Bad News Today.: Hi everyone just back... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Bad News Today.

Loimie profile image

Hi everyone just back from Christie Hospital, brain scan today. Knew something wrong when I had to wait to see Doctor, it wasn’t Dr Summer, it was bad news it’s gone to my brain, in shock now, don’t know what to do or think anymore. I hope someone can give me some hope but I don’t think I’ll be here much longer. I just want to thank you all for all your support. Thinking of you all dealing with this evil disease. Love Pam

56 Replies

The first long term survivor I met was in his 12th year living with metastatic lung cancer. His diagnosis was made when he had a seizure due to three brain metastases. Two years he had a reoccurrence.

Still he survived for 18 years and helped thousands of newly diagnosed patients come to terms with their disease or treatment.

More if his story here: lung.org/lung-force/lung-fo...

Loimie profile image
Loimie in reply to Denzie

Thanks Denzie, for caring and sharing. I will look at the link, that’s amazing 12 years, but I feel I haven’t got long, I wish I had just a few more years. I’ll see what my consultant says at Christie’s in Manchester. Just don’t know what to do with myself. Sending love and best wishes.

Denzie profile image
Denzie in reply to Loimie

Sending hope that there is a next step. The decision to treat or to choose not to is an intensely difficult choice. And choosing to end treatment is not giving up, it’s the patient deciding to end on their terms.

Do let us know what you learn. I send hope and prayers for peace and clarity.

Loimie profile image
Loimie in reply to Denzie

Thank you Denzie, no I will fight this until it beats me! I don't know when that will be, but I'm going to give it all I've got. Got an extra appointment next week with Dr Summer to discuss brain scan sending love and best wishes to you. Xxx

Hi Pam so sorry to hear your bad news but please that doesn't mean it's the end of the road. I've read positive stories on here with people in similar circumstances. You know there are lots of old and new treatments out there now so try to stay positive, which I personally know is hard, and see what they offer you 🤞. When will you know what the next plan will be let me know. Always here for you ❤ ❤❤

Loimie profile image
Loimie in reply to Ollie13

Thanks Ollie, you’re so caring and always here for me. I’m hoping Dr Summer calls me soon with a plan, but I don’t think there will be one, I really don’t think I’ll last much longer. I’m in shock, don’t want to talk to even close family, definitely can’t tell my boys it would crush them. Sending love and thank you for caring. Pam

💕

Red58 profile image
Red58 in reply to Loimie

Please don’t give up as Ollie and others say loads of treatments thinking of you stay strong and wait and see if offer treatment plan xxxxx

Loimie profile image
Loimie in reply to Red58

Thanks Red, I’m trying to be strong but it’s hard, what have we done to deserve this. I just don’t want to be around anymore, causing all this trouble and burden to my family. Best wishes to you and thanks again. xx

Loimie profile image
Loimie in reply to Ollie13

Hello Ollie, how are you, not heard from you for a while. Sending all my love. Pam xxxx

Ollie13 profile image
Ollie13 in reply to Loimie

Hi Pam first how are you and has your oncologist / team come up with a new plan for you as yet. When I was in my dark places the wellness nurse got me in touch with Macmillan who got me free counselling. I've mentioned it before I found it easier to talk to her than my family or close friends. In the past I would've been embarrassed but Cancer has taught me a few things. Pam don't be so hard on yourself if the boot was on the other foot you'd be first in line for support. 🤗Me I'm starting maintenance chemotherapy on 3rd where the time/days have gone I have no idea 😄 busy having blood, covid feel like a pin cushion 🙄.

Please let me know how you are 🥰🥰🥰

Loimie profile image
Loimie in reply to Ollie13

Hi Ollie lovely to hear from you. The Macmillan team are great aren't they, that's good that you've got counselling. and yes I find it easier sometimes to talk to them rather than family. Seen Dr Summer today, had CT of abdomen and pelvis, apparently just routine precaution and everything fine. Dr Summer disgussed the brain cancer, it's very tiny and not spread, referred me Salford Royal, go Friday for chat, Monday for mask fitting, then they will send for me. Cancer in lung not enlarged. I feel a bit more positive, but not out of the woods. It's all very tiring isn't it Ollie. Let me know how you get on. 💕

Please stop thinking your a burden to your family your so lucky they are there for you as soon as mine heard cancer that was it never heard from them the odd text that it my son look after me My mother only one I could speak to sadly she passed away 2weeks ago not one my siblings even spoke to me at funeral. Like me you are scared we think we are dying as long as there is treatment for us there is hope please let your family help you I’m wait be told if spread to liver it shrink lungs what ever on liver is growing I’m petrified the same as you I’ve felt like give up but we can’t please let family help you I’m thinking of you xxxx

Good Morning Pam, I'm so sorry to hear of your bad news. Please DO NOT put your negative thoughts into the universe. You can and you need to fight this awful Bloody disease as hard as you can. This world still has a space for you to be. We are all fighters of this Cancer S**T and it has taken too many Good people already. Take things as they come and ask if there are any treatments available.Be Strong Sweetheart and God Bless

John-Paul.

