Justin1970

My wife battled (and beat) breast cancer in 2016 - surgery, chemo and radiation) and as such, we both have a really good relationship with several oncologists as well as their staff. I plan on speaking with them, yes. I'm sure they'll refer me to an LC specialist

I was diagnosed with Gleason Score 8 prostate cancer late last summer. As part of the PET scans, a nodule was found on the lower lobe of my right lung. As it was very low density, the "pulmonary Board" was divided on whether it was malignant or otherwise but the consensus was to remove the lobe to be sure (and since it appeared very early stage as it was only 1.5 cm). So on January 31st of this year, I underwent a radical prostatectomy (the pathology of which was clear margins and clear lymph nodes) and this past Monday (April 3rd), I underwent the lobectomy. Both times I have been utterly amazed at how I don't feel all that bad. Tired and a little short of breath, sure but that's really it. I never had any need for opioids and have been using only Tylenol
Got the pathology report back on Thursday (yes, I know that is fast!), and I dodged a bullet a 2nd time! It was identified as a non small cell adenocarcinoma but clear margins and clear lymph nodes! Doc says no need for chemo nor radiation and we go into surveillance mode (CAT scans every 6 months for now)
 
Anyway, here I am still kicking!
 

KenHorse,
Welcome here and great news on the success of your surgery. But, lung cancer is so dangerous because it so often recurs after curative treatment. I had 5 recurrences and my first was after a thoracic procedure removing my right lung.
Which of your doctors said no need for chemo or radiation? Was it a medical oncologist or surgeon? Post-surgical chemotherapy attacks cancer cells that might be circulating in your blood or lymphatic systems. These of course might be the seeds of a future recurrence. If the medical oncologist stated you did not need post-surgical chemo, ask the doctor to cite the risk of recurrence given the type and stage of your lung cancer. If the surgeon said you do not need post-surgical chemotherapy, ask the medical oncologist.
Stay the course.
Tom

Congrats on 2 primary cancers caught early, that is awesome! Recurrence risk in LC after "successful" surgery differs depending on tumour stage. Adjuvant chemo and targeted therapy are common even for early stages in certain cases. I would seek second and third opinions before skipping adjuvant treatments after surgery. Someone here was stage 2  and was quoted a not negligible recurrence risk of around 30% if I remember right. Even stage 1a can recur so do your homework and make your decision based on balancing the risks of possible therapy to those of just waiting and watching.

I would insist on talking to a medical oncologist specializing in LC. Surgeons and pulmonologists are not the ones who should decide whether systematic therapy is needed. Some surgeons are so quick to claim they "cured" a cancer. Hopefully you are cured, and chance are that you are if the cancer was vert early stage, but consulting a med onc is imperative in most cases.

Thanks for the comments folks.
I do have a followup consult with my surgeon on Monday and with my pulmonologist on Tuesday. I will certainly bring this up with both of them.
 
 

Yep, Justin, it sounds like second opinion time. Hang in there!

@Justin1970 @Izzy Here is the info for contacting Gustav Roussy in Paris, doesn't hurt to ask them for possible consultation. This is a top rated cancer hospital at the world level, and so close to UK.  
https://www.gustaveroussy.fr/en/international-patients

Hi Justin,
I hope you are doing ok. I think this is definitely the right time to seek a a second opinion. It certainly cannot hurt. I looked up how to go about this under the NHS, and seems you need to get either your GP or current consultant to refer you. Perhaps @catlady91 can advise? Re medical trials, I spoke to the research team ant UCLH and they don’t currently have any relevant trials, as all of them will exclude recent brain metastises, so I wouldn’t waste precious time on this. However, even in the short span since we were diagnosed, there have been so many new treatments approved, so another oncologist might have more ideas on how to proceed.
We are all with you! 

