Its taking such a long time.....

Hi Everyone, I am looking to find out if our experience is similar to anything anyone else has gone through and if anyone can offer any support/advice.  My husband was recently told he had lung cancer (5th Jun) after two chest x-rays and a CT scan.  The next step was to be a biopsy to confirm the type so they could figure out a treatment plan.  However, the first biopsy from a lymph node in his chest did not confirm anything, so he was sent for a PET scan.  PET scan results showed some lymph nodes that were 'lit up' (as well as the mass), including some under his arm, although very small.  So they decided they would do another biopsy under the arm and then also another bronchoscopy to try a different lymph node in the chest this time, further in.  Again (3 weeks after the under arm biopsy and nearly 2 weeks after the broncho one) there was still no confirmation of cancer.  So currently he is formally undiagnosed (even though at the first appt they told us unequivocally that it was cancer).  The next appointment is with a Thoracic surgeon so they can talk to us about a 4th, more invasive, biopsy - this will be on 6th August and we're not sure when the actual procedure will take place yet, at which point we will be 9 weeks down the line.  They have told us that from the scans they are 99.99% sure its cancer, but none of the biopsies have confirmed this yet.  We are so confused.  There is no denying there is a mass there and it has been causing symptoms, but is it normally this difficult to get a diagnosis? The waiting and the passage of time has had a really big impact mentally.  We are both in our 40s and it feels like our world has been turned upside down and thrown into the air.

Has anyone else gone through a similar experience whilst being diagnosed?

  • Hello and thank you for your post.

    I am sorry to learn of your situation this must be a worrying and difficult time for you both. I can appreciate trying to make sense and processing what is happening is very hard.

    Unfortunately sometimes getting a diagnosis isn't straightforward. I cannot say why the cancer cells have not been found during the biopsies but it does happen and repeat biopsies will be done. I wondered if the team at the hospital has spoken to you about this or why they think they are unable to find cancer cells at biopsy.

    The biopsy is important not only to diagnose cancer, but also this tell the doctors what type of lung cancer it is, how it is behaving (if it is fast growing) what the characteristics of the cells are, and whether or not there are certain mutations. All of which will help determine the best treatment.

    If your husband has a key person he can contact at the hospital, such as a nurse specialist (CNS) they can talk things through with him. I can imagine you are both feeling quite helpless at this point and I do hope you have friends and family who are also able to offer support.

    If it helps you may find it helpful to talk things through with one of our nurses on the helpline, you can call us on 0808 800 4040 between 9 am and 5 pm Monday to Friday.

    You may also find it more helpful to repost your question on the 'living with cancer 'page of the cancer chat forum where more people may be able to see your post and share their experience.

    I hope you get some answers soon and that your husband can start treatment soon,

    Take care, all the best

    Jemma