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
