Newly Diagnosed

[Mindini1964]

Hello every one, I've had a terrible 3 or 4 months. My sister was diagnosed with lung cancer in August and unfortunately died in September aged 61.I was heartbroken and was suffering with a very hoarse voice. My doctor sent me for an xray which showed a shadow on my lung. I have since had a pet scan, lung biopsy which has returned cancer but not its type. I had major surgery in my mouth in 2002 which was adenoid cystic carcinoma. My consultant thinks it has returned to both lung 22 years later, I'm petrified. I've an appointment on 1/12 for full results and what happens next. I'm 59 x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Mindini1964

So sorry to hear of the loss of your sister and your own cancer journey. This must be understandably distressing for you and your loved ones.

It is a very difficult and stressful time waiting for answers from the biopsy, however, the duration of wait is to determine if you have any cell mutations/proteins that may be present which may provide some treatment options for you (Immunotherapy or Targeted Therapies)

This must be all overwhelming for you, given the recent loss of your sister to lung cancer and please know that we are here to support you in any way that we can.

I have placed some links below on our information booklets on both diagnosis of lung cancer and biomarkers from the biopsy.

roycastle.org/app/uploads/2...

roycastle.org/app/uploads/2...

If you are looking anything up online, we would advise that you keep to the following websites, that provide accurate and up to date information:

roycastle.org

cancerresearchuk.org

macmillan.org.uk

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... alternatively you can email [e-mail]

You are welcome to contact our helpline nurse either by email at [e-mail] 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

[Mindini1964 in reply to RoyCastleHelpline]

Had my clinic appointment today, told I've got to have another biopsy as there is still no answer to which type of cancer I have. My biopsy was so traumatic that I have opted for a tube biopsy but its only 50/50 whether it can be obtained this way. I will have to have the guided ct again if not.I'm told surgery us not an option so systemic treatments will be offered when diagnoses is eventually given. If metastatic Acc then I will be refered back to the head & neck clinic. My lungs are just housing the cancer!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to Mindini1964]

So sorry to hear of your difficult wait for another biopsy and answers, especially given your recent biopsy experience. This must understandably be adding to your anxiety, it is such a challenge to wait for investigations, the results and a painful emotional rollercoaster, both for you and your loved ones. I hope you find support and some encouragement within the forum.

You are welcome to call ask the nurse on 0800 358 7200 Monday to Thursday 0900-1600 and Friday 0900-1700, alternatively you can email us at [e-mail]

Hope you have answers soon with a treatment plan.

Kindest regards

The Roy Castle Support Team

[sassassas]

Hi Mindini1964

I'm so sorry to read your post. it sounds like your sister had a very brutal experience and it must be a particularly difficult time for you. I hope you get some good treatment plans when you meet your consultant this week.

Sarah x

[JanetteR57]

I so empathise with your situation - my older sister died suddenly and unexpectedly last year (66) from an undiagnosed heart condition and hypertension - she'd spent years with chronic brittle asthma and lymphodoema and was being seen for both conditions for years in the community. She'd complained of worsening symptoms throughout the previous 12 months but as GP appointments hard to come by and both nurses told her to increase inhalers and wear compression stockings we were so shocked by her death which caused her to have a heart attack at the top of the stairs, fall and break her neck only to be found my dad (92) the next day. It took us weeks to learn the course of death as coroner was delayed due to bank holidays including Queen's funeral.... when I had a raft of chest infections earlier this year that didn't respond to medication (and my lung cancer diagnosis was in January 2011) and I'm now only a year older than my sister was and the GP said he thought the chest x-ray I'd had in February showed I had heart failure, I was extremely anxious. I've just had yet another infection that hospitalised me for almost 3 weeks and was very scary - not helped by what happened to my sister and me thinking about it. Although sad and shocking what happened to yours (and mine), it is possible to have different conditions or types of cancer and at the moment, you're still being investigated. It might be your original cancer returned although when my dad had another bowel cancer in 2016 aged 86, his consultant said it was highly unlikely linked to the previous 2 primary bowel cancers he'd had in his 50s as it was too long (27 years) for cells to regenerate and classed it as a new primary.

I was 52 when I was diagnosed with lung cancer and my dad was in his late 50s when diagnosed with his bowel cancer - he'll be 94 in February. Although our heads race off into some doom scenario understandably - there are treatments for many types of cancers including lung cancer and head and neck cancers. Systemic anti cancer treatments can take many forms including chemotherapy, radiotherapy, immunotherapy and targeted treatments - some taken as oral treatments and others infused (via drip). At the moment, until they have results from your scope, it's not worth getting too worried - easier said than done) about what you might have until they have more information.

As I was waiting for results/diagnosis at this time of year back in 2010, I found keeping busy helped me - writing Xmas cards, attending Xmas events to distract myself - whether films, meals, carol services - anything to keep my mind off it - and fill my time, wrapping xmas presents, decorating the xmas tree, baking etc... I've used that tactic any time since when I've had to wait for results and it helps me.... good luck with the investigations and hope you get some answers and reassurance soon.

[Mindini1964 in reply to JanetteR57]

Thank you so much got your replies, you sound like you've had a terrible time. Life is so hard and unfair sometimes. But probably makes us stronger people.I will busy myself as you say, I work as a teaching assistant in a junior school and they have all been brilliant. I've been off since 6th November and not returning 4 some time as so many germs in a school.

I've had my cancer for some time I'm told but have already recovered from covid 3 times so hopefully I'll come out the otherside for some time yet. Xx

[JanetteR57]

fingers crossed for a brighter future - and hope you get some more answers soon.