Awaiting PET scan results

[Bunny12345678]

I had a PET scan about three weeks ago as I have three nodules on my right lung, they were all 6mm but one has grown by 1mm, therefore I had to have a PET scan. My Consultant wants to see me next Thursday. I'm absolutely terrified of what he's going to say he's found and the diagnosis, it's taking over my daily thoughts, I'm a nurse too and I'm usually the one reassuring my patients, I keep over-thinking everything, needless to say I'm frightened to high heavens. Has anyone been in my position or has any advice please, it'll be greatly appreciated?

[Oshgosh]

I’m so sorry you’re in this position.

It’s really hard when you have some knowledge.

It’s understandable that you’re over thinking everything.its going to be a hard week for you.

All I can do for you is tell you that I am thinking of you.

Keep in touch.

[Bunny12345678 in reply to Oshgosh]

Thankyou very much

[judg69]

Hi Bunny, please focus on the fact that if there is something suspicious, it was found now instead of in a year or two. The PET scan may be nothing , or it potentially could be indicative of a concern ( if an area lights up in color then that is often/usually a marker for malignancy, and a biopsy will probably then be scheduled to confirm the diagnosis ). Trust me, I’ve been there and done that, and as difficult as it may seem , the best thing you can do is be thankful you found out about this now, instead of later, and take things one day at a time. All Best Wishes for You!, judg69

[Bunny12345678 in reply to judg69]

Thankyou very much for your kind words, its helpful to hear your experience...its so different being on the patient side, I keep losing perspective

[2greys]

Yes I have just had my fourth PET scan in 4 years, this afternoon. The first one was after my very first CT scan that showed a nodule, result it had calcified and not active at all. The next two years was full of CT scans and I ended up with thirteen nodules. Two grew large, at 28 mm each, in a matter of months and a PET scan was ordered, at that time one of them was benign but the other was very active and a diagnosis of Cancer was made.

To cut a long story short it took 3 months of tests and an appointment with the surgeon to be told, because of the poor state of my lungs and heart disease, that I had a high mortality prognosis with surgery, which was totally unacceptable to me. So I elected Radiotherapy which has been successful so far and in remission as it continues to shrink. The other large nodule lay dormant for 2 1/2 years until recently when it had started to grow again. I had another PET scan in July but it was unclear, the radioactive glucose injection had deteriorated, so another one was ordered.

That had to be delayed by 3 weeks because of a Covid-19 scare. So now I am like you, once more, waiting for the results.

What can I say? What you have to remember is not to panic and worry, it will not help, it will not change anything, other than to make you ill. Being ill is the last thing you want, it will be detrimental to any treatment and recovery. Leave the worrying to the consultants it is their job to do it, not yours.

At 7 mm it is eminently treatable because it has been caught at such an early stage. There will be 4 options to treat it, surgery, radiotherapy, chemotherapy and immunotherapy. There are a few on this forum who have or have had cancer, each has their own story. Please don't worry, the best course to take is to try to put it to one side and carry on with your normal life, keep your mind busy, which is how I have managed in the past and am doing so again this time. I also have very severe Emphysema and other comorbidities to contend with as well but holding up. As a nurse, I think if you look into your heart, you know that what I am saying is true and would probably say the same to your own patients. From my perspective, I really think that you will be okay in the end, but worry is your worst enemy at the moment.

[Bunny12345678 in reply to 2greys]

Thankyou very much for taking the time to reply to me. You are totally right in your advice and approach...I've always known that the 'limboland' as I call it was one of the worst times for anyone...I've been unwell since December, lots of different symptoms from sudden onset (I'm usually very well) basically my dr's have dismissed me all the way, I've had to fight for every scan and referral that I've had...so I'm still awaiting other referrals and tests which will be next month...whats become very clear to me in this nightmare, is how many people are out there like myself, and being dismissed by their gp's...I've learnt more from here than anywhere, its made me get the 'bit between my teeth' even more than before, about advising patients to keep going back to their gp's, patients know their bodies....

