Hello,
Earlier this year my partner (aged: 44) become very unwell. he underwent test’s and scans to then find out late on in February/early march 2024 he had stage 4 non-cell Adenocarcinoma.
The thing that is absolutely scaring me is that when we first found out he had a 8cm tumour on his upper left lobe he was admitted into hostpital but the full prognosis was not yet clear at that point as we was still awaiting biopsy results etc.
He was hospitalised just under 2 weeks where I requested his meds to be reviewed and possibly more scans as I could see no improvement in his condition and he wasn’t himself at all. I count my lucky stars I requested this and god love our McMillan nurse as she was pretty amazing at chasing this up as a scan was done 3 hours later.
he was discharged on the Friday and was given a last minute appointment on the Monday (I think this was classed as an emergency appointment) with the consultant himself. We thought the results had come back from the biopsy.
When we arrived at the cancer clinic, we were greeted by an amazing team.
The consultant went through everything with us and told us this appointment had been made as the tumour had doubled in size in the time he was in hostpital. :’( it was already 8cm. He gave us the prognosis of stage 4 with a lifespan of 4-18months and told us it was very rare to have an appointment before the biopsy’s come back but he felt he had to act fast and start some sort of treatment asap!
He put forward 10days of radiotherapy as the tumour was growing so rapidly and aggressively he was worried another week or two would have shut off his airways. He started radiotherapy 2days after.
If you have not been through this with someone, it is a very scary situation to be in once side effects kick in. It knocks them around.
He completed his radiotherapy and was booked in roughly 2 weeks after to see the consultant, which by then had the full Results to hand. The treatment they then put forward was target treatments (osimertinib- tablet form) which has been advised this will likely only work for 9-12months improving his quality of life and if this was to stop working they would then move onto immunotherapy. I am relieved that there is alternative options as the last thing I want is to lose my partner. We have a little boy at home who is 12 and a baby on the way. We haven’t even told our son this news and not sure how or when! We are absolutely scared as he is such a little thinker and it will seriously affect him. (I will probably need support with McMillan at some point for help telling our boy) just don’t know when the right time will be. I don’t know if I’m doing right or wrong by trying to protect him as much as I can. I feel like I’m failing as a parent.
My partner is on his 7th day of taking osimertinib but we were under the impression another scan would take place a couple weeks after radiotherapy but when we got to the appointment we was just handed over the treatment and told a scan would take place 2 months into this treatment. Well my mind has just been blown and I could see the fear in my partners face when we was told this.
We have hardly slept, we are trying to keep every normal and live our best life as and when we can. But the fear of not knowing the tumour is under control is scaring me as what happens if it does close his airways will it be to late?
I don’t know, I am feeling so many emotions and feel horrible because he’s handling this better than I am and he’s the one physically going through this while I’m here falling to pieces thinking the worse.
Hi LMC123
I'm very sorry to read of all that you as a family are going through. I have stage 4 cancer myself and it's a scary place to be. I'm sure that your emotions are very up and down and pregnancy hormones will be adding to your distress.
I understand that you are both frightened and want all the answers straightaway but I think there comes a point when you need to trust the medical team. Although treatment is difficult to get through, it is good that your partner has lines of treatment available. Immunotherapy helps people live longer these days. I understand that you want to protect your son but at 12 years he is seeing that your partner is unwell and your pregnancy will start to show. It may be less confusing for him to be told what is going on at home rather than find out later as circumstances reveal themselves.
Keep in contact with your Specialist nurse as she will help and support your partner. There are other forums which will help to support you and I have linked these below
Your partner may want to make his own account and I personally recommend the forum linked below. He will find friendly support and may make him feel less alone, as a younger person with cancer.
Living with incurable cancer forum - patients only
If you need any support or advice I would think about ringing the Macmillan support line. They are excellent and will signpost you to help and support. This is the link to contact https://www.macmillan.org.uk/about-us/contact-us
I understand that a cancer diagnosis is a shock but matters should settle down a bit as your partner goes through treatment. I wish him all the best and hope for good results.
A x
I am a Macmillan volunteer.
Macmillan Support Helpline
0808 808 00 00
7 days a week between 8am -8pm
Thank you, I’m so sorry that you’re also going through this as well !
You must have an amazing support system at home 
️
These links will definitely come in handy as I have only had this account 2 days!
My partner doesn’t want no one to know although like you said it’s showing! It won’t be long before people work things out for themselves as they are already asking me questions!
his parents are elderly and he thinks if he was to tell them the extent of this disease it would kill them. That puts me in a bit of a predicament telling my 12 year old.
The only people that know the extent is his sister, who I did make him tell (if anything happened to him and I knew, I don’t think I would be forgiven) and my parents. Both live over an hour away in the opposite directions!
I keep bringing the conversation up about talking to others and telling our boy and he shuts the conversation down! Whether this is denial, I don’t know.
i think with it being new news he’s still trying to get his head around the diagnosis.
I don’t want to make him feel any worse than he already does at this point.
I do hope you get positive outcomes also! I wish I knew what to say to anyone that’s going through this horrible time.
thank you for reaching out, it really means a lot ! Xxx
Hi LMC123
Thank you for your reply. I think your partners response to his news is kind of typical of the male response, in my view because of the many posts I've read. A bit like stick my head in the sand and hope it all goes away.
My parents are elderly, in their seventies. It has taken them a while to get used to and accept my diagnosis and prognosis. My profile is on if you would like to read, just click on my username. I think if some people know and they don't and find out by accident or by your partner's appearance, it would be more shocking and hurtful. Have you got a Maggie's centre near you, they do courses and support groups. Show your partner these posts, it may help to raise his interest in the community as it will help him connect with others in the same position.
My husband is my main support and he has been great throughout. I have had counselling, I read books on cancer and I have done journalling workbooks. This course is excellent if your partner is interested further down the line Online HOPE (Help Overcome Problems Effectively) course
I hope things start to become a little easier for you soon, take care.
A x
I am a Macmillan volunteer.
Macmillan Support Helpline
0808 808 00 00
7 days a week between 8am -8pm
Hi LMC123 I am sorry to hear about your partner’s diagnoses, at such a young age as well.
It is good that he has had the radiotherapy already, and is now onto the targeted therapy. The radiation stays in your body for quite some time after the treatment has finished, and so continues to work on shrinking the tumours for some months after. This is why a scan is never carried out so soon after treatment has finished, as it will not give the true results of the radiotherapy. Most scans are at least 2 months post radiotherapy, when the radiation has finished doing its job.
My daughter was 13 years old when I was diagnosed. I was given the shocking, but incorrect information at the time, that I had 6 months to live. I don’t think I handled it very well initially, but my macmillan lung nurse arranged for my daughter to have some counselling. This might be worth considering. Also talk to his school as they were very good at supporting my daughter at that time.
I think I told her and her sisters quite early on. It was obvious how unwell I was, I had an operation, and then admitted into hospital where I stayed whilst I had my radiotherapy. My eldest was just finishing university, my middle daughter was just starting university. It was a scary time for them all. I had certainly told them the prognosis wasn’t good. That was hard and not a very pleasant memory. I think it is important to say that my youngest is now 23, and has just started counselling again. My diagnoses was a year to the day after losing my mum, so for all of us it was really hard. My eldest daughter had counselling brought on after her work during covid, but all of the underlying trauma also came out.
I am going to pop an information sheet below that you may find helpful. There is also a booklet on there you can download.
talking-to-children-and-teenagers about cancer diagnoses
I will keep everything crossed for the scan in May.
