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Is there hope?

AndrinafromEngland
Posts: 10
Joined: May 2012

I had surgery in 2002 on Oli II after I had some seizures the year before; I was 33. The surgery went well and the only side effect I had (and still have)is epilepsy. I didn't need any other treatment. He told me that its the slowest growing tumour someone could have and that it wont re-appear for another 10-15 years but that was only a guess. So I was very happy to hear that. 10-15 yrs seemed a life time away and I presumed that I would have an operation every 10 yrs or so; I could deal with that. Never did I once look up any information about the tumour. I had a couple more MRIs after the surgery and that was that. I just got on with my life hardly ever thinking about it.

Well, not until my epilepsy started getting worse. I kept having to have my meds increased. I became quite concerned so I went to my GP and requested an MRI scan. It was then discovered that the tumour had regrown;only 6 yrs after surgery. I was devastated.I was told that I would carry on having MRI's-the watch and wait approach.Each MRI result came back saying 'no significant change'. So again, I stopped worrying as the tumour wasn't doing anything (so I was told).Then last year, out of the blue, the surgeon who had performed the surgery sent me an appointment to come and see him.I thought it was probably routine so I phoned up to cancel it as it was a 3 hr round trip I couldn't see the point in going all that way for a 15 min appointment for him to tell me that there was 'no significant change' !! I was given a message via his secretary saying that it wasn't urgent but he would like to see me so I had another appointment a couple of months later. That was for Oct last year.

I wasn't a least bit worried, after all it wasn't 'urgent' and there has been 'no significant change' so it was obviously routine. How wrong was I. I sat in his office staring at a image of my tumour, totally shocked as I had no idea how big it was (bout 4x4cm-I had thought 2x2cm at the most)and the fact that he told me that it was very dangerously close to my motor and speach centers so I will be requiring another operation, 'sooner rather than later', were his words. You might as well have punched me in the face I was that shocked.
I was no way prepared for that. He kept going on about awake surgery and referring me to a surgeon in London (bout 400 miles from me). When I got home I started to research about this tumour and I was devasted by what I had found out. NO-ONE had told me any of it.I searched the internet for hours and hours for something positive about this cancer and I didn't, and still havn't, found anything positive at all.

I eventually had my appointment in London, 5 months later. It was a 12 hour round trip including a 1 nights stay) for only a half an hour appointment. I was told how dangerous my condition was, that no-one would risk operating on me as the risk of causing permanent damage to me was too great. He gave me two options. Carry on with the MRI's, watch and wait, or awake surgery. The option of surgery seems vague as I have to have lots of tests first to determine whether I am suitable for this form of surgery. I received a letter from him 7 weeks later asking if I would like to proceed with the tests. I said yes.

So, in 11 yrs, ( apart from seeing surgeon to say op went well) I have spent a total of 1 hr with surgeons telling me about my condition. 1 whole hour in 11 years.

Apart from me and my family and friends, no medical professional (apart from my local GP) actually seems to care about me and what I am going through. My so called oncology nurse has phoned me ONCE to ask how I am! And that was to ask me how the appointment went in London.

Is this how it goes? What on earth am I going to do when I start to really get ill? I read all of your stories and you are all going through hell. So I now know what is to come and I hate it. I hate the thought that I am going to get really ill then eventually die of this and that I am going to drag my family through it with me. There seems no hope and no one who know what I am going through for me to talk to. I think I am slowly going mad. I don't know how to be brave, for myself, let alone for my family.I just don't know where to go from here.

Regards, Andrina

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

Andrina,
Welcome to the club you did not ask to join. I first felt the enormity of my situation when the doctor called ME. Doctors, good ones especially, do not have good people skills. Try to find a good doctor with a nurse that you can talk to. Brain tumors are rare, and so are doctors that know how to treat them. You will probably have to travel to see a doctor that specializes in neuro-oncology (NO). Use your local GP to help with quality of life issues. I also suggest that you bring a competent relative/friend to take notes at the doctors visits. These are a very emotional 15 minutes, you will not hear 9 out of 10 things the doctors say.

