Just diagnosed

Hi Mike, sorry to hear of your diagnosis, but early days yet, this is a terrible time when you first get diagnosed, I was all over the place when I first got diagnosed, back in March 2020, just as Covid lock down came in, I found it better once I was more informed.

I would not write yourself off as yet, must admit I thought the worst as well after my CT scan, and being told of the Cancer  tumour, mine was 4cm, then had a PET scan and luckily after a delay because of Covid, they then did a  EBUS biopsy, my eventual full diagnosis was T2a,N0,M0

My diagnosis was stage 1b lung cancer, T is  for Tumour, N is for Nodes,M is Metastasis.

I was not given an option of a surgical operation, because of Covid, no surgery was being undertaken, so just put forward for Radiation Therapy, I had 20 sessions of radiation therapy, one a day Monday to Friday, for four weeks 55 Gy of radiation, I did get radiation Pnumonitis afterwards, but this does not occur in most people, after radiation.

Anyway my last CT scan in October 2021, now 20 months after my diagnosis has shown NED (No Evidence of Disease) unfortunately still can not really believe it, as my oncologist rang me a week last Tuesday and told me no evidence and suggested I may be cured, said he will send the report through once he has it.

So like the song from Monty Python, "always look on the bright side of life" I know it is difficult after first getting diagnosed and later not knowing what is going on, but is always good not to think the worst and treatments have really improved over recent years.

All the best for you and your wife, on this journey, it is a bit like a roller coaster.

Thanks BGJ for your reply. 

It's such good news that your treatment seems to have been so successful.

Although I think I would be like you in my view of a NED result. It must be wonderful to hear it from your oncologist, but I would certainly have a nagging doubt that there was still a danger of recurrence.

I sincerely hope they are right, and that you continue to be disease free. It is reassuring to hear a success story.

I am hoping that that my tests show no spread, and the problem is confined to one lung, because lack of spread seems to be so important for successful treatment 

I will post my results in due course. 

The Covid outbreak was certainly badly timed for your possible surgery, but I am pleased that you seem to be OK despite that.

Thanks for your reassurance and encouragement. It's good to hear of other's experiences. 

1. Hi, its all very scary but I've been in a similar situation. When i was diagnosed all i could think about was my sons, one of whom has had 3 mini strokes andvthe other is autistic. They both live with me and i can't bare to think about what will happen when I've gone.  Its 10 months since i was diagnosed with treatable but not curable lung cancer.  I've had chemo which was not as bad as i was expecting and it has shrunk the tumour considerably.    I hope you are a candidate for surgery which isvthe best chance of getting rid of the cancer.    The awful anxiety does get much less with time and i jyst get on with life and do lots of things i enjoy and nothing i don't!     Good luck with your treatment whatever it will be . Take care. 

Hi Mike, It does drop your chances of cure by not having surgery or used to, first line of treatment for localised NSCLC is usually surgery, as this has always been the golden standard, as they know this has a high success rate, but I think with the advances in radiation therapy this type of treatment is now getting  good results, as most of the information on lung cancer is always a few years old, as studies take time to compile, now with covid we will now see how good this radiation treatment has been, as selective operations have just not been done throughout Covid.

As you say Mike, yes the more contained the cancer is the higher chance of curative treatment working, but even with spread many people on here have no progression, everyone's cancer is unique.

Do not let the PET scan scare you, it did me, mine was showing an FDG uptake of 26, that is off the scale, for cancer activity (FDG is the radioactive substance they inject you with, the uptake is the glucose uptake)

Anyway good look with the results from your PET scan and your biopsy when you get them, that is a bit uncomfortable is the biopsy, but needs must, glad they eventually gave me one as they were not going to because of Covid, at least better informed and less doubt with a biopsy.

I do wish my oncologist had seen me though as I could have looked at my CT scan to reassure myself, you still think did I hear him correctly, my next appointment for the oncologist is in 4 months.

Thanks so much for your encouragement Fay. 

I can't imagine the emotions you felt when diagnosed, having your children to worry about. It helps me to put my worries into perspective.

It's pleasing to know that your tumour has shrunk, and I hope the treatment keeps you well.

