Talk Cancer

Question:

– Hide quoted text — Show quoted text – The test used to diagnose bone mets is bone scan since that was clear I would tend not to worry since that was fine. The MRI was ordered to diagnosis your back pain and the mri would show any nerve impingement. Your oncologist will have  a more definitive answer. Let us know how you make out with your oncologist, Alex " Thanks to everyone who responded.  I am going for a Pet Scan on Monday.  I should get the results on Wednesday.  I always insist on having a copy of my reports faxed to me.  Afterall, the report is about me and patients have the right to receive a copy.  Usually I get a copy after the doctor has reviewed it.  Someone dropped the ball with the MRI of my spine, and just faxed it to me.  I was home agonizing while waiting for the test results so it’s just as well that I received the results.  It doesn’t change the outcome. I did have a bone scan apprx. 3 weeks ago which didn’t show anything on the spine but I had back pain so the doctor ordered an MRI which brings me to the present.  I will post and let everyone know how the Pet Scan turns out.  I’m nervous about having it done as it scans the entire body for cancer. Bye, Barbara

they got me ready for an mri but come the time I wouldn’t quite fit in that hole thing.

Response:

they got me ready for an mri but come the time I wouldn’t quite fit in that hole thing.

People who are too large for the traditional MRI should automatically be referred to the closest "open"  MRI,  which is a table with a scanner thingie above it.  If you are not claustrophobic and you just barely don’t fit, see if the techs can swaddle you very tightly, like a burrito.  Being swaddled like that considerably reduces one’s diameter.  However, you have to be pretty damn calm to do it. — Aloha, Catharine titubant sed non decidunt wiblia

Response:

AFAIK in the US healthcare records are the property of the provider, not the patient. Some states have laws requiring healthcare providers to provide copies of records on request – and they may charge a small fee for copying but in other states there is no obligation to provide records to a patient at all.  Everyone’s mileage may vary on this one, though – but in almost all cases ownership of a record belongs to the organization that created the record.

Response:

AFAIK in the US healthcare records are the property of the provider, not the patient. Some states have laws requiring healthcare providers to provide copies of records on request – and they may charge a small fee for copying but in other states there is no obligation to provide records to a patient at all.  Everyone’s mileage may vary on this one, though – but in almost all cases ownership of a record belongs to the organization that created the record.

With the passing of the HIPAA laws in the last 3 years, the patient is entitled to get a copy of all of their records. A small copying fee may be charged, but the patient still has a right to them.

Response:

"Images reveal the thoracic vertebral bodies to be maintained.  There is some minimal abnormal signal noted within the posterior vertebral bodies as well as pedicles of T6 and T7 vertebral on the left side. These appear to slightly diminished in signal on the T1 weighted sequences and slightly increased in signal on the T2 weighted sequences.  Metastatic disease in not excluded."

Could be osteoarthritis.  They look the same on many tests, including MRIs. Only a bone biopsy will let you know for sure, and that is somewhat unpleasant.  Ask your oncologist if it makes sense to get this radiated even though you’re not sure what it is. — Aloha, Catharine titubant sed non decidunt wiblia

Response:

Yes, I did have a bone scan two weeks ago which came back clear.  My onc went ahead and ordered the MRI because of back pain.  I might add that the back pain I complained about is not in the same area that the MRI indicated possible bone mets.

Oh, phew phew phew.  What a relief.  It sounds like a previous injury to the bone that has been long healed, or a metastatic site that got "killed" by your chemotherapy.  If it didn’t show up on the bone scan, I’ll bet you do not have active metastasis. — Aloha, Catharine titubant sed non decidunt wiblia

Response:

The test used to diagnose bone mets is bone scan since that was clear I would tend not to worry since that was fine. The MRI was ordered to diagnosis your back pain and the mri would show any nerve impingement. Your oncologist will have  a more definitive answer. Let us know how you make out with your oncologist, Alex "

