Hi,
I'm a "high/early achiever" - I'm now 54 and had my chest cracked open 8 years ago, early I'm told, to have a 4x heart bypass and now I'm told I'm young going for my lung cancer diagnosis. (The high achiever is my children's sarcasm, btw. I'm just an ordinary Dad who has black humour to cope with these things).
I've put in my background for those that care. If you don't feel free to go directly to my question below here
I'm trying to untangle everything the specialists have told me to understand where I am, so I'd love the opinions of others. I've lost both my mother to lung cancer (when she was 67) and I've been taking my mother-in-law to the lung oncology sessions I am now attending until she passed in January. I am "on the spectrum" which means I read a lot from reliable sources, such as BHF, MacMillian, NHS etc, and not "youtube, you can't trust Pharma" videos, . I also ask for direct answers whenever I meet my MDT team.
The background is this. I was having what I thought were heart problems and was sent for a heart advanced CT scan (with dye). A week later I get a letter from my cardiac team informing me that my bypass grafts are working fine, but I had an irregularity in my right mid-lobe and was being referred to the respiratory team. About 2 hours later I was phoned by said team and asked if I would join them in 6 days, which was the next slot as the team meets once a week.
The lovely lung specialist doctor who in my letter stated:
"The most suspicious lesion is in the right middle lobe. There is an additional area in the right upper lobe but this has no solid component. There are small volume lymph nodes which may or may not be relevant to the lesion in the right lung. We discussed the next steps in investigation to come to a final diagnosis which has been outlined below. I explained that although at this stage we cannot give a firm diagnosis, I would expect the most likely diagnosis is lung cancer. The next scans will give us more information about whether this has spread to other sites. He is aware of the different stages of cancer, which we have not discussed in detail today, but depending on the stage differing management options may be available."
I read that and thought, OK. Off I went for PET and CT scans.
The oncologist I saw after my PET and CT scans, who is a very optomistic chap. He had a different tune to my first visit. In his letter he stated
"The CT shows a right middle lobe lesion, 23 mm and indeterminate. There are also 2 cystic airspace lesions in the right upper lobe and left lower lobes which will need to be kept under surveillance. His PET/CT showed low-level FDG uptake with no evidence of disease elsewhere. The Herder score for malignancy was 21%. Although a reasonable risk of pneumothorax given his previous cardiothoracic surgery, a CT-guided lung biopsy has been receommended."
As an aside, This lovely optomistic chap happens to be the same person who told my MIL not to worry about the time it was taking to get a biopsy of her suspected cancer, that her cancer was slow, not agressive and the extra 6-8 week delays were nothing to worry about because they failed to get a biopsy, but didn't want to tell us. After 5 weeks it was repeated and she was diagnosed with SCLC, T2-3N1M0 and we were told it was fast growing, agressive and the prognosis wasn't great once the lovely optomistic chap stopped being my MILs oncologist).
Now I've read up on the Herder score at is seems to be largely about population statistics. I also know that when the did the biopsy, my lump hadn't shrunk as the Dr performing it told me so. And I know that the dye uptake wasn't super fast, but we weren't shown any information from the PET scan, not had any figures shared other than the gerder score. We had to ask to see the lump and he showed us a couple of slides from the CT scan and that was it.
I've had the biopsy and they hope to have got 1 good sample, but due to the position of the lump, they had to go through 3 lung layers (fissures I think) and my lung started to collapse immediately. It was relatively painless though and I'm as recovered as I can be after just a few days.
So, getting to my question. How many people have been in a similar position and how accurate did they find the Herder score, or are they not normally shared?
Many thanks
Hi Maverick O and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
If you don't get any replies here, it might be an idea to also post this in the ask a nurse section of the online community. If this is something that you'd like to do, just click on the link I've created, and you can then post between Monday and Friday.
While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi David /Maverick O
Not too much longer to wait then. I'll be keeping everything crossed for you.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi David/Maverick O
That's great news that the results of the biopsy don't show cancer but it must still be a worry for you that they need to do another biopsy.
Fingers crossed this will show the same.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