The NO probably will not care how you 'feel', their main concern is that you stay alive. You need to depend on friends, family and possibly a counselor do deal with the emotional aspects of this journey. I have made a few friends via the internet in a similar situation. These pen pals are really the only ones that understand what I am going through. You need to reach out and ask for help. My contact info is on my blog, www.edslas.blogspot.com. See thelizarmy.com, there are a lot of people that post there that are willing to talk too.

There is no way of telling where this journey will take you. Keep a positive outlook and take joy in the small things in life.

Best Wishes,
Ed

AndrinafromEngland
Posts: 10
Joined: May 2012

Hi Ed
Thank you for your help and advice, Many Thanks, Andrina

Sierra_s_Gift_o...
Posts: 4
Joined: Jun 2012

Dear Ed:

I've come to this site looking for answers and supportive advice for some of the families we support. I am not a counselor, not a dr, not a case worker, I am a stay at home mom that wants to help others. All of my time is volunteered, I do not get paid for what I have been doing...

I have a few families currently with children that have brain tumors. So, this is the reason I am reading these posts... For knowledge, for support, for insight as to best serve others sharing your condition.

I am really moved by your taking time out to share your thoughts with Andrina. Your advice was very supportive, caring, and also very direct, to the point, and honest... May I share (on my Facebook Page) parts of what you shared? I would not need to identify you... I can, if you wish, but I think some of my families could really benefit from hearing your comments...

I hope you are doing well.
Sincerely,
Jennifer Klug

Sierra_s_Gift_o...
Posts: 4
Joined: Jun 2012

Dear Adriana:

I just want you to know, that there are "good" people out there to help you get through this... I'm a complete stranger to you, yet I care for you and what you are going through. You will find others will feel the same way...
My daughter and I started this cause of helping others by bringing them a bit of cheer...

What we have learned in the few months that we've followed numerous families, is that, yes, there may be some difficult times for everyone in your family (even though they aren't sick, they will be struggling emotionally) because they love you and want you to experience joy and do not want you to experience pain...

We have learned that families get overwhelming bouts of strength, just when they need it most... They get through the tough times. They endure. It is scary, for everyone involved... It is only natural to be fear the unknown... Please know: YOU ARE NOT ALONE!!!

It is so great that you reached out to get help! That is a huge step, and we hope you can applaud yourself for being so brave in doing that...

We don't have all the answers, and we cannot make this go away. But, I can help you find someone to talk with... If you would like... You can contact me and I will keep our texts confidential... I have many families that I regularly speak with (via facebook private msgs)... I also try and provide information for people that are in need... You are not alone. We will help you get through this, if you would like... We can be here for support, we can help you look up information, we can look up free counseling services in your area for you... Just let us know what you need, and if we can help, we will...

I can hear from your note that you are a very special person. We would like to be here for you, if we are able... Give us a few moments to allow our Facebook Page to be visible in the UK. We are in the US. Facebook: https://www.facebook.com/Sierrasgiftsofcheer

Until then, please know that our family is praying for YOU & ALL of YOUR FAMILY!

Sincerely, Jen

AndrinafromEngland
Posts: 10
Joined: May 2012

Hi Jen

Thank you for your kind and caring words.It is really lovely of you to offer to help.

After speaking to my GP yesterday and being totally honest with him about how negative I feel, we have come to the joint decision that it is OK for me to feel the way that I do and that I need to stop giving myself such a hard time because I don't feel brave. We both agreed that I must allow my mind to do what it needs to do in order for it to find a way of accepting this and a way of dealing with it.

Best Regards

Andrina

sonfollower
Posts: 26
Joined: Nov 2010

Thank you for being so honest and open about how your are feeling. I can relate to how you are feeling. I have a grade4 Glioblastoma. I was diagnosed May 1, 2011. It was a complete shock to me and my family. I had some unusual symptoms but one of my doctors thought I was dealing with menopause and suggested that I needed to go on anti depressants. Thankfully, my husband would not take that as a reason and insisted that I go to the ER and have a brain scan.
I was scared to death about what was going to happen to me, my family, etc. I have found that I need others to talk to about what is going thru my mind.

