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Is your tumor in a parietal lobe?

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

Have any of you had (or have) a tumor in a parietal lobe (left or right)?

I am interested in how tumors in this area affect other brain cancer patients, regardless of tumor type.

What symptoms did you present with?
Have you had seizures?
What lobe is affected?
Are you right handed? Left handed? Ambidextrous?
What type of treatment did you have, and how has this affected your:

  • depth perception
  • balance (vestibular system)
  • sensory perception
  • awareness of your body in space (proprioception)
  • language skills
  • writing skills
  • calculation skills

If you had surgery, was your sensory and/or motor strip affected?

Liz

OCMenno's picture
OCMenno
Posts: 26
Joined: Mar 2009

My wife, 29, has an astrocytoma grade 3 tumor in the right parietal lobe. She was diagnosed in January of 2006, had surgery, radiation, and chemo (temodar). Prior to the diagnoses, she had problems with headaches, spacial perception, balance, and finally grand mal seizure. That is how we discovered the problem. She is right handed. She is currently using valproic acid to prevent seizures. She has the feeling of starting to go into a seizure on accasion but it usually passes fairly quickly. I'm not sure if depth perception is the same thing as spacial perception? She no longer has these problems but before the surgery she often reached out to grab something and was off by a long shot. She sometimes had to try several times before hitting her target. She has not had any problems with sensory perception, proprioception, or language skills. As far as writing and calculation, it is difficult to say. She has never been able to read and write and has always struggled with even the most basic calculations. We are blessed that she has responded so well to the surgery and treatments. The only problems she has now as far as we can tell are fatigue, some headaches, occasional seizure symptoms?? (sudden tingling, weakness on her left side), and short term memory problems. The tumor is growing again and it appears that these symptoms are becoming more frequent.

Hope this information helps in any way.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Hi, Liz,

I had a tumor on my left parietal lobe, metastasized from my lung, found because an alert nurse-practitioner listened to me when I said I'd had a little trouble in the doc's waiting room, trying to point at something, Just five minutes of not being able to direct my right arm, and then it was all back to normal again; the oncologist calls this a seizure, and although it never happened again, it was scary! I'm right-handed, btw.

(OCMenno I see your wife has had the same experience, somewhat)

I had the tumor removed on a Tuesday and was home by Thursday, back at work Monday :)
After the staples were removed I began a 25-day regimen of radiation - 20 days of whole-brain, and then 5 more Tomo-Therapy sessions. I've had no repercussions from the surgery as far as I can tell except that the panic attacks I was struggling with for some months pre-surgery are now gone, as if they were excised along with the tumor. The neurosurgeon just laughed when I told him this...

It's possible that my short-term memory has been affected by the radiation some, it's hard to say as it was already not so great :) I certainly have to put more effort into remembering little things, but I couldn't say how much of that is normal aging and how much (if any) is from radiation.

I'm currently taking Tarceva, which I re-started on a lower dose/every other day schedule after an intense reaction to the original dosage.

So, what about you, Liz - tit for tat! (and you guys can stop snickering, now!)

Deb

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

Hi, Deb.

Thanks for sharing your story (you too, OCMenno).

Presenting symptoms:
My only symptoms were two grand mal seizures (the crazy, flailing, unconscious type).

Affected lobe:
Left parietal

Seizures:
Since the tumor was in my left brain, seizures materialized on the right side of my body. I've had three grand mal seizures, and a myriad of partial seizures. After I was put on anti-epileptic drugs the seizures settled down and varied from visible jerking of the limbs and chest (motor seizure), to having my entire right side loose the sensation of touch (sensory seizure), and a coordination seizure where my right hand would be unable to judge the distance of objects in space and grasp them (similar to what you were talking about, Deb). Partial seizures lasted as long as 20 minutes (in a Starbucks!), to 20 seconds. Thanks to drugs and surgery my seizures are controlled and no longer freak me out!

Handedness:
I am ambidextrous.
If you're right handed and your left brain is affected, after surgery you may have problems with speech/writing/calculation. The opposite is true if you're left handed. This presented a problem for doctors and me ... we didn't know which lobe contained my communication and calculating skills.

Treatment:
Craniotomy, 9/17/08
Craniotomy, 2/6/09
Temodar, began 3/2/09

Effects of treatment:
* depth perception: only noticeable when I'm going down stairs
* balance (vestibular system): I have a hard time staying balanced if my eyes are closed
* sensory perception: I have minor sensory loss on the right side (things just feel different)
* awareness of your body in space (proprioception): this is noticeable about once every other day; I'll move my hands to do something on autopilot and as soon as my right hand comes into view I'm startled for a second, wondering, "Who's hand is that?"
* language skills: not affected
* writing skills: not affected
* calculation skills: not affected

After surgery:
Sensory strip was slightly affected, motor strip is fine.

It has been a month since my second brain surgery and I feel fine! I left the hospital moving slowly with a cane, and I ditched the cane about two weeks ago.

I'm happy to be here.

Liz

skinner's picture
skinner
Posts: 15
Joined: Aug 2007

Presenting symptoms:
One grand mal seizure,not the unconscious type but cant breath and heart beat in throat and flailing.
Tumor on left side but with seizures on both, right hand temp. useless and now just three fingers perm. not useful.
Now since (the_liz_army) hit the nail on the head with perfect wording as my symptoms please allow me to use words from her.
-- After I was put on anti-epileptic drugs the seizures settled down and varied from visible jerking of the limbs and chest (motor seizure), to having my entire right side loose the sensation of touch (sensory seizure), and a coordination seizure where my right hand would be unable to judge the distance of objects in space and grasp them (similar to what you were talking about, Deb). Partial seizures lasted as long as 20 minutes.
-- I am right handed so my right hand is yes affected.
Treatment:
Craniotomy, 011/23/07
interfuron alfa 1 month (I couldnt handle 12 months because after 1 month I lost 52 lbs and caught pneumonia
went totally organic since---!!!

I to also:
-- Effects of treatment:
* depth perception: only noticeable when I'm going down stairs
* balance (vestibular system): I have a hard time staying balanced if my eyes are closed
* sensory perception: I have minor sensory loss on the right side
language skills: not affected
* writing skills: not affected
* calculation skills: small affected
It's been 16 months, I walked out of the Hospital 2 days after surgery and yesterday as every month since the last 6 months, I hike 8 miles with my Boy Scout crew. I admit I have my good days as well as my bad days. and my (Bed) days. Some pain but mainly thats from other surgeries from my cancer. 462 stitches and staples, 11 tumors.

I want to say thank You all for allowing me to write here and reading your words, it's nice to be among people.

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

Hey Skinner,

Thank you for sharing. I know this is terrible, but is nice to hear from someone with similar experiences. I live in northern California and about three weeks ago I met a guy who also has a tumor in the parietal lobe. Needless to say, we had a great time bonding over our maladies!

Liz

skinner's picture
skinner
Posts: 15
Joined: Aug 2007

Yes it is nice to hear from some one with similar stuff going on. hey Just how far in northern cali are U? I am up in Red bluff, near redding... Maybe if you were near we could shoot down some Organic coffee? hehe.. Take care.. ~~Skinner~~

helenhamill
Posts: 1
Joined: Oct 2012

have been having worsening migraines for about 18 months. lasting longer, and for last year has involved neurological symptoms.
Have numbness during headaches - generally all LHS head.face. neck.
And speech is difficult - like having a few drinks and trying to sound sober??

migraines generally on LHS eyebrow area, now also happening on RHS eyebrow.
And have occasional shooting electric impulses into head .

(this may be totally irrelevant but at time Right foot randomly reflexes/jerks?

One of recent migraines lasted 10 days - so was referred for MRI.

Results showed transverse cyst in high parietal region LHS.
Being referred to neurosurgeon.

Help?
Disassociated during appointment...so asked NOTHING!. was delighted they had found a reason for migraines .

Helen

jenben59
Posts: 142
Joined: Jan 2009

a grand mal seizure in 2005(no other symptoms) went in for an MRI and they found a brain tumor. Had 1 surgery and only part of it removed. It was a benign Astrocytoma. About a year later they had to remove the rest of it along with my amygdala, part of the hippocampus and something eles.(can't remember) My side effects (still) is short term memory, difficult to drive(judging distance) I was finally released in August 2007. I though, pretty good I could have had cancer. The really hard part of this is in December 2008 I was diagnosed with stage 3c colon cancer. This blew me away. Again, no major symptoms. I started researching this and found two medical articles relating astocytomas and colon cancer. Does anyone have information on this? The tumor was located on my right side. I had surgery to remove it and am on 6 months of chemo treatment every two weeks. If anyone can comment on this or tell me where I can find more information on this, I would appreciate it. Thank you.

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

jenben59,

I haven't heard anything about this, but maybe you can post this question on the main board to solicit more responses.

Liz

Pally2nite
Posts: 1
Joined: May 2009

My brain tumors are not cancerous or operable according to several nuerologists but I had for years had the strangest sensations which I blew off because I just couldn't figure out how to explain them to a doctor and other symptons I didn't realize were related to my brain tumors until I was diagnosed after having a grand mal seizure. First I was diagnosed with a tumor in the left parietal lobe. I was having what I used to call spells. It was like a feeling of being on a really fast rollercoaster. It would like whoosh from my feet to my head and then back down and then stop. It went on for years until the night I had the grand mal. Two days before the big seizure I started having these spells every 5 minutes. They weren't painful though. Kind of cool (I know thats odd to say). The night I had the grand mal I was at my desk on the computer all the muscles on one side of my body tensed like a huge cramp and it felt like something was trying to rip my right leg off of me. It hurt so badly. I didn't lose conscienceness the first two times it happened and it didn't even dawn on me something serious had just happened how stupid of me. Until the big one came. Lost conscienceness, woke up to my husband screaming at paramedics because they thought he had beaten me. Blood all over my face from biting my tongue, wet myself, couldn't pick myself up off the ground. Thats when I found out I had the tumor and it was bleeding. Doctor put me on Keppra and dilantin and the spells went away, the tingling on the right side of my face stopped and my bladder tingling on the right side has stopped. Two other symptons I kind of blew off for years because I didn't know what was causing them. A couple years later I found out that I had 3 tumors on both the left and right parietal lobes. Symptons up until now have just been a rollercoaster spell here and there when I forgot my meds, until now. The spells are coming back about 10 a day now. I know I need to go back for another MRI as I'm sure these things are growing again but then I think whats the point since the nuerologists already told me because of the dangers involved with removal, they won't operate or fix them until I can no longer feed myself or walk and talk. The only memory problems I've had is my children will tell me about things they did that I knew about and I can't remember these things ever have happened. I work hard on my memory now and try to read and keep my mind sharp as that is a fear I have of not being able to have a mind. I'm left handed. My depth perception is shot now when I take the eye exam and have to pick out objects in the cards but it seems okay to me otherwise but the opthamologist told me I failed the depth perception part of the eye exam. My reading skills and calculation skills are sharp. My vision is deteriorating. I had above perfect vision before the tumors. Now I can't read without bifocals that get stronger every year. The only balance problems I have now is if I ride a rollercoaster or do anything that spins my head, I can't walk at all afterwards for about 20 minutes. The thought of surgery scares the hell out of me on my brain. I hope I never get to that point but it sounds like I'll be pretty well be a goner by the time they operate anyways. Good luck with all that you are dealing with.

Lori2169
Posts: 1
Joined: May 2009

I originally wanted to get on here to reply to the liz_army posting which I still want to address, but I have got to tell you, your post touched me to my soul. It seems that while I may have started this year unknowingly with approx. 9 tumors in my brain(which had metastatsisized from my lungs) mostly located in the parietal portion of my brain, both left and right sides, I have never suffered any form of seizures whatsoever. I was just having the most mind-blowing headaches. I told my fiance' and he sort seemed like, "Well take some ibuprofen." Then I made a doctor's appt. and he just kinda blew in off. I had taken a pretty bad fall in our backyard a few weeks earlier and had injured my shoulder and told him I thought the two were connected but that the shoulder wasn't causing me near the pain the headaches were. I would occaisionly see flashes of light. I also had a sinus infection at the same time, so he ignored all else and prescribed an antibiotic and sent me on my way. I was let down. I took the antibiotics, the sinus infetion cleared but the headaches continued and I was due to return for a checkup in two weeks to that same doctor. I felt hopeless, so I thought I would try a chiropractor. After 2 weeks of being with this practice they told me that something was wrong in my brain because my body wasn't reacting the way it was supposed to and that he would like a MRI done, but he couldn't order it, he needed my family physician to order it. So when I went back for my 2 week return checkup after the anti-biotics I told my doctor what the chiro said and he acted upset with me. Next thing I know he is scheduling me for physical therapy for my shoulder and doing nothing for my headaches. Now I had just sat there and during my appt I made it very clear that I could not live with the pain of these headaches any longer, something had to be done. So he leaves the room, his nurse comes in and tells me that the doctor has made repeated calls to my chiro and they have not returned the calls. I go to my chiro that day and I find this is completely untrue. Now it is just about the end of 2008 and I am relaying my frustration at this situation to my gynocologist and he tells me well you know why he is not doing that MRI don't you? I said, no. He goes on to tell me that evidently doctors are offered big bonuses every year and for every test and so forth that they don't perform, they get to keep this money. I was heartbroken. Well that day I went and gave my family doctor's physical therapy a whirl and somehow that must have set things off because the headache really kicked into high gear that evening and I landed in the emergy room with my head and neck blocked. They ran a ct scan and soon found the tumors. At first they didn't know if I had had a heart attack, stroke or cancer. I am 43 and never unhealthy except for the fact that I had been a smoker, until that night. We were having an ice storm this night, but they bundled me up and took me to a more state of the art hospital an hour away because they had the equipment I needed. At this point, we now knew I had Lung Cancer and Brain Cancer, what a shock to me. I thought I was ust having headaches. I was admitted into Penn State Milton Hershey Medical Center for the whole next week and things began to move. They even began my radiation to my brain that first week. I was terrified of all that was going on. I just never realized just how much worse this could have gotten I suppose. There are days when I am so mad at the time my family doctor cost me in getting diagnosed by not getting that MRI ordered for me, there are days when I am playing the pity game with myself and others where I am still completely stunned off my feet that I have this and am still struggling through my treaments. I am having a hard time with nausea and vomiting with my chemo and I have lost all but all strenth in my legs since early in my treatment in early January. But this seems nothing compared to what Pally2nite is faced with, I'm truly sorry. I wish you the best.
I do want to say a few comments to the_liz_army. The reason your post caught my eye is because I was haviing the same problems having the tumors in my brain and receiving radiation to my brain. I tried explaining to my doctor how i would go to get something out of mt patry and find myself in the refrigerator in a state of confustion, then it would hit me, I didn't mean to be in the refrigerator I was simply OFF. Or if I did get in the right place, I wouldn't be able to make my arm go to the place I wanted it to go to, I would be touching the wrong thing. I also lost my ability to write. Numbers became letters, letters other letters, numbers other numbers, I forgot my multiplication tables, the most elementary of things eluded me. I cried constantly out of frustration. I am not a slow peron. I passed the civil service exam with flying colors to get into the Post Offie. So all of this confusion was really frustrating for me. I was also doing a lot of "stupid, careless" things, I was burning food constantly, I was leaving the house with candles lit. When I would do dishes, I had to be extra careful of the knives down in the sink. I would see them and even pick them up and check for the sharp side of the knife before I washed it, but somehow still manage to get on the wrong side of the knife. I go three really deep cuts by this happening to me. I also had a lot of trouble remembering my apppts. until I worked it out with the staff to email me my appts because I couldn't remember anything. Once they realized just how much of a problem this was for me, they accomodated me on this. This is mostly getting better, except for my ability to write and the weakness in my legs and my nausea with my chemo right now. So I just want to wish everyone well, none of this is easy. I'm sorry I droned on and on and on. Oh one more thing for liz I am ambidextrious.

Sceerd
Posts: 8
Joined: May 2009

My Tumor was mostly on the right parietal lobe causing blurred vision, headaches, and motor control problems with my left hand (I'm left handed). This new tumor is further forward more centered and in the old tumor bed. So far no symptoms probably because there's room to grow without putting pressure on anything yet. I feel the best I've been since before my first symptoms. The only problem is I'm scared and realizing my time is getting cut short.

karen1980
Posts: 3
Joined: Aug 2009

My boyfriend was diagnosed with non small cell lung cancer in April of last year. In November of last year he found out that it spread to his brain. I've been doing alot of research on supplements that may help him. I've found a few that sound promising. I was just wondering if anyone has tried anything that had any positive results? Any information would be greatly appreciated. My thoughts and prayers go out to everyone who is going through this or knows someone who is.
Thank you

joey0403
Posts: 1
Joined: Jan 2010

Hi,

After a long and frustrating search to find a physican who might explain the increasing numbness on my right side I took it upon myself to email a neurosurgeon in my city. I explained my symptoms and asked if he would see me. Five days later the MRI results showed a large mass in my left parietal lobe. I had a craniotomy and fenestration of the tumour to biopsy, relieve the pressure and reduce the size. The tumour is a benign but a rare neuroglial cyst which cannot be removed and is regrowing.
I am right handed have all the following problems since surgery:
• Seizures
• depth perception especially on stairs
• balance
• sensory perception
• awareness of your body in space (proprioception)
• language skills
• writing skills
• calculation skills
I am horribly frustrated by the lack of information I can find on my condition as I slowly deteriorate.

Any thoughts,
Joey

the_liz_army's picture
the_liz_army
Posts: 40
Joined: Mar 2009

Joey:

There is nothing I can say to make things better for you, but I do know how you feel and a bit of what you are going through.

It has been 10 months since my last brain surgery and every day is better than the last. I was at the pharmacy on Tuesday picking up my chemo pills and I thought, "I bet no one could even guess I can cancer--let alone brain cancer."

But then out of the blue I will have a partial seizure, or a weird moment of bad balance, and I am brought back to reality.

Liz

leepas
Posts: 1
Joined: Jan 2010

Hi

My mum 2 months ago was struck down with feeling sizzy and having trouble speaking. cut a long story short this continued with her being admitted to hospital and being told all sorts of things such as having terminal cancer and then that she had a stroke..

She then went for a biopsy on her brain and it turns out she has a tumor on the parietal lobe. a week after this biopsy was boxing day, she started to feel funny..went to hospital the next day (walked in) but couldnt talk.. and in the space of less than two weeks she is now totally unconscious and unable to talk. she is wired up to all sorts of steroids to lower swelling i assume but she cant even mak conversation now...

The doctors have told us that it is not malignant and its a low grade primary tumour, and will require surgery, and that her case is not an 'emergency'

I am just a little confused.. she is unconscious almost all day every day, in this short space she has gone from being a strong hero figure to a heartbeaking unconscious husk..

I just want to know if anyone has had a tumour here and how likely it is that she may recover. If the surgery is out the way, will she not remember certain things? how long does it take to rehabilitate.

I would finally like to say to all of you on this page personally..although you most probably live life meeting people who dont appreciate what you have been through, compare to the kind of things i have just seen that she goes through, you are all amazing.

Lee

steve68's picture
steve68
Posts: 9
Joined: Jan 2010

Hi Liz,

I have a grade II diffuse astrocytoma that is mainly in my right parietal lobe. (I am right-handed). It has spread to right occipital, right frontal, and to left parietal (gliomatosis cerebri). My symptoms have so far not given me much discomfort. I have had difficulty determining what symptoms have been caused by treatment (biopsy, radiation, temodar, decadron), and what have been caused by the disease. I was not a candidate for surgery. So, for what it's worth...
- depth perception - has not been affected
- balance - somewheat affected. I can walk up and down stairs, but my soccer-playing days are over
- no proprioception issues
- no sensory perception issues
- language and writing skills - minor issues so far, mixing up the beginning of one word with the next. i have to write in short sentences and stitch them together into something more normal. This may be largely an attention-span issue.
- I couldn't do calculations for a while (especially in my head), but that has recently come back. I retained understanding of math concepts throughout.
- was really sleepy during radiation therapy (whole brain) aand for several weeks after words, and had no appetite
- I have a left hand tremor that is making it difficult to play the guitar and I'm breaking a lot of dishes.
- Easily confused, forgetful, need to do one thing at a time.
- Difficulty finding things. Difficulty remembering where things are. Sometimes forget what I am doing.