Loimie profile image
Loimie in reply to Babydolltina

Thanks John-Paul, for your kind words. I don't think I can fight it anymore, it's like you say it's a S**T vile disease that kicks you when you're down. I wonder a lot now what I must have done in life to deserve this, I'm sure you're the same, where's your cancer John Paul? I didn't think I was a bad person, yes perhaps I'm not perfect but I've never done anything really bad that I know of. Thinking of you and sending love.

Loimie profile image
Loimie in reply to Babydolltina

I'm sorry Jonh-Paul, I'm seen on your profile that it was your wife Tina, she's so beautiful. I'm so sorry for your loss. Xxx

Babydolltina profile image
Babydolltina in reply to Loimie

Pam, Thank You for saying that Tina was beautiful. That she certainly was. I just keep the news feed from this site to try and help others in any way I can. You need to grab this news by the horns and kick its butt. Cancer is just another word and as you have come as far as you have, just take it a few more steps and BE STRONG!

I watched Tina fight as hard as she could, enduring 12 litres of Chemo ( carboplatin and etopiside) and then she had radiotherapy, 20 sessions to her lung with 8 blasts to her head. She contracted Covid in November 2019 and kicked that too after 17 days in hospital. Sadly cancer beat her on the 18th December 2019.

You need to be as strong as you can for your family as they will be hurting inside and probably hiding their hurt like I did. They will be there for you always so pester the Doctors for everything available.

God Bless Pam.

Prayers for you all.

oh Pam, what a shock for you.

I can only echo the other comments here....brain mets are very common with lung cancer and Dr Summers WILL have a plan so please don't think its time to give up.

Please also think about talking to your boys. Its a very lonely place for you to be without talking to those you love. I know from the other side of the fence, I would be devastated if my husband felt he couldn't talk to me. There's not much I can do except listen but if doing that helps in the smallest way, I'm there for him. I'm sure your family will feel exactly the same way.Sending love ,

Sarah ❤️

Loimie profile image
Loimie in reply to sassassas

Thanks Sarah your words are so kind. I talk to my husband but it's hard, I can't bring myself to tell my sons the latest about it spreading to brain, it will crush them, so I'm not going to tell them unless there's any obvious signs. I'm glad you're here to listen Sarah and I'm here for you too. Sending love and best wishes. Pam 💕

My husband had the same diagnosis, it was such a shock but he talked to me & our sons. He had chemo, immuno & steroids & given a 5 year plus prognosis. Be kind to yourself sending hugs x

Loimie profile image
Loimie in reply to KT22

Thanks for your kind words KT, yes I'm going to see what Dr Summer says and then, yes have to tell my boys, my husband thinks right to be honest, they're 41 and 36, and they both said at the beginning they wanted to be told everything so they can support me and Col. I'm thinking of you and your husband and wish him well. Sending love. 💕

KT22 profile image
KT22 in reply to Loimie

We have twin sons aged 36. Very sadly my husband passed away last year. X

Loimie profile image
Loimie in reply to KT22

I’m so sorry your husband passed away KT, it must be difficult for you and your family. Thinking of you all and sending love. Pam xxxx

KT22 profile image
KT22 in reply to Loimie

Thank you Pam. I’m really struggling. I wish you all the best with your treatment. A lovely man we met at the same time as my husband was diagnosed with the same diagnosis, is doing extremely well & just has Immuno to keep him stable. He’s living a normal life. Take care I’ll be thinking of you, the Christie has a brilliant reputation. Sending love x

