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Dr. Andrew Rynne

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Can Glioblastoma Multiforme reoccur after recovering ten years ago?

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Dr. Dariush Saghafi

Neurologist

Practicing since :1988

Answered : 1822 Questions

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Posted on Thu, 2 Aug 2018 in Cancer
Question: Hi there, my best friend was diagnosed with a Glioblastoma Multiforme in 2005 at the age of 27 and given less than 2 years to live. She had a total resection and is still alive now at the age of 40 without ever having had any recurrence!! She was diagnosed at Addenbrookes. Even after she had survived 10 years the doctors there gave a bleak prognosis that it would definitely come back one day. My question is, are they just being cautious by saying that? Is there a person anywhere with GBM that has survived this long without recurrence? Anyone over 30/40 years? Is there a chance she could actually survive/be cured? There seem to be a lot of long term survival stories on the internet but I'm not sure how accurate they are and it's all very confusing. Plus all cases I've read about seem to involve recurrences, which she hasn't had. She didn't have any lasting symptoms, apart from a slightly rubbish menory at times! I am a pragmatic person so I can handle to cold hard facts, I just want to know if there is a chance or it's a case of it will 'get her in the end'. Thanks.
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Answered by Dr. Dariush Saghafi 1 hour later
Brief Answer:
GBM is generally a bad player when it comes to brain cancers...BUT....

Detailed Answer:
Good afternoon and thank you for your question.

It is a very happy day when I can hear the story of a patient as young as your friend was when she was diagnosed with GBM who is still in remission at age 40. Statistics are what they are....numbers....that do not really apply to INDIVIDUALS, however, human beings always are curious (especially parents and patients) about the ODDS, the CHANCES, the PROBABILITIES, and we tend to live our lives around what we EXPECT to happen. So, doctors often (daily) find themselves in circumstances where just telling a patient or family member, "We're going to do our very best and let's wait and see what happens" isn't enough of an explanation and we are then, pressed or sometimes may even feel compelled (especially if the statistics are GOOD NUMBERS) to offer predictions.

That's why I never feed in to those sorts of situations when it comes to "guessing" when someone is going to die or not when in hospice, come out of a severe trauma or not, etc. It's just not a thing that giving a number ever seems to work for...precisely for what you're referring to....There will be individuals who "beat" the odds and live incredibly productive lives, have families, and go on to be a ripe old age, before perhaps even succumbing to something entirely unrelated.

To put it another way, there is always going to be that 95 year old grandmother who smokes 2 packs of cigarettes per day for the past 75 years who will never have suffered from COPD, ALLERGIES, OR CANCER....right? How does one explain such an individual? But the truth is....doctors would never use that example to try and help counsel patients who are smokers to get off since we KNOW VERY SURELY that they are an INCREDIBLE HIGH RISK for mortal disease, right?

It's the same here...when a 27 year is given the diagnosis of GBM...and of course, depending on other factors...was it located and treated in only one place in the brain, or were there multiple "spots" of GBM, what did the pathology look like in terms of the severity of the cancer itself...some can LOOK relatively benign which gives one set of probabilities to predicting future events or they can LOOK HIGHLY AGGRESSIVE which then, gives one much poorer prognostic information.

Then, there is response to treatment, types of treatments available, family history, etc.

I cannot tell you what all the factors were that went into the doctors' decision to say that she had a poor prognosis or that even at 10 years out she still had a poor chance of living cancer free. That information is only known to the doctors. But I can say that in your friend's case...her constitution, her instinct for survival, amount of prayer or religious faith she may have, and even the LUCK she had in getting the surgeon she got, or the oncologist she got who MAY HAVE decided to try something a little different, a little off the beaten trail, whatever that seemed to be the difference maker to her still being alive and well.

The cold hard fact in this case is that your friend beat the odds at age 27 and apparently she beat the odds at age 37. You are asking for FACTS in the future...but I can only give you probabilities. Facts, occur at the moment knowledge is known..meaning that we gotta wait for the next year, 5, or 10 years before saying how your friend will respond, right?

It is a 100% guarantee that we all will succumb to SOME health malady whether it is GBM, pneumonia, or complications from something as ridiculous as a hang nail that cut into the big toe of a perfectly healthy person. GBM's are traditionally felt to be aggressive though the truth is there are graded aggressive types which I mentioned earlier. The problem is that there is very little guidance to survival rates or chance of mortality that goes beyond the 5 or even 10 year mark. Your friend so far has made it to 13 and seems to be trucking on.....so that's great.