I completely agree with LilyMir. It's good to think outside the box and get a different opinion. My mum had two awful oncologists before her current one who is fantastic. One was inexperienced and slagged off my mum's current oncologist who is a very experienced senior doctor who also works in a very prestigious hospital and the other was so rude, negative and unknowledgeable and also slagged off my mum's current oncologist. It was definitely jealousy as the awful oncologists were both men and I think they felt intimidated by and jealous of my mum's oncologist who is a woman and is very well known and revered in her field and has an extremely good reputation. 
Some doctors really don't care about their patients and for them it's all about status and money. My mum's lovely oncologist actually cares about my mum and when we thought that the cancer returned (luckily it didn't and was inflammation from immunotherapy), she did everything that she could to get my mum onto clinical trials. The other awful oncologist didn't have a clue about any clinical trials when my mum asked him. Luckily my mum didn't need any clinical trials or treatment as she was NED all along and what they thought the "cancerous activity" was inflammation.
My point is that it's important to find a doctor that you gel with and who will do anything to fight your corner. A lot of success stories come as a result of doctors not giving up on their patients. There were people who were told that they were terminal by one doctor and so they went to see a different doctor who said that they would do anything to help them and thanks to that doctor not giving up on them, they surpassed the initial grim prognosis. 
It's also worth having a look abroad as LilyMir says maybe in France or Germany. It can be expensive to fund but crowd funding can really help. We would even be happy to help set up a fundraiser on here if necessary.

I am so sad Justin to hear about the negativity of your oncologists's assessment. Like @catlady91, I looked up your history and saw at least another occasion when you doctor gave a prognosis of 3-6 months... more than a year ago, so I would take such dire prognoses with a pinch of salt. Most importantly, I think a second or even a third opinion is in order. I would not rely on a single doctor/centre assessment when it comes to such crucial decisions about stopping treatment or giving up. Is there no possibility for other opinions in the UK/France? 

Hi 
I'm currently back on dexamethasone steroids I have to say I'm not keen on how they make me feel, I also had tablets for nausea and they did work, I hope everything gets better soon take care Justin 

I had the telephone appointment today and the oncologist said I'm to ill to have anymore chemotherapy and clinical trials, they will keep me on the dexamethasone steroids to try and keep the swelling down but as it stands there's nothing else left to try 

I like "Ace" much better.  
Lou

Thank you all - I only picked 'a no one' as I couldn't think of anything 😅 I have now changed it.
Really happy to hear people are living a really long time. 29 years old is really so young and we're scared she may not get to see the kids grow up. The kids will grow up with their mother having cancer being the norm.
 

We are all someone!
Welcome here.
Lou, Karen, and Lily have conveyed helpful information about your plight, and your wife's. Arguably, yours is the greater burden. You are not treated but instead, stay on the slide line and watch the mayhem unfold, helpless to influence outcomes. Then there are your children, their questions, and your struggle to explain.
I am approaching 20 years of life after being diagnosed with Stage IIIB non-small cell lung cancer (NSCLC), then progressing to Stage IV after supposedly curative treatments. My wife and I occasionally review the bidding of my time in treatment and her feeling of helplessness. We both suffered from uncertainty. Mine was measurable in time from treatment to treatment, from scan to scan. Martha's was a long uninterrupted interval of deep disquiet. She had no yardstick to her doubt. She had no way to relieve my burden. She was in a void of vulnerability with only the dimmest light showing in time hereafter.
Now, almost two decades later, her recollections are still chilling. As I listen to her characterizations of my lung cancer experience, I realize she had only faith to rely on.
Off time we forget that faith is more than a theologic construct. It is an innately human trait centered on belief, confidence, and conviction. She was firmly grounded in the idea that I would survive. Her grounding planted a seed of hope that sprouted into a long life, a full life together. I believe from faith comes hope. She could not see the chemotherapy agents attacking my cancer. She could not touch the ionizing radiation that annihilated my tumors. But she did believe these agents were working. Her faith fostered belief and ignited hope for both of us. And "hope is a good thing" It is "the best of things." And "no good thing ever dies."
Be not concerned about the future. To do so means trying to carve out life in rocks that are impenetrable. Live in the day for your family. Look for little instances of joy in your daily life and when you find one, celebrate.
Stay the course.
Tom
 
 

Hi, I am a mom of a 6 year old so I get your family's anguish (also EGFR exon-19 and on Tagrisso). Do not hesitate to reach out to this forum with any question or just to vent. So sorry you received such diagnosis during a most joyous and difficult part of life, how unfair life can be but your wife is here and kicking so celebrate that!  Welcome to this awesome support group!

