Stage 4 diagnosis what next ?

Hi Bella

I am so sorry to hear that the appointment did not go as expected. I understand that you are both feeling shocked and tearful to hear the news and that it is difficult to cope with at the moment. 

I hope that the referral to oncology goes through very quickly and that some form of treatment plan can be put in place. Although cancer that has spread is more challenging to deal with- it does not necessarily mean that treatment can not be done that can control the cancer for some time and/or relieve any symptoms. 

Treatments that could be offered are chemo, targeted therapies, immunotherapy. Treatment options will be individual to your husbands cancer and previous treatments so will be tailored to him and also what he wants. 

Perhaps give the Support Line a call and talk things through with one of the nurses. You are naturally upset and shocked at the moment so maybe talking to someone who is not directly involved first would help get your thoughts in some sort of order? They would also be able to give some advice on how and when to talk to your family. 

Telling family has to be a personal decision and with my own cancer I found that when I told people they often had a lot of questions. I told the people closest to me early on but others I waited until I had an idea of treatment and what may happen. I did however have to take a while to process the news myself. When I did speak about it, I told them in stages. So things like " I had an appointment. It wasn't good news. They think its cancer. I don't know yet what is going to happen but when I do I will tell you" I also said to others when I did not want to talk about it. 

The Support Line will also be able to have a look for you to see if there is any support close to you. Many people find Maggies Centres really helpful. 

I am sorry that you are both dealing with this news. I hope the oncology appointment comes through quickly. In the meantime we are here when you need us. 

Jane

Hi Bella12 

We’ve spoken before when your husband was facing his op, and I can’t tell you how sorry I am to see the position you find yourselves in now after all he’s already been through. What a blow this must have been.

I hope you don’t have too long to wait for a new plan and that it can help keep things at bay longer. It’s the news we all dread, especially after this surgery, so although I’m not in the same situation, I can appreciate your pain. 

Sarah xx

Hi Bella, so sorry to hearcyou are treading this awful path.

I remember the day we had similar news about my husbands cancer. He was given 12 to 18 months, sadly he got 12 months and 2 weeks.  The bottom fell out of our world then. It takes time to process. I cried a lot. People kept telling me that data is only an average and he always believed he would be an outlayer, especially as had no symptoms, but it was not to be.

We decided to be up front with the kids and grandkids, the youngest of which was 15 at the time. Age determines a lot I think. His 2 daughters reacted completely differently, but it was important to both of us to be upfront. We said it as it was. In fact, he couldn't so it was me that told them. I left it to them to decide what to say to their own children. I think it went something like this. I'm paraphrasing a bit.

"We saw the surgeon today, he had the results of dads scan. Although the surgery caught the main tumour ( sarcoma in his case), it has spread to his lungs and there are several small tumours there. Its a very aggressive cancer. He asked if we wanted to know how long he had, we said yes. Do you want to know ( they both said yes), he said 12 to 18 months, some chemo may give him longer."

But it is a personal decision, you know your family best and whether they would want to know. I could not cope with the who we've said what to so it was all open and honest. 

I wish you well as you process all this, keep talking, find support if you can, our hospice were great. And its OK to cry...a lot!

We made what we suspected would be his last Christmas just full of fun and laughter, even though it was tinged with sadness. 

 Malengwa 

Thank you so much for your reply. I’m so sorry about your husband. Life can be so unfair!. I really want to be as honest as I can. Although he wants to wait until he’s seen the oncologist. It’s so hard. I really want to tell my daughter & son  (I have 1 son & 1 daughter he has 2 daughters  both from previous marriages although we have been together for 21 years )  As I need their support to get through this. 

Im so scared at the moment not knowing what the future holds.

Thank you again xxx 

Bx 

I had to sort of persuade my husband to ket me tell people vecause I needed the support. I needed time off work, I needed people to understand why I wasnt on my A game. I could only do that if people knew. He always played it all down, which was hard at times. But he needed to remain positive even though I always sensed it was bleak.

It is scary, not knowing, watching them go downhill, thinking about a future without them, so the sooner you can reach out, the more you can be supported, so I hope you get this soon and your oncology appt. X