Helpline
Speak to a member of our Information Support Team
(Call-back service – 24h answer machine)

020 8973 0011

or email nurse@beatingbowelcancer.org
Beating Bowel Cancer Community

Stage 4 bowel cancer

Elizabeth1968

Lung Metastases

Hi, my husband was supposed to have a routine scan in February but he was 'forgotten' and ended up having the scan on the 6th March. He was then asked to have a PET scan as the CT scan showed a nodule in his right lung. We had to wait 2 weeks for the PET scan results and the MDT meeting to be held because of Easter, then we were told his results were being referred to another MDT meeting which was held today. He has had a telephone call today to be told he now has to have another CT scan so they can take biopsies. Which could be up to another 2 weeks! Then of course we will be waiting for the results again. There is such a lack of information coming from the hospital and the nurse my husband spoke to this afternoon was rude and uncaring and 'accused' him of looking on the internet. Is it any wonder?! My husband arranged an informal meeting with one of the doctors last week which is due to take place this Thursday. The nurse asked him if he still wanted the meeting 'as the doctor won't be able to provide any more information than she already has'. Not sure what information she thinks she has provided as we have loads of questions and you don't generally think of them during a 2 minute telephone anyway.
He has been told during a phone call that he has 3 nodules (not 1) and in both lungs and he needs a CT scan so they can take biopsies. We don't know how big they are except that the biggest is 1cm (is this big)? Or where they are in the lungs.
The lack of what seems to be urgency and information is so frustrating and frightening. I'm struggling to put one foot in front of the other let alone getting on with our everyday lives. Plus that's just me, my husband must feel 10 times worse!
I'm sorry, I know this post is manic, but what I need to ask is, is the waiting and procedures he is being asked to have usual? Why does he need to have biopsies? What will the biopsies show?

Polly68

Hi @Elizabeth1968, I'm so sorry to hear about your husbands new diagnosis and what seems to be very uncaring treatment by your hospital and his team. I was also told I had lung mets last year and I totally understand the shock and need for reassurance and answers. With my case I had what they also thought was lymph involvement, so although I initially asked for a second opinion, I was told that any referral would want me to have chemo first, so I had 6 months folfiri. They didn't do a biopsy at that time, as they just assumed it was mets. After the chemo I got my second opinions which resulted in a biopsy of the lymphs and as they were negative I am currently having lung ops to remove the tumours. My tumours are all between 1 - 2cm which I've been told is very small ( not to me !!!). My lymphs were inflammation and granulomas, so maybe your team want to be sure it's cancer and not infection. My tumours from my first lung op were tested to see if they were benign, mets or even a new lung cancer - two were mets, one was benign!
I hope you get all the answers to your questions and that they show you a bit more empathy. I think that keeping your dr appointment will allow you time to write down all your questions and hopefully get all the answers to give you the full picture on their plans.
Much love Paula :x::x::x::x::x::x:

Elizabeth1968

Hi @Polly68
Thank you so much for taking the time to reply. It really does help to hear other peoples experience and positivity.
You're right in that we may get to know a little more tomorrow, fingers crossed, and might gain some idea of how they are going to treat him. I suppose its the uncertainty that's so hard.
Thank you once again, and I really hope your operations go well for you.
Elizabeth
:x::x::x::x::x:

charleyb

@Elizabeth1968 gosh the nurse you spoke to sounds exteremly uncaring and quite frankly unproffesional. You have the right to question everything!! and so what if he has googled, if i hadn`t looked on this forum i would not know half the things i do.
My hubby only had one met in his left lung, which was not biopsied, it was either a met or another primary, being that it was 5cm on diagnosis it definitely was something that needed taking out. LIke @Polly68 says maybe they are unsure what they are so need to check. What i will say is that during surgery two other nodules were taken and checked and were just a collection of blood vessels and nerves, so hoping that may be the case for you. If they are mets there are lots of options so hold tight. :x::x::x:

Alva

Hi @Elizabeth1968 I had a lung nodule discovered during CT scan. Then had weeks of confusion. They did a PET scan; was told this was positive/negative! Finally saw lung surgeon who then operated; as it was metastasis they then offered me chemo. I had this even though they said they didn’t have much clinical evidence to show that it would help.
All in all, uncertainty is definitely a major part of living with cancer. I wish your husband all the best and hope you have good support yourself as well

Sasa

Hi @Elizabeth1968 , I agree with @charleyb and most of the info comes from this forum and all the wonderful people who post on here to help one another...

