Difficult few months

Hi python it all sounds horrendous i feel for you both. Has your husband had a pet ct scan as one of the tests? Im wondering if he had a biopsy of the spine tumour which will indicate the type of cancer but as you say seems strange nothings shown up on scan. There are several primary unknowns on the forum im hoping someone can come up with some better suggestions. In the meantime big hugs coming your way its all i have to offer.

Hi and a second welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear to hear the journey you and your husband have been on.

I think a good number of folks in the Community will identify with what you both have been through with regards to the diagnosis time frame....... my one was 21 months.

We do have lots of support groups where you can talk with others on the same path. There are our Cancer specific Groups and also ones that are general Cancer experience groups.

Follow the two links above and ha e a look through the groups then you can join as many groups as you like by hitting the ‘Join the Group’ tab just under the main group name and it is worth indicating how you want to receive email notifications when someone answers your posts.

Go to the 'Start a Discussion' tab just under the main group name and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.

We do have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum  and Friends and Family Forum

You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’.section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Supportin your area or a Maggie’s Centre as these folks are amazing.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

All the very best.

Hi and another welcome to the online community

It must be very frustrating and worrying for both you and your husband knowing that he has cancer but not knowing where the primary is. There is a group here for unknown primary cancer which you might like to join as you can share experiences and get support from others with an unknown primary.

If it is established that your husband has secondary cancer in his spine then you might also like to join the secondary bone cancer group.

To join either or both of these groups just click on the links I've created and then choose 'join this group' on the pages that open. You can then introduce yourself or ask a question after selecting 'start a discussion, and join in with any existing threads by clicking on 'reply'.

I'm also tagging my friend KTatHome into this reply as she is currently being treated for melanoma with no known primary and may be able to offer you further help and advice.

Sending a supportive ((hug))

Hi , another hi from me to welcome you to the online community, I’m sorry to hear of your husband’s pain and what must seem a very long 9 weeks. I want to wish you luck for Tuesday and the next few weeks including when your husband gets his next scan results. Latchbrook tagged me into the post as I was diagnosed with metastatic melanoma with an occult primary back in 2015, and thought I’d understand how you are both feeling. 

With me the primary was not found but the biopsy into one of my affected lymph nodes is what led them to the type of cancer, with me because I was having a systemic treatment the search for the primary became academic, it did feel a bit like taking a leap of faith that the treatment could work and that one explanation as to why there was no primary was possibly because my own immune system had already dealt with it. It helped to know that was a possibility and to move forward with getting on with treatment, the oncologist told me what they were expecting from the treatment the best and worst scenario because I asked. 

You probably asked the oncologist many questions when you saw them, my medical team are happy to look into any questions I might have I either forgot to ask or didn’t think of at the time, You and your husband probably have a contact to. 

I’m wishing you lots of luck for you and your husband, and I’m sure which ever group you choose to join, you will get support from people who understand the uncertainty that you are feeling.