Thanks to everyone who responded.  I am going for a Pet Scan on Monday.  I should get the results on Wednesday.  I always insist on having a copy of my reports faxed to me.  Afterall, the report is about me and patients have the right to receive a copy.  Usually I get a copy after the doctor has reviewed it.  Someone dropped the ball with the MRI of my spine, and just faxed it to me.  I was home agonizing while waiting for the test results so it’s just as well that I received the results.  It doesn’t change the outcome. I did have a bone scan apprx. 3 weeks ago which didn’t show anything on the spine but I had back pain so the doctor ordered an MRI which brings me to the present.  I will post and let everyone know how the Pet Scan turns out.  I’m nervous about having it done as it scans the entire body for cancer. Bye, Barbara

Response:

UK medical records are usually sent directly from professional to professional without going through the hands of the patient. . . . I am not sure exactly what the legal rights are today, but certainly the practice is that you can get copies of your records if you have a good reason to need them.

I have to admit that I haven’t tried to verify this except in the most superficial way, but my impression is that in the U.S., one’s health care records technically belong to oneself, not to the health care provider that compiled them.  This doesn’t mean that they must be issued to you automatically, but I gather that they must be made available on request under reasonable terms, whether you have a good reason or are just curious. I know that under HIPAA (Health Insurance Portability & Accountability Act), providers are held to very high standards of protection for any personally-identifiable health information, including explicitly getting the subject’s permission in most cases where they are to be shown to someone outside the provider organization.  Regrettably, some providers seem still to be asking us to sign *very* sweeping permissions up front. I always ask for copies of crucial test results.  It takes some study to figure out what they mean in a lot of cases, but it’s definately helped me understand my own situation better.  My medical providers do summarize the results to me, but often leave out things that are interesting if perhaps not vital for me to know.   Given a choice between getting a poor or no explanation of the results *with* a copy of the results, vs. a good explanation & no copy, I’d take the former every time.  Naturally, I’d prefer a *good* explanation *plus* a copy <g . . . . Ann T.

Response:

I work in a hospital, in the care coordination department, If you didn’t have the patient sign one waiver…you would be spending most of you time tracking done the patient for their signature……But we are held to a very high standard of sending information. And I believe the medical records belong to the institution….but you can get access at any time. Alex – Hide quoted text — Show quoted text – UK medical records are usually sent directly from professional to professional without going through the hands of the patient. . . . I am not sure exactly what the legal rights are today, but certainly the practice is that you can get copies of your records if you have a good reason to need them. I have to admit that I haven’t tried to verify this except in the most superficial way, but my impression is that in the U.S., one’s health care records technically belong to oneself, not to the health care provider that compiled them.  This doesn’t mean that they must be issued to you automatically, but I gather that they must be made available on request under reasonable terms, whether you have a good reason or are just curious. I know that under HIPAA (Health Insurance Portability & Accountability Act), providers are held to very high standards of protection for any personally-identifiable health information, including explicitly getting the subject’s permission in most cases where they are to be shown to someone outside the provider organization.  Regrettably, some providers seem still to be asking us to sign *very* sweeping permissions up front. I always ask for copies of crucial test results.  It takes some study to figure out what they mean in a lot of cases, but it’s definately helped me understand my own situation better.  My medical providers do summarize the results to me, but often leave out things that are interesting if perhaps not vital for me to know. Given a choice between getting a poor or no explanation of the results *with* a copy of the results, vs. a good explanation & no copy, I’d take the former every time.  Naturally, I’d prefer a *good* explanation *plus* a copy <g . . . . Ann T.

Response:

The test used to diagnose bone mets is bone scan since that was clear I would tend not to worry since that was fine. The MRI was ordered to diagnosis your back pain and the mri would show any nerve impingement. Your oncologist will have  a more definitive answer. Let us know how you make out with your oncologist, Alex "

Response:

Are you saying in England you can’t get a copy of your own report? What happens if you choose to change doctors you can’t bring a copy of your medical record. Techinically in the US most places reserve the right to only release your record when a person, ( a doctor, nurse, medical record adminstrator)  is there to review it in person with you to explain the results. Barbara mentioned in her message she got the report on a Saturday and was probably released by a clerk who doesn’t understand the rules. The way it should have went for Barbara is that the person releasing the record would have  made sure that a professional had reviewed the results and reviewed the record with Barbara before she got a copy of her record. In theory you medical record should have no surprises. Alex

– Hide quoted text — Show quoted text – I understand why here in UK they don’t give you the reports to read unless there is a compelling reason.  As you see they are written is a jargon which is hard to decipher and strangely gives rise to unfounded fears.  There is nothing more frightening than your imagination.  On the other hand some doctors are overprotective of their information and omit details that are rather important to you the patient.

