New to this! They've just discovered a tumor on the brain.Feel a bit yuk!

I am 85 yrs old but very active and enjoying life, up 'til now. Have had slight memory problems and my GP suggested I had a memory test. This has led, over the past six months, to various tests culminating last Thursday 26th Jan, with a CT scan that showed I have a tumor on the brain. Now waiting for a full body scan next week and am somewhat apprehensive. The specialist I have just seen seemed surprised I had not experienced seizures. So far I have not even had a headache so this surprised me. Don't know what to expect.

I am now shaken, worried and a little scared. My wife knows but I have not told my son who will be really upset, so am waiting the outcome of the next scan.

Any advice?

Regards to all you brave people.

Dennis

23 Replies

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  • Welcome Dennis, you will find lots of help from people on this forum, although I am afraid I don't have experience of your problems. Have you phoned Headway for all the information you can get about brain tumours. The more informed information you can get (not scares on the web) the better you will be able to make decisions when you have had your next tests.

    Wishing you all the best, do come on here to chat whenever you need, there will always be someone who knows just how you feel.

    Jan

  • Dear Jan,

    Thank you so much for replying so promptly, nice to know there is someone out there. I have read a lot of the posts and have been somewhat reassured by them, a lot of very brave folks out there, afraid I am not one of them!

    Will get in touch with Headway tomorrow, thanks.

    Regards

    Dennis

  • Dennis I am so sorry you are facing this but believe me you are braver than you realise.

    I agree with what others have said about avoiding google and sticking with proper medical information because there is just too much nonsense out there and a lot of it can scare the pants off you unnecessarily.

    My advice would be to take someone with you to all the appointments. This stuff is scary and we tend not to hear half of what is being said to us at appointments when "big stuff" is being discussed, and having another person to focus on the information is helpful in my experience. If there is anything you are unsure of or any unfamiliar terms used ask them to explain, get them to write it down if needed. Do not be embarrassed to ask them to explain again if there is anything you do not understand. You can also ask to be copied into any correspondence with your doctor if you think it would be helpful.

    Information is power and once you have had your scans and get all the results you and your docs can make a plan. In the meantime try to take good care of yourself. I am not going to tell you not to worry because that is pointless...of course you are going to worry...but please try to be kind to and gentle with yourself. You are braver than you realise.

  • Hello,

    Thank you so much for the welcome and very sensible advice. I will certainly take Gill, my wife, with me to the next consultation for you are absolutely right, so much of what I have been told in the past has just gone over my head, I seem to think but do not listen!

    I don't know your name and I would like to contact you again, do I just look for "Iforget"?

    Thank you again for your kindness.

    Dennis

  • Hello Dennis.. a very warm welcome to you and so glad you found Headway. .i always log on to it at least once a day........I have had two strokes in the past two years and yes of course you will be feeling frightened and unsure of what's round the corner. Your wife must be feeling the same.

    Keep in touch with us and let us know how you get on.

    Val

  • By the way, Dennis, you aren't 85 years OLD - you are 85 years YOUNG- 80 is the new 60 these days! I know so many 80+ year olds doing exactly the same as 30 year olds - aerobics, zumba, athletics etc. Go for it!

  • My advice - focus on diet from today. Link below from the brain tumour charity website:

    thebraintumourcharity.org/u...

    I met a lady who lived on the Isle of Wight. She managed her cancer with strict adherence to this diet. Something for you to consider - how disciplined are you? could you remove processed foods from your diet?

    The ketogenic diet (KD) is a special high fat, low carbohydrate diet which also requires careful measurement of proteins. It is called ketogenic because it restricts carbohydrate intake, forcing the body to produce an alternative form of energy molecule from fat, called ketones. This diet was first used almost a century ago as a way to manage epilepsy in children who didn't respond to existing medication.

    Over the past few years there has been a surge in interest regarding the potential of the KD in treating brain tumours and related seizures.

    Supporters of the KD argue that cancer cells are dependent solely on sugars (simple carbohydrates) and so strictly reducing the intake of carbohydrates and sugar can starve the tumour, while the body fulfils its energy needs by producing and using ketone molecules.

    Unfortunately, there is currently no scientific evidence supporting the effectiveness of the KD in treating brain tumours. If you still want to try this diet, please consult with your doctor or registered dietitian because, without proper monitoring, KD can cause a rapid and potentially harmful loss of weight.

    Here is a link to a doctors story on how he used diet to manage brain cancer:

    prevention.com/food/food-re...

    See the website realfoods.co.uk to order fresh turmeric for your daily juice!

