My first post on here, and not asking questions or looking for answers... just an outlet for me. My partner was hospitalised in Feb for sudden liver issues, then got pneumonia and on critical care unit, wasn't expected to make it. He did, but in the process of scans they found a mass on his chest. More scans, MRI, PET, Broncospcopy, and needle biopsy leading to consultant call this afternoon to confirm lung cancer with hot spot on adrenal gland. The need to do another urgent needle biopsy for molecular testing (didn't get enough tissue on the first one) and then onto urgent Oncology for treatment. We know its not curable and treatment aim is to shrink/stabilise to give him as much time as possible. Whilst being prepared for the worst (hoping for the best) it is still terrible news, the waiting awful, but in a way a relief we now have a plan of action so to speak. Without treatment told he would at best have 2/3 months, and that really shocked me, especially as he has no symptoms, and if it wasn't for his liver issues we may not have had this possible chance now of more time together. We will fight this and make the best now of every moment we have.
Partner just diagnosed... trying to k... - The Roy Castle Lu...
Partner just diagnosed... trying to keep it together
I'd say try anything. My husband didn't get
To try the new drugs that are out today.
Check & see if there are any clinical trials
anywhere. Cancer is a monster. ♥️
Hi there we are in the same situation with a stage 4 diagnosis, no cure just a management plan. I was not surprised by my husband's diagnosis as he has been such a heavy smoker all his life and I knew it would catch up with him but it's the shock and knowing that time is limited. You are right, we need to enjoy the time we have. How old is your husband?
Hello, thank you for your response and can see now we posted here almost at the same time! Like you, even with it in the back of my mind ( heavy smoking/family history etc) diagnosis is not a surprise. But it has been a massive shock at the reality and its now hitting home, how precious life is, something many may take for granted. I'm 54 and my partner is 57. We have been together 10 years. My partner lost his mum to cancer when he was only 17, so he has very dark memories of cancer. Together we are trying hard to maintain focus on one day at a time, being open and honest and talking about how we are feeling. Whilst this is so awful with what will be a heartbreaking outcome, we have talked about the need to try and be outwardly positive, to have humour, and fun, to keep ourselves out of depression, to try and maintain as normal day to day as possible....not sure if that makes sense, and wont be easy. We also understand we will cry, be distressed and inconsolable at times, and that is ok. I'm quite a practical person too and whilst we hope and pray treatment will help increase the time we have together, we feel we should get our house in order for all those things that might be more difficult/upsetting nearer the end. I guess trying to get these things out the way now so they don't have to be worried about later. Not sure if this makes sense, and may not work in reality, but its a journey we are on with limited choices, and I guess we want to take control of the things we can control, and make the best of the life we have left together. I don't know how it works, but I would be happy to keep in touch with you to help support each other.
Michelle xx
How is your partner coping with his diagnosis. Mine went to pieces this week, tears, sleeping all the time. Life has changed so much. I think all we can do is take each day as it comes. I get frustrated, angry that we are in this mess, sad and scared but I guess this is all normal in this situation. Is your partner having any treatment?
Its difficult to know how he's coping within himself internally. Outwardly though he is coping as well as can be. We have had tears, but he is trying to remain positive but realistic and at the moment is worrying more about me and his siblings. He is trying to keep the situation lighthearted and as happy/normal as possible. He has been part of the church all his life, so his faith helps him. He's trying to remain active, but has compressed discs which reduces his mobility. He is also on medications for liver issues, which I think do make him a bit drowsy, so he'll have short afternoon naps. Apart from his back pain, he says he feels quite well, which is hard to get my head around. I too have had feelings of anger and frustration, and I am terrified for the future, that our world has been turned upside down. Just need to draw strength to face what is happening as we cannot change the situation. He hasn't started treatment yet. The consultant needs him to have another biopsy urgently for molecular tests to ensure the oncologist can get him on the most appropriate treatment which we hope will happen very soon. Literally just come off the phone from a wonderful lung cancer nurse who will be our point of contact. Really helpful with lots of information and support, and thankful to now have that formal point of contact.
