New diagnosis, confused please help

Good Afternoon Elizabeth (Elizabeth97)  

A warm welcome to the Macmillan Online community, I am Brian one of the Community Champions here on the Community and I am so sorry to find you here.

I can fully understand your feelings and the worry waiting for a formal diagnosis - I have to say I do have a different cancer (Prostate Cancer) and mine was confirmed by my GP about 3 weeks before the formal MDT meeting and the results of my biopsy.

The Community is divided into various groups or forums which are cancer specific and to connect with people on the same or similar journey as mum I would advise you to join the Lung cancer group and here's the link you need:

 Lung cancer forum 

Once the page opens up click on "join" on the black banner at the bottom of the page. Once you have joined the group you can either repost or copy and paste your original post in the "New Here - Say Hello" section where it will be seen by other Community members. 

There is also our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) if you wish to talk to someone about mum's illness.

I hope the above helps - if I can do anything else for you please do let me know.

Best wishes - Brian.

Hi. 

Sorry to hear you're going through similar to my husband. Has not been unwell,, no cough, no blood, no weightloss, Just his routine yearly check up & an x ray included, that was on the 21st Jan....which is when we entered hell....a lung lesion spotted, ct with dye a pet scan & lung function test.

His is 5cms lower right lung & an inflamed lymph node. Yesterday we were told was appointment for results. He walked in room one doctor no cancer nurse & was told sorry no results back yet, but its cancer.

He packed a bag & as gone off in total shock & terror.

I'm getting a call on Tuesday 18th with pet scan results.

I also thought cancer couldnt be officially diagnosed until all scans & biopsys done.

But this is where we are, hes gone off to a hotel as hes absolutely terrified & thinks hes life is over & I'm sat alone at home waiting for the call on the 18th Feb. 

I really feel for you & your Mum, as it is a living hell....I wish you all the best x

Hi Elizabeth97 and Tillyboo,

Firstly, I am sending you support and kind thoughts. This is a very difficult time for both of you.

Everyone on this forum says that this waiting period is so difficult. I agree and these past few weeks have been challenging and you feel that your life is unravelling. 

I am not sure if there is a specific protocol regarding saying definitively that it is cancerous. In my friend's case, she was told immediately during a colonoscopy. In my case, I was told that a suspicious area within my colon needed investigation. An urgent biopsy and a CAT scan followed. That was only a few weeks ago. 

My family are worrying along with me as we wait for the results. I found out today that my results are in and will be looked at tomorrow. Every narrative has passed through my mind but so grateful for this forum that has got me through these past few weeks.

Tillyboo, I am hoping that once your husband has some time to absorb the news, he will get his complete results and a plan to go forward. 

Elizabeth97, just to say hang on in there. Hoping that after talking to the experts, you are offered a treatment plan if it is a positive diagnosis.

Reach out.  You will find support and kindness here. I know I have. x

Hey Iona f

can I ask how you managed to hear they are back in to be looked at tomorrow?

I finally had an email reply tuesday saying along the lines of “histology report still not authorised for release from lab. Once it is they send the office the copy for mo colorectal surgeon to review & advise on further management” 

The reports I left with that day have confused everyone- even my gp said badly written but yes still under the cancer  pathway currently. However likely something else like IBD. 

I have been concerned as colonoscopy stated challenging procedure where sigmoid loop could not be reduced but well tolerated. with t1 intubation not possible with sigmoid & gamma loop & patient on front. These correlate with the samples coming from transverse colon sent off- I think. 
no one ever mentioned anything about continued cancer worries! .

will be thinking of you with results tomorrow!

C Xx

Hi Country _Bumpkin,

Not sure of the protocol in your area. I am in Scotland. I was told immediately after the colonoscopy that I would be assigned a specialist colorectal nurse. I assume that was to give me a link to the testing process. 

She told me that my CAT scan would be arranged whilst the biopsy was being looked at. I had that quite promptly. I was then told that my results were in last Thursday and the MDT would review them the next day. On Friday afternoon,, she phoned with an appointment tomorrow with the lead colorectal surgeon at my local hospital.

I haven't seen anything on paper yet but I am assuming that it is a cancer diagnosis. 

Tomorrow is 3 weeks to the day that I went for the colonoscopy. 

I  am hoping that treatment/ surgery is offered to me. 

I am hanging on with love and support from my family but it has been hard watching them worry for me. 

Sending love and support to you and I hope that it is good news. Keep in touch. Take care. X

I'm sorry to hear your bad news,I'm in the the boat,I had a chest infection and went for a x-ray and the GP sent me for a CT scan.i didn't have a clue I had anything wrong and got a text last Thursday to book a appointment.when got there was two GP in the room and then I thought what's going on .I was told I had lung cancer.I am so shocked,I am so mixed up inside and frightened and feel totally underwhelmed,it's difficult to get my head round the news since I had no signs before.

Hi Jodielou,

Sending you love and support. Suddenly you are on this journey and it is like a surreal world. Remember to reach out for comfort on this forum. People  will give you strength to go forward. 

I am a few hours away from my consultation and I am praying that I can face whatever is ahead. 

Take care. X

Hi

Sorry to hear your news. My husband just had a routine x ray, he wasnt ill, just all part of his yearly review.

X ray showed a lung lesion there was a free slot so ct scan. Next thing a call from the cancer hub 2 wk pathway to book a pet scan. He went for results last week, just him & a doctor who said pet scan not back, but its looking like cancer. Doctor had to ring me as he went into a meltdown.

We literally had no idea & thought it was all pre caution. I always thought cancer was confirmed by biopsy & if positive support at results.

He came home packed a bag & as gone off in shock terror, I dont know. 

I'm getting a call tomoz with results as they gave him the wrong date when he left the clinic, so he doesnt even know this.

I've not been outside since Weds, I cant sleep & feel sick. So I hate to think how hes feeling.

Doctors seem to talk about/diagnose cancer like its the flu, with literally no understanding of the impact it will have on the patient.

Why they didnt just cancel results appointment & rebook I dont know. 

Lifes just gone now....nothing will ever be the same.

Good Morning Jodielou 

I am so sorry to read your news of your diagnosis. As the Community is divided up into cancer specific groups or chat rooms can I suggest you join the Lung Cancer Group where you can chat to Community Members on the same or similar journey. Her's the link you need:

Lung cancer forum 

When the page opens up just click on "join" on the black banner at the bottom of the page. Once you have joined the group why not introduce yourself in the "New Here - Say Hello" section. I am sure you will have plenty of replies.

If I can do anything for you please do let me know.

Best wishes - Brian.

Wishing you all the luck in the world. Ask many many questions- hopefully you have a list pre prepared. Record everything said people say it’s overwhelming so much info in a short space of time & hopefully you aren’t alone?

meant to be at kings for neurophysiology but am not well enough to be getting there alone but they’ve said given treatment could start when they tell us more at the drop of a hat- I should still attend.

so am also worrying about this with social anxiety London is hard anyway but now so weak it’s really not an option unless by car!

alots been going on ever since long Covid diagnosed but it’s been slow to put the pieces together as such! 

thinking of you *hugs*
love C Xx