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Active surveillance for brain tumours

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Posted 10/24/2020 11:24 PM (GMT 0)
Hi guys,

I have been on this site since 2010 with my husbands PCa being the reason that I originally joined up. Lots of changes to how we treat prostate cancer over that time.

Now I have my own medical issues, I have been diagnosed with a brain tumour, a meningioma, it looks benign and small, about 1 cm3 in volume. It was found incidentally. Meningiomas typically but not always grow slowly.

I am trying to take what I know about active surveillance in PCa and use that knowledge in the world of brain tumours and would appreciate your thoughts. It seems to be what my neurosurgeon recommends.

Active surveillance for me has been about two things: assessment of the likelihood that it will be something else that kills you and complete clarity about what will trigger active treatment.

So at 49 years of age I am a couple of decades younger than the typical patient with an incidental diagnosis of meningioma. I am in good health. With the average life expectancy of a woman in Australia being 85, I have good reason to believe that I can live another 35-40 years. Unless this tumour has a doubling rate of more than 15 years I don’t want it in me. And if it has got a doubling rate of less than 15 years than I would prefer to do the surgery when I am younger and have less co-morbidities.

In addition to this I am concerned about my quality of life and what I want my life to look like. This tumour is in the part of my brain (the frontal cortex) that governs language, judgement, personality, behaviour. I have a job that I love, near the top of a large company here in Australia that relies heavily on all these things. I want to pull the trigger if I have symptoms - not just extreme symptoms such as epilepsy or hearing loss that I see in the literature, but subtle symptoms that restrict me from doing my job.

So I am happy to watch this tumour every three months and asses doubling time. In parallel I need guidance from the surgeon as to what symptoms that I should watch out for, I don’t want to second guess myself. In a year I want to reassess, and then every year after that.

Does my thinking seem sound given everything you know about active surveillance?

An
Posted 10/25/2020 12:25 AM (GMT 0)

An38 said...
Does my thinking seem sound given everything you know about active surveillance?

An,

First, looks like from your husband's profile, he has been doing well with his PCa and has low uPSA since around 2013. That's great!

Your thinking on your brain tumor seems pretty good to me. One thing you didn't directly address, but is important, would be the possible side effects of surgery in the frontal lobe. You have a long time to live, but that would also mean you would have a long time to live with any surgery side-effects. I'm sure you and your surgeon have (or will) talked this through.

Not sure you will run across many people here that can help much, unless they have incidentally been exposed to a friend or family member with a situation like yours, since this is mostly all PCa related, with some "side-excursions".

One thing I can offer is that a family member suffered about a decade, and later died, from progressive FTD (frontal temporal disease). The mental, emotional and behavioral changes, esp. in the last few years of life, were marked. Not to say you will encounter these -- your tumor seems small and slow-growing? But, over time, getting paired up with a good neurologist might be a good idea. They can help by administering certain standard tests to assess normal brain function with regards to physical and behavioral stability. There are also some meds, like Namenda, that have helped some. A neurologist will know.

Of the things you mentioned, "language, judgement, personality, behaviour", all were affected for my relative, except language changes came only near the end. Since you are concerned about work performance in a high-level position, it will be helpful to identify and seek help of some/a few trusted associates that can help you become aware of any changes from your current "baseline" mental/behavior/work performance. Hopefully, these would be impartial people who, btw, would not benefit if your climb up the corporate ladder slowed down. One hallmark of FTD problems is that the patient cannot self-identify changes, and may be resistant or just unable to absorb advice/input from others. It is an awfully frustrating disease. Again, you may never encounter this -- I am wishing you best of luck and health and that everything just stays stable for you, as it could very well do so.

So sorry you have to deal with this. Below are some links I found that *may* be of help, but, again, this is not really the focus of this Healingwell board, so not sure if anyone here will know which are the best links to help you. You probably have already seen some of these, but here they are anyway:

https://braintumor.org/brain-tumor-information/finding-support-coping/

https://braintumor.org/take-action/brain-tumor-support-conversations/

https://www.smartpatients.com/forums/brain-tumor

https://www.inspire.com/groups/american-brain-tumor-association/

https://community.macmillan.org.uk/cancer_types/brain-cancer

https://csn.cancer.org/forum/165

Robert
Posted 10/25/2020 3:57 AM (GMT 0)
Hi Robert,

Thank you so very much for your considered response. I agree, the surgery is serious too and comes with it’s own side effects. It’s a lot to balance. I imagine though that it’s a lot easier surgery when the tumor is small - but this is something that I need to discuss with the surgeon.

I didn’t mention this in my post but freakishly my dad was diagnosed with the same tumor last month and had it out. It’s freakish because generally this tumor does not run in families. The chance of any individual getting it in any given year is 1 in 20,000. His tumor was 50 times larger than mine and he was diagnosed because of deteriorating behavior/personality change over the month preceding. The surgeon did a great job, at 84 my dad is fully back, only the two months prior to his surgery are a bit of a blur for him. This is the same surgeon that I plan to consult - he briefly reviewed my MRI when I emailed him (I know him very well because of my dad) and said the likely way forward was active surveillance. The Impression I got was the chances of a tumor impacting my behavior/personality etc were small when the tumor is only 2% of the size of my dads.