Loimie profile image
Loimie in reply to KT22

It must be so hard KT, loving each other and being together so long, it’s heart breaking. Happy memories to treasure, he’ll always be close to you and your family. Yes, so many with this diagnosis doing so well, if you can find them on searching, I’ve stopped doing it now, because it’s all doom and gloom online, most outdated anyway. Saw an amazing article in the Sunday Express and was also on the news, a cancer vaccine is being trialed at Christie Hospital and Royal London for advanced lung, prostate and ovarian. In the volunteers that took part, the cancer had disappeared after the jabs that are only every 6-8 weeks. Due to be rolled out in 18 months to 2 years. I really do believe we are getting closer to beating this curse! Thinking of you and sending love, if you ever need a chat I’m always here for you. Sending love. Pam xxxx

KT22 profile image
KT22 in reply to Loimie

Thank you so much Pam. That means a lot. I don’t have many friends as my husband & I were inseparable. Xx

Hi Loimie, please don’t be scared. I am 39 and was diagnosed with stage 4 lung cancer with brain mets! I am currently cancer free and stable! The treatment for the brain mets was very straight forward. I do not plan on letting cancer win. Stay strong and positive! Wishing you all the luck in the world xx

Loimie profile image
Loimie in reply to Locket39

Thank you so much for your kind words, it really helps me. Can I ask when were you diagnosed Locket and did you have immunotherapy, I have my 3rd session on 4 December, also what treatment for brain mets,,I hope you don't mind me asking. Sending love and best wishes. Pam 💕

Locket39 profile image
Locket39 in reply to Loimie

Of course I don’t mind you asking. I was diagnosed in March and had Gamar knife for the brain mets! I then had chemo and immunotherapy but only had 3 treatments as it caused kidney damage and I only have 1 kidney. I am now being placed on targeted therapy to keep me stable as long as possible! Never give up hope. Walk as much as possible and just stay as heathy as possible would be my advise as it a good for your mental health! I have the results of my scan again today xx

Loimie profile image
Loimie in reply to Locket39

Hi Locket, gosh you have been through a hard time, what is Gamar Knife? You only have one kidney as well! I'm much more positive today, had a call from my macmillan nurse, very good aren't they. I've got an extra appointment next week with Dr Summer to discuss. How was your scan result Locket? Sending love and best wishes. Pam xxx

Locket39 profile image
Locket39 in reply to Loimie

Hi, sorry Gamma Knife is like radio surgery! It’s is very targeted to your brain mets. My cancer is still stable with no evidence of disease! Having a PET scan in January to double check before placing me on targeted therapy! I am glad you are feeling better. I really find working and walking helps me! Just keep busy and live normally, well as much as possible! Remember you are allowed to have down days. Sending you all the luck and best wishes 🥰

Oh Pam, so sorry to hear of your sad news and I can understand the hard knock to your confidence.. You were so supportive of me when I first came onto this site and your positivity has kept me going through long waits of uncertainty. Don't give up hope, you would say, so see what Dr Summer says as there is always a second opinion and different treatments out there. I am sending my very best wishes and hugs to you.

Rob

Loimie profile image
Loimie in reply to Antrobus2021

Thanks Rob for your kind words and keeping in touch, it means a lot to me. Yes, it's knocked my confidence, I had come to terms with lung cancer that had spread to a small area of pelvis, but I just can't accept this. Had a terrible night's sleep, can't get warm, think it's the shock. Not heard from Christie Hospital yet, don't know whether to ring them. How are you doing Rob, is leg any better. Thinking of you and sending love. Xxx

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

HI Pam

I see my GP tomorrow about my leg as having covid has to self isolate until today. Waiting for my test results too which I hopefully will get a phone call tomorrow re next stage (whatever that means).

I know things are difficult for you at present but you are such a positive and amazing woman who even when down ask how I am feeling. I have been reading the many replies you received and there are so many positive ones especially from people who have experienced what you are going through and are still here to send you their positive messages of support. Keep on in there Pam, the shock will ease and see what treatment plan they come up with you for you.

Hugs

Rob

Loimie profile image
Loimie in reply to Antrobus2021

Thanks Rob, I've not been positive today, night's and early mornings are the worst aren't they, the darkness frightens me! Yes, I am so overwhelmed at all the replies, lovely, genuine people, you always get back to me and you also lift my spirits. I feel better tonight after getting a phone call from Christie Hospital to say I've got an extra appointment next week to discuss brain scan, immunotherapy still on for 4 Dec, 3rd session and a referral to Salford Royal for radiotherapy, they don't half get a move on! Let me know how you get on after your phone call Rob. Sending love and best wishes 💕 Pam xxx

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

Hi Pam

Hope you are feeling more positive especially after the many helpful responses you received from people in similar circumstances. i think we all try to stay strong for those we love and close to us that we sometimes forget to look out for ourselves.

