Waiting for diagnosis after surgery

[Juno888]

Hi Sueblue Nice to put a picture to the words. Nothing like face value. A picture tells a thousand stories. I hope you get that call sooner than later. Waiting days is one thing but waiting hours is just as bad. Thinking of you. June

[Sueblue]

Thanks Eva, I too am learning this life lesson, patience! The haematologist rang me yesterday. Basically I won't have an appointment with them until they have more information about the lymphoma. They are waiting to hear back from the ENT surgeon about the possibility of performing another excision biopsy. So I'm thinking I'll be waiting at least another month or two to find out what is happening regarding treatment. Last time I had the biopsy there was a 3 week wait for surgery, then the biopsy results take another 2 weeks at least to come through, so that's 5 weeks before the haematologist would have the results, then I can have an appointment after that. In the meantime I've decided to just get on with my life as best as I can... like you this has been going on in some shape or form for quite a while - it all started in March/April, so it's been 5 months already. Thinking of you today 🙂

[Sueblue]

Thanks June :) Well I will be waiting weeks or months before I know anything (see my reply to Eva), but at least I know now I'm going to have a long wait ahead of me, and why. I just have to be patient, which is easier said than done! Sue

[evaboo]

Oh Sue! How aaaarggghhhhing (if that's even a word) You've had such a strung out wait. I'm sorry. Don't suppose there's anyway of hurrying things along either is there? I think you're right, get on with your life as best you can. They had to cancel my appointment with the GYN at the last minute but I had an appt with my GP. That afternoon. She got the results sent over as I had a major meltdown in the surgery :0( There were abnormal cells in the cervix but they were contained in the chunk he took away so no more treatment for that phew, so that's it. That would be the end of it but the post op infection I picked up had my GP send me for an X-ray and ultrasound. The ultrasound picked up a mass in the pelvis so they're checking me out for ovarian cancer now. Balloons yesterday, CT today and of course, my cancelled and rescheduled GYN appt with the surgeon who's just about to go on holiday for 8 weeks! Welcome to the merry-go-round Hang in there Sue. Eva x

[Juno888]

Hi Sue Oh I see. I think it is like this for everyone at some point. Knowing that doesn't make it easier and doesn't help you to feel at peace. Our experience is just that personal, private and way more meaningful. I complained about my symptoms 2 years ago and then again last year but was told I was perimenopausal. I even told my doctor I was worried about cancer since my family has a history of cancer rearing it's head at around the 45 year mark. He took a blood test and that didn't show anything. I should of known, my dad was sick for 2 odd years before he got diagnosed with pancreatic cancer at 47. Not that any of these word will make it any easier for you to digest and feel better about what is happening to you personally. We all have our personal experiences and they all involve long waits and uncertainty about the outcome of results. Learning patience. I guess to an extent. It could just be helplessness and a sense of giving up the fight to get noticed. I don't know. Acceptance of how the systems work and the long road cancer is maybe. I am waiting for my appointment on Thursday. Seems like forever. I was told no chemo and now I find out it might be an option. External radiotherpy. I was told there is a possible 3-4 weeks waiting list for radiotherapy. Chemo I have no idea as I hadn't even thought about it till last Friday. Am I more patient that I was 2 months ago? It's debatable. I just think I know the drill now and that me trying to push the system has absolutley no effect. So the best option you have is to wait while trying to keep anxiety as minimal as possible. We may all have different cancers, symptoms, journeys but we all have uncertainty and waiting in common. I'ts our common bond on here I think. It's the general underlying theme. I think it's more like acceptance. Not sure if my words will help you as you tackle the next few weeks but take care. June.

[Sueblue]

Thanks Eva :) Just as I had made up my mind to be patient and get on with my life for the next few weeks/months while I wait for more results and treatment, everything's changed again! I had 3 phone calls today - the haematologist wants to see me on Thursday afternoon, I have a PET scan booked in for next Tuesday morning, and the ENT surgeon rang to say that another biopsy in the same place is too risky because the tumour is very close to major facial nerves, and there is a risk that further surgery could damage them, and as the result could be the same (necrotic tissue), the benefit is not worth the risk, so I won't be having more surgery on my neck after all... The haematologist will be discussing my treatment options, given that the type of lymphoma can't be identified by biopsy. So it's all happening! Thanks for your encouragement, Sue

[Sueblue]

Thanks for your words June, they do help. I will be more patient in future. I was just concerned because initially I was an ENT patient, but then after the biopsy surgery I was referred to Haematology, but wasn't one of 'their' patients as my biopsy results weren't back - I was sort of in between the two departments and as a result I was worried I would be 'lost' in the system, if that makes sense! Anyway, I've had a few phone calls today that have put my mind at rest. I see the cancer specialist on Thursday, and am having a PET scan next Tuesday. I don't mind waiting for treatment, even if it is a few weeks/months, because I know that I am now in the system. It is true what you have said... that we may all have different cancers, symptoms and journeys but we all have uncertainty and waiting in common. Your words do help, and thank you for your understanding and taking the time to provide some reassurance. It helps knowing I'm certainly not alone in this :) Sue

[Juno888]

I am glad you are finally part of a system it would have been frightening to have felt like you were forgotton. I have felt like it at times while waiting. Heres to Thursday then Sue. We will both be a little wiser by the end of it. I'm just looking towards starting treatment. Another wait but it to will pass. Chin up and keep calm and carry on. June :~

[rbx4]

Any more news Eva?

[evaboo]

Hi Ross, Yeah all good news! I got the all clear for the cervical cancer, they got it all with surgery so I am cancer free, fabulous news, I'm blessed. Just need to get my CA125 blood tests back to confirm no ovarian cancer as the Ct scan was clear and the mass is a heamatoma. Unfortunately I've gone down with a massive pelvic infection. The GYN Wanted to admit me but he's given me some strong painkillers and antibiotics and 36 hours to improve at home. So I'm tucked up in bed being good :0) So, that's hopefully the end of the cancer journey although not the end of surgery as the ovary will probably have to come out eventually, but that's another battle for another day. How are you?