I think your idea about getting some sort of baseline is a good one. And having conversations with trusted work colleagues but being careful about it. I will catch up with my surgeon ext week and discuss.

Thank you for all the links.

Ultimately active surveillance whether its for prostate cancer or this benign brain tumor is about making good and deliberate decisions about active treatment. My initial instinct, had it not been for this forum would have been, get this thing out of me. But I have learnt that being more considered makes sense and luckily with my very small meningioma I have time to make the right decisions.

Thanks again Robert.

An

NB:the 10 year result for my husband came back with another 0.02. So good news there.
Posted 10/25/2020 11:05 AM (GMT 0)
An,

That's weird about the familial relationship on something so rare. But looks like you are planning well for a way forward through this.

And thanks for posting the update about your husband's long, long period with residual uPSA. That gives hope to guys like me that are watching a trend and hoping it goes kinda nowhere fast. As I get older, it becomes more impressed on me, but is of course self-evident, that it's all limited in the end, and the trick is to confront the things we must but let slide the many other things that aren't going to "get us" in the end. Youth sure has that over people my age -- the sheen of invincibility.

Good luck and good health!

Robert
Posted 10/25/2020 2:16 PM (GMT 0)
An -The link below is everything I now know about your cancer type per Mayo Clinic:

https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

The term "active surveillance" probably does not apply since there is really nothing very active about next steps. They refer to it as "wait and watch" looking for any symptoms and maybe periodic scans. They also talk about radiation treatments with modern equipment vs. surgery if you ever get to that point.

Glad to hear your husband is doing well with PCa.
Posted 10/25/2020 2:31 PM (GMT 0)
One difference between AS for the two conditions is we have precise protocols for PCa AS for who is a good candidate for entering and when one should go off AS and treat. With brain tumors, I think experts will, as you say, weigh the pros and cons of treatment vs waiting on the basis of their personal training and experience.

I believe your attitude is the correct one. You may want to have a couple of consultations, just to confirm you info and check there aren't other factors to consider.

I wish you all the best!

Djin
Posted 10/25/2020 3:18 PM (GMT 0)

Hello, An38 ~~~

I always follow your posts, and give thanks for your husband's treatment success.

You have thoughtfully and carefully considered treatment options, for your new diagnosis.

Above all else, I want you to know I send to you my support & encouragement.

Form a deep and trusted bond with your medical team. That is essential.

My thoughts would be ---- if a "watch and wait" approach is recommended by your medical team, I would ask and want to know at which point would more aggressive treatment, such as surgery or radiation, be needed?

I visit my local oncologist, like clockwork, every four weeks, for my case. I visit Mayo Clinic every six months, to update scans.

This is my proactive "battle plan" that I have in place, to maintain my health goals and "stay on top of things" ---- and this is something I know you will do, as well --- a reasonable, timely schedule for follow-up appointments, and ongoing assessments, when they are timely and needed.

There's one more thought to share with you --- always wise to get a second opinion. In these times, that can even be done virtually --- scans can be shared electronically with another expert, and you can have a virtual consultation ---- from miles away.

When I first went to Mayo Clinic, I asked them to go through all my past treatments undertaken locally, to date. This gave me tremendous peace of mind.

Since then, my local medical team has formed a team approach for me with Mayo Clinic. At the top of all my medical files, it states that that my case is "co-managed" --- and it truly is --- coordinated care, in every sense of the word -- medical TEAMWORK.

Your due diligence now will pay dividends in the future. I can tell from your post, you are doing just that.

Consider adding a second opinion -- always prudent to add a "second set of eyes" and additional expertise and insight to a case with complexities.

Sending you my very best --- my encouragement --- and my support, An38.

With caring thoughts, from across the miles ~
CYCLONE -- # Iowa State University
Posted 10/25/2020 7:35 PM (GMT 0)
I received radiation therapy at an institution that recently built a (very expensive) proton radiation facility. The reason, as stated, is that proton radiation is especially suitable for brain (and pediatric) tumors. Consequently, I looked a bit in PubMed to see if proton radiation can be used to eradicate meningiomas. The answer is yes. Here is a link
https://pubmed.ncbi.nlm.nih.gov/32586500

I am not recommending this kind of treatment, but suggest that you discuss this with your medical specialists as you see fit.
Posted 10/27/2020 4:49 AM (GMT 0)
Thanks guys for the wise words. And for the care in responding so beautifully.

I think a couple of consultations and a second opinion would be wise. And plenty of treatment options too to weigh off.

You are right, I don’t have the comfort of the prostate cancer clarity of the structure around active surveillance, this looks very much like it’s a judgement call of the neurosurgeon. I just have to hope that his view on when to operate lines up with mine. I would hate to have a very high bar to cross that would significantly affect my quality of life.

Yes, my husbands 0.02 is a trend that went no where and I hope it stays that way. We have had 0.01s and 0.03s along the way so a small number may not mean anything.

Thanks again,
An
Posted 10/28/2020 1:00 AM (GMT 0)
An, I wish I had something wise and profound to offer, but mostly I just want to say hello and to let you know that I'll be thinking of you and hoping that you find the answers you need and live to that 85-year Australian average or beyond, Bill
Posted 10/30/2020 12:15 PM (GMT 0)
Thanks Bill, so kind of you. And hello!
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