Astro Cytoma, WHO grade 3
November 27, 2014 11:09 AM   Subscribe

So, my wife was in a bad wreck last monday, and during the course of MRI etc, they found a tumor on her brain. In spite of the hopeful, initial thought, it turns out to be a Grade 3 Annoplastic Astro Cytoma. Which pretty well sucks. The good news is, they were able to excise the entire tumor, plus a bit extra since it's location (right temporal lobe) lent itself to that surgery.

I guess my question is, if anyone has experience with this, I would appreciate any and all input. She is young (30) and very strong, and strong willed. Honestly, the wreck she had last Monday could have killed her, but as a result we found this tumor, so am thankful for that...I am just looking for some answers / anecdotes / whatever from our community. TIA.
posted by PlantGoddess to Health & Fitness (14 answers total) 6 users marked this as a favorite
Not the same thing, I know, but there is some common ground that may be relevant:

Mr Too-Ticky had a cerebral hemorrhage on October 9. This means a leak inside the brain; it generally results in losing a bit of brain tissue as it dies off for lack of oxygen. So you could say that he lost a piece of his brain, too.
This resulted in him being unable to move his right arm or leg. There was also no sensation in them, at all.

It's the month after this happened. This afternoon, I watched him swimming and woodworking. He can walk, using a quad cane; he can write and use chop sticks with his right hand. He has completely regained sensation in his hand and arm, and most of it in his leg and foot. He is now working on getting better strength and control in his leg and foot.

In other words, other brain cells have taken over the functions of the brain tissue that was lost. New connections are being formed as I write this.
Mr Too-Ticky is strong, and strong-willed, as is your wife. He is, however, 25 years older than she is, which makes it harder for him to rebuild what he has lost. But he's come a very long way already, and your wife has a big advantage over him because of her age.

The human brain is amazing. It can heal and repair itself to an unbelievable degree.

My thoughts are with you both. I'm wishing her, and you, the very best of luck and strength.
posted by Too-Ticky at 12:01 PM on November 27, 2014 [14 favorites]

Best answer: First, I am glad to hear that she survived the crash, the tumor was discovered, and the surgery went well. Those are huge things.

Second, I can only speak to the brain surgery part of this, since my surgery was in a different area (right occipital lobe) and the problem turned out to be something other than a tumor. Mine was also pretty minor, I gather. So there is also that.

My experience was that healing went pretty quickly -- I was back to work in two weeks -- but it took a lot longer to get my full endurance back -- I was on half-time for another two weeks, and that shaded into the holiday season, so it was the better part of three months before I was physically more or less "normal." It took a bit longer than that for all the symptoms of my situation to "mature" -- I have a lot of weird visual distortions, and they have changed quite a bit over time (there was a period when I was having a fair number of minor visual hallucinations -- things my brain was reading as movement that was just discontinuities in my visual field -- but I eventually learned to "reprocess that error," if that makes sense, and now that particular effect rarely happens). Given that your wife's damage is in a different place, it will manifest very differently (memory and language skills, maybe?) but expect them to change over time.

You are going to have to accept that you won't be able to understand exactly what she is going through -- I have tried to explain my visual distortions to others and, except for another person who shares damage in the opposite occipital lobe, no one ever "gets" it. This used to be very frustrating to me, but my close friends just understand that I sometimes have a difficult time doing simple things and they roll with it. Communication is a really key part of the process, and listening to her and working to address her needs in a way that makes her comfortable is more important than precisely understanding what she's experiencing. Basically, practice should trump theory.

If you can attend meetings with her surgeon and neurologist, that would be good. You might be able to get some advice on what to look for and how to help her in the most constructive way (and I've had three cancer patients in my personal life who have tended to hide significant information for a bunch of reasons -- this is not great if you are a primary caretaker). If she don't have a neurologist now, get one -- neurosurgeons are great, but they are not particularly invested in long-term care. I had a seizure quite a while after my head had healed, and your wife might be similarly at risk -- at any rate, a neurologist should become part of her yearly health regimen if at all possible, and that kind of specialist should be much better at helping you identify ongoing issues than your current surgeon.

