Cancerous cells in bone marrow.

Hi shorty68

I'm sorry you are in this very stressful situation. I had a very similar experience and my primary cancer was eventually diagnosed as non Hodgkin's lymphoma in December 2018. If it helps at all, I had 6 months of chemotherapy and have just been told I'm in remission!

I wish you all the best and can only suggest you keep asking questions and ask your GP to take a central role in coordinating diagnosis. Best of luck and big hug

Izwhizz

Hello Shorty68, I’m sorry to hear you have what I think you’re describing as secondary bone cancer with an unknown primary at the moment. I was thinking that the best groups for you to join to get the benefit of relevant personal experiences might be the following.

https://community.macmillan.org.uk/cancer_types/bone-secondary-cancer/discussions

And https://community.macmillan.org.uk/cancer_types/unknown-primary-cancer/discussions

Just click on the links to go there and look at the discussions and perhaps copy and paste this on into introduce yourself and ask anything. You will see that others including me complete their profile so you know a bit about the experience of the people answering you, and when you are ready it’s helpful if you also do this, by clicking on your user name and editing it.

I had a few weeks as a Cancer of unknown primary  (I know others can be a rare true CUP) I had a biopsy into my largest lymph nodes and a CT scan, no primary was found on my skin or my eyes, but metastatic melanoma for me was diagnosed, the next suggested step of a endoscopy or colonoscopy didn’t go ahead as my treatment could be systemic with a targeted therapy drug that would go through the whole body but needed to be the right one for the cancer type, as the treatment showed on my first scan that things were reducing it gave more comfort to me. The search for the primary didn’t continue it was assumed that it could have been slow growing or already have been dealt with by my immune system. 

I hope you are able to look at the groups I’ve suggested, to see if they seem appropriate for you, I think people there will know how you are feeling even if they haven’t had the same tests and can sympathise with awaiting the results and waiting the start of a treatment plan.

The Macmillan support line 0808 808 0000 might also be a place to chat through how you feel. At first my cancer was thought to be lymphoma as so many lymph nodes were enlarged I assume, I was asked not to google by the hospital as it might not be that and I’m glad I didn’t as I would have looked up all the wrong things. I hope you are able to deal with the uncertainty for a bit, and that you have your own coping mechanisms to do that. If you feel research makes you feel better the information and support sections has info on emotions and coping, and cancer of unknown primary that you might want to find and read. I hope you find you way around the site just reply if I can be of any further help with the finding stuff.

Best wishes

Hi Shorty,

I am really very sorry to read about what you are facing at the moment. I just wanted to add that it may be that you have a blood cancer, as you will have cancerous cells in the bone marrow with these cancers. Please do come back when you have more information and we can hopefully point you in the right direction.

In the meantime, I am sending you loads of love,

Greg

KTatHome

Thanks for your swift response. It does help to hear from someone else who has been through similar things. I will try those other groups but until they find anything I'm stuck. Really just wanted a bit more info for my family too as I feel they need a bit of hope. Thanks so much for your advice.

Shorty 

That does help ,thank you. I will certainly become a bit more proactive too. 

Shorty