My hubby has 3 nodules on each lung, which are all ‘millimetres ‘ in size, and his onc says that they are too small to treat below 1cm, which they will ablate when they reach this size. He also said that he is soooo relaxed about them as they are so easy to treat that he really isn’t worrying about them at all.

Hope this sets your mind at rest a little.... and if you want to google stuff you bl**dy well do it, it has given me a sense of control just having a range of information about things. It’s not for all, but if it feels right to you then it is right for you.

Sarah :x:

Elizabeth1968

Thank you @charleyb, @Alva and @Sasa for taking the time to reply. This forum is really great and I so wish I'd discovered it when my hubby was originally diagnosed in 2016! Its so reassuring to hear other peoples experiences. I think we now understand what is happening and why they are following certain procedures, which has made us feel calmer. Also things have suddenly started moving, a blood test yesterday, a lung capacity test today and the biopsy on Monday. I suppose then we will be back to the waiting game but at least we understand why now.
Thank you once again, your responses were sooooo appreciated by me and my husband.
:x::x::x::x:

charleyb

Wishing you lots and lots of luck with it all, and yes you are right the waiting is awful :x::x:

Alva

That’s good @Elizabeth1968 will keep you both in mind. Get back on here if you need further help

lindyloo

Hi @Elizabeth1968 we are in the same boat as you atm 2yrs ago whilst having a meeting with liver specialists it was dropped into the conversation matter of a faculty that dave had a spot on his lung no one had mentioned this before eg his consultant or specialist nurse but we were told from liver specialists oh its nothing to worry about 50% of people have them any way 2yrs down the line no more mention of it numerous ct scans blood tests another liver resection then last ct scan in February onc tells us that there is a tiny dot on his lung I ask if it's always been there he says no now I'm confused ,so because daves the sort who doesn't want to know things rushes us out of meeting I then rang nurse and explained everything that had been said 2yrs ago she was oh well if hadn't been mentioned before obviously it's nothing to worry about errmm yes I think so ,,, next thing mdt meeting we then gets a call he is now being referred to lung specialist as a precaution because they don't know what it is and apparently it seems to have grown by 2mm but she said that it might not of grown it might just be that the ct scan had taken it from another angle. So now we are waiting for appointment this has been going on since February I'm sick of ringing for imfo and forever asking questions you have to hopefully you will get your answer's and results soon good luck sending you hugs :x::x:

Jorton

Hi @Elizabeth1968

Just over 2.5 years since my reoccurrence and 2 years since removal of the three nodules across both lungs.

I dont believe they will complete any biopsies during a CT Scan. I was told by my specialist that to complete a lung biopsy you have to 'open you up' so they might as well remove them when they are 'in'.

My original CT scan identified suspect 3 areas, I was told to wait 3 months to see if there was any futher growth. The next scan showed slight growth so I had a PET Scan to confirm. Following this I went for two lung ops took place in Jan and Feb 16, followed by 6 months of chemo.

Hope you get more details soon

margaret ensor

Elizabeth 1968 yes biopsies are necessary to determine size type and treatment. I have secondary lung cancer right lung 2.2 cm on chemo now. My first biopsy was deemed not sufficient. I live in Spain 70k from Malaga cancer hospital but they sent me to Granada where they have more advanced equipment that's about 90k and it was snowing and cold so we stayed in a hotel over night then just as my feet entered the operating room the surgeon said some of my paperwork from Malaga was not in order! So back to Malaga new date new hotel finally biopsy! My husband said the night before if I felt up to it we might do a spot of tourism in Granada! I will not print my reply. A very handsome surgeon said this time we do it I said since it's taken so long could you do a facelift too he said that's extra. Margaret