New Diagnosis - Secondary bone cancer. How to stay positive when terrified?

Hello polgarath 

I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't give you a full answer myself as I have a different cancer but by me replying your post will be "bumped up" to the top of the group and I hope seen an replied to by other members of the group. 

I do hope your meeting with your consultant went well and you now have a treatment plan going forward.

As to employment, you are protected by legislation so you do need to inform your employer of your diagnosis.. For more advice on this if you contact the Support Line on 0808 808 00 00 (between 9am and 5pm Monday to Friday) you can speak to an employment specialist. Citizens Advice can also give you advice on this subject too.

Best wishes - Brian. 

Hi, mine started with Thyroid cancer and spread to the bones in roughly the same places you have it now. Am now a member of a club that I didn't think I would ever be in ..Stage 4 terminal club. Been suffering with this for over a year now and even though I still have my moments with it descends into tears (56 year old man..not a pretty site) you have to live one day at a time and try and do something that you like each day. 

Good luck and all the best

You can't keep positive all the time. Cancer is awful. And it brings with it a lot of challenges. And terrible pain. 

Not really the kind of positive response I was looking for...... 

Good Morning polgarath 

I fully agree with your sentiments - the Community is a peer to peer SUPPORT forum.

polgarath said:

Not really the kind of positive response I was looking for..

I know how you feel - we all get bad news - I have had a negative test result this morning - but I need to stay strong for my family - so I do keep them in the loop.

You did say in your original post you were looking to having a treatment plan, so I hope that's sorted now. 

I don't know if you have a "Maggie's" near you - this is a cancer drop in centre where you can all in have a brew and a chat - here's a link - "Maggie's" Don't forget our Support line on 0808 808 00 00 (8am to 8pm 7 days a week) can offer plenty of support too.

We have another group you may like to join and here's the link:

Emotional support forum 

I do wish you the best with your cancer journey - if I can do anything else for you please do let me know.

Best wishes - Brian.

Hi Millibob 

I live in Edinburgh so I am lucky to be getting treated at the Western Geneal hospital which also has a Maggies Centre. I visited it often when I had my primary cancer and the support I received from them and others who visited was invaluable.  I even attended a make up class which helped with hair loss and showed us how to apply our make up (plus we were all given a lot of free goodies).

Just had the results of my bone biopsy that confirmed it is seconday breast cancer and as my original cancer was ER+ stage 1 grade 1 (it has also spread to 6 lymph nodes) this is the best outcome I could get apart from obviously not having it all as according to my consultant this is the most treatable.  Of course this is all dependant on how long the mets have been forming but as it was an incidental find I remain hopeful and positive.  

Just waiting now for the breast team to get in contact with me as to what the treatment may look like.  I know it is not curable but I know I will be in capable hands.... 

Had a whole spine mri scan yesterday to see just what's going on with my bones /tumours. Didn't help my arthritis in my knees when the cold air blower went over them for the entire time. Now comes the stress of waiting for the result. I say a little prayer each night and will include everyone on here now. All the very best to everyone and keep fighting.

Hello polgarath 

I live in Lancashire but I am up in Edinburgh for a week in August to see the Military Tattoo and do a bit of sightseeing - you are so lucky to live in a great city with so much history.

I wish you well with your treatment plan and hope everything goes well for you. Your post does sound positive and if I can do anything for you please don't hesitate to contact me. We don't have a Community Champion for this group so I just pop in from time to time - bone cancer isn't my specialist subject!

Best wishes - Brian.

Hi Polgarth, I was diagnosed last June de novo, i was having serious pain in my back which I was told was mets in my spine and my primary was breast cancer, I had no idea that I had anything serious wrong with me it was such an awful shock’ not to mention I was told over the phone at 6pm randomly by a GP and then had no where to turn because it was too late

moving forward 9 months on, I am on tablets, one is an oestrogen as my cancer was ER positive, one is Abemaciclib and I have a monthly bone strengthening injection, I feel really well most of the time except for getting tired and a bit achy if I do too much but I am 61 and I think that probably goes with the territory anyway.

it took a while for me to get my head around everything and i still have my moments but all in all I can’t complain, I’ve had 2 scans that have been stable with some shrinkage in the spine and the last scan was stable which I am happy with 

I was so supported by my work, I returned in December and have juggled my hours to make it work for me, I’m sure if you speak to your manager they will be the same especially working with the elderly they have to be compassionate.

 
please stay positive they say this is like having a chronic disease, we still have a chance to live a good life and non of us know how long we have, I sometimes think I am lucky in as much as I haven’t been told I’ve only got months, when you hear of people who are diagnosed with MND or dementia etc at least we can still enjoy life and look forward 

please stay strong we are all here for you I know that once you have your treatment plan things will start to look better xx

Hi Whattodo (fab username)

The prognosis was a shock to me as I have no symptoms or pain (I am 62) they only found the mets as I have damage in my left lung due to radiotherapy last time round and they only found that as I have severe asthma and kept getting chest infections and had to take large amounts of steroids. So my GP referred me for a CT scan and I was diagnosed as having a folded lung that doesn't require medical intervention they just keep an eye on it.  I was lucky enough to qualify for the new biologic medication which is a miracle as my asthma has not bothrered me in months.

So if it wasn't for my asthma not being controlled none of these things would have ever been discovered until much later stages and the outcome would have looked a lot different.  

You are right I am grateful that I don't have a debiltating disease that could dramatically alter my life and things can on as much as they can all things considered. 

The shock has subsided and I remain positve and confident about the future.  The hospital I will be treated at is a training hospital and the breast unit is classed as one of the best in the world, so I am in good hands.