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Mum is stage 4. Bone and adrenal mets. Feeling hopeless

MissyD1 profile image
5 Replies

Hi all

We found out last week that my mums Adenocarcinoma has spread to her ribs and spine. She also has a pulmonary embolism which is just being treated now as it was previously missed on a scan. We had another oncologist appointment yesterday to organise a dose of radiotherapy to the spine as my mum has been in very severe pain. The oncologist made a comment about radiating other areas if needed and as we weren't aware of other areas I phoned the CNS this morning who told me it has also spread to her right femur and adrenal glands (we were told last week these were clear) the CNS also explained that they can radiate any areas which are painful and that my mums previous biopsy samples are being further tested as although she doesn't have the EGFR mutation she may have others. I asked about chemotherapy if there's no gene mutations and he said that could be discussed. I think they aren't keen on giving her chemotherapy as she had so many complications after surgery and wasn't fit enough for adjuvant chemotherapy and also maybe the pulmonary embolism may make her unsuitable for chemotherapy?

I feel quite frustrated and hopeless this morning. My mums prognosis has changed dramatically in the space of a few weeks and it has been a lot to take in. I feel like every week there's more bad news. I am also worried that the oncologist is going to say she's out of treatment options except for palliative radiotherapy to relieve the pain in her bones. We understand she can't be cured but are hoping and praying that there would be treatment at least to give her more time.

Has anyone else had a similar diagnosis? What were your treatment options?

Thank you in advance x

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MissyD1
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jillygirl profile image
jillygirl

Hi MissyD1, Sorry I am unable to help you. I would just like to send my love to your mum and of course yourself. Times like these can be tough. Sending postive vibes to you both. :)

MissyD1 profile image
MissyD1 in reply tojillygirl

Thanks jilly girl x

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Dear MissD1

So sorry to hear about your Mums recent diagnosis. It is understandable your frustration in that you may have not recieved the full clinical picture at the time, hopefully the radiotherapy will relieve your Mums pain. Cancer is such a difficult and unique journey for everyone, it is not just the diagnosis but what treatment options are available, the wait and not knowing what is next.

Hopefully there will be a mutation present that may allow her to have immunotherapy or targeted therapies: I have placed a link here that explains each of them -

roycastle.org/how-we-help/l...

cancerresearchuk.org/about-...

The other thing to perhaps consider (after all treatment options are discussed/completed) is accessing a clinical trial, there is a list of trials from cancer research UK, I have placed a link here: cancerresearchuk.org/about-...

Another website is the Clinical Trial Gateway UK: ukctg.nihr.ac.uk/clinical-t...

Let us know how it all goes. Thinking of you all

Kind regards

The Roy Castle Support Team

Jeanette1962 profile image
Jeanette1962

MissDi

My mum was diagnosed with lung cancer 8 weeks ago. Up to then she was a very independent lady. It is at stage 4 now and she has had 1 radiation session awaiting results from ebus. My mum has been in terrible pain with her back and shoulder over the last 2 weeks. They think it may have spread to lymph nodes but nobody seems to be telling us much. I dont like asking whilst mum is there. The main think is she is staying positive which is good, but I wish they would tell us more. You need to keep strong for your mum and try and get all the help you can. I keep reading things online which is not good, but that is the only way to fins out anything. Take care stay strong.

MissyD1 profile image
MissyD1 in reply toJeanette1962

Hi jeanette1962

Thank you for your reply! It does take so much time to get all of the tests done. I felt the same, that we weren't getting told very much. It's so frustrating!

I have stopped reading too much online as everything seemed so negative and I found it really upsetting. We are trying to just take each day at a time now. My mum also had some radiation 2 weeks ago and it really has helped the pain in her spine. The first chemotherapy session wasn't too bad either. Does your mum know any more about her treatment plan?

Sending you and your mum best wishes xx

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