Saturday, June 28, 2008

When Benign Isn’t Better and Malignant is Preferred

I take care of people with tumors. Often, I’m the one who tells them their diagnosis. Sometimes, it’s a disease they haven’t heard of, so one of the most common questions I get is, “Is it benign or malignant?” As you might imagine, everyone wants their tumor to be benign. Benign is better, right?

Not always.

At the moment, I’m struggling with a very difficult case. X is a teenager who has had a tumor for 5 years. In the beginning he had some pain and a lump on the side of his head. A biopsy was thought to show a lymphangioma (a benign collection of abnormal lymph vessels). The mass continued to grow, so he had surgery to decrease the size of the tumor. When that tissue was removed, the pathologist thought it was something called a granular cell tumor (also benign). Unfortunately, it grew back, and this time it damaged his eye enough to make him blind (in that eye). He had a larger surgery which relieved some of the pain and pressure, but only temporarily.

Now the tumor has grown even bigger. It was biopsied earlier this month. This time the pathologist can’t make a diagnosis. It’s been sent to other national experts for their opinions. It may still be benign. Is that a good thing? Not necessarily.

If it’s benign, it won’t respond to chemotherapy. If it’s benign, it may not respond to radiation. And yet, it’s still causing him pain and it’s still disfiguring. He misses a lot of school and is very self-conscious about his appearance.

If it’s benign, the only therapy that will help is surgery, and given how many times this tumor has grown back, it will require a complete resection to cure. And a complete resection will remove half his face. Literally.

What if it were malignant? If it were malignant, we could use chemotherapy and/or radiation before surgery. This would probably shrink the tumor significantly. Then it could be removed with a much less disfiguring operation.

I have another patient, about the same age, who has a rhabdomyosarcoma (cancer of skeletal muscle) in about the same place. Who is worse off, the patient with cancer, or the one with a benign tumor? Well, the patient with cancer has a 90% chance of being cured with a combination of chemotherapy and radiation, with minimal cosmetic consequences. The patient with the benign tumor may not die of his disease (although he could), but is in terrible pain and will require a horrific disfiguring surgery to get rid of the tumor.

Slides from X’s most recent biopsy are being reviewed at another hospital right now. I hope they diagnose a malignancy.

16 comments:

medical assistant said...

strange, i always that benign to be better!

webhill said...

Aren't some benign tumors treated with chemotherapy? I'm thinking in particular at this moment of low-grade gliomas.

Doctor David said...

This is exactly what prompted the post. Usually, benign it better. Benign means it comes out and you're cured. Malignant means it can spread, even if it all comes out. That's usually worse, clearly. But sometimes... things can be other than what is expected. Like in this patient's case. If he has a malignant tumor, we can shrink it (hopefully) with chemotherapy and/or radiation therapy, and the surgery will be much easier on him. If he doesn't have metastatic disease, a malignancy could be cured with less long term harm than a benign tumor in this spot.

Yes, webhill, some benign tumors are sometimes treated with chemotherapy, but that is the exception, rather than the rule, and it's rare that there is significant shrinkage of the tumor. More commonly we just keep it from growing. In this patient's case, that would not help him.

jaime said...

love the post!!! :) So true.

outre said...

benign = good
maglignant = bad

oh if only things were just that simple!

Susan said...

Thanks Doc for making this clear.

I've often wondered about this with my son's tumor.

I've written before, he has a LGG.

It's inoperable, (so I'm told, but recently found out about a doc that goes in there now, Wisoff in NY).

We've been dealing with so many problems that just don't go away.

Most of them are endo issues, and we spend lots of time dealing with getting his system fine tuned.

We did radiation, and so far, so good. Not much shrinkage, but stable, and for this we are BLESSED!!

But it has been dragging on for years now, his meds continue to be increased as he deals with so many issues because of this tumor.

Thanks for being sensitive to those of us dealing with the good tumors/benign!!

cdubie said...

I have a benign tumor of a parotid gland.
It has been growing for 4 years.
because of the size, i have higher chances of nerve damage to my face.
I have up to 6 months before surgery, I want to shrink it.
I am 20, and have a 9 month old daughter.
How can i shrink it if chimo won't help.

:(

pipedream said...

In 2003, my then 17 year old son had a "benign" maxillary ameloblastoma and had to have radical surgery to get rid of it. This involved removing 1/3rd of his right upper jaw along with the teeth from the eye tooth back, 1/3rd of the roof of his mouth, sinus bone and some cheek tissue. It was a horrible surgery and the aftermath was a nightmare. Thankfully not disfiguring as all surgery was done inside his mouth. It took many surgeries, including a failed bone graft in which his body was cut up for parts and 6 years to restore his mouth to full function (bone graft successful using rhBMP2 when it was finally approved for maxillary oral surgery).

Ameloblastomas do not respond to chemo & radiation and are extremely aggressive absorbing or dissolving bone and tissue as they grow. They also recur with astonishing persistence unless 1.5 cm of healthy tissue is taken along with the tumor to assure clear margins.

