Newly Diagnosed

Hi sorry you are here to ask this questions, but you are very welcome. I do not really have the answer, i a stage four and have three tumours in the lung, so classed as incurable, so no operation possible.

They could be doing radiotherapy, to try and shrink the tumour, in the lung and then offer surgery. they will do what is best for your partner.

Have they been given a lung nurse who you can phone every one is normally given a nurse at the start of this journey,so you can phone them to ask questions.

I have had radiotherapy and chemo. I hope others pop in to answer your question.

Take Care Ellie x

Thank you for your reply, and I am sorry to hear about your condition.

Yes, we were given access to the Lung Cancer Nurse, but it seems her only job is to email the consultant and come back with an answer. It takes time, and the answers are usually not helpful. There is no initiative on her side, and the advice given by her makes me wonder if she is a "real nurse."
It seems that our Lung Cancer Nurse is more admin staff than a nurse. We spoke to other hospitals and found their Lung Cancer Nurses much more helpful.

Hi warrior

did you speak on live chat ? I have to say, I did & the lady I spoke with was very helpful, but suggested I call one of the McMillan nurses on the helpline for more relevant advice . These nurses are very experienced & can give invaluable help & advice. Staff on live chat are not always nurses but will point you in the right direction. 
hope this has been of help, please take care & let us know how you are getting on 

Hi Indian,

Thank you for reaching out.

There is no option for live chat at the hospital. There are not even numbers for the Lung Cancer Nurse listed on their website. We were given a file with all the relevant numbers 20 days after diagnosis and only after insisting on meeting the consultant face to face. We lost valuable time (20 days) waiting for the hospital to contact us, but that is what we were told while admitted to A&E. Go home and wait for appointments! In the meantime, my partner developed excruciating pain, which we had to control through morphine prescribed by GP. She deteriorated from then on. Her left arm is frozen, and she can barely walk.
I spoke to the McMillan nurses and received valuable advice.

Best reagrds. 

W

Hi again warrior

glad you got talking to McMillan nurses & got some advice ! These nurses know their stuff. So sorry you & your & your partner have had this awful experience, but hopefully things will get a bit better for you both now. Please let us know how things are going

take care 

Hi warrior, I think when Indian mentioned the live chat, she was referring to the live chat facility here on the site. If you go to the top of the page and click ask an expert, it will take you to the expert page. There on the bottom right hand you will find a chat bubble. If you click on that you can have a chat with one of the Macmillan experts. You can also call the Macmillan support line on 0808 808 00 00 which is a free call number. They are available 7 dats a week from 8am until 8pm.

As you are not getting the correct information from the nurse at the hospital, have you spoken to your partners GP. They would have received a letter from the oncologist with the diagnoses, so he/she will be able to explain it to you. 

When does your partner start her radiotherapy? Do you know how many sessions? Radiotherapy can be very effective in shrinking tumours. I had 2 weeks of radiotherapy, and my tumour shrunk by 50%. 

If you are unhappy about the treatment your partner has received by the hospital, you can complain to the Patient advice and liaison services (PALS). You can find this on the NHS website. 

Wishing your partner all the very best with the radiotherapy.  X 

Hi Chelliesimo, 

Thank you for your reply.

I've been talking to Macmillan experts, and they have been helpful.

My partner hasn't got diagnoses, prognoses or treatments yet. We suppose to get all this information on the 18 Feb, when the secretary cancelled it "because my partner was at the hospital." The same hospital the meeting was supposed to take place. She had one-off radiotherapy to reduce the pain in her shoulders, which helped. Since then, she has had treatments for pain by morphine, but there is no treatment for cancer itself. She was discharged with follow up with Lung CNS. When called the hospital and inquired what CNS stands for it, no one knew except Macmillan nurses. As it's the weekend, no one works, including Lung CNS. It seems cancer patients do not get ill during Sat or the Sun. My partner is taken back to the hospital with an oxygen level of 84% and a heart rate of 114 this morning which is very worrying.

Just out of curiosity, can anyone please let me know how long did take to get TREATMENT from the moment you have been diagnosed with CANCER? We are in our seventh week without any treatment. Our next appointment is booked for March. ( if that doesn't get cancelled too)

Thank you!

W

Hi Warrior 

you have my thoughts in this dreadful situation 

just to answer your question 

husbands timeline

25th November CT scan

9th December saw Dr suspicions raised re cancer with feedback from scan

23rd December biopsy consultant told me it was lung cancer( over the phone)

11th January meeting with specialist ….confirmed  stage 4 

31st January saw consultant re treatment going to be immunotherapy 

8th February started his treatment

from the start 9 weeks but from biopsy confirmation 4

seems like a lifetime

hang on in there

Bess

My heart goes out to you and your family, the waiting is excruciating!!!

After a visit to doc for shortness of breath, and subsequent trip to hospital for CT scan, my husband was told he had a malignancy on his right lung, this was the 17th Dec 2021. He was diagnosed with stage 4 NSCL and secondary cancer in the pleural cavity with just 'months to live' on the 4th Jan.

My husband started immunotherapy on the 17th February. The whole process is an emotional roller-coaster, both for the cancer patient and their loved ones, the strain on mental health is immense!!!

Watching your loved one suffer in any way is so difficult, but once treatment is underway a degree of stress lifts.

Sending my very best wishes and positive thoughts

Thank you, Bess for your timeline.

My partner has been diagnosed on the 8th of Jan and she had Lung Biopsy on the 16th of Feb. We are waiting for the "big" meeting when everything will be relieved. She is at the hospital again with Pneumonia and I am worried she may not be discharged in time for a meeting.

I am surprised by the waiting time for a treatment. There is no sense of urgency.

thank you. 

W