Response:

No I’m not saying that, I’m saying that you don’t routinely get one, for exactly the reasons you give. You get to discuss the report with a consultant, but in most cases the consultant would read the report and explain the salient factors to you, rather than show you the paper.  We have had a few people coming here with technical reports they don’t understand, the handing out of ‘naked’ reports seems to be fairly commonplace over there, although clearly we all agree that the practice you describe is most desirable. UK medical records are usually sent directly from professional to professional without going through the hands of the patient.  Admittedly this system does lead to more cases of records going astray than is really desirable, and I am sure some patients would take better care of them, although certainly not all. I am not sure exactly what the legal rights are today, but certainly the practice is that you can get copies of your records if you have a good reason to need them.  We have had an entire set copied for a legal case on the request of our solicitor, and an individual report copied for transmission by us to an overseas specialist.  The release had to be approved by the consultant holding the records.  We did also have one classic case where a young registrar apparently couldn’t face giving bad news and tried to hide what was in the report and put a positive ’spin’ on it, while I was reading it upside down at 2m distance on her desk despite her attempts to conceal it. That ended in a row and my wife being transferred to another consultant. While I strongly advocate full disclosure, I would whole heartedly agree that the handing out of technical reports to patients without explanation or support is bad practice and worth complaining about. Tim

– Hide quoted text — Show quoted text – Are you saying in England you can’t get a copy of your own report? What happens if you choose to change doctors you can’t bring a copy of your medical record. Techinically in the US most places reserve the right to only release your record when a person, ( a doctor, nurse, medical record adminstrator)  is there to review it in person with you to explain the results. Barbara mentioned in her message she got the report on a Saturday and was probably released by a clerk who doesn’t understand the rules. The way it should have went for Barbara is that the person releasing the record would have  made sure that a professional had reviewed the results and reviewed the record with Barbara before she got a copy of her record. In theory you medical record should have no surprises. Alex I understand why here in UK they don’t give you the reports to read unless there is a compelling reason.  As you see they are written is a jargon which is hard to decipher and strangely gives rise to unfounded fears.  There is nothing more frightening than your imagination.  On the other hand some doctors are overprotective of their information and omit details that are rather important to you the patient.

Response:

- Hide quoted text — Show quoted text – Metastatic disease in not excluded…. may also mean that it could be another disease process such as osteoporosis……Did you have bone scan? Good Luck….alex Hi,  I posted here a couple of days ago about insensitive people.  I want to thank all of you for your responses. Today I received a fax report of a MRI I had done this past Sunday.  I have an appointment tomorrow morning with my oncologist and will bring the films with me for him to review. In the mean time, I’m falling apart with anxiety and worry. Perhaps someone is knowledgable in deciphering what this report means.  I will quote what I received. "Images reveal the thoracic vertebral bodies to be maintained.  There is some minimal abnormal signal noted within the posterior vertebral bodies as well as pedicles of T6 and T7 vertebral on the left side. These appear to slightly diminished in signal on the T1 weighted sequences and slightly increased in signal on the T2 weighted sequences.  Metastatic disease in not excluded." If anyone can help me or has had a similar report, please talk to me! What else besides bone mets could it mean?  What is the next step? I know I need to speak with my Onc, and I will tomorrow morning, but right now my husband and I are both mental wrecks. Any input will be gratefully appreciated. Barbara

Yes, I did have a bone scan two weeks ago which came back clear.  My onc went ahead and ordered the MRI because of back pain.  I might add that the back pain I complained about is not in the same area that the MRI indicated possible bone mets.  Needless to say, I’m worried sick and know that I probably will have to go through even more tests, more waiting and more anxiety before I get a definitive answer. Thank you for your input. Barbara

Response:

I understand why here in UK they don’t give you the reports to read unless there is a compelling reason.  As you see they are written is a jargon which is hard to decipher and strangely gives rise to unfounded fears.  There is nothing more frightening than your imagination.  On the other hand some doctors are overprotective of their information and omit details that are rather important to you the patient. It sounds like there is no sign of damage and no solid evidence of any cancer, but the images do not completely exclude it either.  I am not sure about the details but it sounds like there is some variation in bone density visible in the lower rib vertebrae (T6 & T7).  I suppose these might also be due to osteoporosis or osteo-arthritis.  The T1/T2 weighting stuff gives an indication of what sort of tissue or fluid is present in the ‘gaps’, but I don’t know what it implies. The (radiation) oncologist would read this report in conjunction with the bone scan: if that did not show any thoracic hotspots then I doubt if this is a cause for concern (the writer of this report will not have seen the bone scan).  You said the bone scan showed a right tibia hot spot, and that was the area you were having scanned, but this MRI report refers to a scan of your upper back.  ?.  Did the bone scan report mention vertebrae at all? Did the MRI scan your tibia? Tim Jackson

– Hide quoted text — Show quoted text – Hi,  I posted here a couple of days ago about insensitive people.  I want to thank all of you for your responses. Today I received a fax report of a MRI I had done this past Sunday.  I have an appointment tomorrow morning with my oncologist and will bring the films with me for him to review. In the mean time, I’m falling apart with anxiety and worry. Perhaps someone is knowledgable in deciphering what this report means.  I will quote what I received. "Images reveal the thoracic vertebral bodies to be maintained.  There is some minimal abnormal signal noted within the posterior vertebral bodies as well as pedicles of T6 and T7 vertebral on the left side. These appear to slightly diminished in signal on the T1 weighted sequences and slightly increased in signal on the T2 weighted sequences.  Metastatic disease in not excluded." If anyone can help me or has had a similar report, please talk to me! What else besides bone mets could it mean?  What is the next step? I know I need to speak with my Onc, and I will tomorrow morning, but right now my husband and I are both mental wrecks. Any input will be gratefully appreciated. Barbara

Response:

Metastatic disease in not excluded…. may also mean that it could be another disease process such as osteoporosis……Did you have bone scan? Good Luck….alex

– Hide quoted text — Show quoted text – Hi,  I posted here a couple of days ago about insensitive people.  I want to thank all of you for your responses. Today I received a fax report of a MRI I had done this past Sunday.  I have an appointment tomorrow morning with my oncologist and will bring the films with me for him to review. In the mean time, I’m falling apart with anxiety and worry. Perhaps someone is knowledgable in deciphering what this report means.  I will quote what I received. "Images reveal the thoracic vertebral bodies to be maintained.  There is some minimal abnormal signal noted within the posterior vertebral bodies as well as pedicles of T6 and T7 vertebral on the left side. These appear to slightly diminished in signal on the T1 weighted sequences and slightly increased in signal on the T2 weighted sequences.  Metastatic disease in not excluded." If anyone can help me or has had a similar report, please talk to me! What else besides bone mets could it mean?  What is the next step? I know I need to speak with my Onc, and I will tomorrow morning, but right now my husband and I are both mental wrecks. Any input will be gratefully appreciated. Barbara

Response:

Hi,  I posted here a couple of days ago about insensitive people.  I want to thank all of you for your responses. Today I received a fax report of a MRI I had done this past Sunday.  I have an appointment tomorrow morning with my oncologist and will bring the films with me for him to review. In the mean time, I’m falling apart with anxiety and worry. Perhaps someone is knowledgable in deciphering what this report means.  I will quote what I received. "Images reveal the thoracic vertebral bodies to be maintained.  There is some minimal abnormal signal noted within the posterior vertebral bodies as well as pedicles of T6 and T7 vertebral on the left side. These appear to slightly diminished in signal on the T1 weighted sequences and slightly increased in signal on the T2 weighted sequences.  Metastatic disease in not excluded." If anyone can help me or has had a similar report, please talk to me! What else besides bone mets could it mean?  What is the next step? I know I need to speak with my Onc, and I will tomorrow morning, but right now my husband and I are both mental wrecks. Any input will be gratefully appreciated. Barbara

Response: