Mom diagnosed with brain tumor

fredrik · New User Joined: 29 Jun 2009 Posts: 6

Hi Everyone.

First of, Im from Sweden and my high school english is not great, but here goes.

Five weeks ago my sister called me crying sayin mom (who is 58 and has had no previous symtoms or treatment to cancer) had walked out of her home in her slippers, "waking up" a couple of hundred meters from home realizing she didnt know what she was doing and why she stood there in her slippers and started walking home. Luckily my sister caught her in the door on the way home as she had come to visit, else i doubt our mom would have told us anything. She was still a bit confused and could not say hoe long she had been away. The front door was wide open and the legs of her pyjamas pants were wet and dirty...

We took her to the hospital of course and they had her waiting for 8 hours ... This is how you are met when seeking health care in Sweden. I will not put much time into explaining this here but so far we have been surprised and terryfied with the ignorance we have been facing since day one with this expericene. Anyway, the doctors told us she probably had a small (i dont know the word but when there is a plug in a blood vein) or a small bleeding in the brain.

So thay said they would do all kinds of tests and x-rays but the only thing they did was a normal x-ray (whitout contrast fluid like they first said they would) and said they saw nothing and sent her home with epelepsy medicin. I did not react to this but my sister who works at a bloodlab was furious and damanding more test. She knew then the symptoms pointed to brain cancer but did not tell me until later to not get me worried. A week passed. Mom was suffering from some memory loss and sometimes repeated the same questions twice etc. Then one day my sister called again crying saying mom had had a epileptic "attack" and fallen bad in her house. My dad was abroad with work, and my sister is pregnant and was far away to do some normal tests on the baby. So I went to mom and she was black and blue all over. I had to carry her to the car and take her to emergency room. Again waited for hours and the next morning they took her in for exam. Her pelvis(?) was broken and all of her right arm was blue, but not broken. Actually I think I was mistaking before, now first did they say she had epilepsy and gave her medicin.

Two weeks passes. During this time my sister and dad speak with the hospital multiple times but they refuse to take my mother in. They say they will call her in later to do more testing. So one night at our country house mom gets an epileptic attack again. This is quite powerful and last longer then before (we think cus this is the first cramp anyone is ther to see). Her pelvis(?) fracture is ripped open again during the cramp and she is in much pain and cannot move so an ambulance has to take her to the hospital. At the hospital they do nothing and send her home with painkillers.

Now mom's starting to get worse. She speaks lesser and lesser and forgets things all the time. She cannot do crosswords anymore which she does every night i bed. When we sit to eat she never starts any conversation and only answers yes and no. We are all so worried now and even a five year old understands that something worse than epilepsy is goning on. Dad is staying home from work during this time to take care of her. Her leg is also really bad so she cannot do anyting by herself. 4 weeks ago she was fine!!!

So one day when nothing is better dad takes her to emergency room again. She has now forgotten how to use the shower nossle just sitting there in the shower spraying at the wall Sad

At the emergency room they wait again ..... for hours. A doctor finally has a look at her and asks for the date, she thinks its -96 someting. Right then she has another cramp attack which is good so finally the doctors belive us and take here to the neuro-department for more investigation. They promise us a magnetic x-ray but the days go on and nothing happens. Mom gets worse and were starting to think they are jsut gonna let her die on the bed. So one day my dad just blows, he goes berserk demaning to see the hospital chief. The cheif is on holiday but suddenly they find time to take mom to x-ray. But not magnetic (MR scan?) just somthing i think is called CT scan. This time useing contrast fluid. They find a "change" in the brain. They say it can be a pud festering(?) from a earlier infection in the body. Mom has had no recent infections... They put mom on hold for a magnetic x-ray. Days pass. Mom gets worse, cannot move right half of her body. Cant speak. Dad calls laywers and people he knows etc. Thretening to sew hospital and whatnot if they dont take her to x-ray again. Finally some powerful person he knows puts preassure on the hospital and would you know it .. they can now fit her in the schedule. Result: tumor size of a golf ball just under her forehead.

This was 2 days ago. Now we are waiting again for surgery. Neuro surgents apperently did not work on weekends so we have heard nothing since firday. Mom got something to reduce the swelling and some symptoms is better since then. The neuro doctor says we will probably have to wait 2 weeks for surgery as a lot of doctors are on holiday ... Sad

We cannot wait? This thing must grow very fast as the symptoms has come so very quick.

What should I do?!?

brainman

fredrik, I am so sorry about what your mother, your family, and you have gone through over the last few weeks. I cannot imagine how hard it was for you to wait so long for an MRI. I had a CT the very night of my first seizure and an MRI the next morning.

Have they done a biopsy on the lump under her arm to make sure it is cancer and if so what type? It would surprise me a lot if she has a primary brain cancer since primary brain cancer do not spread outside of the central nervous system and rarely spread outside of the brain. It is more likely that the lump in her armpit is the primary that has metastasized (spread) to her brain. It is also possible that the two are unrelated or even a response to some type of infection. Without a biopsy it is not possible to be 100% sure.

My only advise is for you and your family to keep being your mother's healthcare advocate demanding that she receive all the tests needed for a proper diagnosis and then to receive whatever treatment is appropriate.

When my mother showed her first symptoms, I was in your sister's position... knowing more than anyone else in my family but not wanting to be the one to say anything. I saw her MRI scans and instantly knew what I was looking at. There was no doubt in my mind that she had a GBMIV (glioblastoma multiforma grade IV). Fortunately, she had an appointment the next morning at which time the doctor almost word for word to my mother and father what they had told me several years earlier. My mother only lived two months after her biopsy.

You and your mother are in my thoughts and prayers.

BTW, your English is much better than my Swedish.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
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kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

I am so sorry to hear of your plight. Things are bad enough with a brain tumor diagnosis without all of these dramas.

Others may object to what I am about to say, but I have private health insurance and have received much better health care in the private system. I realise that this isn't always true.

I would say that these events may be a blessing in disguise (huh?). Rather than force a hospital to treat her where the standard of care is inadequate and may bring worse results, maybe there are alternatives. If this was my mum and she could travel, I would be seeking the best brain treatment center in Europe. Now I realise that not everyone, in fact most, could not afford this option.

Are you able to get her to a brain cancer treatment center that you could afford? I assume that her seizures may have to be controlled first.

This is such a difficult time for everyone without the stress of the mismanagement of her case. Without trying to increase your stress level I wonder whether there is a better hospital in Europe or Sweden where your mother can better treated as a person and not a number (I feel your pain).

I hope these comments are helpful. They are written with the best intentions. Please keep us posted on your mother's progress.

fredrik · New User Joined: 29 Jun 2009 Posts: 6

I agree. I just dont know if there are any specialized centers in sweden or europe. The biggest, i think perhaps only, private health care centre in sweden "Sophiahemmet" could not do this kind of operation. Their neuro surgeon specialized in spinal injuries.

Its hard to find information online, I mean its hard to judge what is a good clinic and what is just a scam. Also I dont know which western european countries has a well developed private health care system ...

Which clinic on the US East Coast would be recommended? How long would we have to wait in line in such a center? I quess they would want to do all the testing all over again, so it might not be surgery any sooner than we wold get in sweden (approx 2 weeks)?

kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

The large cities, on average, have the better/ more specialized tratments centers. Here is a list in New York that you could try contacting:

- The New York Brain Tumor Center - Weill Cornell Medical College
- The Brain Tumor Center at Memorial Sloan-Kettering
- NewYork-Presbyterian Hospital/Columbia University Medical Center
- Mount Sinai Medical Center

I am sure that you couldn't go wrong with any of these. There is a good list of brain tumor centers, including Europe, on the website www virtualtrials dot com / btcenters dot cfm (not sure if I have linking rights yet).

I have since my operation 2 years ago wished there had been a case manager. Someone who says here is the best things to do and your options now; and here is a shoulder to cry on if you need it Smile

.

Good luck with your search. I hope that getting your Mum to a brain tumor center will make a world of difference. I don't want to get your hopes up too high, but Cedars-Sinai in LA are getting more than double the overall survival rate on the national average; to me this is evidence in support of specialty brain tumor centers.

Once again all the best whatever your family decides to do. Just remember to discuss all the risks and benefits of options before deciding.

All the best!

fredrik · New User Joined: 29 Jun 2009 Posts: 6

Thanks a million, kenobewan. I will bring this information to my family tonight and we will see. Thanks again!

petrit · Regular Joined: 15 Aug 2007 Posts: 36

I am sorry to hear about your mums tumor and even more sorry about your health care in Sweden . I have been through all of this thinks that u going through now maybe even worse. My dad had his operation in Albania wher neurosurgeon is very good one but hospital there is quite shocking. He does operation in France and I hear that France has advanced health care . I hope this help a bitt
your mum is in my thoughts and prayers

petrit

fredrik · New User Joined: 29 Jun 2009 Posts: 6

What price-region are we looking at here if we need thorough examination, tumor removal operation, and rehabilitation for my mom. Im not putting a price on moms health here but theres a limit of what we can come up with and I dont think there's any insurance that will cover expenses from any medical care that we "choose" to do aborad. I heard an MRI alone cost around 30-40000$ ?

We spoke briefly to a german specialist today, I will call the norweigian specialist listed on virtualtrials tomorrow.

What do you think all this might cost if we go private, 100000$? More?

Today the growth of the tumor had caught up with the minor improvments we have seen the last 3-4 days from the steroids. Mom's beginning to loose her hearing now. Doctors cant say when she will get the operation. The doctor's diagnose calls for no immediate action they say. What kind of %&($ dignose is that? She is fading away from us day by day, it must be growing so fast! Strangely the doctor never sees mom, only the nurses. It might take 3 more weeks, they "cant promise anything"

Not that it will be worth anything if they let mom die, but dad's been saving all the email correspondance and asked for copies of her charts. All is sent to a lawyer to be dealt with later. Thank you all for your posts!

petrit · Regular Joined: 15 Aug 2007 Posts: 36

Hello Frederick
I feel u beacuse u are very stressed at the moment. I have been same like u when I couldnt do nothing in my contry so i had to go to other counries for my father treatments.
Mri in my Counry(kosovo )cost 250 euro , I live in UK over here goes up to 3000 pounds.
My neurosurgeon is in Albania he is a very good one bu hospitals over here are really in bad condition.
Now prices for Eastern Europe
I have paid around 10000 euros for surgery in Albania .
4000 euros for radition in Macedonia (better health care than in UK)
I will be more than happy to help in any way i can ,even for me these countries where foreign ones besause I have been living in Uk for over 12 years but my parents live over there .
I can contact you with neurosurgeon over so u can talk o him

hope that help

fredrik · New User Joined: 29 Jun 2009 Posts: 6

Very helpful. Thank you petrit!

kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

If your mum has all of her treatment in the US at a specialist I would expect it to cost around US$100,000. In Europe, I would expect it to cost less. Ask about this when you contact them.

The neurosurgeon should do a minimum of 50 brain tumor operations a year, the more the better. The unfortunate think is that going to another country will not give you access to public health care.

Try to be realistic about what you can afford. I am confident in the Virtualtrials centers listed, so my suggestion would be to try these first.

