do you call it "cancer"?

Aimster · Regular Joined: 03 Jan 2008 Posts: 32 Location: Nebraska

Hi everyone,
My next MRI and visit to the neurosurgeon are coming up soon (May 7). It seems very possible that we will decide to go ahead with resection at this time. That means telling people what is going on with me, something we have chosen not to do thus far (with the exception of family and a few very close friends).

So I've been thinking lately about how to tell my coworkers, and how to answer questions. The whole "is it benign/is it cancer" question is certain to come up and I'm not quite sure how to deal with it. My surgeon suspects grade II astrocytoma, though of course we won't know for sure without the biopsy. My understanding is that the medical community doesn't really view grII tumors as benign any more, given their invasiveness and propensity to recur. Are grII tumors typically spoken of as "brain cancer"?
_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

soxfan · New User Joined: 27 Mar 2008 Posts: 4

Hey there!

I find the terminology just a bit misleading when dealing with brain cancer. It isn't as expected. Boston informed my husband and I that grade I and II are cancers.......just not aggressive forms. They are considered slow growing thus they are called benign. Of course III and IV are given plenty of verbage.....anaplastic, malignant etc so there is no mistaking the results.

If I had to explain everything to family and friends again I would avoid using the word benign....Everyone immediately thinks of a small cyst that once removed is gone. I found myself having to explain several times why the tumor might come back, etc.......It seems like people latch onto the word benign and don't listen to anything else. Especially to those that are not science oriented.

Hope that helps
Alisa (soxfan)

Aimster · Regular Joined: 03 Jan 2008 Posts: 32 Location: Nebraska

Thanks, Alisa. I was thinking along the same lines as what you said ... that if you say "benign" then people think you're basically getting a mole removed Rolling Eyes

It's not that I want to make a big deal over it, but this is a life-changing event and I could really use the moral support. It's taken a real toll on me to quietly worry about this for months, acting as if nothing were wrong. Having it out in the open would be a relief in a way, although I am not excited about becoming grist for the rumor mill at work.

Wish I knew what to hope for next month. If the tumor has not unambiguously grown or changed, the surgeon will probably want to defer resection. I'm scared of the surgery, but also scared to leave it in my head, waiting to accumulate that additional mutation that causes progression. I want it OUT, and I want a pathology report that tells us what we are really dealing with. But I'm not sure if that's good enough reason to go ahead with resection. Wish the statistics were more clear about whether early resection really impacts prognosis Confused

_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

Mama 2 2 · Posted: Mon Apr 14, 2008 6:52 pm Post subject: Re: do you call it "cancer"?

Hi Aimster,

I feel for you as your next MRI approaches . . . it can be a very stressful time.

The 'cancer' issue is an interesting one, and I think you will in time find a way to relay it that you feel comfortable with - for what it's worth, we never really refer to what my hubby has as cancer - rather as a tumour. I don't know if that's because it makes other people more comfortable by not using the 'c' word, or if I just don't want to let it be cancer in my mind, but I think it's because the word 'cancer' does have so much weight to it - and I'm not saying we don't think it's a big deal, we sure know it is - but we have so many better things in our lives to focus on and by just referring to it as a tumour makes it 'feel' smaller somehow and I think that makes it easier to deal with. It's hard to explain but I hope you get the idea . . . Confused

In the begining, we were told it was a benign tumour, and I had always been under the impression that benign meant 'not cancerous', so that's what we always told people. Then when the tumour returned the last time, our neuro-oncologist kept referring to what he had as cancer, where none of the rest of our medical team had done so. That was quite a surprise, as we weren't under the impression he had cancer . . . I think that's one of the reasons why the rest of the docs prefer the term 'benign tumour'.

It has since been explained to me that any growing tumour is considered cancer, but the speed/agression at which it grows is either benign (slow/not agressive) or malignant (fast/agressive). If someone really presses the issue with me on wheter it's cancer, I'll usually explain it in the same way. It seems to take some of the emphasis off the 'c' word, though it does still make people a little more upset to hear that it is cancer. Benign tumour is accurate, but may not be as upsetting to hear for most people.