The phone call I received from the chest consultant re PET scan results confirmed stage 4 cancer in left lung, some cancer in chest (new) and cancer in right hip. he mentioned chemo as treatment and I have an appt. with Consultant Oncolagist on Wednesday. It appears that in Lincolnshire immunotherapy is not an option, although i will ask the question. Unsure what happens at this appointment or when actual treatment will start. It is the waiting and not knowing that makes me feel helpless.

Loimie profile image
Loimie in reply to Antrobus2021

Hi Rob, just checking did you get my reply about 15 mins ago, just looking back on site and it's not there! I'll send it again if you can't find it. Pam xxx

Antrobus2021 profile image
Antrobus2021 in reply to Loimie

Hi Pam

Can't see it.

Rob

Loimie profile image
Loimie in reply to Antrobus2021

Sorry Rob, don't know what happened there! I've been thinking of you Rob, and your phone call. You will be in terrible shock like me when Dr Summer told me. Like you mine is in upper left lung. Spread lymph nodes in chest, pelvis, top vertebrae and brain. Its the uncertainty that's so hard, but it will all move pretty fast now Rob, be strong, I know it's hard, and I don't follow my own advice! I'm dreading Wednesday appointment, keep hearing the words in my head 'can't do anything for you'. I'm always here for you Rob, night or day, and all these wonderful people on this site. And you've had Covid, bet that's taken it out of you, take it easy Rob and I won't say try not to worry, that's easier said than done! Speak soon love Pam xxxx

Hi Loimie,Do not despair I was diagnosed with lung cancer 2015 ,by 2017 I also had a brain tumour diagnosed and another one in 2020 was found .Both have been sucessessfully treated with stereo tactic radiotherapy .It is not a nice thought to think this tumour is randomly walking around your brain .However it can be treated with little effects ,it is do able .Like yourself in 2017 I too thought some very gloomy thoughts and felt dsperatly sad but I had the treatment offered to me and managed to get back on with life .It is not an easy journey .Do what they say to do ,prepare for the worst but hope for the best .That saying used to annoy the hell out of me but in truth they are wise words .Allow saddness now then try and move on and see whats on offer .Take care Diane .

Loimie profile image
Loimie in reply to diane55

Hello Diane, thank you so much for your encouraging word's, I keep googling for some success stories but it's all doom and gloom! A story like yours lifts me. Was the radiotherapy unpleasant Diane? I have my 3rd session of Atezolizumab on 4/12, I'm on steroids at minute for this drop foot caused by brain cancer. At first Dr Summer said it may be due to my osteoporosis that had compressed a vertebrae, resulting in compression of spine, I'd have rather it been that! I hope I can get on with my life like you Diane. Please keep in touch, take care and sending my love.💕

Pam I had mets to brain at the beginning of my diagnosis three years ago - had one session of steriotatic radiosurgery in November 2018 successfully kept them at bay. Scan in Dec 2020 showed re growth - further session of SRS February this year latest scan all good! I was diagnosed stage IV NSCLC with brain and adrenal mets in October 2018 - treated with Pembrolizumab for 2 years currently stable. I know the effect this will have on you but try to stay positive and strong. Wishing you all the best. Liz

Hello Liz, thank you so much for your reply, it really helps me, this is such a good site isn't it, sometimes I find it easier to talk to other than family. You seem to be doing well Liz, but it's scary how it finds a way back. I'd come to terms with it being in my lung and speading to small area of pelvis, but I just can't accept this. So pleased you are currently stable. Not heard from Christie Hospital yet, perhaps they think I'm a lost cause! Sending love and best wishes. 💕

Hi I’m in same boat. Tomorrow morning I go in for gamma knife on 2 spots on brain. Thank you all for posting on here there are some good positive results. All we can hope for.

I too have been in a quandary over what to tell my children. I told my son 42:

But my daughter is in Vancouver and so far away. Just don’t known what to do.