Steve

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Since my initial reply to Liz' query I've been experiencing more aftereffects, whether from the surgery or the whole-brain radiation, particularly: "- Easily confused, forgetful, need to do one thing at a time.
- Difficulty finding things. Difficulty remembering where things are. Sometimes forget what I am doing."
That could be me talking :)

sheryleLL
Posts: 1
Joined: Jan 2011

Hi Everybody. My mom had a left upper lobectomy two years ago, Stage IV Adenocarcinoma. (?). She had chemo (Alimpta) which switched to Tarceva about a year or more ago following a few negative PET Scans. She also had daily radiation treatments for many weeks. She has been in a state of general decline for many weeks - which I attributed to her age and the rigors of visiting with at least two doctors a week an hour away from home. On New Years Eve I found her at home debilitated, confused, dehydrated. I removed her to my home in hopes of building her back up. While she has responded positively in many ways - she has gained weight back thanks to Megase, and was less confused, several sharp nurse observed that mom had some very strange behaviors, and "put two and two together." Mom would only grab her walker with her left hand, never her right. Even with coaching, they practically had to reach over and place her hand on the walker handgrip. When sitting in a chair she frequently sits on the right arm of the chair, she places her water or milk glass down in the middle of her plate or bowl of soup, and is unaware of all of these behaviors. She had actually fallen a couple of times, losing her balance in the middle of the hallway, always falling to her right when she under-reached for support. She had an MRI this past Friday which revealed a 2.5cm mass in the left parietal lobe. She said she was glad to get the diagnosis because she often felt like she was "crazy." She had chosen not to persue treatment for the leision, and does not want a biopsy to determine the origin/type of the tumor, but has allowed hospice to come in to keep her comfortable. Here are my questions, for which I would greatly appreciate your help and advice. She has suddenly become very short of breath, since Sunday morning. We have medicated her with Ativan, believing it to be anxiety related. But I couldn't stand her continued struggle to get air tonight, and so I gave her a small dose of prn Morphine. She is resting better at the moment. Her gait is very unsteady - how long will she be able to walk at all? Can I expect that she will have seizures? Will I be able to communicate effectively with her until the end, or will she be terribly confused? Will she have headaches? (She has RARELY complained of headaches.) If this is a return of her lung cancer, how long might we have together?

endlesslyiwait
Posts: 1
Joined: Mar 2012

My symptoms started as intense headaches behind my right eye. Then i started waking up early in the morning with an intense headache and i would vomit immediately aftwr waking and the headache would go away. About a year ago I had my first seizure, the left side of my body went completely numb, my heart started racing and I got very confused and started walking in circles. I didn,t know it was a seizure at the time. I had about 30 or so episodes like that over the last year. Finally about a month ago (2/21/12) I had the worst one ever. I was riding my bicycle to work through a busy intersection when it hit. I completely lost control of the left side of my body, but miraculously managed to coast through the intersection and make it to the sidewalk where I collapsed and had a grand mal seizure. I layed on the sidewalk apparently convulsing. I have no memory of this. Somebody called 911 and paramedics rushed me to ucla medical center where an mri revealed a 4 cm tumor in my right parietal lobe. I had surgery 2 days later to remove it. The pathology report came back as anaplastic astrocytoma grade 3. I have noticed some spacial perception deficits and find myself surprised by my left hand from time to time. I begin radiation and chemotherapy next week. Wish me luck...

lboy
Posts: 2
Joined: Mar 2012

My wife's tumour(GBM 4) in left parietal and temporal lobes was discovered when it caused a brain haemorrhage, which had to be drained with emergency surgery. This was three months ago.

Accordingly it is difficult to separate the effects of the haemorrhage from the tumour, but the former seems to predominate. After the stroke:
- right side completely paralysed. Some movement returned to the right leg, but only three weeks ago, when she started chemo/radiotherapy (they would not do it before because of brain swelling from the emergency surgery). This is very late for stroke recovery, I wonder if the tumour was pressing on the motor cortex and then under the treatment shrank back a bit, but the surgeon said that the clot removed from the haematoma was on the motor cortex. Arm still paralysed
- could not speak after the stroke, it returned to near normal after 7-10 days. Verbal dyspraxia apparently: could think of the word, but muscles had a problem forming them.
-some fine motor control lost even in the good left arm. Gets muddled as to which bits to move and when (motor dyspraxia)
-cannot do maths at all
- bowel and urinary took three weeks to come back to normal
- she had mild "right side neglect" at first: had to force herself to look at the right hand pages of a book. This has gone

Everything else normal: reading memory and understanding were never affected. Poor concentration has improved over time. She has never had any of the classic symptoms of a brain tumour (headaches, dizziness, and the only nausea has been from the temozolomide chemo, Zofran anti-sickness dealt with that)

edslas's picture
edslas
Posts: 19
Joined: Dec 2010

and...Good luck.

