Diagnosis - an emotional roller coaster

Hi, I too know how difficult this time can be. It can be a very terrifying time for us as patients and our families.

Please don't worry about your PET scan and your needle biopsy.  The needle biopsy is slightly uncomfortable but nothing to be frightened of. I had mine in November which unfortunately did confirm a rare type of lung cancer called a Neuroendocrine tumour which had not shown up on the PET scan taken a month earlier so please do make sure you have both procedures.  I had two previous needle biopsies in late 2016 which at that time did not pick up any cancer although the present tumour is in exactly the same place.

I can certainly empathise with you regarding your emotions. I felt exactly the same as you are feeling at the moment but given the fullness of time, you begin to accept it. II had a terrible Christmas and my poor husband took the brunt of my frustration and fears. I do think the key to coming through this is to keep a positive attitude and I know that is easier said than done. I had breast cancer back in 2002 and I seemed to sail through that but I kept very positive and strong. This time however, I'm finding it so much more difficult.

Wishing you all the best for your forthcoming procedures and your future journey.

Suzanne

Dear Suzanne

Thank you so much for your reply, your kind words and wise advice.

I am so pleased you have your husband to off load to and the sure knowledge of your own inner strength. 

How quickly after the diagnosis did they talk to you about treatment options and then did they start? I hope the treatments are manageable for you.  

At the moment I still feel like I have one foot in normal life but making work or family plans is impossible. They have confirmed my appointments for this week, so I should know more later next week. 

xx

Hi Ying Yang,

Well I was diagnosed on 19th November and because of the rare type of cancer that it is, I was then referred on to an oncologist who knows about Neuroendocrine tumours. I did not get an appointment until 10th January. She was very good and talked us through the diagnosis and the treatment I would have. It was decided that I was to have another scan before treatment commenced called an Octreotide scan. I then received an appointment for 9th February (yesterday) but last Friday I got a telephone call from the radiology department telling me that the machine had broken down and they are unable to do my scan.

At the moment I am very scared because I do not have any appointments lined up. I have been assigned a Neuroendocrine nurse who is not local although I can speak to her on the phone. She asked me if I would mind going elsewhere for the scan so she has emailed the oncologist to see if she will refer me.

So this is where I am at the moment. I just want to get my treatment started. This uncertainty just messes with your mental heath in the most cruel way. I feel as though I am now just a forgotten number in the system.

I understand exactly how you feel about your life in general. It just feels surreal doesn't it. I went straight on the sick from work so that is one less thing to worry about but I just keep trying to live as normally as possible otherwise.

I am glad you have your appointments sorted out, at least you will have some new information in the next few days. It's the not knowing which is hard.

Good luck for this week.

Regards, Suzanne

I had almost identical experience to yours...went in for what I thought was a routine chest X Ray, was kept in for CT and told I had a mass in my lung similar in size to yours.  i then had lung function test, PET scan and biopsy, and i can tell you that none of these processes are painful or uncomfortable.

Friends all told me that the limbo period between diagnosis and start of treatment is the worst time, and they were right. It was hard to keep positive, and impossible to stop having involuntary negative thoughts.

I started a course of chemo/immuno-therapy a month ago, and it was as if a big load was lifted off my shoulders. My wife and I are happy to talk about the future, and I have resumed writing songs, which I had not felt inspired to do before treatment. 

So far I have had some positive effects from the treatment. My persistent cough has disappeared, and when we walk around our local coastline I can take on the steepest cliff walks with hardly a pause for breath.   

I'm not kidding myself that it will all be plain sailing, but I can say that since my treatment has started I feel as if I've been set free.

Good luck,   Gadjo

Hi suzanne
i had my results and consultation this week.  They have confirmed I have a lepidic adenocarcinoma in my right lung, but nothing else showed up in the pet scan, so they are referring me for surgical removal.  Whilst this is very scary, it feels like a small win compared to what I have been fearing over the last 3/4 weeks. I have thought about you a lot since our last messages and truly hope you have now had your next scan and treatment is progressing?

Hi Gadjo 

Thank you for your message and the positivity you share.  I am so pleased your treatment is helping you and I love that you have refound a creative pursuit that clearly means so much to you. 

My consultant is referring me for surgery, and at the moment is not feeling I will need chemo or radiotherapy, but if this changes I will bear in mind how helpful this has been for you.

Hi Yin Yang

So pleased you now have a firm diagnoses with  no sign of spread. It is very good news! Once you know what you are dealing with, I think it helps a lot.

I finally got a letter for my scan appointment this morning for the 9th March. A whole month from when it should have been! This is the Octreotide scan that will show any spread so I am a little apprehensive to say the least. Still, at least things are moving again. 

Wishing you all the luck in the world for your forthcoming surgery. It will all go well I'm sure

Thank you Suzanne and I will be thinking of you on the 9th. Please keep in touch x

Hi Yin Yang

Thank you so much for your kind words. I will let you know how it goes but I expect I won't get the results for another couple of weeks after the appointment.

Do you have a date yet for your operation? Please let me know.

All the best and keep well.

Hi Yin Yang

really pleased that you have a firm diagnosis and a treatment plan. it must be so much easier now that you know what you are dealing with..

I have my Octreotide scan rescheduled for next Wednesday but I am dreading it. I am claustrophobic so having a scan is a huge deal for me. On top of that I worry what else may show up but I suppose it has to be done. I will just have to be very brave!

I have only just seen your message because my dog chewed my laptop and I had to get a new screen and only just got it back!

Wishing you well for your surgery. Keep in touch and let me know how you get on.

Suzanne