Awaiting Diagnosis

This must be such an anxious time for you both . The scan can give a better indication of what is going on in the lung when a decision can then be made whether to biopsy or not . Specific markers in a blood test can indicate cancer but not always x

Thanks for taking the time to reply.  My husband is an electrician and came in to contact with asbestos while trying to provide for his family.  I am so worried and angry at the same time.  The waiting is so hard, but at the same time I'm in no hurry to hear bad news.  I'm trying to stay positive,  but worry about the future.

I completely understand . I was diagnosed with mesothelioma last July (I’m 61) my dad also had it, t I’m not sure how I contract it but possibily fibres from his clothes . On the positive there are more treatment options these days. It was a terrible shock but once that past I have tried to focus on living the best life I can. I have three children in their 20’s who  do not let me dwell on things !!! I’m still working , socialising and deal with things as they pop up.

You will be in my thoughts on the 17th xx

Hi Pdav

I’m so sorry you find yourself here in the group no one wants to be part of but you’ve come to the right place.

Everyone here is going through the same or similar as you and we’re here to support everyone that needs it while getting the support we need at the same time.

I’m sorry you have this anxious wait for your husband’s CT scan results. It’s so nerve wracking isn’t it and it seems a long wait.

I will answer your question as honestly as I can and I can say from personal experience that cancer definitely can be diagnosed from a CT scan as mine was but then I still had biopsy’s to determine the exact type of cancer, in some cases further tests to establish what gene you have but that part isn’t necessary for everyone. I had to have further tests to find a gene as my cancer was deemed inoperable and incurable at diagnoses but again everyone’s situation is different.

I had an X-ray on Christmas Eve 2024, my CT scan on 3rd January this year and was actually told by my GP on 9th January  that mine was cancer as it was so clear on the CT. I was then put on the two week wait to see a thoracic consultant then the oncologist after that.

I started treatment a month ago.

I can definitely say second guessing what’s going to happen is only going to cause more stress for you both than thinking as positive as you can until  you have all the facts. It’s certainly not easy I know.

If your husband does have cancer then it may be early, operable and curable, you won’t be sure of anything until you’ve seen your oncologist.

In the meantime we’re all here if you need us and we’re here to support you both.

Stay strong.

Sending positive vibes and big hugs  

Jools 

Hi pdav,

I'm sorry to hear that you and your husband are going through this.

My heart CT scan showed a lump in my lung, leading to a PET scan and a CT scan with dye. After all that, I was asked to do a biopsy. As that was inconclusive, another biopsy was requested. The point is that even though they predicted cancer after the scans, I haven't started any treatment yet and I'm told I won't until the cancer is confirmed by the biopsy.  I don't know what normal practice is, but for me, after the scans came the biopsy.

I hope that helps.

Thanks

David

Hi. My dad is going through a similar process and we are now 3 months in and still no diagnosis. He head just been referred for another biopsy. How long did your process take. I feel we are going round in circles. 

I finally got my diagnosis today, which was luckily not cancer.  If they have done a PET and CT scan with dye, they may be using the Herder score to determine if it is a cancer. 

As my latest biopsy has come back negative for cancer, I'm now on monitoring or surveillance and I'm due another scan in August which will be compared to the scans in February. 

In terms of a timeline, this is how it went:

1. 28th Jan - CT scan for my heart (previous quad heart bypass
2. 5th Feb - Letter confirming something in my lung
3. 12th Feb - told I needed new CT and PET scans, which happened over the next week.
4. 26th Feb - Told I needed a biopsy. Using something called the Herder score, I was scored as 21% that there was something malignant. If the score is under 10%, they don't normally proceed I was told.
5. 10th March - first biopsy
6. 19th March - biopsy results. Inconclusive, so second one booked
7. 1st April - second biopsy
8. 16th April - biopsy results were inconclusive, so send to Royal Brompton for a second opinion
9. 30th April - Results back. While my cells are "atypical", or not normal, they do not believe they indicate cancer. Therefore, the next step in a scan in August to see how much things have changed.  If a large change is seen, this will result in a decision as to how to proceed.

I hope that helps.

David

Well we are still waiting and worrying.

They found a nodule on his right lung.  It wasn't there in July 24 but was in Feb 25.  They say it is unlikely to be cancer but need to do another scan in 3 months to see if it has grown.  Such a worrying time ahead.

Hi, 

I'm sorry to hear you are stuck waiting. I'm very aware as to what that feels like. I ended up on sleeping pills due to the anxiety and at least I had more activity.

Was the previous scan done with dye? If so, they might have a low herder score and that is why it is just observation. No harm in asking them why no action and just survalance IMHO.

Take care and good luck

David

Thank you so much for your reply. I hope your next scan has positive results for you. Dad is having a further biopsy on his lung next week. They say they are trying to determine whether mesothelioma. I think I they are having some difficulty finding a positive result one way or another.  His timeline is similar to yours so hopefully we will get a decisions of one kind or another. Your reply was really helpful. Thanks again.