More is being revealed all the time with respect to biomarkers, and genetic protectors that may switch on or switch off thus arresting or initiating...or perhaps in this case, RE-initiating the sequence of cancerous growth....right? If your friend were interested in learning if she possessed any of these more newly discovered features or factors she would probably need to speak to a well versed oncologist or even better a genetic oncologist who could perhaps even test her. In fact, I'd go so far as to say that your friend might be an EXCELLENT CANDIDATE for someone to study if she really is 13 years out from an AGGRESSIVELY CANCEROUS form of GBM to which she simply didn't succumb to despite everyone's prediction. She may possess something special that could be identified. Many more things about GBM's are known today about genetics and body defenses against these tumors than were known when she was diagnosed.

She could be of some interest to someone if she made herself available for testing or review.

But for now, we know she's passed the 5, 10, and is coming up on the 15 year survival mark. There are no data I'm aware of that go beyond even 5 years when discussing GBM survivability so perhaps, she's truly beat the thing....perhaps. If you or she are interested check this link out and look for the videos on molecular and genetic testing as it applies to treatment response and survivability. This is the latest information on the topic and may very well be part of the explanation as to what is going on in your friend.

Good luck and congratulations to your friend for not giving up.

http://www.abta.org/brain-tumor-information/anytime-learning/

If I've provided useful and helpful information to your questions could you do me a huge favor by CLOSING THE QUERY and be sure to include some fine words of feedback along with a 5 STAR rating? Again, many thanks for submitting your inquiry and please let me know how things turn out.

Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this topic or others.

This query has utilized a total of 30 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.


Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Follow up: Dr. Dariush Saghafi 9 minutes later
Thanks so much.

So does that mean that you are unaware of any other person surviving GBM this long?
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Answered by Dr. Dariush Saghafi 1 hour later
Brief Answer:
In my PERSONAL experience? I don't have GBM patients of that longevity

Detailed Answer:
If you are referring to my personal practice experience and training then, YOU ARE CORRECT that I am unaware of any other person surviving CONFIRMED GBM for >= 13 years like your friend.

However, there are anecdotal reports of survivors published who are long term survivors. Consider the following article published in 2013:

Neuropathology. 2013 Oct;33(5):576-81. doi: 10.1111/neup.12022. Epub 2013 Feb 13.

A case of more than 20 years survival with glioblastoma, and development of cavernous angioma as a delayed complication of radiotherapy.

Fukushima S1, Narita Y, Miyakita Y, Ohno M, Takizawa T, Takusagawa Y, Mori M, Ichimura K, Tsuda H, Shibui S.
Author information

Abstract
Glioblastoma (GBM) is the most common malignant CNS neoplasm, the prognosis of which remains poor even after multidisciplinary treatment. The 5-year overall survival rate of GBM is less than 10% and has remained unchanged for more than 50 years. , Here, we report the case of a 24-year-old man who is still alive 21 years after surgical resection and chemoradiotherapy for GBM. This patient developed a cavernous angioma 19 years after the initial surgery as a delayed complication of radiotherapy. The diagnosis of the initial tumor was confirmed by histopathological review, which indicated that the tumor had immunohistochemical and genetic profiles consistent with GBM. Long-term survival in the case of this GBM patient likely resulted from a combination of factors, including hypermethylation of the MGMT (O(6)-methyl guanine methyl transferase) CpG island, young age at diagnosis, good performance status, and complete surgical resection of the tumor. To the best of our knowledge, this case report describes one of the longest-surviving GBM patients and is the first on radiation-induced cavernous angioma in a GBM patient.

So as you can see from the above abstract, what I mentioned in my previous explanation of there likely being a complex interaction between multiple factors (none of which can be known at the time the doctors were diagnosing/prognosticating your friend) is the preferred explanation for when people "beat the odds." However, isolated reports as you see here are not necessarily what you're asking about from what I gather.

Also, side note: This abstract points to complications that arose after 21 years post-therapy....again, not exactly what you were asking about in terms of the GLIOBLASTOMA itself recurring....but there are definitely other things that can happen as a consequence of the treatments.....

So to summarize,

1. I am unaware of global statistics or demographics which describe the survivability rates for GBM patients who are beyond the 5 year mark. Virtually all statistics that I know of speak of 5 year survival rates and percentages since that seems to capture the vast majority of patients in this category. 10 year survivors as a group are not even easy to find in aggregated form.

2. Recurrence rates of GBM after >10 years are very difficult to ascertain in aggregated form, however, isolated reports can be found that speak of long term survival as well as COMPLICATIONS that occur in long term survivors.

3. I am personally unaware of patients in my practice or during training diagnosed with GBM who have survived as long as your friend. A Neurological Oncologist would likely have a better sense for those types of statistics.

Once again, if I've provided useful information to your questions could you do me the very much appreciated favor of CLOSING THE QUERY and including POSITIVE words of feedback along with a 5 STAR rating for our encounter? Again, many thanks for submitting your inquiry and please let me if you have more questions on this topic.

Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this theme or others.

This query has utilized a total of 90 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.




Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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