10 months down the line

Sue

I'm so sad to read that you and your husband has had such awful news. I was in your shoes a little over a year ago and know how shocking it is to learn that your loved one has inoperable lung cancer. Were the doctors telling you it was cancer 10 months ago but not offering any treatment? (It seems unlikely that if there was active cancer there that they missed it as my understanding g is that the PET/CT scan is done to show all active/growing areas of cancer). Even with inoperable lung cancer there are options with new therapies coming along. If he's been tested and proved positive for mutations (which the biopsies would have shown) then new avenues of treatment are opened.

As for why he didn't get treatment 10 months ago - this is a question you need answering. Ask. And if you aren't satisfied with the answer ask again and take it further.

Netty

thanks for your reply netty the scans were only showing a small amount of brightness around the tumour and after all test kept being told still inconclusive,then the same thing over and over again after each test,untill the last biopsy that was when we were told stage 4 lung,i am hoping and praying that the chemo will do its job, the macmillan nurse as said it should buy us extra time.my husband is dealing better with it than i am but i dont think he fully appreciates how serious it is apart from constant pain and feeling tired you wouldent think anything was wrong with him, will just have to stay possitive ,its like being an actress i am just putting a brave face on for him,but crying inside x

I do hope the chemo buys more time for you both. Appreciate every single moment. I used to wish I could bottle it up for a day when I was left alone. I never allowed my husband to see how utterly terrified I was. Please feel free to pm me if you want to chat

Netty

Hi Sue,

I was diagnosed with stage 4 lung cancer in October. They tested for mutations and I was egfr positive which means I can be treated with targetted therapy taking a tablet each day and no other treatment. Even though my condition is terminal, this will control my condition for as long as it works and has fewer side effects than chemo. It is worth asking if he has been tested, as there are other mutations as well. I know how you feel like the end of the world has come but it does get easier even though it is never off your mind. I am off to Corfu in two weeks with my daughter and living each day as it comes. I fully intend to be around for some time to come. Love and hugs, say strong.

Pollyalison x

Hi Sue

so sorry to hear about your husbands diagnosis after all that time. We are going through same but my husband John had the shoulder pain for 3 months then Doctor sent him for xray then with in weeks Biopsy and Chemo November to April . His treatment has been excellent i am so sad to think you had both to go through 10 months before diagnosed .It hits you like a sledgehammer you dont know what to do or think . John copes better than i do he is so positive and keeps myself and daughters smiling .There is times i want to scream and i say to him why dont you shout get annoyed or something .His reply what is the point of that and he smiles and i feel better .Hope your husband gets treatment soon and you have plenty of time to make memories .Life is so precious .

Jeaniexxx

Make sure to ask them to do the genetic testing before deciding a treatment unless he has an aggressive cancer. If it's slow growing the testing may prove he can take a pill versus chemo. I felt that way before too beings my doc gave me a z pack every time I had an upper respiratory infection for a few years. It took me to go to an urgent care when I couldn't get an appointment for a bad cough and earache. They gave me a chest xray and z pack said I had round pneumonia BUT saw something and recommended a CT scan. Here I didn't have round pneumonia but the z pack did help the cough and earache. The round was a tumor not round pneumonia. I found out I too am Stage IV Adenocarcinoma with the EGFR exon deletion 19 gene. Started taking the Tarceva pill 150mg's on 3/11/16, the scan on 5/25/16 showed the 4.6cm tumor in right upper lung was half the size, 1.73cm tumor in left lung .09 in size and no sign of the left clavicle and chest lymph nodes so they shrunk too. SO there is HOPE!

thank you for your post may you continue getting good results,

i am trying to stay poitive and thinking long term god bless.