Hi,
I am sorry to hear about your partner's lung cancer diagnosis. You will get a lot of support from others in the forum who have similar experiences. Once all the investigations are completed the oncologist will discuss a treatment plan with you both. It's really good that you have been in contact with your partners lung cancer nurse specialist(LCNS) who can provide support for both of you in between hospital visits. She can answer any specific questions you may have.
There is also some information available on our website
roycastle.org/help-and-supp... If we can be of any help please don't hesitate to contact the helpline nurses at 0800 358 7200(option 2) from 9,00-5.00 pm Mon-Thursday & 9.00am-4.00 om Friday.
Kind regards,
All the support team at the Roy Castle helpline
Thank you for your response and links to very helpful information, and yes support here on the forum is really helpful too.
Michelle
I have incurable lung cancer too, with quite a lot of spread to my bones. I was diagnosed in March 2020, and it took 3 weeks for the molecular testing results to come back. Meanwhile I was thinking the worst, about how I would die horribly within a few months. But as with many people, the molecular tests showed my cancer cells could be slowed down with ‘targeted therapy'. I have been on it for 6 weeks now, and overall I feel a lot better physically and mentally, despite the weird side effects.
I still have days when I feel very miserable, but other days when I feel more matter of fact. It is hard to adjust to it being incurable but that you still may live many years with ongoing treatment. This is a new thing for cancer.
I hope your molecular results have good news for you too.
Hello, thank you so much for your message and sharing this with me. Whilst I understand everyone's situation is unique, it does help to hear of similar situations and hear about your feelings and experience. I'm glad to hear you have got targeted therapy and hope this successfully slows things for you. Fingers crossed we get the biopsy soon (they said it was needed urgently) so we can get over this next stage of waiting and understand what may/may not be possible. Thank you again
Michelle
Hello Kayben
I had exactly the same diagnosis over a year ago. Lung and adrenal gland tumours. I had about 6 months of chemotherapy after which the tumours were the same as at the start. I was disappointed but the oncologist said without chemo I might not have been here. I then asked for a break in treatment but after a couple of months went on to immunotherapy which also had no effect. I don't have any pain (yet) so oncologist says they will just monitor me with scans If the lung one hurts they can do radiation but he says that treatment would knock the kidney out if they tried to do it on the adrenal gland one.
Best advice - keep cheerful. Find something positive each day. Chin up. Not helped by this virus is it?
Hello, thank you for your response, sharing your situation and your advice. We are trying to stay as cheerful as we can, and whilst there have been lots of tears and fears, we are talking about fun and crazy things we've done which make us laugh. Covid situation is making it harder, but hey, the sun is out, we have a lovely garden to relax in, and the barbeque will be on later. One day at a time. Thank you again x
Hi there it has been a couple of months since I heard from you. How are you and your partner doing. We are having a right struggle. My husband is very ill and treatment options are drying up. Hope you are both bearing up under the strain.
Hello. Yes I have been a bit quiet on here recently. I’m so sorry to hear things are not going so well for your husband. It is not a simple path and no one can really predict how a person will respond to treatment. I do hope your husband and you can keep at it together x x x we are currently steady state. My partner has completed two cycles of immunotherapy. Next is due end of this month then a scan to see if it is working. We are truly thankful that so far only side effects have been some tiredness and itchy skin managed with anti histimine. We are trying to do as much as we can together within the restrictions of Covid. Church has reopened and that has been a great comfort for my partner. Again I’m so sorry for how difficult your situation is and pray it improves x x x
Good to hear from you and that you are having immunotherapy which is great news! Is your partner eating ok? We are battling on but life is very diffi cult and restricted by the oxygen
Hi sorry to hear your story but yes fight loads treatment mine in both lungs and suspect liver I’m on chemo and immunotherapy some shrinkage you will get loads support advice on this forum we are all in same boat stay strong thinkin of youx
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