Justin1970 Posted March 2, 2022 Author Share Posted March 2, 2022 Yes I had ct scan in January to check how the treatment had done for my lung and lymph nodes and they were happy with the results, I had the mri on my brain on Sunday which is when they found 2mm and 1.3cm mets I'm hoping there is a treatment plan the appointment is tomorrow morning so atleast it's moving fast, I know a lot of people who have this live for a long time but I think when it's happening to you the sadness you feel for your family is unbearable I feel so sorry for all of them and wish I could be more positive and stronger catlady91, Izzy and LouT 3 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 2, 2022 Share Posted March 2, 2022 Sending you lots of positive vibes, Justin. I know the thought of family is often the worst, so I feel for you, and totally understand your feat.. But brain radiation is quite effective from what I gather. Dozens of people in my immunotherapy group have been through it and are here to tell the tale several years out. Rikke LouT, Izzy and catlady91 3 Quote Link to comment Share on other sites More sharing options...
EMandM Posted March 2, 2022 Share Posted March 2, 2022 Hi Justin, I’m so sorry to hear you’re going through this. I have a young family, so know what you mean about the crushing weight of it all. But we have to stay as positive as we can. I know that feels next to impossible when there is so much uncertainty… but once you have your treatment plan, hopefully that will help! I’m a member of several Fb groups for my type of cancer, and I follow a number of people on Instagram in similar positions. Many have had brain mets and have dealt with them in a number of different ways. So while there’s treatment available, there is always hope! A cancer diagnosis is seriously tough, psychologically speaking. My hospital (Guys & St Thomas) offered me psychological support alongside my treatment-and I wholeheartedly recommend it!! Just being able to talk about it all has been really helpful in terms of processing things. Is it worth talking to your oncologist to see if that’s something your hospital offers? If not, calling Macmillan is an option-I found talking to them really helpful, and pretty cathartic. It’s so important to look after your mental well-being, as well as your physical!! Sending you lots of positive vibes and virtual hugs. Gini x LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 3, 2022 Author Share Posted March 3, 2022 I had the meeting this morning, and there going to treat me, hopefully there going to get me in pretty fast! There going to use gamma knife, which will be in Bristol. They've said that without treatment it's likely to be 3 months. And with treatment they'd like to think I've got 6 months plus! The oncologist said that treatment can be successful and I could have a year to even 3 years, they just don't know. Many thanks Justin WalkingHorse, RJN and Izzy 2 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 3, 2022 Share Posted March 3, 2022 Dear Justin, I am really sorry - that sounds like a lot to take in. I hope you get treatment really quickly. I also hope you can allow yourself to believe in the best-case outcome. There are so many factors and all the latest technologies have very little data behind them, so who knows? I am keeping my fingers crossed for a positive outcome. WalkingHorse, Izzy and LouT 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 3, 2022 Author Share Posted March 3, 2022 Thanks rikke fingers crossed they will sort it all out I have read people can live for years with brain mets, I have a body ct scan on Wednesday just to check it's nowhere else there hopeful it isn't as I only had a scan in January and it was clear then I will keep everyone informed RJN and WalkingHorse 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 3, 2022 Share Posted March 3, 2022 Justin, What a prognosis!!!...1 month, 3 months, 6 months, 1 year, 3 years... At this point you need to focus on each battle separately. Right now the battle is the brain mets and getting rid of them that is your main focus. None of us actually know when all this will end so, don't lock yourself into a number, but go into each battle to win and remember there are folks here who were told to "get there affairs in order" and they are still here years later. Every month that passes new treatments and modalities are deployed against cancer of all types (including LC). So, every day we're here, we're closer to a new treatment. That is where we should focus and not on a group of numbers that occupy such a large span... Remember, they admitted, "they don't know"...so don't you lock on a number. Lou BridgetO, WalkingHorse, RJN and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 3, 2022 Author Share Posted March 3, 2022 Thanks lou I know your right it's just so hard knowing you will have to leave your loved ones and how hard this is for them, I'm hoping for some good news they did seem fairly positive so I guess we'll have to wait and see Thanks Justin WalkingHorse, LouT and Izzy 3 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted March 3, 2022 Share Posted March 3, 2022 Wow this oncologist can't make up his mind. There are some doctors that are more pessimistic than others. I really didn't think that they gave prognises anymore unless someone is in a really bad way and the cancer is too advanced for treatment other than palliative. They never gave my mum a prognosis though one doctor said her cancer was incurable and her oncologist gave her treatment with curative intent. My mum had an awful oncologist before her current one who is amazing. He was so negative and didn't seem to know much about the latest treatments or clinical trials. If you're unhappy with your oncologist, switch to a new one who will do his best to get you the best treatment. I also remember I spoke to this awful McMillan nurse when my mum was first diagnosed and she said that people with stage IIIB lung cancer usually only live for six months. Well it's been 2 years and mum is NED 😂. Our old cat was diagnosed with two brain tumors and gave his two months, three max but he lived for over three years which is like 15 years in human years!! He was an old cat- he was almost 20 when he died! My point is that no one knows how long anyone will live. It helps to be your own advocate. With my cat the vet and family members said to put him down during those 3 years but he was still happy. We only put him down because towards the end he was really suffering and we knew it was his time. Keep your chin up. Treatments have improved a lot over the past few years. Find an oncologist who believes in you and is up to date with the latest treatments. Izzy, BridgetO and LouT 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 3, 2022 