I hope your get good news that’s something can be done to zap these blots

Can you keep positive thoughts for me tomorrow

Best wishes and hope to you all xx

Loimie profile image
Loimie in reply to Betty68

Hello Betty, I’m finding it difficult what to say to my boys, they know I have lung cancer stage 4 that’s spread to small area of pelvis, that was hard to tell them, but now this. It’s very hard for you with your daughter being in Vancouver. I’m not saying anything about the brain cancer until me and my husband know more when I’ve seen my consultant next week, then I’ll decide. If there’s no obvious signs of it affecting my brain I might keep quiet. Looked up some of the symptoms, I know I shouldn’t, it’s scary, I’m terrified I’ll have to be cared for, won’t be able to do for myself. Never thought we’d be here did we, not just yet, I’m a similar age to you 65, have you got grandchildren Betty? My little sweetheart Maddie who’s 9 came after school last night, gosh! So difficult to try and ‘be normal’ they’re so smart, pick up on things. I cry sometimes that I just wanted to see her and her little sister Evelyn who’s 4 grow up a little more. Let me know how you get on Betty, this is a great site, genuine, caring people all going through this vile disease. Sending my love. Pam xxxx

Betty68 profile image
Betty68 in reply to Loimie

HiI didn’t say anything till yesterday to my son. You just want to protect them.

We have a lot in common. My granddaughter it’s 9 next week. And I have 4 year old twin granddaughters in Vancouver.

My oncologist has not ruled out me going to Vancouver. So that’s a positive.

I’ll definitely keep you posted on what’s happening. I’m all over the place today.I only finished radiotherapy yesterday.

Where are you in county. I’m in Yorkshire

Stay hopeful and in touch xxx

Loimie profile image
Loimie in reply to Betty68

Hi Betty, I’m in Denton Manchester, only about half hour from Christie Hospital. Granddaughter’s same age, what a coincidence! Does your older granddaughter suspect anything’s going on, like I said they’re very smart, will you tell them? How was radiotherapy, it is painful or uncomfortable, do you feel ok? Don’t think much about the cancer floating around in lung, in my the brain I do! I’m scared stiff! Not got appointment yet but it’s at Salford Royal, getting panicky now, sleepless nights ahead. That’s good that you may be able to go to Vancouver, it’s something you can’t do over the phone isn’t it Betty. Keep me posted and sending love. Pam xxxx

Betty68 profile image
Betty68 in reply to Loimie

The radiotherapy was fine. 12 sessions. Had to be in a shell over my face and shoulders. Fastened to bed. Sounds worse than it is. Treatment doesn’t last long. Just hope it’s worked and got these pesky lymph nodes. Doubt I’ll sleep tonight. Thoughts of gamma knife tomorrow. I have to be in hospital at 7 am scans and a frame screwed to my head. Worse case 4hrs. Hoping for less. But knowing my luck. But if it’s what’s needed, I’ll keep doing what needs doing.

I’ll be in touch with how it goes.

With hope xxx

Loimie profile image
Loimie in reply to Betty68

Hello Betty, hope your night was ok and you managed to get a little sleep. I’m the same can’t sleep, it’s worse when you have an appointment next day isn’t it. That sounds scary, a frame on your face and fastened to bed. Let me know how you are and I’ll be thinking of you. Sending love. Pam xxxx

Betty68 profile image
Betty68 in reply to Loimie

Survived gamma knife. There were just 2 spots that needed zapping. Worse thing was having crown screwed to head. Just big sense of relief now it’s over. Radiotherapy side effects kicking in so throat sore and a cough. I just need to heal and rebuild now. It’s been a lot. Chemo then 12 rounds radiotherapy then gamma knife. Wish I could sleep. But feeling positive. Love and hope to all xx

Loimie profile image
Loimie in reply to Betty68

Hello Betty, been thinking of you and hoping your ok. Glad you survived the treatment. I’ve just been looking at the procedure, not very pleasant. Take it easy and rest. Sending love and best wishes. Pam xxxx

Oh Pam I’m so sorry to hear your bad news 😢😢😢

Loimie profile image
Loimie in reply to Cosmic54

Thanks Cos, I'm ok today, just hard to deal with another setback. How you doing.

Cosmic54 profile image
Cosmic54 in reply to Loimie

My dear friend Pam I’ve been reading all the comments and I just can’t believe how strong all the people are on this website I would personally like to say to everybody on this site you are all awesome strong minded people and your all giving me the strength to get through this…..Pam don’t give up my lovely lady…I’m sending virtual hugs to all 🥰

Loimie profile image
Loimie in reply to Cosmic54

Hello Cos, yes, it’s a wonderful site, these lovely caring people will make you strong and yes, you WILL get through all that’s thrown your way. We will never ever give up will we Cos! Keep in touch. Sending love and best wishes to you and your family. Pam xxxx

😢😢😢

Loimie profile image
Loimie in reply to Cosmic54

No I'm not crying today I'm 😂

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