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brain tumors

Sty
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I have two tumors that have grown significantly over the last year. That's the first time they've changed in size in over 10 years. I don't know which route to take and would like some insight from as many as will comment. Should I (a) consider radiation; (b) consider surgery prior to having symptoms (which at the moment I'm not having symptoms); (c) wait until I have symptoms and surgery is a necessity? I would welcome any additional suggestions as well.

Explore topics in this discussion:

Cancer Surgery Brain tumors Prozac Seizures Stress Hemangioblastoma

14 replies

Steven

Actually Steven's mom here...but that's another story!

Here is our question related to brain tumors: We are now in the stage where the tumor has a cystic component. The cyst is actually a little larger than the tumor. Do the cysts grow as slowly as the tumors do, or are they more unpredictable?

Also, I've heard so many times that you want to wait for symptoms before you have surgery. But, we've also read that you don't want to wait until damage is permanent. So, how do you differentiate the two? When are symptoms of a cerebellar tumor/cyst just symptoms and when are they indications that things are worse?

Thanks for the answers...as always we would know so little without everyone's input!

gale

I can’t comment on which procedure to have. I’ve never had radiation. There are other things to consider as well. Is there a cystic component with either of these tumors? Have you had previous brain surgery? Is there a lot of scar tissue?

When you said it grew significantly, what does that mean? After not growing at all for 10 years, then having it grow within a year, I think it is all significant. If you see a continuous growth pattern ands it becomes large enough for a surgeon to remove easily, then why wait for……………

If you pay close attention to your body, you will know what a symptom is. It depends where the tumor is as to what symptoms you might experience. Did your doctor tell you what to watch for?

Can you figure out if anything that may have caused the growth over the last year, i.e. hormone changes, stress, trouble breathing? For example, it it’s stress, maybe you can reduce the stress and not even need surgery.

Gale

gale

Hi Steven's Mom,

Cysts can be unpredictable. I once had to undergo brain surgery because of the cyst not the tumor. Sometimes the cyst causes more problems than the tumor.

Gale

inapeoplehouse

I too had to have the surgery due to the cyst. The cyst was the size of my fist, and the tumour itself was no more than a pimple on the cyst!

For me, If I had the option of bypassing the symptoms?! I would have in a heartbeat.... In the end I has to use steroids to control the pressure just to make it through the day without being in agony... The steroids are what caused 90% of my permanent damage, though I could not have made it to my surgery date without them. I now have a huge weight gain struggle to take care of, that won't budge after a year and permanent eye damage from coming off the steroids too quickly. The tumour pressure itself has caused permanent loss of feeling in my left foot. My tumour was a posterior fossa cerebral tumour. There were numerous symptoms that came with mine and many symptoms that I did not realise were sumptoms until I was diagnosed, loss of fertilty, headaches, vision difficulty etc....

I did not have a choice in which route to go. I have heard the radio method is optimum if it is a choice... The radio increases the size of the tumour before it decreases it and it is a lengthy time before improvement is seen from what I recall. My need was too urgent to consider it.

In all honesty, had I not had side effects, the surgery itself was not that bad.

All the best to you!!

Raeanne

Tumors with cysts often do not respond well to radiosurgery. Only your medical team would be able to determine whether or not your son is a candidate for radiosurgery and if open surgery would be more beneficial

And whether or not one should wait for tumors to become symptomatic before resorting to surgery, is not something I could answer and would again be something for you to discuss with your medical team. I've had tumors treated before they became symtomatic as well as after they had become symptomatic. I hope you get the answers you need from your doctors.

Raeanne

Rick

Over the years, I have 5 brain tumors removed by conventional surgery and another two addressed by Stereotactic Radiosurgery. I have always been told by my nurosurgery team that it is always best to remove the tumor before I got sick from my sysmtoms but I have not always been that lucky. A couple of times, my surgery was scheduled before I had symptoms then symtoms came on so fast, my surgery date had to be moved up and I was still in rough shape by the time the tumor(s) were removed. I also had a tumor that showed rapid growth in a relatively (6 months) short period of time. Steriotactic Radiosurgery was chosen in part because of the tumor location. The tumor did have a small cystic component to it but I decided to take the chance. It took another 6 months for the tumor to stop growing completely but it finally did and early-on, we could see the growth had slowed down. I had no symptoms from that one but it could have certainly caused major problems if I had waited.