It is my understanding that grade 2's are generally considered benign, though my husband's tumour has certainly grown faster than we would like, our n-onc seems to think it's not so fast. I guess that's probably because he's not the one with the tumour in his head!

Stay strong
~C~
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~Life's too sweet to be bitter~

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Mama 2 2 · Posted: Mon Apr 14, 2008 7:07 pm Post subject: Re: do you call it "cancer"?

Ha, me again . . .

I started typing my reply a few hours ago and didn't get a chance to read your and soxfan's other posts until mine went up - It's a good point you both make about people thinking benign means it's not a big deal, but we have found they still do. I think whenever you're dealing with a tumour in your head, benign or not, people do take it seriously.

You are absolutely right, it is crucial to have support and you need to be sure to surround yourself with people who will provide you with that. This is obviously a good place for it, but you need some in person as well. It's weird, I find a mix of wishing everyone knew so they all could provide some words of encouragement, but sometimes I wish no one knew so it would feel like life was normal again. Another one hard to explain . . .

~C~
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~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

Aimster · Regular Joined: 03 Jan 2008 Posts: 32 Location: Nebraska

[quote="Mama 2 2"] It's weird, I find a mix of wishing everyone knew so they all could provide some words of encouragement, but sometimes I wish no one knew so it would feel like life was normal again. Another one hard to explain . . . [/quote]

Thank you for that, Mama 2 2!! It really sums up how I feel. I'd like to be rid of the burden of carrying this "secret", but I will be trading it in for the new burden of life definitely not being normal. Can't win either way.

I suppose this may come clearer as we see what kinds of questions people ask. We gave my parents the upbeat version in January when I was diagnosed, but apparently did such a good job that my mom really, truly thinks this is like a tonsillectomy. So she's happy, and not worried, but has no clue that I need support or someone to talk to. I don't want to worry her so I haven't clued her in. On the other hand, I gave my boss the upbeat version also and he proceeded to do his own internet research, so he is thinking the absolute worst and looks at me with the big puppy dog eyes.

It means so much that I can come here and get support from people who really understand Smile

_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

brainman · Posted: Mon Apr 14, 2008 10:46 pm Post subject: Re: do you call it "cancer"?

Amy, way back in 1992 when I was first diagnosed, I was told that a grade I of any type of tumor was a benign tumor, a grade II was borderline in terms of aggressiveness but still classified as malignant. I think that is still how most neurosurgeons distinguish between the two.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

plugh · Regular Joined: 18 Oct 2007 Posts: 14

This probably just adds to the confusion here so I appologize but here's the info I have. I had a Gr II Oli removed in August 2007. Surgery was brilliant - sent home 3 days later. A few days after surgery the surgeon called me himself with biopsy results and told me it was a Gr II with the deletions and "benign" - could come back and at a higher grade. Didn't really understand how that equated to "benign". Anyhoo, breathed a sigh of relief only to have the Neuro-oncologist at the first follow-up tell me that only Gr I's are considered benign and I did have cancer so I had a whole other issue now to deal with. the Neuro-oncologist actually said that all brain tumors can recur and often come back as a higher grade so all brain tumors could be considered malignant. Still somewhat lost by this but I think that only Gr 1 are considered benign. Yes, I told everyone "benign" when I first got that diagnosis and now wished I hadn't since I have to re-explain - I personally feel that familty, freinds and work would want to understand my situation.

brainman · Posted: Tue Apr 15, 2008 9:00 am Post subject: Re: do you call it "cancer"?

In the case of brain tumors and only in the case of brain tumors, I think the distinction can be confused because both can be so very serious; either a benign tumor or a malignant tumor (cancer) will increase the inter cranial pressure and can affect a persons mood, personality, and cause a kinds of physical symptoms. The only difference is treatment options and how fast you should start treatment. This might be an exaggeration, but just a slight one.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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