Lastly, I was a complete asshole to a friend who came to visit and help me convalesce. It was not until after she left that I realized that my agitation and mood swings were due to medication and not some side effect of the surgery. My friend graciously accepted my later abject apology, but we would have both been better off if we had realized what was going on at the time. Really, don't take anything she says in the first couple of weeks too seriously (don't ignore it, obviously, but it's not necessarily "her" talking, so you need to let stuff go while her brain gets through the initial healing). Make sure you know what medications she is supposed to take and what side effects they might have and don't be afraid to talk to her doctors and pharmacists about anything that strikes you as odd -- even if it's annoying, it's reassuring to discover that a symptom is the result of a medication rather than physical damage.
posted by GenjiandProust at 12:04 PM on November 27, 2014 [10 favorites]

Oh, one more thing. Your wife is obviously the focus here, because it's her trauma, but be sure to look after your own needs, too. If at all possible, make sure you can get some time away even during the "heavy healing period." A break from caregiving makes you a better caregiver. I have a couple of friends with neurological problems and sometimes these work out in weird ways, and I have gone to stay with one of them on short notice just so their wife could get some time alone to sort herself out and not feel trapped by the situation. So, while your wife needs to be the focus, feel free to call on your own circle of friends to give you some space and vent your own feelings. It will make things a lot easier.
posted by GenjiandProust at 12:13 PM on November 27, 2014 [6 favorites]

I'm so sorry to hear this. The standard treatment for grade 3 Astros is radiation after surgery, hopefully the doctors have talked with you about that. My cousin had a grade 4 and died very quickly unfortunately. Please lean on your family and friends during this difficult time. It's good that they found it now, and that she is otherwise healthy. I wish you both the best.
posted by SyraCarol at 12:16 PM on November 27, 2014 [2 favorites]

My dad and a friend passed away from brain tumours but their cases were more advanced and only treatable with radiation.

I've just got one personal opinion to pass along. There may be people in your lives who try to convince you that a healthy outcome depends entirely with your wife having a positive attitude and insurmountable drive to live. I don't think that kind of pressure helps anyone.
posted by bonobothegreat at 12:30 PM on November 27, 2014 [31 favorites]

I am so sorry that your wife and you are facing this. This is obviously a frightening and overwhelming time. My advice to you would be to access the best care you possibly can. Having a treatment team who works well together, is up to date on the most advanced treatments and who can knowledgeably walk you through your options and the pros and cons of each is invaluable. I'm not sure where you are located, but places like Dana Farber, MD Anderson, Mayo Clinic aJohns Hopkins and Sloan Kettering are all excellent. An extra benefit of having a good team is that they are good at pointing you to other resources you may not know you need yet. Physical therapy, cognitive rehab, occupational therapy, etc as well as support groups for you and your wife. A good social worker who is coordinating with your medical team is worth her/his weight in gold.

I'd also like to echo that it's important to be careful about focusing on "battling" and positive attitudes being healing, etc. Everyone walks this path in their own way, and everyone makes their own choices about what is important to them in terms of what kinds of treatment to access, what parts of quality of life outweigh other things, etc. If your support system is not respecting this, you don't need them.

Wishing for the very best outcome for you all.
posted by goggie at 12:53 PM on November 27, 2014

Response by poster: Thank you all for the input thus far.

We had a great neuro team here (Carillion Roanoke Memorial), and I felt good about the treatment / surgery she was given..Her first follow-up is next Wednesday, and I will be sure to see that a neurologist is her primary doctor - that was a good suggestion.

One good thing is that I have noticed no decline in cognitive function - she is still carrying on multiple, simultaneous conversations in several different languages, and planning her next guitar building project....she has had a few little 'grumpy' moments, but I attribute those to the pain and the meds...

Any other thoughts are most welcome, and again, I appreciate everyone's time.
posted by PlantGoddess at 4:35 PM on November 27, 2014 [3 favorites]

Please report mood changes to the neuro team for their evaluation. This includes the grumpy moments and the multitasking/ambitious planning. They might be normal for someone in your wife's situation but they might not.

Best of luck to you in your journey.
posted by crazycanuck at 5:21 PM on November 27, 2014 [2 favorites]

Best answer: My friend was diagnosed with astrocytoma in 2007, while in her early 30s. I think hers was also graded as 3, but she and her husband have come to put no stock in grading or 5-year survival stats or what have you. Everybody's disease and circumstances are different, and their attitude is that statistics only tell you what has happened, not what will happen.