I second what Lou said about your screen name. This group is one of the gems in my lung cancer survivors' "I can do this" necklace. You-- and your wife, if she chooses-- are welcome to be here. That makes you a someone, indeed. 
I, too, am Stage IV. So many of us are. And so many of us with Stage IV live for a long time, with meaningful lives. One of my favorite people, in my local lung cancer group, has been Stage IV for 16 years. It's said that hope is a muscle, that we have to work it to keep it. He certainly does. Making plans for a few hours ahead, or the next day, or next month, is a way to flex the hope muscle. 
The hardest thing in the world to hear is what I am about to tell you: I, and others, live as fully and richly as possible, one hour, one day at a time. I plan, but without expectation about whether the plans will come to fruition in the way I've hoped. This stupid cancer has taught me that NOW is all I have, and I get to choose what makes that meaningful. 
I have a link in my footer about how to be your own best advocate; I encourage you to take a look, and to learn as much as you can about the disease itself. 
Welcome here; hope to see you around.
Karen
 

HI,
So sorry to hear about your wife's condition, but glad you found us.  I'm happy to hear that her condition is showing improvement and I can attest that we have many survivors here who were diagnosed at Stages III and IV and are still living their lives.  While your here feel free to ask any questions you have and I'm also sure you'll hear from others who were in similar situations very soon.
In the meantime, there are three items that may be of assistance to you.
A blog was written by one of our major members who was diagnosed with Stage III, then Stage IV lung cancer close to two decades ago.  It is titles "10 Steps to Surviving Lung Cancer"; from a Cancer Survivor" and you and your wife would benefit greatly from reading it. Lung Cancer 101:  This is a plethora of information here that can help educate and empower you and your wife through this difficult journey.  It can be found here. Caregiver's Resource Center:  As a caregiver you have unique demands and needs.  We have a forum where caregivers share their experiences and provide support for one another.  It is on this page. I have no idea of why your screen name is "a no one" but know that you and your wife are important to us, and you'll find great support here.
Lou

Hi all,
My 29 year old wife was diagnosed with stage 4 lung cancer. My wife was pregnant throughout 2022 and had really bad symptoms such as a chronic migraine, bad pelvic pain, and blurred vision which were all put down to pregnancy symptoms. A couple days after giving birth her vision got really bad - we ended up going to an eye hospital who liaised with our local hospital to get scans expedited and then given the diagnosis 3 weeks after the birth. 
The cancer spread to her brain (with significant growth), bones, eyes, and liver. She had 10 rounds of palliative radiotherapy to the brain and 1 round to the back/spine. As her type is EGFR exon 19 del, she has been taking tagrisso/osimertinib. 
It is now been 5 months since on tagrisso and there has been improvement all around. She was on morphine at the start but no more painkillers and there is a bit more normality.
We have a super active 2 year old in addition to our new born (who is coming up to 6 months) and are of course terrified for the future. 

I'm really sorry to hear this Justin. Doctors are sometimes quick to give up. I read from your earlier posts that you have a KRAS mutation. I looked up more about it and there's this drug available for it. I'm not sure if it's available on the NHS but it's worth looking into.
https://www.onclive.com/view/adagrasib-provides-new-option-for-patients-with-kras-g12c-mutant-nsclc

My sentiments exactly Lou and I still believe it can,  I'm not about to give up on you Jus not ever ! It is not the end of the line and this does not mean your going anywhere any time soon, it just means they can't do anything else but if you get to feeling  stronger things could change and you might then be able to have more chemo, never say never and don't let this latest hurdle make you give up, I'm not ever going to xxxxx love you sweetheart xxxx Mum xxxxxx 

Justin,
This is terrible news.  I don't really know what to say.  Did they at least indicate that the steroids might bring the swelling down for you?  Also, are they giving you anything you need to try and stay comfortable?  You're in my prayers, and I'd love to see this turn around.
Lou

I had the telephone appointment today and the oncologist said I'm to ill to have anymore chemotherapy and clinical trials, they will keep me on the dexamethasone steroids to try and keep the swelling down but as it stands there's nothing else left to try 

I had the telephone appointment today and the oncologist said I'm to ill to have anymore chemotherapy and clinical trials, they will keep me on the dexamethasone steroids to try and keep the swelling down but as it stands there's nothing else left to try