Pazza
Posts: 4
Joined: Apr 2012

In January after experiencing tinnitis and hearing loss the ENT consultant sent me for an MRI brain scan as a precautionary measure. A mass was found, this was an incidental finding. In January, all I was told was that I had a 'mass' on my brain. I waited and waited for an appointment with a neurosurgeon, 2 months later, nothing, I was told there was a 12 week waiting list, which the time hadnt started yet until it was on the appointments dept desk (I had waited 2 months already - which to my alarm did not count in this time for the waiting list!). I eventually went for a private consultation with the surgeon I was to see through the NHS as I was worried sick. My MRI scan was reviewed and I was told that the 2cm x 2.5cm lesion was likely to be a low grade glioma (they knew this is January), it is in my right subcortical partiel lobe. They are adopting a wait and watch approach and I have to get another brain scan in 3 months. This will mean that it will be 5 months between the scans, I am concerned that this is a long time and without a biopsy, they cannot be 100% sure of the grade of tumour. I experience headaches (mild but daily), occasional sharp pain at the top centre of my skull, sharp pain in my left side (had this for months), pain in my left shin bone and burning sensations in my left foot. I feel my eyesight has deteriorated and I appear to be developing dyslexia, when reading on paper the words appear to move from side to side, I also cant find words at times and can't seem to absorb info the same as I have in the past. I experience extreme fatigue. All of these symptoms, I have been told are unrelated to the tumour? I am concerned that the wait and watch approach is dangerous, is it not better to remove a glioma while its in its early stages rather than waiting until its much larger or the cells have changed into a higher grade. Has anyone else been through a similar experience? Many thanks P

AndrinafromEngland
Posts: 10
Joined: May 2012

Hi I was wandering what type of medical professional(s) you have approached about these symptoms which are deemed 'not related to the tumour'?? There is obviously a problem whether they are related or not. Have you had any tests/scans to see if there is another cause in addition to a tumour? Is it possible for you to get a second opinion?

Regards, Andrina

mandya
Posts: 1
Joined: May 2012

Hi Pazza

I am writing this about my 22 year son, Ross who found out he had a 32mm X 22mm mass in his left parietal area in March 2012.

He had grandmal seizure in his sleep, out of the blue in January. We thought it would be epilepsy but to our horror found ou this diagnosis after the MRI in March.

He is in the same situation as you- watch & wait,with a further MRI in September. They say it has all the 'appearance'of a benign low grade -probably-Glioma. They wont biopsy it because of where it is or remove it. This is because he has no other symptoms at the moment only seizures, which seem controlled at present on Lamictal 50mg twice daily. He's lost his licence for a year and all in all its a nightmare.

The Neurosurgeons team are very good but I feel there are no proper answers to anything and like you- am worried about it being left to possibly grow bigger. They cant even tell you how slow these things grow.

I hope your next scan is good. How old are you? Regards Mandy

Pazza
Posts: 4
Joined: Apr 2012

Hi folks,
I would like to say having read everyones stories, my heart goes out to everyone, its a scary experience, and the fear of the unknown is horrendous. Not knowing what is going to happen to you. Mandy, I am sorry to hear about your son. It is horrendous that we are told very little and need to wait for months with the worry. Thanks for your replies, sorry I hadn't seen them earlier. Its the GP that has said they were unrelated, the neurosurgeon said this too, but I think they are possibly trying to not worry me. They did however say they will bring my scan forward, earlier than July. Unfortunately, the hospital does not have an earlier MRI appointment, its on 2nd July. I am 42 btw, with two daughters aged 23 and 4 years old. I have had the strange sort of numbness/heaviness/weakness in my left arm for about 2 months now, has never went away. My tumour in January was 2cm x 2.5cm in my right partial lobe. I now have extreme tiredness, I want to sleep as soon as I am home from work, and sleep all weekend. I have started to get very stingy headaches, blurred vision and strange dizziness/weird lightheadedness. I also experienced a strange episode of seeing large balls of fire in my periferal vision. I am so worried that the tumour has changed in sized or grade and I am still kept waiting! I think the Gp seems to think I make up the symptoms, I do have a number of symptoms and I seem to think she thinks I am a hypacondriac, but I do have these symptoms, it isnt my imagination. I am not asking for time off work or anything, I have nevr been off work in 13 years, its so frustrating. I worry that there is cancer elsewhere as I have swollen lymph nodes under my neck, that have been there for months, pain under my arm in my ribs and pain in my breast, heavy periods that just never go away. Pazza