Good luck!

tawny111 · Regular Joined: 04 Jun 2009 Posts: 37 Location: usa

GEEZ after reading your story, it makes me mad for your family and your mom. there is no justice sometimes, and where you are located, they certainly did wrong.
god bless
tawny

jimssister · New User Joined: 23 Apr 2009 Posts: 7

redrik,

I'm so very sorry your mother is going through this and I can share your concerns about trying to get the best health care you can for your loved one. My brother has a brainstem glioblastoma (grade IV). There is so much to learn in a short time! I've found doctors at the major brain cancer centers very willing to answer questions when my sister or I have emailed them.

The two centers on the US east coast that I know most about are the Center for Neuro-Oncology at the The Dana Farber Cancer Institute in Boston, Massachusetts (http://www.dana-farber.org/pat/adult/neuro-oncology/default.html) and the Brain Tumor Center at Duke University Medical Center in Durham, North Carolina {link deleted by admin. http://cancerforums.net/viewtopic.php?t=12696 as amended http://cancerforums.net/viewtopic.php?t=7121 } . They both have accommodations for people who do not live in the area. They are both superior cancer centers treating brain tumors and at the forefront of research and clinical trials.

Dana Farber provides online second opinions through consultations with their oncologists regardless of your location. The web page for this service is:

{link deleted by admin. http://cancerforums.net/viewtopic.php?t=12696 as amended http://cancerforums.net/viewtopic.php?t=7121 }

The fee for online consultation starts at $495 (US) and can be initiated by the patient or the patient's physician.

You and your mother are in my thoughts and prayers.
_________________
Stacie

fredrik · New User Joined: 29 Jun 2009 Posts: 6

Thank You jimssister, I have registered with the online second opinion service. We have not yet decided if we will use them or not.

Things have changed a little for us. Mom finally got scheduled for surgery next Tuesday at the hospital in Sweden. They will however not guarantee the appointment as more urgent cases might come up.

In the mean time we have spent a lot of time trying to find other treatment centers in Europe and one that looked like one of the best is the International Neuroscience Institute in Hannover (edit: I removed the link myself, its easy to find on google or PM me). They have reserved a time for surgery for us on Monday, but that requires us to come there tomorrow or Friday. So tonight we must decide...

The pros of INI are that they seem very professional and their premises look state of the art. I believe we will get excellent treatment there. The cons are the distance from home (only me and dad will be able to be there the whole time. My sister can fly down on weekends) and that treatment will cost around €50000.

The pros of surgery in Sweden is only that its closer to home, and perhaps that we will get better after treatment there if we do not move surgery to Germany. The cons include that they have treated us like air so far and I’m guessing that they do less surgeries per year than the specialized clinic.

If anyone knows anything about the INI-Hannover clinic or has any other opinion about the choice we have to make, please post a reply ASAP as we must decide within 8 hours or so. I greatly appriciate any input! The INI centre told us that they can do mid-op x-rays, something they didnt think they have in Sweden. Is this critical?

I'm very glad to tell you that mom has been dooing quite well for the past 3 days or so. Her hearing is back to normal and she has been walking to and from the bathroom with us holding her hand as her only support. Talking is still at a minimum, she has a hard time finding the words and she does not like to stutter so she keeps a bit quiet but yesterday we were wathing a sing-along tv show and she was singing fine without stumbling on the words. Perhaps the lyrics are stored somewhere far back in the brain where the tumor cant get them Smile

Thank you all!

kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

I hope that you are able to agree on the best decision Smile

.

If it was my mother and I had 50,000 I know what I would be doing. Just make sure you verify who will be doing the surgery and how many they do; I would feel better if they do a minimum 50 BTs per year.

One neurosurgeon even told me his success rate. While it was obviously good, I was impressed by this approach.

I would include in the potential benefits column the extent of resection, if you have MRIs that you can send them. I would include in the cons the risks of surgery, e.g. if there are complications and she needs to stay longer than planned; so the cost may be the minimum if everything goes well.

I wish you and your mum all the best. While there have been many frustrations so far, I hope that she gets the best treatment available.

I would like to know what operations they consider a higher prioriy?!?

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