Has anyone had WBR (whole brain radia... - The Roy Castle Lu...
Has anyone had WBR (whole brain radiation) for preventive purposes of keeping any cancer from the brain?
No, its never been suggested to me, mind you It's never been suggested that I have a brain scan either to see if there is any there!
I am on another forum called 'Inspire' most people on that one are from USA and they seem to do routine brain CT's over there. They do do WBR but it seems only if there are any mets to the brain. However, the gold standard seems to be 'cyberknife' which is a tageted precise form of radiotherapy to tackle any brain mets. It does not have all the side effects of WBR (which has been asocciated with Altzeimers). If ever I need it I will try for the cyberknife route. There are currently 3 systems in the UK, 2 in the private sector and 1 NHS at Mount Vernon hosp in London. Read artilce.
dailymail.co.uk/health/arti....
I know that wasn't a direct answer to your question but personnally I wouldn't go down that route for profilactic treatment. Hope that was useful.
Take care
Lyn x
Thank you Lyn for your input. I truly appreciate it. I am leaning towards NOT having it done as i am afraid of the "memory" issues. I struggle enough now from treatments i had before. Again thank you! I have heard of Inspire. I will check that site out!
Linda
Hello
I don't have any information about this type of treatment and have not come across anyone who has been offered to date. I will make some enquiries today and come back to you as soon as possible. I apologise for not be more helpful at this point but am very interested to understand more about it. I think Lyn has given us some really useful insights so thank you Lyn.
My best wishes to you both, take care.
Joanna x
Thank you Joanna..don't feel bad about not being able to reply to my question. You are among MOST people that have NOT been presented this issue. I know at the end of the day the decision has to come from me. Not a easy task that's for sure. Again thank you
Linda
Hi Kimba,
I am sorry you feel the need to ask this question,I do keep in touch with lots of people with lung cancer in social networks one of which is Team Inspire that Lyn has just mentioned.I am also a member of LUNGevity and cancergrace.
I have a few friends who are currently going through WBR or have completed this treatment.I am far from being an expert in this procedure,but I think it is only undertaken when there is positive evidence of cancer cells in the brain,rather than using it as a preventative measure.cancergrace.org is a site which is staffed by a team of oncologists who give their time voluntary to answer questions on lung cancer exclusively from enquirers.As a first step in finding some support why dont you p ut your question to Dr Jack West and his team,you wont have to wait long for an answer.
Closer to home of course, you could discuss this with your own lung nurse,doctor or oncologist.There are also helplines that are available such as the Macmillan Nurses you can phone and get some expert advice on any questions you have regarding your cancer.
I can understand how you are feeling,we all are looking for reassurance,there are many survivors of this disease,regardless of type and staging.Have you had a look at some of the survivors stories in this site?one of them is about my friend Robert Lowe,dxd in 1993 with SCLC given 2 months to live,had his treatments and made a full recovery,then in 2007 he was dxd with NSCLC,had his treatments went on to make a full recovery.Today at 72 his lust for life and energy is just amazing,I sure want to follow his example.My very best wishes to you that you find the peace you are looking for.
Wow Eric.. what a awesome response. You too gave me a lot of information to look up and i am certainly going to check out the site and contacts you listed also.
God Bless Robert! Wow.. i pray i am as lucky as he has been. What a blessing.
As far as my diagnosis...I was diagnosed with "limited small cell lung cancer". As you probably already know that means my cancer did not spread outside of my right lung. The tumor was the size of a walnut when i was diagnosed. One lymph node was involved. I was started immediately on chemo and radiation. That was back in Dec, 2010. When i finished my treatments mid Feb, i was cancer free. I have by the grace of God been clear ever since. I get scanned every 3 months.
It was my radiation Dr that suggested the WBR. As he put it to me.. SCLC has been known to come back and spread to the brain. That's why he wanted to do it as a "preventive" measure.. to lower the chances of me getting back and in the brain. There is a lot i have to weigh out.. and my feelings right now.. it it isn't broke.. don't try and fix it. I have to weigh in the facts of memory issues..which i am still trying to get back on track since my treatments. I am a lot better now. I was pretty back up until a few months ago. I suffered a lot with chemo brain. Over time i am getting better and better. I am amazed at myself that i can sit here and actually write this message without any real issues!
By the way.. on the WBR i did get a 2nd opinion and that was "any preventive measure is good, but you also need to figure in your age, the fact that you already have some short term memory issues".. yada yada yada. Bottom line..it's up to me.
Thank you again for the great information and i will check it out!
Linda
Thank you so much Eric. Kimba, I hope you find Eric's advice helpful. I don't think I can anything more useful than what he has said. I think you should contact your lung cancer nurse or oncologist and make a list of all your questions before you do so. There are some very inspirational people here who can offer some very hopeful and heart warming experience that may help you also. Please keep in touch and let us know how you get on. Thinking of you, Joanna x
Thank you Joanna... i will keep in touch with all of you! Prayers going out for all of you!
It will be good to hear from you again and in the meantime, take care. Joanna x
hi i had whole brain radiation December 2010 as a preventive measure, i was diagnosis with extensive sclc in June 2010. i had radiation to my chest and chemo and my treatment was finished with WBR. i have had no real side effects from the brain radiation, fatigue during the treatment but my memory is as it always was but perhaps thats more to do with my age as i am pretty young at 38yrs old and my 3 teenagers keep me on my toes mentally. It really is your choice.
Hi . My friend was diagnosed with small cell lung cancer and had chemo and then radiotherapy on her chest and brain . Her memory seems ok - its 8 weeks since , but she is feeling sick and has got worse daily and now pain in tummy. Going with her tomorrow to see Oncologist with her. She was told that there was a chance that the cancer would have gone to her brain and that it would be best to have it.
She is`42.
Take care . x