Foster Spazz
Posts: 3
Joined: Jun 2012

June 1 was taken off a cross country flight with slight seizures on my left side. I was sent to one of the top neuro centers and have a 4 MM mass on the right parietal lobe. Will be having a biop and surgery within the next few weeks. You can knock me over with a feather, did not see this coming, but, now I know that there has been some mild symptoms that I did not think were important. I am reading all that I can and do not look forward to the surgery but will be so glad when it has been taken care of. Consensus is that it is not malignant but no promises.
In reading some posts about how little information is given to some of you about what is happening, there are many support groups out there and I for one learned the hard way that you have to stand up for yourself and be a strong advocate for your own, or a loved ones, health. I am told that there are successful new technologies for shrinking brain tumors, however, get yee to the best to be sure or at least check out the case studies at the top teaching centers!
There are many web sites but I have found that moving about the major medical centers web sites have the best information.
Try: http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery to click to the top hospitals and doctors.
Good Luck to all of us, we will need it.

Foster Spazz
Posts: 3
Joined: Jun 2012

HI,

Your son is much too young to be left with so much unknown. His life is severly impacted and that is not fair, there must be a reason that this approach is being taken. Have you asked why the tumor is not operable? I am not trained in any way medically but I can tell you that at 60+ my doctor thinks I am much to young to be left with taking anti-seizure meds and having my life pulled up short when a tumor is operable. The meds he is taking are not pleasant and his license may not be given back to him even in a year if he is still having issues. My understanding is a biopsy is generally not done until surgery is taking place unless there is potential for major damage. It sounds like this needs to be explained in greater detail to you. All the literature I have found strongly suggest that "if the tumor name is confusing, ask to have it explained". Some sites to check out are;
American Brain Tumor Association www.abta.org; Brain Tumor Foundation for Children www.braintumorkids.org; National Brain Tumor Society (ACS) www.cancer.org. Don't want to be pushy but hope this helps. Good Luck

AndrinafromEngland
Posts: 10
Joined: May 2012

Hi Mandya
I am really really sorry to hear about your son. You, your son and family must be in terrible shock. I don’t know the pain you are experiencing, but as a mother myself, I can only imagine. I too have children of my own, two boys 15 and 16; no mother should have to go through this with their child. There are lots of Mums on this site with children with tumours, so seek them out. It might help a little.
I was 12 years older than your son when I too experienced a couple of gran mal seizures. I was eventually diagnosed with a grade II Oligodendroglioma in my left frontal area just 4 months after I was married. The tumour was dangerously close to my motor and speech areas so they wanted to operate; which they did 6 months later. The only side effect I had (and still do) is epilepsy. Mine are also controlled (mostly) with Lamictal but I take a total of 625mg per day.
After the surgery they took the ‘watch and wait’ approach with MRI’s. Apparently this is a standard procedure for low grade tumours. The surgeon told me that when a patient is first diagnosed, it’s not about how slow growing the tumour is, or how big it is, but WHERE it is.
I am pleased to know that your son’s Neurosurgeon team is very good, but he still NEEDS answers. In my experience it’s a case of ‘ye who shouts the loudest’ gets heard; after all, they are not the ones suffering. Be bold, press on, be heard!
I will be thinking of you all. Please let me know how you get on.
With my very best regards, Andrina

Mindundone
Posts: 1
Joined: Jul 2012

I am an almost 21 year old female who was diagnosed with a low grade glioma in my the left frontoparietal, somewhat more parietal lobe. I was 13 at diagnosis, had a full resection of the tumor via craniotomy & two follow up operations. I am still having a lot of residual side effects & have been desperately looking for years for someone who has or has had a tumor in the same area as me. If you and/or your son would like someone to connect with with a very similar experience, I'd be more than happy to communicate.

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