Hi everyone, It's my first time here and I'm in the midst of emotional turmoil as my boyfriend and I face this monster called Cancer...He and I have been so healthy, we eat right, we hike, bike, walk, run...All the things to give us the longevity of life... Yet, now after three months of coughing and back pain, my boyfriend is diagnosed with Stage 4 lung cancer...we are devastated... He is on his 6th treatment of radiation and feeling awful... He had major back surgery with rods, screws and a cage placed in his back... He is in constant pain... I stay by his side everyday and night... We need hope...and advice...he needs to know that there are others out there in similar situations... how do we get through each day? What strategies and supports are out there for us? Please, if you can share some advice or inspiration, we would greatly appreciate it.... Thank you...
Looking for strength and advice - Lung Cancer Support
Looking for strength and advice
Welcome to the Lung Cancer Support board. So very sorry for the need that drives you here. I was diagnosed with stage 4 lung adenocarcinoma in October 2010.
The radiation should eventually relieve the pain. How long ago was the surgery? That’s a very serious trauma to the back and it may be months before the pain of that will be gone. Have they talked about physical rehabilitation yet?
What type of meds or chemotherapy drugs are they treating the cancer with?
Oops, sorry. That’s more questions not answers but with that information we may be better able to help you. Bless you for staying at his side. I found it much tougher to be my mom’s caregiver than to deal with my own cancer.
Sorry to read of your experience and diagnosis - I was diagnosed in Jan 2011 and had surgery to remove half my lung in Dec 2010 and I was fit, regularly swimming. Sadly cancer doesn't discriminate - I've met many lung cancer patients who like me have never smoked, were fit - if you have lungs, you can develop it - the shock is that for most us we're unaware until faced with it that it isn't only those with a smoking history who develop it due to years of 'conditioning'. In the last 5-6 years I've been very involved in lung cancer research and met several patients who were diagnosed with stage iv yet are 'stable' on treatments - such a lot has changed in the last few years and different combinations of treatments including immunotherapy have changed the outlook for many as well as targeted therapies for some patients with specific tumour characteristics. His back surgery is another blow..... to recover from - and it will take time. What was the reason for that? Did he already have a back problem? was it spinal surgery? Some of the rehab exercises suggested to keep the lungs developed/working will not be possible but I'm guessing he has access to physiotherapy advice/support? Keeping fit/active is imperative to preserve his lung function - but not overdoing it.
Do not give up - there are a lot of resources/information available on Roy Castle lung cancer foundation website - find out about the treatment he is to be offered and whether there is any counselling/nurse led support too for you both. It is a roller coaster of a situation emotionally and with various tests, treatments etc and not easy but many come through the other side --I remember reading information at the time that was very gloom ridden but conferences I've attended showing international treatment improvements and changed outcomes tell a whole different story.
I spoke at a European event a couple of years ago where a Dutch women regular cyclist had gone to her doctor as she was getting breathless on inclines/hills previously she found easy and like your partner, diagnosed at stage iv lung cancer- she's been on various treatments and is still working and cycling. There are different types of lung cancer and completely different treatments dependent on the tumour characteristics, patients' fitness/genome, any other conditions etc so hard for people to suggest specifics. Generally my coping mechanism was to take it a day at a time but also do all the things I'd been meaning to do - catch up with people, read, visit places - but I recognise that with his surgery and a pandemic, that may not be practical. A few years ago I started to get involved with lung research and advocacy and find that helps me - helping others, distracting ourselves with others' issues can help us stop focussing on the detail, and the 'what if' and concentrate on the 'what is'. One thing about the internet - a lot of the information about lung cancer statistics is very out of date so try and stick to trusted websites like the national cancer charities - I'm on Roy Castle patient literature review panel and know their information is regularly updated as treatments or national guidance change. I found a couple of books really helpful - so hope you don't mind me suggesting them - one is called 'cancer is a word not a sentence' by Dr Rob Buckman and the other 'Anticancer - a new way of life' by Dr Servan Schreiber. hope you get some more answers soon. good luck.
