[Joanna]

So many questions, so little time. Any doctors around here?

by Joanna on Thu Apr 14, 2011 7:05 pm

Hello everyone, I hope you're well.

I'd like peoples thoughts on a few things if possible, and I'd especially like to hear from any medical professionals who can offer their opinions.

As you may have seen from my other thread, my father had multiple myeloma and he died suddenly on March 30th.

A few facts:

He'd had many tests. Blood tests, CT scans, x-rays etc, and was told it was probably multiple myeloma, although I guess they needed a biopsy to confirm that. He finally had the biopsy on March 23rd. And was due to get the results on April 5th. However, the day after his death, the coroner called me and I found out that the hospital already had the biopsy results, and they did confirm multiple myeloma.

So. Question 1. Considering the rapid decline in his health, why wasn't he informed as soon as the biopsy results were available?

So we move forward to his actual death, which has been officially ruled as hypertensive heart disease. No secondary cause or anything, just HHD. The coroner told me that this is a pretty much undetectable condition and the way he explained it just sounded like it was an unfortunate coincidence that it would cause his death at the same time as he was severely ill with multiple myeloma.

Question 2. Does it not seem odd and a little TOO coincidental, that someone, who had previously been very fit, active and healthy, would experience those two things at the same time?

And question 3. Considering hypertensive heart disease comes from high blood pressure, isn't it unlikely (given all the tests he'd been having, including blood pressure tests prior to his multiple myeloma diagnosis) that there was nothing pointing to hypertension and that it was never mentioned?

I've found out from my medical student friend that multiple myeloma can cause problems with kidneys and when the kidneys struggle to regulate blood volume it can affect blood pressure, which could have led to hypertensive heart disease. So if this is the case, question 4 is this - then is there anything the doctors could/should have done to see how his kidneys were doing?

And my final question... As he was referred from his GP to the GI team at the hospital for the gastroscopy, and then referred to haematology when they started suspecting myeloma, does it seem likely that getting passed from one doctor to another was kind of a communication breakdown and that nobody was able to see him long enough to recognise the declines in his health and therefore couldn't appreciate the seriousness of his condition?

Ultimately what I'm trying to establish is this... could this have been prevented?

Sorry for such a long post!

Joanna x

[Matt]

Re: So many questions, so little time. Any doctors around he

by Matt on Sat Apr 16, 2011 8:28 am

Joanna,

I am sorry to hear about your father. My thoughts are with you.

There are several factors which may have contributed to a delayed diagnosis. I have a rare form of multiple myeloma which does not secrete M proteins. I went three years with symptoms -- back pain, rib fractures -- before I had a biopsy. Because of my age (early forties at the time) and the fact that I was not secreting M proteins most physicians thought it was a case of arthritis. After several compression fractures my new personal physician ran bunches of tests. They were all inconclusive. Finally I had a bone marrow aspiration done. The oncologist doing the bone marrow aspiration did not think I had multiple myeloma the day she did the aspiration. Her opinion was that there was probably a problem with my endocrine system. The following week, however, my tests came back positive. Keep in mind, I did not feel sick and as the weather got warmer the arthritic symptoms were improving.

You probably need more details in order to figure out why the diagnosis might have been delayed.

[jsnow527]

Re: So many questions, so little time. Any doctors around he

by jsnow527 on Mon Apr 18, 2011 8:16 pm

Joanna,

I'm really sorry to hear that you lost your Dad so unexpectedly.

Unfortunately, it is common that there is a delay in diagnosing multiple myeloma. In my case, I was going to the dr. (GP) about every 10 days complaining about pain and feeling crappy for at least 3 months before I got so sick that I ended up in the hospital. My GP still didn't know what was going on (like Matt I have light chain only multiple myeloma) and I was fortunate that he was off for the weekend and another Dr. who was covering for him recognized the symptoms.

Yes, if myeloma is advanced enough it can wreak havoc on the other systems. My blood counts were way low, my kidneys were shutting down, I had a lot of bone damage and my serum calcium levels were high. High calcium levels can cause heart and brain function problems. Kidney function and calcium levels are included in standard blood testing.

My Mom passed from lymphoma under what I believe was negligence by her dr. Even though you may have a lot of questions and play the "what if" game, you are likely just causing yourself more pain. Things can change quickly and sometimes the drs. just don't have the right answers.

Myeloma tends to be a more slowly progressing disease and there usually isn't an urgency in starting treatment. This may have made a difference in your Dad's case, but we shall never know.

I hope you can find some peace through all of this.

Janet

[Dr. Edward Libby]

Re: So many questions, so little time. Any doctors around he

by Dr. Edward Libby on Fri Apr 22, 2011 9:24 am

Hello Joanna,

I also would like to share my condolences on the loss of your father. This is a tough time for you and your family.

No one can really answer all of your questions with certainly unless they reviewed the case in great detail so I cannot tell you if his death could have been prevented. In my experience it is not unusual for things to rapidly spiral downhill within hours or days of a new diagnosis of many different diseases.

Regarding your questions:

1) It is very important that test results be shared with patients as soon as possible.Otherwise patients may suffer unnecessarily waiting on pins and needles for potentially devastating news. Some physicians are better at it than others but generally oncologists place a very high priority on this issue and do their very best to transmit the diagnosis (or exclusion) of cancer to patients quickly. In my practice when an important test is to be done (like a biopsy or staging CT scan etc) I usually ask my patients to call my office 24-72 hours after the test . The vast majority of test results are available within 3 working days. This way I can be sure that the patient gets answers rapidly.

2) Although it may sound almost impossible it is common for patients to have two serious illnesses at the same time and for both of them to be relatively "silent" prior to diagnosis. Hypertensive heart is famous in the medical world for being a "silent" killer. Patients with untreated or inadequately treated hypertension can suddenly develop a stroke, congestive heart failure or heart attack. Multiple myeloma also tends to sneak up on patients and is not apparent clinically until a bone fracture, kidney failure, infection or severe anemia occur.

3) High blood pressure (hypertension) is usually managed by primary care physician and/or cardiologists. Was your father seeing a primary care physician regularly ? Hypertension is relatively easy to diagnose and treat (blood pressures are checked on every primary care visit). Generally patients must have hypertension for many years in order to develop hypertensive heart disease. If your dad was not getting routine primary care checkups he easily could have felt well in spite of having a serious disease.

4) Communication breakdowns can occur as patients are transferred from doctor to doctor and hospital to hospital. Fortunately tools such as the cellphone, email, texting, pagers, fax machines and the electronic medical record have dramatically improved the physicians ability to communicate with other doctors. We (doctors) work very hard to rapidly assimilate everything that is known about a patient when we admit them to a hospital or when patients are transferred from one hospital service to another.

I wish you and your family all the best and hope for healing from this terrible loss.