    When I purchased my juicer in John Lewis in London, the sales lady told me her husband had been diagnosed with brain cancer but he managed it into remission (partial or complete, I don't know) using fresh turmeric based juices!

    Plenty of proactive things you can do which don't cost but do require discipline to manage your health. Wishing you much fortitude, determination and focus.

    All the Best.

  • Hello Dennis. You're understandably apprehensive ; I'm sure everyone here will identify with that...............'here' being the operative word. Some lovely people here have had surgery to remove tumours and are still around years later to talk about it.

    As Jan has said, don't listen to scare stories ; phone Headway tomorrow on 0808 800 2244 between 9am & 5pm. It's a free call and they're lovely folk who'll give you factual & reassuring information.

    We're here if/whenever you want to talk m'love. (Sending you some cyber-hugs in the meantime) Let us know how you're getting on won't you ? Cat x

  • Consider taking cannabidiol (cbd) oil which has good benefits for your health and is used by people as a painkiller, antiseizure, to combat anxiety, as a sleep aid and reportedly regular use either of its own merit or in combination with existing cancer treatments has caused some cancers to go into remission. I watched a tv programme on people using cbd oil and one person with a brain tumor was using it regularly and his tumor had shrunk on a scan. Don't expect doctors to tell you about cbd oil or any kind of novel or alternative treatment, do your own research. You can buy cbd oil here cbdbrothers.com/ I buy from them, they're a reputable supplier and I'm sure they'd be willing to answer any questions you have.

    Have to agree on turmeric being anti-cancer, but don't buy the tablets they don't pass as easily into the bloodstream, mix about a teaspoon of powder it with a vegetable oil or even butter if you prefer, cook the mixture for a few minutes before consuming. Or you can make a meal using turmeric whichever you prefer. This will make the turmeric bind to the fats which helps it to get absorbed into the blook and into the brain. Turmeric is also good if you've got alzheimers as it combats amyloid plaques that form in the brain. Basically turmeric is a brain food.

  • Welcome to this lovely forum Dennis! Sorry to hear about your news but it's good that you know and can now take steps to help! I agree with taking someone with you to your appointment as it is very difficult to take in everything that is being said and then you are left at home mulling things over in your head and wondering. I always take somebody with me, I also have a tumour, it was discovered in 2012, I had an op weeks later as it was rather large but I know i couldn't possibly remember everything that was said to me, two sets of ears are def better than one!

    All the best to you Dennis, always feel you can ask, vent or just share news here, everybody is very friendly and open.

    xx

  • Peaches2,

    Thank you for your reply, it is encouraging and I shall do as you say. I will try to keep in touch for you are all so kind.

    Regards

    Dennis

  • Hi Dennis. So sorry to hear about your diagnosis. I'm glad your tumour hasn't caused problems for you before now though. Hopefully that will continue.. But I find the best way to deal with my BI (which is ongoing) is to maintain a healthy positive attitude. Although any BI is obviously a huge deal I really believe that positivity helps - and you feel happier every day too.

  • Hello Icd8, (Is that right or do I have a name for you?)

    Thanks for your answer. It is early days for me but I am trying to be positive if only for my wife's sake. I am to go for a full body scan next week when they should be able to tell me if this suspected tumour has originated from somewhere else. Scary times!

    Thank you for your support however.

    Good luck to you.

    Dennis

  • Hi Dennis. Very best of luck for next week. I'm so glad your wife is able to support you. You are right and anything like this is horrendously scary. I don't have a tumour myself but an Arteriovenous Malformation (AVM) which is quite similar in some ways. Its not going anywhere so I am resigned to live with it. If you need to sound off at all go ahead in the forum. We all understand and are here for you.

    Cheers

    Louise

  • Hi Dennis,

    I'm sorry to hear about this. Welcome to Headway.

    On the subject of food, have a look at Tina M Sullivan, Nourish Your Noggin for recipes. They may help you. Coconut oil used for cooking, avocado, eggs to feed the brain, herbs such as tumeric and ginger.

    You can also look at drdiane.com She is a psychologist herself and has had brain surgery and post concussion syndrome. Her book on brain injury is good.

