Bum and buggeration :(

[Tiddlywinks63]

I’m really not sure why I’m posting on here but I think I am probably going to be told I have lung cancer.
I have had heart failure for nearly 7 years and over the last couple of years I have had episodes of breathlessness but the latest one hasn’t cleared up. I have seem my gp, and had telephone cardiologist appointments where I have said about the shortness of breath but every time been told it’s because of the heart failure.
Two weeks ago I was sent to Ambulatory care, had bloods and a chest X-ray and there clearly was something on the X-ray.
The consultant said it could be odd blood vessels but put me on the 2 week pathway for a CT scan that I had earlier today.
I know I should not google but looking up images of what I clearly saw on my X-ray it’s pretty much looks like lung cancer.
My shortness of breath is getting worse but I’ve been told I won’t get a result from today’s CT scan for 4-6 weeks 🫣
A handhold would be wonderful x

OP I don’t have any experience of this but what I will say is I think if it’s something sinister you’ll hear before 6 weeks. I believe lung cancer is very treatable if caught early, and any surgery is less drastic than it used to be.
Try not to google.
Very best wishes

I cannot imagine how worried you are. Not the same thing but my husband had red patches on his bladder and worrying symptoms. I Googled and was so, so convinced it was bladder cancer. I cried every time I looked at him. It wasn't. I do hope you have good results x

I would consider water in your lungs (due to weak heart) before cancer

I know exactly how worried you feel. A few years ago, I had similar symptoms as you and my x rays showed a mass.

I was sent for a PET scan (radioactive sugars are injected and stick to anything dodgy making it glow). My scan lit up and I was told it was cancer.

There was no 2 week pathway then. So 3 months later, I was on the operating table, unconscious and they did a biopsy (couldn’t do it before as it was right at the top of my right lobe)

I was woken up and told that it wasn’t cancer but a very rare reaction between my rheumatoid arthritis biologic medicine and a non tuberculin mycobacterium that mimics cancer symptoms. They removed the mass and the lobe.

I don’t want to give you false hope but just wanted to say that there are a few other reasons. If it is cancer then early treatment is key and I wish you the very best. The two weeks pathway is much better than treatment was. X

Unfortunately it looked very different to when my lungs were waterlogged on X-ray, no congestion evident.

Ok, an update….
I had the CT, multiple nodules both lungs, highly suspicious larger ones on right lower lobe and upper left lobe with ‘ground glass and solid components’.
Not suitable for surgery so not curable, aiming for suppression.
I’m waiting for a PETscan (2-3 weeks) followed by biopsies (further 2-3 weeks after that) then referral to oncology for immunotherapy/chemo/SABR?
So, presumably already Stage 4?
It’s going to be a long 2 months until I get a plan of action, isn’t it?
Feeling very weary (I actually fell asleep this afternoon, I have never done that before) and resigned.
Two years of telling my gp I’m short of breath and being fobbed off.
🤷🏼‍♀️

I’m really sorry to hear this. I know nothing I can say will help you, but sending you a big hug x

I am sorry, Op. Two months sounds like a ridiculous time to wait.

Sorry, edited because I saw your update 💐

That's terrible. So sorry you have had this news.

Sorry to hear update not good news. It might not make much difference but I'd go back and complain to my GP. 2 years of telling them you had breathing difficulties and they should have investigated sooner. I hope your future treatment is good and you have the best outcome possible. Treat yourself to anything you want.

Buggeration sounds about right. I'm really sorry that this is the result of your CT. And so bloody unlucky to have heart failure and lung cancer. One very important question, is did this start in your lungs, are spread from somewhere else (breast cancer, for instance), which might offer different treatment options. Really hope you get answers, and a plan, very soon.

Sorry, OP. Hope you get your treatment plan soon.

Oh @Tiddlywinks63 I’m so sorry for your diagnoses, both of them. Heart failure on its own can be so hard to accept & to manage, and with this on top it is indeed totally swear-worthy.
Life is so unfair. Huge hugs 🤗

Oh god that's so awful, I'm so sorry or you.