I know only too well the sigh of relief when the tumor is "benign" and how misleading that can be. Most of our acquaintances thought that benign meant "nothing to be concerned about". We learned and friends who traveled the long surgical path with us know differently. Many benign tumors cannot be shrugged off.

Anonymous said...

I don't feel i can agree with this. You talk about cure of a malignancy but from everything i've ever seen or heard about once someone has a malignancy there is such a high chance or a recurrence. I respect your opinion but don't malignancies almost always mean that there has already been microscopic spreads around the body? even if they don't necessarily form tumours there is a chance that they could and sometimes this doesn't show up until years later just when the person thinks they are out of the woods. I therefore don't know what you mean by 'cure.' 5-10 years isn't really a cure is it? All a person knows if they survive 5-10 years is that so far it hasn't returned so hopefully it's gone. With a benign tumour its gone, or if in this case it's not - at least there's very little threat to life and all the other organs. If you can correct me on any of this i will definitely listen, but right now how can you ever be confident that a malignancy is 'cured?' Do you believe they really can be? If so why do many of the stats suggest they can't be? obviously it does depend on the kind of cancer, but i think people are afraid of the big 'C' for a reason. thanks.

Anonymous said...

Just to add to what i've said above - there is also the issue of the raised risk of other cancers forming as a result of chemotherapy treatment - isn't there a higher risk of leukaemia afterwards?

Although there is probably hope for many with malignant tumours, i still think there are greater odds stacked against them than for those with benign ones. i know you were trying to show that sometimes benign is still not good - but i think that's as far as it can go....i don't agree that malignant is to be preferred.

Child, ten years on from chemo, develops leukaemia and family has to go through hell again. Age 15 dies. That's a cure is it? because they lasted ten years before it happened?

Doctor David said...

Hi Anonymous,

You make some excellent points. I think the most important point you make is how arbitrary 5 years is. Most people don't realize this, but the 5 year mark was chosen just for the purposes of statistics gathering by the NCI. It actually has nothing to do with the likelihood that someone is cured.

You are also right about malignancies. Although once it was thought that localized cancer could be cured by surgery alone, if only enough normal tissue was also cut out, it is now clear that that is NOT the case, and that, for the most part, all malignancies have spread prior to diagnosis. But this does not mean those patients cannot be cured.

You question whether anyone with a malignancy can actually be cured. My answer is an unequivocal YES. My very first patient as a fellow was diagnosed with leukemia in 1997. He is alive and well in 2011, 14 years later. No one has ever been shown to have their childhood leukemia relapse this late. So I think he's cured. My grandmother was diagnosed with breast cancer in 1976. She died of old age in 2009. I'm pretty sure she was cured.

That being said, clearly some malignancies are more "curable" than others. And yes, there are some malignancies that we never cure. But there are some we do. And for those patients, "Cure" doesn't mean 5 years. For them, "Cure" can mean forever.

Sally said...

Pretty interesting turn around on the saying.

Anonymous said...

Thanks for responding and for not being defensive....I've just had a lot happen in my family (not cancers but there have been some scares) and so was beginning to wonder whether there was such a thing as cure or whether the medical profession was just giving out false hope with all these treatments.

However the examples you give are compelling and give real hope - so thankyou for taking the time to reply.

On another note - conventional doctors rarely discuss diet in relation to cancers, etc....what are your thoughts on diet, on issues such as caloric restriction and other anti aging approaches through diet and supplementation (eg Dr Sinclair and 'resveratrol' - just something i was intrigued by recently) that offer the promise of PREVENTION....still better than cure surely?

I would love to see the medical profession start to proactively work to encourage prevention. Thanks again for listening and if you don't wish to reply again i will understand.

lindatja said...

Doctor David and everyone that post comments I was just recently diagnosis with lung cancer thats malignant but shrinking I'm so happy I ran across this blogg. Thank you all!!

Claudia Lorena Montes said...

I had a lumpectomy on my breast my tumor was a Granular Cell Tumor. The margins were not clean the tumor was touching my ribs. Going to start radiation next week but since is benign there is no guarantee that it would work. If it doesn't work the only other option is taking the part of my rib were the tumor was touching and I was told that is a really painful surgery. Biopsy and after the lumpectomy the results were the same granular cell tumor so we are pretty sure that my diagnosis is correct.

Anonymous said...

I am seeing a neurosurgeon on March 3rd, 2014. I am up all night doing research and I feel discouraged. I have been diagnosed recently with neurofibromatosis type 2 and had surgery of the spine/spinal cord at C1 for a bening tumor which was compressing my spine 50%. I fortunately got out with only a very weak left arm as muscles in my neck were cut on that side. I have multiple brain and spinal cord tumors. In March I am seeing the specialist about the acoustic neuroma on my left side. The tumor is 2.5cm. I am really confused as which to choose surgery which seems horrific and can leave me with facial paralysis and deafness. I am almost deaf in this ear and have a 3mm acoustic neuroma in the right ear. All says learn sign language. I am wondering if I should opt for the gamma knife instead. Can you please help me.