    I wrote a post on Headway about a project called MindApp started by my former colleague, Fred van den Broek, who worked in IT for mobile banking. Fred had a brain tumour and wanted to use his knowledge of IT and mobile to help fellow patients navigate complex treatment plans. A crowd funding campaign and sponsorship from companies has allowed a team in Amsterdam to build the app. It should be released soon. Doctors at the VU Medical centre in Amsterdam also gave input on the app. It may help you and you could show it to your medical team in the UK? MindApp is run by a foundation Fred founded called Into The Clear. You can find their details via a facebook page. I'm sure they would be able to put you in touch with relevant people if you write to them.

    facebook.com/MindAppNL/

    Hope this helps

  • in 2005 my wife, age 59 at the time, after an auto accident, had a seizure due to some swelling. Up to that point she had never had any problems. I don't recall all the details, but after they did a CAT scan they found she had a brain tumor too, however they didn't take it out at the time. She didn't have symptoms and she wasn't keen on having surgery for it. The Neurosurgeon was all about getting the surgery done, financial gain for him. Finally after 18 months he got frustrated and told us there was no reason to see him anymore. Somehow we found out to go see a Neurologist for a consult. It was the best consult, as we found out the type of tumor she had many people have, never have any symptoms and die with, not because of. The neurologist told us that if she wasn't having problems, just come back in a year and don't worry about the tumor unless she started having any problems. Well it's 2017 and still no problems. It has bee a happy ending for us for sure. So my advice get a second opinion from a Neurologist before you decide if surgery is needed or not. Wishing you all the best whatever you find out and decide.

  • Thank you so much for this. So far I am not having any problems and would not have known of any if I had not had the CT scan for slight memory loss. I am having a full body scan next week and if there is no nasty news from that I shall certainly get a second opinion from a Neurologist. Thank you so much for you time and advice. You have given me comfort.

    Regards

    Dennis.

  • Hello there Dennis

    Welcome from me ... i have been away from the forum for a while so a bit late in looking in on you!

    Well you will see what lovely folks there are here by now!.

    Not much to add in the way of advice. Just to say that I am a brain tumour survivor and it was over twenty years now and I am in my sixties

    Sending you all my best wishes xxx

    Nan

  • Hello Nan,

    Thank you for responding and it heartens me to hear that you too have had the same problems as me. I am grateful to all you wonderful people who give up your time to reassure we apprehensive mortals. Thank you.

    Dennis

  • I had a rare tumor behind my eye that causes 90% of the patients to loose their eye it's behind in order to extract the tumor or they go blind and it damages the eye. Well, in 2007 a very experimental and unique approach using technology that had been around for quite a while in Europe and in general surgery began to be applied to the removal of head tumors. No cutting my head open or losing an eyeball. They used a stealth guided imaging mapping system and an endoscope to remove my tumor intra- nasal- meaning through my nostril. Vision improved so greatly, I needed glasses no more and I had worn those since I was a child. I've been tumor free for 10 years and will celebrate my 10th anniversary of tumor freedom in May 2017. If you're in England they do those operations only at the South Hampton Hospital in the NHS system, no other known hospital does them in England. My surgery was done in the US in Atlanta, GA by surgeons trained internationally. I know everywhere on the globe they do these surgeries at because it was my mission not to die from it. Mine was so severe and causing me a 99% blockage and so dangerous to remove I had several top surgeons at Emory University Health System, ranked among the top in the world, tell me I just needed palliative care and told my parents I would pass away. I beat another sinus/ bone disease in my head at 17 that everyone in the medical community felt there was no hope. Surgeon removed the diseased part of my sinus and I lived to 31 and still here to type this to you. It's about perseverance in life and not perception of the landscape. I will add though, I'm not pushing my religion on anyone, but an angel was by my bedside when I woke up from that surgery and my family prayed. Lost my great grandmother to this same type of tumor. She had one of the first attempts at head surgery at Grady in Atlanta and they hit something and it paralyzed her to a wheelchair. The stealth guidance now used eliminates half of the risk. I never once allowed myself to be defined by my diagnoses, but defined it and I never saw myself as sick. It's mind over matter. You have to tell yourself you're going to be okay and everything is okay. Well Wishes and God Bless! I hope you have a speedy recovery.

  • Hello Ballet and thank you for writing so fully and comfortingly. I guess by your title that you are a lady but of course I could be wrong! I am very pleased to hear that your treatment has turned out the way it has and that you are now ok. Like you, I do pray and try to remain positive. I fear that I am not as committed as you were but you give me encouragement.

    I have a full body scan next week so must wait until after that. Thank you again for your kindness. All good wishes

    Dennis L

  • Hi Dennis. I dont reallyvhave any advice as I had a brain hemorrhage. All I can say is I didnt have seizures either but was on a tablet called nimodopine to prevent seizures whilst I was in hospital. I wish you well

  • Thank you for taking the trouble to answer my post. I really appreciate it. I feel quite well at the moment, long may it last.

    Regards

    Dennis

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