Thank you so much for sharing your experience and advice! You are so right about the back surgery..It has been quite a blow... Trying to recover from that has taken a lot out of him...The pain, the meds, the lack of appetite, constipation, and loss of mobility, have done a number on him... The surgery on his spine was due to the cancer...bone mets...the cancer was disintegrating the bone and was on the verge of causing paralysis.... Back pain and a chronic cough is what brought him to the hospital... between the back surgery and his cancer diagnosis, it's really challenging for him to stay hopeful...He is so used to doing things for himself and others. That was his first biggest hurdle, accepting help from others... anyways, your response has been helpful and I've already been looking at the Roy Castle site as well as Amazon for the books you have mentioned...if you think of other resources or ideas to share, please pass them along... thank you for your help and inspiration! Hugs, Cyclingpartner
Welcome to the site, so sorry for what you're going through.
You've gotten some good responses, but one thing I would suggest is to ask for a referral to a palliative doctor. Their specialty is managing pain and traumatic health conditions. They are NOT only for end of life care, a mistake many people make. There are ways to manage your boyfriend's pain, he (and you) need to get that under control so that you can think straight! Pain is so draining and exhausting.
I would start by asking the back surgeon for a referral. If they're not helpful, then ask the oncologist.
Here's a good link about it:
getpalliativecare.org/whati...
You're both in my prayers!
Thank you for the link and info on palliative care! It's just what we need right now!! We have an appointment with the oncologist on Monday and will ask for a referral....We have been so overwhelmed with the meds, the side effects, the pain and discomfort, the weightloss, and fatigue.... Palliative care would be a blessing! Thank you so much!
Hugs, Cyclingpartner
YES to Palliative care to help manage pain and other symptoms. The post-surgical period is awful. There is no need to suffer—the right doctors can help get control of most of the issues you described, and time will help also. But there is hope indeed. I was doing triathlons prior to my Stage IV NSCLC diagnosis in 2015 at age 44. I am stable five years later. I have had many challenges (brain surgery, brain radiation, and more), but I only had progression in my lung this past fall which caused a switch in treatments. I am stable again, now taking immunotherapy Opdivo as maintenance every month. Most days people outside my home wouldn’t know I live with cancer and all that goes with it. Because of vestibular issues (likely related to the craniotomy near my cerebellum, which is the balance center), I am not cycling again at this point. Walks, weights, Volleyball, and yoga are my primary exercises now.
Best wishes.
I wanted to DIE until I read this. I have stage 4 lung cancer and suffered a brain surgery due to spread tumor to the brain. Diagnosed 6/6/2017 and right lung removed top and middle lung, well a tumor came back in the middle of my chest and I did chemo awhile back and it shrunk now with a receipt scan it grew and I start chemo once a month 3 months to shrink again and I was on keytruda 3 rounds but it made me very tired so they took me off. I guess this tumor I’ll have to always do chemo to stay alive and the scan showed a 1 cm node in left lung I’m sure the chemo will get rid of it, I’ll start chem the 1 st and try another immutherapy, see what my dr says but I read what you wrote and it gave me hope. Are you living with a tumor you keep shrunk???
Yes. I have had tiny spots of inactive cancer In my lung/adrenal gland Since about 6 months after diagnosis/first chemo. The chemo kept it from growing (except brain, which chemo cannot get you). I have had small lesions in my brain (in addition the walnuts-size one removed by craniotomy) that are treated with single dose radiation ( Stereotactic radiosurgery. (Srs). Those have not grown. The immunotherapy I am on has not been an easy. I had a severe bout of fatigue that lasted 6weeks before we could realize and test bloodwork—my pituitary gland has stopped producing cortisol. I’m working with endocrinologist now to try to get that figured out so that I hopefully won’t need to stay on low dose of prednisone.
Have hope. Please. It’s a game of Whack-a-mole but you can do it!
Same thing happened to me. I had surgery to remove tumor in brain but I have a tumor in chest they can’t radiate to close to heart I’m on 10mg prednisone. Keytruda kept me bed ridden. Thanks for sharing
I replied incorrectly. Please read my reply and ty
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