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JEBL

Watch and wait advice for lung met/nodule...

Hello
We've just been on the roller coaster of 4 different opinions (from the same team) on my husband's scans - the surgeon initially said they looked ok but needed to be looked at by the radiologist. The he rang and said the radiologist had looked at them and there 6mm nodule in the lungs - we were told over the phone it wasn't sinister. Then it went to the MDT and we went in for an appointment to be told they are certain it's a metastasis. They sent hubby for a PET scan to check. However, the PET scan wasn't very conclusive. They've advised us now to wait and check again in 3 months. Just wondering if anyone else has been through something similar and has any words of wisdom? Been feeling on edge and sick with worry for about a month now :x::x:

Hans

Good morning @JEBL, yes I do understand. The problem is that behind everything is a feeling, and in this case it is dread.
I understand just how difficult it is to read the scans.... Its the uncertainty that it puts you all through.
Giving the 3 month break changes nothing long term but helps their scan checking. My wife has had the same a few times. She is fine now 9 years in!! I put up her story on my profile

KarenE

Hi @JEBL, I am so sorry that you are going through all this uncertainty. We are in a very similar position at the moment. My husband had a 2mm lung nodule appear on his March 2021 CT, as it was so small they said it could have been anything like inflammation. He had CT in September 2021 and the nodule had grown to 8mm so it went to the MDT but it was still unclear so they decided to keep monitoring it. January scan said it was still stable at 7mm, I asked if it had shrunk but they said the difference could have been positioning of the scan. They also mentioned a 4mm nodule as well. They decided to keep on watch and wait as still not certain of cancer. He hasn’t had a PET scan, I will mention this at our next meeting.
Lots of people have lung nodules pop up but never know because they don’t have scans. When a cancer patient has them it has to be monitored because of cancer history.
Andy has recently had another CT on 4 June and we get results on 18 July, it seems like a long wait so doesn’t help with anxiety.
If your or my husband’s nodules do turn out to be recurrences then there are lots that can be done.
Fingers crossed they aren’t though. :x::x::x:

JEBL

Thank you @Hans - it's good to know your wife is ok.

Quote from @Hans:
Good morning @JEBL, yes I do understand. The problem is that behind everything is a feeling, and in this case it is dread.
I understand just how difficult it is to read the scans.... Its the uncertainty that it puts you all through.
Giving the 3 month break changes nothing long term but helps their scan checking. My wife has had the same a few times. She is fine now 9 years in!! I put up her story on my profile

JEBL

Thanks @karen I imagine July 18th does feel a long wait! I hope you can get through it ok and that you get good news. My husband's medical team seem very uncertain about it all and pretty concerned. They are sending it on to a lung MDT to get their opinion on it as well so we will wait to hear what they come back with.

Quote from @KarenE:
Hi @JEBL, I am so sorry that you are going through all this uncertainty. We are in a very similar position at the moment. My husband had a 2mm lung nodule appear on his March 2021 CT, as it was so small they said it could have been anything like inflammation. He had CT in September 2021 and the nodule had grown to 8mm so it went to the MDT but it was still unclear so they decided to keep monitoring it. January scan said it was still stable at 7mm, I asked if it had shrunk but they said the difference could have been positioning of the scan. They also mentioned a 4mm nodule as well. They decided to keep on watch and wait as still not certain of cancer. He hasn’t had a PET scan, I will mention this at our next meeting.
Lots of people have lung nodules pop up but never know because they don’t have scans. When a cancer patient has them it has to be monitored because of cancer history.
Andy has recently had another CT on 4 June and we get results on 18 July, it seems like a long wait so doesn’t help with anxiety.
If your or my husband’s nodules do turn out to be recurrences then there are lots that can be done.
Fingers crossed they aren’t though.

jotty

Sounds very familiar, I was given all clear initially in Oct last year after my APR op, but when I went back to my Oncologist in Jan this year she hit me with the news that I was Stage 4 with lung mets 3mm grew to 15mm in 4 months in both lungs. After being offered chemo I asked for alternative and had SABRE treatment in May. Just watch and wait now till the next scan and chat in August to see if they have shrunk. Health-wise feel good and Cyril the stoma is behaving thankfully. Good luck !

kathyS

@JEBL I had a lung met pop up 18 months after diagnosis it was treated with ablation and I am currently NED. So hopeful they will be able to come up with treatment for this soon. Keep an eye on what they say and if you are unhappy ask another lung MDT about it. :x::x::x:

JEBL

Thanks @kathyS They say they are sending it across to the lung MDT so will see what they say. Frustratingly we don't know when it's due to sit or when we will hear back but I will be on the case following up! I've also got on the case for getting a second opinion as it's obviously not straightforward ifs they've given us 4 different views in 3 weeks on it!

Quote from @kathyS:
@JEBL I had a lung met pop up 18 months after diagnosis it was treated with ablation and I am currently NED. So hopeful they will be able to come up with treatment for this soon. Keep an eye on what they say and if you are unhappy ask another lung MDT about it.

Titanicgirl

Hi @JEBL! I had mets in both lungs. For the left lung we waited and scanned until he could be sure of what it was and was large enough to remove easily. It sounds bonkers, I know, but trying to go in when the met is tiny can cause problems. I had surgery in March for that one. My last scan was clear, so I hope it's the same for your husband! The stress of waiting is not easy for him, I know. Not easy for you, either. Take care of yourself- you're valuable!

pingu14

I have 2 mets in one of my lungs. I was told both are tiny one being 3mm and the other smaller. I had no other scans but was told that if it is metestatic cancer they can tell usually by the shape and how it presents. Im on palliative chemo and both mets shrunk.

JEBL

Thank you! :x::x:

Quote from @Titanicgirl:
Hi @JEBL! I had mets in both lungs. For the left lung we waited and scanned until he could be sure of what it was and was large enough to remove easily. It sounds bonkers, I know, but trying to go in when the met is tiny can cause problems. I had surgery in March for that one. My last scan was clear, so I hope it's the same for your husband! The stress of waiting is not easy for him, I know. Not easy for you, either. Take care of yourself- you're valuable!

JEBL

Thanks @pingu14 I'd understood it was hard to tell from looking at the image if it was a metastasis or not so interesting to hear a different view on that.

Quote from @pingu14:
I have 2 mets in one of my lungs. I was told both are tiny one being 3mm and the other smaller. I had no other scans but was told that if it is metestatic cancer they can tell usually by the shape and how it presents. Im on palliative chemo and both mets shrunk.

jotty

I was told I had mets in both lungs 4 months after they thought I was clear, this of course moved me to Stage 4 where I had never been. I have just had SABR treatment and am due to see the specialist end of August which is a long time to worry. They hope they have shrunk the buggers so please dont give up hope as there are many things they can do first. Never Ever Ever Giving Up !