Kristina had surgery and radiation after the diagnosis, with chemo a bit later on. Her tumor is presnt in small clusters throughout her brain, and they scan regularly to look for changes like new growth. A few years after the initial diagnosis she had a second surgery to remove a tumor that had grown big enough to excise.

Over the years she's become unable to work because of effects on memory and language issues, and because she's on seizure meds for life. So of course, she can't drive while taking seizure meds.

Having said that, they've constructed a pretty good quality of life. She spends her days making jewelry as a hobby, which she sometimes sells on Etsy. Conversations with her tend to be like a game of Password, where forgotten words get described until others guess the word. They're good about saving money, the idea being if they ever get definitive news of a time limit, he'll quit his job and they'll go spend her remaining time in a tropical paradise because she loves to snorkel and he surfs.

But they're not waiting around for that. They take vacations a couple of times a year, and they hang out with friends and family. They just live their life. She once told me "If I lived my life like every day was my last day, I'd never change the litter box."
posted by ImproviseOrDie at 10:23 PM on November 27, 2014 [4 favorites]

This isn't a personal anecdote nor is it specific to astrocytoma, but I find this piece to be extremely well written, and would recommend it to anyone who's recently received a cancer diagnosis.

The Median Isn't the Message by Stephen Jay Gould
posted by treehorn+bunny at 11:39 PM on November 27, 2014 [3 favorites]

That really sucks, what terrible news to get unexpectedly. On the other hand, you have some time to plan the (unknown duration) rest of her life, which you wouldn't have had without the MRI and surgery. Some tumors grow unexpectedly quickly and others don't, and it's due to a horrible molecular/genetic lottery IMHO, not a positive attitude or lack thereof. I assume you are going to spend some time setting up advance directives to decide what treatments you deem acceptable. After that, you can only live your lives to the fullest extent possible in the time you have together (as should we all).
posted by benzenedream at 1:46 AM on November 28, 2014

You might check out the blog the Liz Army, for the personal account of a younger woman diagnosed with a stage three tumor. She's pretty inspirational and motivated.

I have a family member diagnosed with a stage four earlier this year and am well-versed in the chemo and radiation treatment options. I'm assuming your wife will need some ongoing treatment as well.
posted by otherwordlyglow at 8:15 AM on November 28, 2014 [1 favorite]

I'm so sorry to hear this news and I wish you both strength and focus on what's important with a minimum of annoyance and frustration over small things as you start down this road.

Everyone's experience with brain tumors is different from everyone else's, mostly because the brain has so much going on in such a small area - every little intrusion, like a blood clot or tumor, affects many different areas, but it makes little difference in the long run; your lady's trip will be unlike my father's or my neighbor's. Still, I hope you get loads of input about astrocytomas and loads of good tips about medical facilities and radiation and everything else that others have experienced that will be of help to you.

The one thing I want to say is this: Get to know her doctors and nurses so well that they never have to stop and think about who you are or why you're calling for information about this patient. Go to her appointments, ask questions of the doctors - and keep asking until you're satisfied with the answer, get to know the techs and the nurses who work with her. You want it so that if you call at 10:30 at night with a worry, your call WILL be returned, no questions asked. Recognition as your wife's advocate really matters. There may be times when she'll want to see the doctor privately and that's a different matter, of course. If that comes up, don't feel badly - sometimes it's easier to talk to a person who's just an unrelated professional than it is to your most beloved - the important thing is she needs to talk when she needs to talk. But do stand up and be counted as her support, her partner - no matter what the road is like.

Wishing you well.
posted by aryma at 8:54 PM on November 28, 2014 [2 favorites]

Response by poster: I thank you all for the thoughtful answers - at this point, she has begun the radio/chemo treatments, and is doing well (actually far better than her docs had anticipated:)
I have not left her side, so am well versed in her treatments / doctors/options...and we are perking along one day at the time.
I'm sure I'll have more questions down the road, but in the meantime, I thank you all again.
posted by PlantGoddess at 2:50 PM on January 1, 2015 [2 favorites]

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