[Becky130777]

Hello Bunny I have recently gone through this waiting game and like you I had to keep contacting the GP. I had pneumonia in February which i couldn’t seem to get better from in my right lung. I requested a chest X-ray in the end and after further tests, finally it was confirmed it was a carcinoid tumour and as it was small, slow growing, classed as benign. I had surgery a bi lobectomy 6 weeks ago, as unfortunately where it was it was nearly blocking the tube. So completely understand how you feel right now, but try not to think the worst until you see them. Even after I had my appointment with the consultant and was told about the surgery, I did feel some relieve just knowing what it was and what could be done to help me. X

[Bunny12345678 in reply to Becky130777]

Thankyou very much, its comforting to know I'm not alone

[Caspiana]

Hello 🐰 Bunny , 👋😊

Oh goodness I can only imagine how very anxious you are feeling. I know from experience that telling me "Don't worry" and "Try to stay calm" have a 99% failure rate for me. I was much more anxious years ago. I suppose because I have a lot of health issues. I have somewhat relaxed a bit since then because there are situations I have simply no control over.

Since the don't worry, stay calm approach doesn't help for me, I often take another route and that is, facing the possiblity that what I am fearing is in fact a reality. In which case what goes through my mind is the course of action I can take to counter the the feared outcome. What measures and treatment would be waiting and how I'd work with my doctors to treat and possibly eliminate the problem. I find it empowering in a way. After all, we can't fight illness, we can only treat it.

Writing down your fears here and sharing with us is one measure to help yourself. And you're hearing from people who have been through this and doubtless on your journey you will meet others in a similar position. Take heart that many have been in the exact spot you are in and are here to tell the tale. And in turn you will also be there for someone one day in a similar situation. You may feel like you are waiting for this possibly life changing appointment alone, but believe me you are not alone. You are joined by countless others who have been through it and have come out the other end.

Please do let us know how things go. Thinking of you.

Cas xx 🌸🌿🏵️☘️🌻🌼🌷

[Bunny12345678 in reply to Caspiana]

thankyou very much, you are right. I'm very grateful to hear other people's experiences and philosophy on how to approach things, its helpful

[1968]

Hiya, i feel your paid. I have a lung nodule, found it in Oct 2019, CT scan in Feb 2020, said its not grown. Was due to be seen in July but due to Covid it was cancelled, due to see them this Oct.

[Bunny12345678 in reply to 1968]

yes, it seems a long wait at any stage of this...i guess you have a little reassurance that your nodule hasn't grown...a couple of dr's told me that a lot of people have nodules and don't cause them a problem, i don't know if thats them being too flippant or not though???

[2greys in reply to Bunny12345678]

Yes, from my research this is very true, they do not, on the whole, cause any problems. In my case I was a very heavy smoker for 50 years, having quit for over 4 years now, I am still paying the price for my past sins.

[Alfiebax2]

I too had to have a pet scan as 3 months after having LVRS they found i had nodules that were growing albeit slowly. Pet scan showed no trace of cells appearing anywhere else so my consultant advised anither follow up 3 months later. Saw my consultant after another CT scan 3 months later and miracles do happen my nodules had disappeared altogether. I do wish you luck and being a nurse you are bound to overthink .......i know i did . Sending you hugs and much love to come through this .

Love Babs 💘 xxx

[skinnylizzy59]

It's interesting reading Bunny and all the replies. I had an x-ray whilst in hospital last December. I'm January my consultant told me I had a module my lung but she wasn't worried but I should have CT scan. Then came lockdown and I was shielding so didn't make an appointment for my scan and then my consultant appointment as cancelled and moved to October so I've made my scan appointment for mid-September. I hope the wait hasn't caused anything to develop. Good luck Bunny. Love Lizzy x

[HungryHufflepuff]

Thinking of you 💐

[shouty]

As a fellow ex nurse who worked on a Respiratory ward I was just the same when I had nodules show up on X-ray was worried sick till had CT scans and told they ( like a lot of them) were nothing to worry about so 🤞for you too