Author Share Posted March 3, 2022 Thanks for the reply I think I will look into changing oncologists but not really sure how to go about it, I have read a few good survivors stories but everything the oncologist said today was quite discouraging to be honest he basically said I'm not at palliative care but prognosis is poor and I won't live long with brain mets ,the oncologist I saw on Monday said I could get years but this one made no commitment and they are the same team so I've been left with some uncertainty of who to trust LouT 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 3, 2022 Share Posted March 3, 2022 Hi Justin, I am seeing my clinical oncologist (I.e. the one responsible for radiotherapy) next Wednesday. He is fairly blunt, but also a really top specialist. I will ask him about this and also about how to potentially see a different doctor. I have at no point been given a time-line from any of the four oncologists I have been across. All have been clear that for people like us - young(ish) people in general good health, statistics are really not useful. On the anecdotal front, I was just thinking of my beloved aunt who was diagnosed with an enormous inoperable brain tumour at 70 almost 10 years ago and was given 3 months. She is still alive and kicking with no treatment, so life is strange! R LouT 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted March 3, 2022 Share Posted March 3, 2022 I so agree with Lou and @catlady91. I'm concerned that the oncologist who gave you a poor prognosis doesn't have enough up-to-date experience. If he doesn't know, it does not help you to hear what the worst outcome could be. I've never been given a prognosis, even though I asked at the beginning. Take things one day at a time, one treatment day at a time. I hope you can get a more trustworthy oncologist. catlady91, WalkingHorse and LouT 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 3, 2022 Author Share Posted March 3, 2022 Thank you all I'm not sure how difficult it is to change the oncologist team but they haven't been the best with there prognosis everyone has said something different and left me feeling pretty low about everything and every part of this seems to be different to each oncologist that talks to me I don't really know what to think of it all at the moment, it's very difficult for my family as I don't seem to have any answers and when I do they are all different, my oncologist today said all lung cancer is different but with the brain mets present it's not great but the other one on Monday said there is definitely hope and could achieve years like other survivors with the same Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 4, 2022 Author Share Posted March 4, 2022 I just wondered has anyone on here had much success with stories of brain mets and survivors stories as I can't seem to find much about anything thanks in advance Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 4, 2022 Share Posted March 4, 2022 Justin, Let me see if I can get @Lisa Haines to wade in. She might be of some help. Stay the course. Tom LouT and Lisa Haines 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 5, 2022 Author Share Posted March 5, 2022 That would be brilliant thank you, I have read some great stories of survivors on this site but Google really is bad for giving you no hope whatsoever saying most of the time you get approximately 3 to 6 months with this, I'm hoping to get all the treatments done ASAP and see where we go from there Many thanks Justin LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 6, 2022 Author Share Posted March 6, 2022 Morning all struggling this week with depression feels like there's absolutely no hope of getting through this, I'm going to try and be more positive for my family it must be sole destroying to watch me and I feel terrible for doing this to them, I tell them over and over how much I love them and what they mean to me but nothing makes me feel any better, I can't stay off of the Internet and I know that's wrong because of the outdated averages but I just keep looking for the answers I want to read,it does seem like a lot of people have good results with what I have but why can't I believe it will happen to me Many thanks Justin WalkingHorse, LouT and RJN 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 6, 2022 Share Posted March 6, 2022 Justin, You shouldn't need to suffer like this. Please speak to your doctor and get some help. Anxiety and depression can cause as much torment as any disease. You need to get out of the ethernet and request help...many folks on here have done so and it proved to be very helpful for them. Don't delay...call your doctor and tell him you need help, you do not have to go through this additional pain. Lou WalkingHorse and Izzy 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 6, 2022 Author Share Posted March 6, 2022 I will contact the Dr's tomorrow I have been given antidepressants but the Dr has said they probably won't do anything LouT and Izzy 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 6, 2022 Share Posted March 6, 2022 If they didn't do anything then nobody would prescribe or use them. At some point in the future you may need to look into a different doctor as well. Lou Justin1970, WalkingHorse and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 6, 2022 Author Share Posted March 6, 2022 Hopefully they get on with the gamma knife radiosurgery soon and I start feeling a bit more like fighting this, I don't mean to trouble everyone on here with this just having a bit of a rough time dealing with the new situation RJN, Izzy, WalkingHorse and 1 other 4 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 6, 2022 Share Posted March 6, 2022 Please - that is what forums like these are for. Don’t feel bad for sharing and reaching out. But yeah, I think having a clear plan forward should help you cope better mentally as well. Big e-hug, Rikke WalkingHorse, Izzy, Justin1970 and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 6, 2022 Author Share Posted March 6, 2022 Thanks rikke I'm sure I will feel better when I start treatment again it's just been a bit difficult to take in RJN, Izzy and LouT 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 6, 2022 Share Posted March 6, 2022 Justin, To reinforce what Rikke said; don't worry about coming here and venting. My only point is to see that you don't try and tough this out without all the help that can be available to you. Lou Tom Galli, Izzy, Justin1970 and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 6, 2022 Author Share Posted March 6, 2022 Thanks lou I will get all the help I can just struggling this week hopefully the treatment will all go well and I can move forward LouT, Izzy and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.