Friend's Mum recently diagnosed, so much confusion and not much support

A dear friend of mine mum recently diagnosed and I am concerned as she is that there has been so support for her mum or her with regards to the shocking news of cancer of her right lung, a spot on her liver and her lymph. I find this shocking. The consultants just want to take biopsies and do PET scans but on trying to take a biopsy of her lung they couldn't and they just caused a lot of pain and blood and now continued suffering. I have a few questions a) why is she not being offered any emotional support? b) is this normal to cause the tumours to bleed and could this have done some damage? c) What other scans can be used? (CT showed the cancer and we are unsure why they need to do a PET - which by the way was not done because it works with glucose and we know cancer feeds on sugar, why not an MRI for instance? Finally, she has had terrible pain in her right side of her head and is convinced the cancer is in the brain, yet no one is taking her seriously. There seems to be a lack of communication, care or urgency and when pushed doctors told the daughter they thought a case of months not years, which considering they are yet to determine stage or full extent seems really negative and not helpful. She is under local hospital but at the moment doesn't even have a consultant or anyone contact per se with a meeting on 8th May. Daughter told me she's been slurring a little and I know from experience of friends many people can have strokes associated with cancer. I am a cancer patient myself and I have advised she get in touch with a top London cancer hospital as for me local ones here in Surrey are awful and the care is 2nd class. Any advice greatly appreciated, sorry for the essay. Thanks, Louise x

[jillygirl]

Sorry cant help as such, however may be get in touch with the Roy Castle Lung foundation

their number is at the right of the page. Go to the top of the page and next to followers it says (about.) click on the word (about) and the phone number is on that page. I feel sure they will advise.

[Jomc1970]

Hi.

My mum was diagnosed 4 weeks ago and i too felt issolated. Everything was a battle; trying to get the benefits such as attendance allowance, speaking to consultants, appropriate care package etc. So much so, that i had a complete meltdown outside the macmillan support centre in the hospital ( i went n they were closed for lunch n it tipped me over the edge)

There is support out there though. We now have a lung specialist nurse, a named macmillan nurse, a social worker and the care coordinator at the gp.

Has she spoken to her mums gp? We are also in the process of getting power of attorney in place but because this is an 8 week process, are meeting with the bank to sort 3rd partt access ( mum is too ill to go with us so will bring forms home for her to sign)

I do feel however that the medical profession do not give relatives enough information. My mum was rushed into hospital with high calcium levels and was put on a drip to rectify this. No one has explained why this happened, is it a sign things are getting worse or if she will need follow up tests etc. This led me to use good old google and frighten myself to death and yet another sleepless night.

I carry round with me a little notebook now which i write everything related to mum in. Lots of different professionals ask me for info such as whats her national insurance number, medication list, hospital admissions, when did u apply for aa etc etc. It helps me keep track!

Best wishes

Jo x

[MH1954]

Hi

Sorry to hear that your friends Mum has had this diagnosis

These first few weeks while having so many different tests done can be the most scariest time as everything seems to take forever and it's a waiting game until the the hospital team have all the results in

As for your questions I can only give you my experience in what took place from my diagnosis also each individual hospital trust may work differently

I had a CT scan first this was followed by a pet scan, personally, I would definitely recommend this friend to have this done as the radioactive dye which is injected before you have the scan will highlight in colour all the hotspots which may indicate further cancerous cells and it gives a lot of further information

Was it your friends decision not to have this because of the sugar risk as the dose they give you is very low and not harmful

Re biopsy, this is to find out what type of cancer it is

There are different ways of obtaining a biopsy , I was first sent for a bronscophy where they put a small camera down the throat to take a sample of the tumour unfortunately I could not tolerate this so it was stopped, the other way is a ct guided wire scan where they go in to the area near the tumour guided by CT scan and take samples that way but as my lung tumour was to close to my windpipe it was considered to dangerous so I had mine done through a secondary tumour

I can't comment on the problems this friend had with her biopsy as only her consultant can explain this

As for getting support this is usually put in place once all test results are in and then the team can decide on a treatment plan

At this stage you should be offered access to a lung specialist nurse who you can contact with any concerns or questions

In my case my GP also put in place a package of support which includes access to the district nurses team and the palliative care nurses which I can phone at any time, plus they will offer emotional support as well, ask your friend to speak with her GP to see if they can help

You mention an appointment on the 8th may is this to see the consultant at the hospital, if so your friend will able to ask all her questions and hopefully get some answers

Hope this information on my experience helps in a small way

Margaret

[Julesgettingthere]

Hi there, Jules here.

So sorry to hear that - my mum was diagnosed a few weeks back.

We are finding its the 'Cancer Nurse' (we met at the hospital) and our GP that are the team helping us 'in between' meetings with the consultant.

Just wanted to let you know no are not alone - this forum is a great place if you need help and if the kind people dont know the answer - the people who run the forum will almost certainly find out for you.

I expected help to be obvious when i got the shocking news - it wasnt. But is sufficient now.

Much much luck

Jules

x

[LorraineD Partner Roy Castle]

Dear Surreygirl 74

Welcome to the forum and so sorry to hear of your friend's Mum diagnosis, it is such a difficult time for everyone and it is so important to have both the clinical and emotional support to assist you all on this journey. I have placed a few answers below to your questions:

It is so important to be heard ,especially when it comes to any pain that the person is experiencing, is the GP/Consultant aware of the pain in the head?; with your friends Mum slurring, it would be good to take her direct to accident and emergency and have a full assessment done. Sometimes the not knowing is worse, and it would be good to start having a clear picture of things and what treatment options there are.

Your friends Mum can request to see a lung cancer specialist nurse, there is one in Surrey (Helen Andrews on 01276 604515 ext 4515) You can either call her directly to be referred or through your GP.

At The Royal Marsden Hopsital, there is a Maggies centre- this is a great resource providing practical, emotional and social support, their number is 0300 123 1801

The Macmillan nurses have a helpline number on 0808 808 0000

It can be difficult to obtain a lung biopsy , if it is in awkward position, if any damage was done it would have been acted upon at the time. But something that could be discussed at the appointment in May.

An MRI is not good at taking images of the body that move, i.e. the lungs moving with each breath. CT and PET scan are usually the scan of choice. This link explains each test fully cancer.net/cancer-types/lun...

At the appointment in May, it would be useful to write all the questions down and have perhaps an extra person there, who can listen to everything that is being said.

We have lots of information on our website at roycastle.org

If you wish to discuss anything you can call us on our free nurse led helpline number on

0800 358 7200

Kind regards

The Roy Castle Support Team

[Benjy2018]

Hi I agree there is absolutely no aftercare. After my lobectomy as long as I could walk the ward I could go. After 18 months of research and self advocacy I now am under the care of one of The London hospitals. I wish you well.