Scared Newbie : I was poorly all over... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Scared Newbie

Rubyjean28 profile image
12 Replies

I was poorly all over November and December with a terrible cough and flu like symptoms. Contacted the Dr's numerous times x rays show pneumonia. A and e visit as in agony on right side, 2nd xray was worse antibiotics not working. CT scan the following day to be told 28th Dec I have a large mass lung cancer. Well to say my world ended is probably an unbderstatment. I have had an mri, just waiting on pet which is next Friday, biopsy Monday praying for answers by the 19th. I'm obviously really struggling to sleep, 14 hours in 5 days, I can't switch off. I have an amazing amount of love and support and I am extremely lucky. But I'm absolutely devastated. I can't be alone as I'm a worrier and overthink everything. I honestly feel like I'm just living in a nightmare. I've come here as I am wanting to speak and gain advise from people in the same situation as me xxx

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Rubyjean28
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12 Replies
Hopeful51 profile image
Hopeful51

This must be such a shock for you and my husband was in similar situation this time last year. The waiting between tests and waiting to know what stage you are and what treatment options you have will seem to go forever but that’s just the process you have to go through unfortunately. I would advise you not to look at Google but read through replies to previous posts on here and you will find much more up to date information and so many more positive and uplifting stories that will hopefully give you some hope to keep you going over next few weeks. My husband was really lucky and able to have surgery but it is important to try to switch off and get some sleep - I hope you get answers soon.

Rubyjean28 profile image
Rubyjean28 in reply to Hopeful51

Thank you xx

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear Rubyjean28

Welcome to the forum and so sorry to hear that you have been told there is a mass in your lung. This is understandably a shock for you and your loved ones and a great anxiety as to what happens next.

A biopsy is the best way to determine if it is cancer, the type and any specific biomarkers present. The PET scan will show a more detailed imaging of any abnormal tissue and scan the lymph nodes. The wait is the hardest part at this stage until all the results are in, usually within the first 1-2 weeks you will have an initial diagnosis, then it may be another 1-2 weeks to hear if there are any biomarkers. If Biomarkers are present then this may make you eligible for new treatments such as Immunotherapies or Targeted therapies.

This link will take you to our booklet on 'Managing a lung cancer diagnosis' : roycastle.org/app/uploads/2...

If lung cancer is caught early, surgery is usually offered or radiotherapy, this can be followed up with either chemotherapy, Immunotherapy or Targeted therapies.

It is only natural to overthink things until you know what is happening, we are here to support you in any way that we can.

We would advise you as Hopeful51 said not to look at Google for information, but go to the following websites where the information is accurate and up to date. roycastle.org

cancerresearchuk.org

macmillan.org.uk

Lung cancer treatments have improved over the last decade and many can be treated, hope you will hear from others in the forum that will provide support and encouragement for you.

Some people find that having as much information about the cancer eases some of the anxiety and some would rather wait and see what the specialist says. If you are looking for information, you can find our booklets on lung cancer from diagnosis, living with lung cancer and each treatment at this link: roycastle.org/help-and-supp...

We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

If there is anything you would like to discuss you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Rubyjean28 profile image
Rubyjean28 in reply to RoyCastleHelpline

Thank you much appreciated xx

Chester1967 profile image
Chester1967

Honestly the beginning is the worst. I was diagnosed on 10th December 2020, I thought thats it game over!!

I realise it's a huge shock. I didn't sleep fo weeks in the beginning. But it does get easier, once you know what you're dealing with, you will start to feel more in control.

Sending love and strength to you lovely.

I'm still here 3 years later. Stay strong 💪

Rubyjean28 profile image
Rubyjean28 in reply to Chester1967

Thank you so much xx

Sally789 profile image
Sally789

this is a fantastic site. Numerous positive stories told by people who have been successfully treated. Definitely the worst times are whilst waiting to hear, once you receive your confirmed diagnosis and treatment plan you will feel tons better.

I’m almost 6 weeks post surgery and feel so much better.

Sending lots of positive thoughts X

Rubyjean28 profile image
Rubyjean28 in reply to Sally789

Good luck and thank you xx

Hi Ruby

This is such a hard thing to take in, but treatment has changed so much for lung cancer in the last 5 years alone for the good that the statistics are so outdated. There are lots of lovely young ladies thriving with lung cancer if you head to Instagram that might give you more hope or read the patient stories on Roy castle too.

I would also recommend you speak to you GP I was given sleeping tablets and anxiety medication at the beginning. You need to have all the energy you can muster for these few weeks ahead and into treatment. Eat everything now is not the time to diet. Take long walks outside and get out of breath.

I am now 49 year old woman and i was diagnosed 28 Feb 2020 Stage 4 and currently stable, if you read the patient stories I am Kerrie.

Wishing you all the best - please keep us posted, best wishes.

Xxx

Ceibach profile image
Ceibach

I am so sorry that you have joined ....once you hear the words from oncologist ...We have a plan......things will start to full into place.It is exactly 2 years today that my lovely hubbie was diagnosed in A&E.....And his treatment has been excellent.stage 4 palliative.....but since diagnosis he has lots treatment.we are going away in 2 weeks!!!......please don't Google and stick to this site and phone the amazing help line .Good luck

Rubyjean28 profile image
Rubyjean28 in reply to Ceibach

Thank you appreciate your comment. Enjoy your break xx

Hi Ruby. So much empathy with you. I was ill all Nov and December I thought with something else totally. They only picked my cancer due to a scan I had been waiting for a year. The wait is the hardest. I got through by concentrating on the things I had control over, finances, other health issues. Use the Macmillian nurse. They don't mind and they do know and can help. I am now 5 days post op. Your attitudes will change and change again. As long as they all point to a future you will be fine.

Hope your journey is a positive one.

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