Your team should be able to help you decide which route to take, radiation vs. conventional, there are ,many factors to consider, size, location, etc. Only you can make the final decision as to wait or not but if the tumors continue to grow, you know they will be a eventually be a problem. Why wait?
Good luck

Sty

My last brain surgery in 1994 was because I had a cyst on a tumor and that was the concern. I have been told that if a cyst were to rupture, the fluid from the cyst could be very dangerous.

I have also heard that if a tumor is not bothering you that you should not bother it. I was going with that concept but just recently (two months after being told I had two tumors that had grown significantly), I began having symptoms, i.e. pressure in my head when I sneeze, cough, bend over. The only symptoms I have ever experienced with VHL is headaches.

Sty

I went to a radiation oncologist last week and he indicated that I was definitely a candidate for stereotactic radiosurgery but that I needed to have it right away b/c the two tumors in question were growing rapidly and once they got a certain size it wasn't beneficial. My tumors grew from 1 cm to 1.8 cm within a year.

It's funny that you ask if anything may have caused the growth over the last year. I was thinking about that today. The only thing that comes to my mind is that I began taking Prozac several months ago (b/c of stress!). It would be very interesting to know if the growth of my tumors is due to a change in my lifestyle.

I began having symptoms this past week. I feel pressure in my head when I bend over, sneeze, cough, etc. It's definitely time to do something and I'm really encouraged about having the stereotactic radiosurgery. I hope to have it within the next week or so. I am going to ask my doctor is he can treat the smaller tumors that I have to prevent/stop any further growth.

gale

When you bend over, sneeze, cough, etc., be sure you exhale and don't hold your breath.

I wish you the best and keep us posted.

Gale

Spobear123

My husband is a 31 year servorior of Radiation that was done. We went 30 year before an other brain tumor that isn't cancer so are out come is better still there damage done from these 5 surgery he had. He been very happy with Radiation he watch his sister-in-Law go throught chemo and so happy he chose Radation. Sandra

jmathison

I concur with the other blogs that there are very specific guidelines as to when stereotactic surgery is feasible. Delayed reactions to stereotactic surgery (such as swelling and adema) can cause severe problems so please be diligent in researching whether or not that's the best option for you.

jmathison

I have had surgery both after and prior to symptoms surfacing. The reason surgery was required before symptoms occurred was because of a narrowing of the main ventricle (I think that's the correct term) that carries fluid to and from the brain. Another concern is the onset of seizures caused by increased pressure within the brain (I don't know how frequently this is an issue with VHL).

Of the 7 brain surgeries my mom and I have had, 6 surgeries were required because of an increase in the size of the cyst. Tumor growth in only one case was the reason for surgery. In our cases, cysts have always grown more rapidly than the tumors.

This is just my opinion, but a symptom is a sign that pressure is being exerted somewhere in the brain so the tumor/brain needs to be monitored closely. It doesn't necessarily mean surgery has to be performed immediately.

Hope this is helpful. It is SO nice to hear others' experiences, isn't it?

plischeske

Hello Steven & Steven's Mom,

I see this posting was back in January, but people are still responding. I was wondering what the status of your situation is at this point. Also I wanted to share my own experience with a cystic tumor.

I have a tumor in my cerrebellum very close to my brain stem. Back in 1994 it produced a cyst which caused many problems for me. At that time I had surgery to try to remove the tumor and the cyst. They couldn't remove the tumor as it was to risky so they deflated the cyst. I then had radiation done on the tumor. Things were fine for 12 years, then wham the tumor started producing the cyst again. I had it drained a year ago March, but it came right back.

This last March I had surgery in which they placed a shunt in the cyst for it to drain into my abdomen. I don't know if anyone else has had this procedure done. If so I would love to hear from you.

It has been 3 months, and so far everything is fine, my balance is slowly getting back to normal. The hope is that this will work or they will have to operate to remove the tumor.

I don't know if I have helped with anything or maybe just added a new perspective to things. I would be very interested to know how things are going for Steven.

Pam L.

SHAWN1

I was reading through the posts as I have only been an Inspire member for a short time. I am in the same dilema. I haven't done a great job on monitoring myself and I had my first MRI in probably 10 years. It showed 2 tumors. One is a 5mm hemangioblastoma in my left cerebellum and the other is a 1.4cm angioma in my right cerebellum. Is there any way to tell how long they've been there by looking at the MRI? I have had one hemangioblastoma removed (rt cerbellum) 15 years ago.I'm confused about conventional surgery vs. "cyber knife" etc. Any new feedback?
Would appreciate any input.

Thanks,
Shawn1

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