Thanks for your kind words and encouragement. 

Thanks BGJ.

I already feel a bit calmer about the future.

I found hearing the diagnosis such a shock, it was only four days ago. I have started to accept the situation and feel prepared for any treatment I am offered.

We are so fortunate to have such an excellent health service. 

I will post an update when I get the results of all the tests. 

Thanks again for your encouragement. 

Hi Mike, four days is no time, I am pleased you are feeling a bit calmer, as I know what you are going through, as the diagnosis of LC, is not a very easy thing to grasp, such a tumble of emotions, you are very lucky that you have been diagnosed, try to think of it in this aspect.

Your PET Scan will show up any other even slight activity.My PET Scan showed up one nodule 2mm left upper lobe and a 2mm in the right lower lobe, after research by myself, nodules can appear for all sorts of reasons, they are usually benign but need observation, my report just says requires indeterminate survaliance, required, I also had FDG (PET Scan Glucose uptake) activity in my mid descending Colon, says inspection following covid, I had a colonoscopy early in 2021, two polips extracted both benign, these polips uccur in a majority of older people, and are usually no trouble, I have had 5 polips removed on two previous colonoscopies I had 2013 and 2016 all benign, I was due another colonoscopy anyway.

In other words PET scans show up any activity, were the Glucose uptake is slightly higher than normal, it does not necessarily mean everything showing up is cancer, your Oncologist will hopefully inform you of this, I had very little explanation of anything, with Covid lockdown as even the Lung nurses were on an answer machine (have since found out in some areas some Lung nurses were taken off Cancer assignment and put to Covid duties), sometimes they did not even get back to you, hopefully with Covid easing that has changed, I think it has, as I rang them up last week, after a seriously bad reaction to my Covid Booster vaccine and got straight through which is a first since my diagnosis in March 2020.

Undue worry can be very unhelpful.

I had my last test yesterday, an EBUS to take samples from the tumour in my lung, and the affected lymph node. Have to wait 5 to 7 days for the biopsy, then will have a meeting with the specialist to learn the detailed diagnosis, and the possible treatment. 

Had a stent fitted in Supra Veina Cava blood vessel because the tumour was pressing on it. The stent has got rid of the dull ache in my chest.

I have lost my appetite over the last few days. My wife cooked a beautiful Sunday lunch, and just looking at the quantity of food was daunting. I really struggled to eat it. My GP advised me to eat as much as I can now, to give my body reserves to get through surgery or chemo.

I think eating little an often is the way forward.

Although the NHS are wonderful and working as fast as possible, I can't help worrying that the cancer is spreading every day. 

Hi Mike,

glad you have had your EBUS, not very pleasant that, but necessary,  your treatment should now very soon commence, I know your worry of it spreading, but try not to worry about this,  it will have been there for quite a time, and from your information given, it seems to be localised,  I assume you have had a PET Scan, the details given at your next appointment, will inform you of what you are dealing with, the Psychological aspects of this information and not been in the dark somehow makes this easier to deal with, well it did with me, you are in this interim period which is very hard to deal with on a psychological level.

You have a journey ahead of you, which is rather stressful, but necessary, hopefully you can keep confident, in what ever the plan is for your treatment, not sure I was when they only offered me External Radiation therapy, I was hoping they would give me SBRT Radiation therapy, as I had researched this and found it had better outcomes, but I did not know then of the advancement of External Beam Radiation therapy such as IMRT Radiation therapy, which is a very focused kind of Radiation therapy which is computer controlled to hit the tumour.

All this is tough to go through, but hopefully you can try not to think of the worst, and try to think on a positive perspective, I know this is hard to do.

I wish you all the best in your recovery, through this difficult time, but do try and not look on it as a death sentence, as many people live many years, and also many people going through therapy with a curative intent, are cured, not to say there is not the worry it will return, even then.

All the best.

Hope

Also Mike, it probably would be a good idea to seek out a good Psychotherapeutic counsellor, If you can afford, I have found this very helpful, even though a bit expensive, I have found that to be able to talk to someone, has really been helpfull for me.