My Journey to Diagnosis

[GlynnBar8]

Hi, I posted on the UKRoy Castle site and realised that I could also post here. I have already found some relevant information on this site relevant to my particular journey. Judging by comments n this site and replies on the Roy Castle site, what I am experiencing is not as unusual as my doctor suggests. So here goes!

I am a 51 year old guy who enjoyed good health and a good life up until 2 1/2 years ago. I started to feel very tired and thought that age was beginning to tell. After a few months I had a medical at work and it was noted that I had lost weight. I then decided to seek help from my GP and after ongoing fatigue and other issues I was sent for a CT scan in March 2016. Great news, all clear! In December 2016 I had further referal to the hospital and after seeing a few consultants, I eventually received my diagnosis of small cell lung cancer. Now it is not clear if my 25 months of symptoms were connected to the lung cancer diagnosis or if they were unrelated and in some way helped uncover the lung cancer earlier than it would otherwise have been found. As you probably know, time with consultants are quite rushed and my oncologist says he only normally gets to see patients once diagnosed, so can't really comment on my journey. I was wondering if it is indeed as unusual as it feels. Were my earlier symptoms in any way connected. I would be be pleased to hear your views or share professional experience.

Glynn

[RwHayes Community Superhero]

Hi Glynn ,

That's a really good question I too had a very similar experience, I had symptoms that couldn't be explained for 2 years before my sslc was diagnossed, and also after lots of testing we found it was not as advanced as was thought in the beginning. My tumor is 4x6 but had no mets anywhere that we have found. Also I had a long period waiting to begin treatment because of thanksgiving but we saw no change at all in my diagnosis during that 5 week period. The only explanation I can figure is maybe small cell is not as fast moving in some people, or maybe when I quit smoking it just stalled it out for a few days. Anyhow we are glad you are here,but obviously not glad your sick. But it's always helpful to have another persons experience to compare.

Best wishes,

RW

[GlynnBar8 in reply to RwHayes]

Hi RW,

This just can't be coincidence. Someone on the Roy Castle site also had a similar experience. My doctor though, said if my symptoms were related to small cell then I would have been lucky to see 2016, never mind 2017. I did have a CT scan in March though which didn't pick anything up. It was low dose with contrast, I am not totally sure what this means but my doctor said it would have picked anything up. I only kept pressing my gp because our occupational health nurse told me that there was something wrong that needed to be investigated to get an answer. I owe that nurse a great deal.

It is interesting that you say that maybe small cell is not fast moving in some people, I have not found anyone that agrees with this yet. Did you run the theory passed your doctors? I was told that the typical doubling time was 30 days and that was why they liked to get treatment started pronto.

Great that you cancer is not as advanced as first thought, hopefully that good news will be followed by more good news.

Best wishes to you,

Glynn

[RwHayes Community Superhero in reply to GlynnBar8]

Hi Glynn ,

I also had a combination of tests including ct, MRI , with contrast, colonoscopy.all thinking maybe aneurysm , or cancer.all were negative. They almost had me convinced my symptoms were in my head but woke up in middle of night with really bad chest pains and went to er. Attendant there ordered another X-ray then ct and he noticed my mass upper left lobe

[kate93105 in reply to RwHayes]

Hello Glynn: I too have small cell lung cancer since late 2014 and still being treated. I also had a double mastectomy the begining of 2013. So far I am free of breast cancer. The first two treatments for lung cancer

were with chemotherapy and radiation therapy to my brain. This new round of treatment is with Keytruda (immunotherapy). I am feeling good but tired as I was with the chemo. I have no nausea which is wonderful. Chemo made my very sick!!! Have you tried immunotherapy yet? I wish you well and will keep you in my prayers. God bless.

[kate93105]

Glynn, Hello!! My name is Kathie. I am quite surprised that your oncologist does not find the time to see his patients only once upon diagnosis. I see my oncologist every few weeks and she spends at least 10 - 15 minutes each time. Have never heard of a oncologist only seeing patients once. Where is your cancer center located? I live in Santa Barbara, CA and my cancer center is only a few miles from my home. I am so lucky to have my doctor. She listens to my questions and gives me answers I can understand. She never makes me feel rushed.

I was diagnosed with small cell lung cancer by accident. I had a horrible cough that would not go away so I went to Urgent Care. The doctor said I possibly had pneumonia and sent me for a chest x-ray. He saw a nodule in my right lung and referred me to the cancer center the next day. I am so grateful this doctor reacted so quickly. I had a CT scan and MRI of my brain. I was told I had small cell lung cancer and needed chemotherapy and radiation. The small cell lung cancer shrunk but my doctor wanted to give me another round of chemo a few months later. I finished the chemo and felt so happy. After a few months, I went in for a CT scan and MRI of my brain. The cancer grew a little but I was not put on further chemo or radiation. Instead I was put on immunotherapy called Keytruda. I have one infusion each three weeks and see my doctor before my treatment each time. The side effects of chemo and radiation were terrible. I was always nauseous, tired, lethargic, and got no exercise. I tried to eat healthy - lots of protein and fresh veggies, but couldn't even stand the smell of food. Anti-nausea medication made it better.

I wish you the best Glynn. I will put you on my prayer list. God bless you. Take care, Kathie

[GlynnBar8]

Hi Kathie,

I am based in the UK, so quite a distance from you. I am so pleased that your doctors acted quickly and I am sure it has made a difference. I don't know anyone here on immunotherapy for small cell, but I am glad that it is working for you. I find the chemo really impacts my quality of life.

When I said that the oncologist only sees people once diagnosed, I meant that he only sees you after the diagnosis and every few months thereafter. So he does not get to see all the trials and tribulations of getting diagnosed and is focussed on the future rather than the past.

Thanks for responding, it is lovely and motivating to hear how others are coping.

Take Care,

Glynn