Waiting for diagnosis - feeling terrified

The waiting is a nightmare isn’t it? So hard to distract yourself and stop the worrying. 

Hi, sorry to hear about your diagnosis. It's common to worry and fear the worst, I was the same.  It's the second time of having cancer for me. The first time was 34 year's ago, right breast at the age of 41...my first thought was I would not live to see my son grow up, he was 12 at the time. In those days, apart from a mammogram, there wasn't any CT or PET scans, just a FNA (fine needle aspiration) biopsy to confirm whether the lump was malignant or not, mine was. The whole scenario felt very surreal and looking back I think I was in a state of shock. 

It was discovered during surgery and axillary node checks that the cancer had spread into my right axillary lymph nodes, so was staged at stage2. After surgery (lumpectomy) and six weeks of daily radiotherapy I was on three monthly follow ups. As I said, there were no CT scans and my follow ups just consisted of a physical examination of lymph nodes in my axillae, neck and groins and mammograms were every six months.

My recent diagnosis was lung cancer, diagnosed in August 2023. Like you, I was in shock and didn't tell a soul until I knew exactly what I was dealing with. I didn't want to tell my son and daughter because I didn't want them worrying until I knew there was something to worry about. I only went to the GP for a lingering croaky throat after having Covid in May 2023 and was sent for an X-ray, the rest is history.

Regarding you saying about the pain in your hips, try not to worry, the PET scan will pick up anything concerning. My PET scan picked up the fact that I have mild diverticulosis in the bowel, but it is not concerning and causes me no symptoms. Unlike a CT scan, a PET is very thorough and is a whole body scan, taking in the brain downwards to the knees. It takes a lot longer than a CT scan, and instead of the normal contrast that is used in a CT and administered through the cannula, it is a solution called Fluorodeoxyglucose (FDG) and is a radiotracer and a form of glucose. Apparently cancer cells need energy to grow, so they take up and absorb the FDG solution and light up. When I was shown my PET scan result on the computer at my first follow up, the cancer was lit up like a lightbulb. You are advised not to eat anything for six hours prior to scan, but you can have water.

The FDG solution is radioactive, so once administered you are basically sent into an isolation room for 50-60 minutes for the uptake to take effect in cells. Then the PET is taken and lasts for about 30 minutes. I was told to drink plenty of water to flush the FDG out of my system and not to have any contact with pregnant women or babies, this is because our body is radioactive for a few hours after the scan.

It's coming up to a year after everything and finishing treatment on the 15th December last year, and everything is going well. I only had radiotherapy (SABR) as my cancer was less than 3cm in size. I have gone through the whole gamut of feelings such as shock, fear, panic, and blubbing like a baby at times..but now I feel back to normal, follow ups are positive and I am just getting on with my life as normal. Trust me, you will too. It's strange, but once all the investigations are out of the way and you know where you stand, when treatment starts you will feel better because something positive is getting done and you will be on the road to recovery.

Best wishes, Ann 

PS.....Sorry about the lengthy reply, just thought it would help a bit from someone who has been there.

Hi Ann

I’ve got all the info for my PET scan today and I know that it’ll show up any secondary cancers and that’s  why I’m so scared. I’ve also got a CT Scan of my head tomorrow again to look for any signs of cancer. It’s just so scary having all these tests and not knowing what they are going to find. I just hope I get the results quickly. At the weekend I was able to distract myself by seeing friends but it’s impossible on days with appointments! It’s good to know you are getting back to normal though. My biggest fear is going to be how to tell my children and how they will cope with it. But  trying not to think that far ahead yet. 
Susan

We’re in the same boat and don’t yet know the size or prognosis as biopsy ct guided is on Friday.

My husband is in a lot of pain and no one can assist further at the moment until we hear from the palliative care team we’re being referred to. That started a week ago that process and nothing yet. I’ve been reassured this referral doesn’t mean what we thought it did, and it’s just to help with pain.

We want nothing to delay the biopsy we’ve been waiting five weeks for. We just want any treatment to start to hopefully reduce the pain.

He is not sleeping much which means I’m not. He’s not able to move much as anything sets the pain off to increase.

We think it must be touching or growing on a nerve as he sometimes gets jolts of pain. And from reading up about lung cancer not everyone experiences pain.

We are also terrified. In this limbo period of not knowing much. It’s at the top of the lung and has spread to local lymph nodes but no further, yet.  We think it’s medium sized as the consultant said ‘intermediate’. And it’s not been graded yet.

You find yourself guessing the stage. I’ve guessed stage 3. But who knows. I’m dreading the wait after the biopsy. I’m dreading the pain he’ll be in on a Friday night when there’s no one able to help, and any risks of complications from it.

We’ve told close family but no friends. My husband is 52. He’s finding it hard to be positive and is sick of my positivity. I’m always hopeful that miracles can happen and he will be better one day.

I wish all on here the best of luck and love. 

I've got my appointment in the morning to get results and prognosis.  Not sure how I'm feeling right now. My daughters are both going to the appointment with me. I'm really scared of what they are going to tell me, but know I've got to be strong.  I'll let you know how I get on tomorrow

Elena55 and AKAFS, hang in there.  I just heard tonight that there have been no less than 16 new drugs developed in the last 5 years to treat lung cancer. There has never been a better time to have hope after this awful diagnosis.  We have to keep as fit as we can, so we can be offered these treatments.  Looking forward to hearing your results and treatment plans. 

Elena 

I feel for you. I can imagine how scared you must be -  but at least the waiting is now over and once you have the prognosis  treatment can start if required. 
unfortunately my PET scan yesterday got cancelled because the machine had broken down. It’s now on Saturday. 
Good that your daughters are going with you. I’ll be thinking of you

Susan 

Delilah and husband  

So sorry to hear about your situation - the pain must make it so much worse.
I have recently developed  some pain but it’s not sharp like your husbands so I can take a tablet and switch off from it.

I think it’s best not to do much googling or reading up. That was my initial reaction and I was making myself absolutely terrified. 
The internet is not up-to-date and people in this group have assured me there are lots of treatments available.

Is the biopsy on Friday? Have you  tried heat pads and/or ice packs for pain?
In my experience the amount of pain doesn’t relate to the seriousness of the condition. Nerve pain is tricky but give heat and cold therapy a go if you haven’t tried it. 

Thanks Anne that is really good to know. 
unfortunately my PET scan got cancelled yesterday  - now on Saturday. 

Went for my results on Wednesday. She went through what could happen but said I need a full lung function test and a brain MRI before they can finalise anything. She told me things would move quick now and she wasn't joking. My lung function is booked for Friday morning and MRI Sunday morning. Apparently the team meet on Mondays so maybe I'll hear something by next week. Fingers crossed.  Wishing you all good luck.