I went to the Lungevity Foundation Hope Summit in May 2016 and met so many fellow survivors just like me. Please don't give up hope I never did, just because your husband is stage IV doesn't not mean he is terminal stage IV. Wish they would change that! Lung cancer is someday going to be treated as a chronic disease just like those that take beta blockers for the heart and insulin for diabetes. There is a man I met at the Hope Summit that is stage IV was given 6 months that was 12 years ago. He has been on Tarceva for 9 years and has been NED (No Evidence of Disease) for 6 years! Lungevity also has Facebook groups you can join. Next year think about going to their Hope Summit in DC they give travel grants to first time attendees. That's how I went I met Jim Morrision and other long time stage IV survivors. Stay positive!

Jim Morrison is the person that is a 12 year lung cancer survivor....

I do feel for you Sue. I was in a similar situation with my husband just over four years ago. We were told he had inoperable lung cancer and we felt as if our world had fallen apart. BUT four years on we are still here and able to enjoy life. Steve has had three different lots of chemo over the years and a couple of lots of radiotherapy. He had a second biopsy last July and it came back showing he is ALK positive and since September last year he has been taking crizotinib, a targeted drug, and is doing well on it. Stay positive and try to keep strong for each other. New treatments are coming along all the time now. Take care of yourself too Sue. I wish you and your husband all the best. X

thanks so much feeling a little more opptamistic after reading so many positive posts dont feel so alone, long may your husbands health go from strength to strength x

Dear Sue

So sorry to hear about your Husbands cancer and it is totally understandable how you must feel angry and cheated. It must have been mentally exhausting for both you and your husband for the duration of the tests and waiting on answers. You mentioned in your blog how you are putting on a brave face for your husband, that takes up so much energy, as anyone who has been in your situation knows. You are not alone as you can see from the blogs below.

All the blogs below are of great support and encouraging from first hand experience. Hopefully at the Oncologist's appointment tomorrow you will have more clearer information and a treatment plan proposed for your husband. One of the priorities is for your husband to have pain relief.

You said your husband is in constant pain, it would be helpful for the Oncologist tomorrow to know exactly where the pain is, how intense it is, ache, sharp pain, does it travel anywhere or difficult to breathe properly etc, Perhaps ask your husband to describe his pain as best as possible and take this with you to the appointment.

Perhaps write down all your questions to take with you tomorrow, as you know it can be difficult to retain all the information given as it is such an emotional time. Does your husband have a lung cancer specialist nurse? if not ask at the appointment tomorrow. They can provide lots of valuable information and support. I see you have a Macmillan nurse which is great. Surround yourself with as much support as you can.

Please feel free to call us on our free helpline 0333 323 7200 (option 2) we are here to support you.

We are happy to post out any information you may wish from the website roycastle.org/ayqpack

We will be thinking of you Sue, all the best

Roy Castle Support Team

just a quick update,went to see the oncolagist on tuesday they have told us that the lung cancer is also in the lining of his lung,starting chemo on tuesday,would like to know if any one has had good results with pemetrexed & carboplatin,and if they had any side effects,i know every one is different ,husbands meds changed again and seem to be working better on his pain so thats a blessing,he will be having the chemo over 12 weeks,we are remaining positive,and taking things day by day, my husband wants to visit our son in austria at the end of his chemo,just hoping he will be allowed to fly ,thanks to this group for all the support i talk to my family and they are great but no one really knows how it is unless they are going through it,also received some information booklets from this site which we have found most helpfull, they only thing for me now is that my husband doesent want our son to know he is 41 and lives in austria, i dont want to push my husband in to telling him and maybe he will in his own good time,i know its his choice but think he should know as any one else been in this position ,love to all

Dear Sue

Thank you for the update. It is great that the change in medication is helping your husbands pain. Our website has information on the common side effects of Chemotherapy for lung cancer - roycastle.org . Most side effects are manageable and ease with time. Your husband has a wonderful support in you, make sure you look after yourself also.

We wish you all the very best and good to have a goal to look forward to in visiting your Son in Austria. There is a section on travel insurance on our website roycastle.org (comes under -living with cancer factsheets, and the last section of this is the travel information)

Our free helpline number is 0333 323 7200 (option 2)

The Roy Castle Support team