Sending love to you op, utterly shitty unfair times, not surprised you are exhausted. I don’t know anything about your situation but from having cancer myself and speaking to other patients I know that stage 4 can be managed for a long time in some situations. I just hope you get answers quickly and scooped up and held with care and love.

Thank you for all your lovely comments, it’s really comforting.
I have my summary letter from the hospital following my LIFT clinic.
PETCT scan Wednesday.
Trying not to google and failing miserably…..
Does anyone here have any idea of what treatment is given if widespread? I know I need to wait but it’s taking so long!

So sorry to hear this, I know you must be very scared. I do hear they are having a lot of success with immunotherapy, in fact I know a lady who was diagnosed 5 years ago with stage 4 lung cancer and treated with immunotherapy, and is still going strong. I really hope it works for you.

Can anyone tell me what the ‘2 week pathway’ actually refers to?
I’m nearly 8 weeks since initial referral which took 3 weeks for the first appointment, a CT scan.
After that I was told 3-4 weeks for PET CT, then 3-4 weeks for biopsy, same again for first oncology appointment so effectively it going to be at least 20 weeks before I seen an oncology doctor. In the meantime my breathlessness is getting steadily worse. I’m short of breath pretty much all the time.
My gp just says ‘You’re in the system’
😢

They dropped “two week wait” it’s now called “faster diagnosis” apparently. The target is 28 days from referral to diagnosis, 62 days until treatment I believe. Where exactly are you up to now in tests /appointments?

I was you in December just before I had my PET scan and biopsy right down to the 'ground glass and numerous nodules' including some very large ones. I don't want to give you false hope but mine wasn't cancer. I've been diagnosed with Pulmonary Sarcoidosis. It's a rare disease and still a pretty shit diagnosis but, ultimately, not cancer. There isn't a specific diagnostic test so they had to send me down the cancer pathway in order to eliminate everything it isn't before concluding what it is. It wasn't until I had the appointment with the oncologist that she confirmed it wasn't cancer. I know what an incredibly stressful time you're having so all I can do is send hugs and best wishes to you.

Lung cancer is typically slow growing and it’s a complex diagnostic pathway to treatment. At the moment you have a radiological diagnosis from the CT. PET will suggest nodes to biopsy and that will confirm its cancer and also be sent for genetic testing. You need that to know what chemo or immunotherapy is best. SABR (which is radiotherapy) can be very effective (and curative if there’s no spread).Tbh surgery is very debilitating - sounds obvious but it reduces your lung volume very significantly. With your history of heart failure even an early diagnosis might not have made surgery your best option. Your oncologist may suggest a different treatment plan because of the heart failure too. There can be delays starting chemo at the moment I’m afraid - whole system is fucked tbh.
However you can help yourself by being as fit as you can manage when you start treatment. You need to keep weight on, eat as much rich food as you can. Add cream to food. Butter in plenty. Try and keep active, I know this is very hard with the breathlessness but even just pottering outside, getting sun on your face will help.
I don’t think it’s going to be possible to distinguish the effects of the cancer from the heart failure in terms of what has caused breathlessness when and tbh I would try not to dwell on that, it won’t get you anywhere positive and you need your energy for other things.

So far I’ve had CXR and bloods, Lung Cancer clinic (LIFT) with spirometers tests, PET CT and it’s nearly 8 weeks on (53 days today) from my initial visit to Ambulatory Care where I had the CXR and bloods.
The PET CT was on Wednesday this week, the technician said 2-3 weeks for results, I’ve agreed to a phone call, then another week to arrange biopsies.

Ok sounds like you are nearly there in terms of getting a plan for treatment. It’s frustrating that it takes a while though because you just need a plan! As pp said it’s all about getting the right treatment for you. I hope you have good support, you must be so stressed.

So sorry about your news. This seems incredibly slow when there is possible cancer. Unbearable for you. Could this possibly mean they are not suspecting cancer but ruling it out so they can diagnose something else? I hope so and sending lots of luck and strength your way.