Lung cancer for 2nd time

Just undergone surgery November on left upper lobe (lingual segmentectomy- think that’s what it was called) 

previous upper right lobectomy 5 yrs ago so didn’t want to take full lobe again 

pet ct showed one tumour,  6 weeks later the surgery, path lab report 3 tumours in what was removed and no clear margins. 
MDT meeting held but my consultant wasn’t in on this. 
the meeting resulted in recommendations for chemotherapy referral and possibly radiotherapy for 4 spots on apex of upper left   
told if not heard anything in 2 weeks to phone & chase up.
after calling 3 different departments because referral hadn’t been sent, I’m informed it now will be shown to my own consultant to agree the decision before referral will be made and then have to await the appointment to discuss everything n then wait for date to start the treatment. 
I’m really confused.  Is this normal practice if your own consultant wasn’t in on the meeting when a decision for further treatment was taken ? 

I received confirmation of intended follow up treatment and details of phone number’s to contact if I didn’t receive appointment within 2 weeks,  as they want to start asap to have best outcome due to my cancer type, and they expected to start by mid January 

I received notice of intended telephone appointment for 15 January to follow up from surgery, was told if I wasn’t being referred to oncology, it would probably have been a face to face appointment with X-ray & other checks and due to referral this is normal as I’ll be having regular checks whilst under oncology and it frees up appointments for others waiting.

Iv had a bad feeling about this second cancer and thoughts that it won’t end well and I continue to lose weight and be nauseous since my surgery while trying to stay strong and positive but I’m so concerned that a delay will impact my options as I don’t expect to have a start date till early February at this rate and that will be 14 weeks since surgery. 

anyone else had a similar experience who could enlighten me or offer some reassurance or ideas on what may happen 

Thankyou in advance x

  • Hello Hutchi

    I'm sorry to hear that the results of your most recent surgery weren't as clear-cut as you might have hoped for. It's understandable that you're feeling worried and anxious about the information you've been given and the potential delay in starting the next phase of treatment. Hopefully the appointment you have scheduled for the 15th will bring some clarity to the situation for you. 

    In the meantime, I wonder if you might find it helpful to talk things through with one of our team of nurses. I'm sure they will be happy to offer any advice, information and support they can along with helping you think about questions you might want to ask the specialist. If you'd like to talk with them they're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    Keep in touch Hutchi and let us know how you're getting on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Thankyou for your response. 
    I have now had confirmation from my lung nurse that I will be seen on Tuesday 9th in oncology to discuss the treatment plan and they will call me with details of where and what time this will take place. 
    I will definitely give the nurse team a call as I’m confused reading some of the information especially regarding food to eat/avoid - does it matter what you eat while on chemo. 
    would welcome other people’s experiences on how they managed symptoms of chemo while trying to stay healthy and eat well

  • thank you for your response

    I received a call yesterday from lung nurse stating that I have been given an appointment to be seen by oncology on Tuesday 9th January n they will call me to confirm details of where & time. didn’t receive a call so will chase up Monday morning  

    I will definitely give the nurse team a call as I’m confused on some things that I have read especially regarding what to eat or avoid. 

    would welcome any tips from anyone regarding their experience of what helped them stay healthy through chemotherapy and eating well.