Bone cancer...need to find primary

Hello Friday

Welcome to the Online Community.

I am sorry to see that you have been diagnosed with bone cancer and that they are still trying to find the primary cause. Being diagnosed with cancer is a worrying and stressful time and it is natural to feel in shock in these circumstances. I found myself that there really is no right or wrong way to feel and I went through a range of emotions- shock, worry, upset etc. I think the only thing that helped was to go with the flow and realise that it is normal to feel a bit all over the place and to reach out to others when you need to. 

It must be particularly hard to not yet know where the primary cancer is and must add to the questions that you have. I will pop some links below that may be of help.

Cancer of unknown primary (CUP) booklet | Macmillan Cancer Support

Secondary bone cancer | Macmillan Cancer Support

Have you been given anything to help with the pain? It is worth calling your team or GP if not as there will be something that could help you while they are continuing with tests. It must be hard to not be able to get comfortable. 

I hope that your biopsy is done quickly and that it brings the answers needed to decide on a treatment plan. In the meantime if there is anything else you need please do ask. If you feel talking things through with someone would help, there is a number for the Support Line at the bottom of this and you are welcome to call it and speak to someone. 

Hope this helps a bit

Jane

Thank-you so much for your reply

Yes I'm in limbo and very negative thoughts. I just need something positive I can hold on to but there isn't anything at the moment. Even if they.say not curable but treatable would be a bonus the way I.feel at the moment. The pain has been so bad I just feel that things are getting worse . 

Thanks x

When you feel up to it- have a look at the links and it will give you a bit of an idea of what treatments may be offered. Having the negative thoughts is very natural and made worse by being in pain and not knowing yet the full story. The being in limbo is not pleasant - I felt better for getting a diagnosis and knowing what treatment I would be having. Things then started to feel a bit more in control and I had something to focus on and work towards. I hope you do not have to wait too long. 

Do give your doctor a call though and try and sort some alternative pain relief. 

Jane

Hi Jane

Yes I've been on the case for more oromorph.  That will be sorted for me. Also direct contact with nurses at heath. 

I think I'm so frightened of being told that nothing can be done 

I have lost 2 husbands to cancer and its so scary

Sorry what links did you say?

Lynne 

Hi Lynne

These are the 2 links. They are in bold directly below. If you click on them it will take you to the info.

Cancer of unknown primary (CUP) booklet | Macmillan Cancer Support

Secondary bone cancer | Macmillan Cancer Support

 If you go down to about half way down on the bone cancer one it shows you several different treatments. 

What would normally happen after the biopsy is that they hold a Multi disciplinary team meeting where the doctors and other professionals get together and they look at everything and decide on the best treatments to offer- then they would normally call you in for an appointment to go through everything with you and get consent. For me and my cancer it was four weeks from first symptom to surgery. 

I hope that the oramorph helps. I am sorry that you have lost 2 husbands to cancer and it is understandable to feel frightened. 

Have they given you any idea on when the biopsy will be done? 

Jane

I think the doctor is eager to get going ASAP. They are getting images from my ct as I went privately in the end. I had so many hold ups and records being lost. It was unbelievable 

 I also have colonscopy tomorrow which I'm not looking forward to as I know it will be painful moving on bed and can't have sedation because of morphine. 

Thanks for all your help. Will look.at those links

Kind regards 

I hope that tomorrow goes as well as it can and it's good that the doctor is keen to get going as soon as possible. Let us know how you get on.

Thank-you