Breathing difficulties

we have very recently discovered my grandmother of 73 has secondary mets to the lung and lymph nodes. although the medical practitioners have been aware of this for some months, there appears to have been some breakdown in communication and we were only advised in a 10 min interview with oncologist that she had a terminal illlness.

in the meantime i have been googling like crazy to fill in the gaps!

the main problems is her breathing which is terrible and sounds quite chesty, it stops her sleeping and is horrible to watch her go through.

i am confused as to what is the best thing to do. we went to her GP who advised only a speiclist can help, and had nothing more to add, we went to the cancer nurses who told us to chase to GP to arrange an xray, we are now in the process of changing GP and and hoping the care gets better from here on.

is there any advice out there for the breathing, who should we be approaching for help, how did any of you guys cope with this, does it get better.

thank you

and sorry for the length of this email, first post an all!

Bump

I am really sorry to hear what you are all going through. I have no experience which could help you but want to pass on my love and bump your post up in the hope someone who can help you comes on the forum soon
xxx

Hi t_ruby

I am sorry to read of your Gradmother’s diagnosis. As well as the support you receive from the other forum users you may find it helpful to read the BCC fact sheet on secondary breast cancer in the lung, it describes what it is, what the symptoms are and the treatments used. If you would like a copy just follow this link:-

breastcancercare.org.uk/healthcare-professionals/publications/quick-order-list/*/changeTemplate/PublicationDisplay/publicationId/10/

I hope this helps.

Best wishes
Sam, BCC Facilitator

thanks everyone for your support and advice,

its really nice to finally speak to people who have some experience/knowledge of this

we have an appointment with the oncologist this week so will be very stubborn and insist something is done! atleast to find out causes etc, doesnt seem fair to have someone living with this kind of breathlessness. Also i believe he has already ruled on radiology,is this normal?

will feedback anything of use

thank you again and hope you are all doing fine and good!

Dear t_ruby
I do you hope you are getting some help for your Grandma. If you are worried get in touch with the oncology team at the hospital again and ask them for help. If they are not offering treatment - therapeutic or palliative treatment - that is very very strange. The oncology dept can arrange for lots of support either through their own palliative care consultant or in liaison with your Grandma’s local hospice. Your GP could have done this too but if he/she is not helping it doesn’t matter. The hospital will have a special team that can arrange things with your district nursing service such as oxygen at home and hospice at home. If all else fails ring the hospice and cry done the phone and they will sort it all out for you.

lots of best wishes and do let us know how she is getting on.
Fi x

Hi can I just add that my mum had pulmonary fibrosis which is not cancer but is a terminal illness where the lungs become more and more damaged and depend upon oxygen therapy. My mum had an oxygen machine in the house, which makes artificial oxygen) not those big old oxygen tanks, and this was regulated by a nurse seeing how much oxygen was in mums system by blood tests and then the correct amount administered through machine. This made a big difference to my mums quality of life as she was able to walk for a further 12 months after she was confined to a wheelchair through lack of oxygen. Also made her general everyday life more tolerable.

I know they use these machines for cancer patients too as I remember one of the girls at the hospice having one. For some reason Gps, nurses etc dont seem very well gened up on this treatment but if your mum is under a Macmillan Nurse Im surprised they havent mentioned it to you. Although its only because I knew about the treatment and actually asked for it that mum then had an oxygen machine installed at the hospice for her to use on day care. You dont have to pay for it, its supplied through a company via a prescription from your doctor.

Just a thought but anything to relieve discomfort helps,

best of luck Ann B xx

so it’s been quite a hectic few days. My Grandmothers breathing was very shallow friday night and so we called an ambulance. she was rushed to hospital and has been admitted with pneumonia. hopefully will be discharged on monday.

its quite a surprise it took for her to be rushed to hospital for this to be picked up, especially as we saw the oncologist earlier on Friday.

it seems like a constant battle really, and i absolutely admire the strength off all you woman who live with this, reading your comments help to fire up the motivation to continue

anyway i thought i would feedback for anyone suffering similar symptoms…trust your gut instinct, go to your GP and dont bleeding stop until someone does something for you!

hope your all doing good