my next CT scan. It was me again. Thank you so much Fighteragain18 for responding. If the cancer does not give me I will give myself a heart attack with my overthinking.
I am not that witty. I do not have a nickname to use here.
Your oncologist treated you poorly. If it were me I would probably get a new oncologist.
Many very good docs disagree about the use of MRI's of the spine. That sclerotic area is likely metastatic cancer. The pain is very real. The good news is this type of mets are not considered a vital organ (like lungs, brain, liver) it may not change your cancer treatment at all.
You deserve much better communication and treatment than you received from your oncologist. A Palliative Care doc should help you with the pain.
I have the same type of mets on the spine and other bones and also do see a palliative care doc.
♥️ Mary
She told me what he saw was just what she told me over the phone bc I did not want to wait until 2/20 that it looks like the holes are hardening or getting smaller, so he is seeing something suspicious but she does not believe I need to have those extra tests, the MRI or the bone scan for now. She said its a wait and see. I just freaked out last night. Sometimes when you are alone...you overthink which I do and I was like OMG...I wish the ladies were all up and on the board LOL......I had my regular CT scan on 1/8, this one was done just for my spine on 1/31/2020 bc of the intense back pain I was getting. Thanks so much. I tire myself LOL
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Overhead my onco being reprimanded last week. I am sure it was about me. Very long, venting. Feel free NOT to read.
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