Newly diagnosed stage 4

Hi Dotsmoo

First, welcome

I am so sorry that you find yourself in this position, it’s devastating getting the diagnosis of lung cancer. I understand about the waiting game. It is a game which unfortunately we all have to take participation in, it takes time for your MDT to gather the information they require to understand your specific cancer In order to formulate a plan of treatment. 

I know, from personal experience, that you will be stressed out and worried about the future, but please remember, there are many new treatment options available now, than the past and you must remain, as you describe yourself, positive. When you see your oncologist on the 2nd June, you will know what the plan of treatment will be. Once you get this, you will feel more in control and determined - promise

You ask if it is normal for symptoms, once diagnosed, to crop up, but you don’t describe the symptoms. I like yourself was diagnosed August 2019 with stage 4 lung cancer. On reflection, once diagnosed, I did think every pain in my body was a symptom of the cancer getting worse, but for me, I think it was a psychological response, due to magnitude of stress I was experiencing having this horrible disease. When you see your oncologist, you will be able to discuss any concerns you have with them, or if already allocated, discuss with your lung nurse.

Getting this horrible news during Covid, is not nice and not being able to be with friends and family makes it more devastating, but we will come out of this and we will again resume something close to normality.

I know what you are talking about regarding your husband, mine is the same. Our loved ones are greatly affected by this disease, just as much as we are, they want to protect us, but feel helpless. As mentioned above, he will feel a lot better when you have your treatment plan in place. 

It is difficult telling friends and loved ones our diagnosis, but telling my son was the hardest. All I can advise, is just be honest with him, advising of the new treatments available, instilling the positivity you have, into him. I told my son to ask me any questions and I also invited him to consultations with my oncologist. It will be difficult, but you come across as a strong women and I know you will find the strength to tell him. Your son, like mine will be upset, but he will respect your honesty and understand love and respect why you waited until after his exams to tell him. 

I hope your appointment goes well and all your questions will be answered regarding treatments. There are many lovely people on this site and any questions you have, they will offer advice and support, based upon their own journeys, so please stay in touch. 

I send you a big hug

” Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning” (Albert Einstein) 

Hi Marie

thank you so much for your thoughtful response. It’s sad to know that other people have this illness but also extremely reassuring to know that we’re not alone. 
Like you, any twinges etc I’m worried may be something to do with the cancer. I have developed back pain that the gp believes is due to the bone mets. Good old pain killers hopefully will get on top of that. 
I hope you’re treatment is going well and you haven’t experienced too many adverse effects. Are you still working?

Take care and hopefully keep each other posted

xx

Hi Dotsmoo

You are right, it is reassuring that we are not alone and this site has really helped me in my journey. It is a release to read, ask questions, explain our anxieties to others in the same situation. We can and need to talk to friends and family, but only someone in our situation can truly understand what we’re feeling or worrying about. 

I am sorry to hear you are having pain in your back, make sure you have the correct medication. I read your profile and my understanding is you are a pharmacist, so I’m sure you know what your talking about regarding medication.

Thanks for asking about my treatment. I started immunotherapy in January 2020 and my last scan was described as stable, which I was very happy about. Yes cancer still there, but no growth, can’t ask for more, other than wanting it to disappear, but that’s being unrealistic ( can wish though- lol) 

I also work in a hospital and just before the dreaded Covid19, continued working.  Since taking immunotherapy treatment, I get tired late afternoon, so following a talk with my manager, I worked just early shifts, finishing at 16: 00.

It was good getting back to work, I had been off following having my upper left lobe surgically removed by VATs July 2019 and wanted, well needed to go back, when dealing with any illness, distraction of work,  helps tremendously. However, off again, in the shielding group. Just waiting for normality to return and get back. Which I know will happen

Stay strong and keep in touch and let me know how you get on- we are here for you

” Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning” ( Albert Einstein) 

Hello, I was diagnosed with stage 4 lung cancer in August. Never smoked so had felt that out of all the cancers lung was not one I would have to deal with! As we all are I was devastated and at first didn’t think I would see Christmas.  I have 4 children and had to tell them.  As Marie said be honest and positive.  It will hit him hard, my son who was just about to start his 2nd year at Bristol uni would unbeknown to us would go into the middle of the common and scream.  My 17 year old (now 18) was strong but then has meltdowns every so often.  My eldest (22) just seems to remain v positive and my youngest (16) is very protective over me.  My husband remains positive but also has moments.  So as you can see everyone reacts differently.  I am currently on immunotherapy and my last 2 scans have been stable.  I am due one in June but not sure if it will be postponed.  I’m feeling well.  I promise once you have a plan things will feel better.  Take care and my thoughts are with you as you tell your son

Hi all, it's great to know that there are wonderful people out there that don't know you but are so full of support and understanding for what you are going through.

We told our son on Tuesday after he'd submitted his exams to uni. He had no inkling at all but completely understood why we had delayed telling him. I am so proud of how he is coping. Of course he was very upset and there were tears but after the initial shock he's decided its pointless to worry too much until we have more information from the appointment next week. Though he does ask how I am every day and has decided not to go out on his 'exercise' walks with his friend in order to keep me safe . 

I'm glad to hear that you and Marie are both 'stable' with treatment. I am a pharmacist so I'm aware of the treatment options available now so hopefully we will all be around for a while longer yet!! We have to stay positive.

Luckily I have a work laptop so I am still working from home. Only a select few work colleagues are even aware that I am 'ill' as I was already shielding due to being immunocompromised from the meds I take for Crohn's disease. That will all change next week when they get my intent to treat after the appointment on Tuesday so I have asked my boss to let everyone know on Monday - my way of taking a little bit of control back! 

Take care and keep in touch

Jx

Just an update after my appointment on Tuesday.

I am started targeted therapy for an EGFR mutation this weekend. Collected my meds today.

Have a bone scan on Monday to see where else in my bones this has got to. Consultant suspects skull as been having terrible headaches. Depending on results will then have a blast of radiotherapy to my spine and anywhere else that may benefit.

Think the diagnosis has sunk in now but still staying positive . Marvellous things can happen nowadays and targeted treatment not as limiting as traditional chemo.

Hope everyone keeping safe 

Jane x