I would love to chat with you if you would like.

my email is ljtevelde@comcast.net
God bless,

Lora

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Hi
I wanted to share a little of my story with you. My daughter was diagnosed with a AA3 brain tumor in march 2010, at age 12. Coming as a complete shock to us, we went to a hospital that my daughters PCP recommended. We had no experience with neurosurgeons let alone brain cancer. We trusted the doctors with her life and thought they would lead me in the right direction. I was SO wrong. After 6 weeks of radiation and chemo, 3 surgeries, the docs told us there was nothing more they could do (emotionless)and to make preparations for her passing. At that point my "mamma boots" came on and I had had enough. I told them off and demanded her records in hand before I left. They gave me her records and off we went. She had no doctor or oncologist when we left. I brought her to the Jimmy Fund/Pediatric brain tumor clinic in Boston MA. Part of The Dana Farber Cancer Institute and they were and still are some of the nicest people you will ever meet. They really do care. They work with you and your child. They help families with finacial help, parking, food etc. The Childrens hosp in Boston is awesome. I can't say enough about them.
Anyway, so far they have given my daughter 2 years of a good quality of life. She was on Avastin for 1 year and she was cancer free for that year. Unfortunetly she had one of the worst possible side effects(which is rare, per the dr)that you can have and that was a brain hemmorrhage. She can no longer take Avastin for that reason. I'm sorry if I am rambling on, but my point is that you need to take care of yourself and find another hosp/cancer center that makes you feel like you matter. Remember, 3 hours drive for life isn't bad. YOU'RE WORTH IT :)

AndrinafromEngland
Posts: 10
Joined: May 2012

Hi
I am so sorry to hear about your daughter.I have 2 sons and as a mother it must be absolutely devastating; and for your family too of course.

I actually find it hard to accept there is something wrong with me. I have been shown the tumour on screens, been told how bad it is etc etc but apart from the epilepsy, I feel normal, I don't feel ill at all.
I have to go for some different MRI's,DTI studies and a neuropsychological assessment in September prior to considering me for awake surgery (any other surgery will be too dangerous apparently). So its awake surgery or the 'watch and wait' sinario.

After 11 years the tumour is still a grade 2. What is the big fuss about? There are so many of you out with real problems and I feel that they are being a little dramatic about it.

I will eventually get the results of the tests sometime around nov/dec. I will know more then I guess. So for now, life carries on as normal.What else can I do?
Please wish me luck as I am telling my boys sometime within the next couple of days about the seriousness of this condition and pray for them as they receive this news.The worse thing about these tumours is that they are so unpredictable which makes it harder for us all to deal with-and of course to predict what the next few years have in store.

All of you are always in my thoughts,my brothers and sisters in this fight together.

All my best
Andrina x

jpmonaco
Posts: 2
Joined: Aug 2012

I was diagnosed with GBM stage IV in March 2012. Surgery March 31. My NS said they got all of it. It was located on the right side of my head above my ear, the size of an orange. I began radiation and chemo using Temodar in April. That ended June 19. After that I was on 430mg of Temodar 5 days on, 28 days off. On Monday, 8/20, I had my first follow-up MRI. The scan shows a reoccurance in the same spot the tumor was removed from. My NS and Oncologist recommend another surgery to extract was has grown back. Throughout all of this, I have experienced no complications and I have felt great every single day. Initially, my warning signs were extreme headaches. It shook me up a bit to hear the news and devestated my wife to hear of a reoccurance and especially so soon, just 8 days shy of 5 months today. At this point, I don't have a schedule date for my surgury but it will be "sooner rather than later." They may insert in a wafer filled with chemo or a balloon that lets out periodic radiation in the extraction site. I had already heard about the rollercoaster emotional ride when it comes to this disease but I guess now I'm feeling it first hand. I have a strong faith in God and no matter what, up until this very day my experience has been a miracle especially compared to others. We are all going to die (sick or not) and we don't know when. Those of us with this terrible dilemma have an edge in that we should be very able to take one day at a time, never take anything for granted and make the very most of the time we still have available to us. It sure was easier said than done when I didn't know I had any problems. I sweated the small stuff all the time and my priorities were completely upside down. The GBM diagnosis tamed me down to say the least.

Peace, joy and love to everyone here. Paul

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