Very worried daughter

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Hi everyone, I’m not sure I’m in the right place but I don’t really know where else do go or who to speak to. My dad found a rock hard lump (thumb sized) on his lower back at the beginning of January. After seeing the GP he was advised to wait a month to see if it went away. GP didn’t seem overly concerned as he didn’t think it was attached to the bone. After a month was over my dad asked for a scan and was eventually sent for a CT scan a few weeks back. The first scan couldn’t find anything so they marked the area with a pen and repeated the CT scan and they were happy. Within a week of the CT scan he was sent for some blood tests. He was called into the GP yesterday and said the tests were suggestive of cancer. He is now in line for a bone density scan and an MRI in the next few weeks. I feel like my whole world has collapsed. He has no other symptoms except this lump and the pain caused by it. I have read online that primary bone cancer is extremely rare and so it’s likely secondary and has spread from elsewhere in the body which is usually incurable. I don’t understand how this could have happened when he had no other symptoms previous to this. I’m terrified and I don’t know how to support him or my family as I’m so worried. The waiting list for the further testing seems so long and I’m terrified of it getting worse between now and then. I was just hoping for some advise on the situation as I’m really struggling to come to terms with the fact I may lose my dad. I know nothing is set in stone yet and we have to wait for further testing to determine exactly what the cancer is and where it is but I just can’t help but imagine the worst. Is it possible that this could have just been caught early and is only a small tumour in his hip or is it more than likely secondary and very hard to cure? I realise these are questions that are very hard to answer I just don’t know who else to ask right now without worrying the rest of my family. I’m upset that the GP didn’t send him straight away after his first appointment. If anyone has any similar experiences and can help with how to deal with this I’d be really appreciative. I want to be there for my family but I’m just in such shock as he seemed so healthy.

  • Hi there,

    Just read your message re your Dad. I'm sorry to hear about his story and hope the outcome of his results are all good.

    I'm writing to you as I have secondary bone cancer as a result of breast cancer in 2017. I was diagnosed with bone cancer in 2021 after an MRI scan.I had reported general aches and pains which I saw my GP about in Dec 2020. I got my diagnosis in Feb 2021.All I can say is the waiting and the not knowing is the worst of the worst. However, and although I can only speak for my oncologist and on going care I receive at the moment, I am getting excellent care. Obviously your Dad and you are in the dark and fearful of the future. I can reassure you that there are so many treatments available to treat the condition including radiotherapy which helps to shrink tumours , which can help if there is any pain. I have had my treatments changed 3 times since my diagnosis and every time my oncologist reassures me that when the present treatment stops working, he has another treatment up his sleeve. 

    Don't be surprised if, after the MRI, the report will show further spread to other bones. I have it in my hips, spine ,pelvis, ribs, shoulder, skull, right femur. I am absolutely unaware of all these areas .I am so lucky i have no pain, mainly because at the start of my treatment I had a lot of new medications thrown at me. (including 3 separate doses of radiotherapy) I did feel a bit weary at that time, but once my treatment pattern was in place, I now lead a very normal life. (just returned from Caribbean cruise).   I have a medication that strengthens my bones, which is reassuring against fractures. However, I am very careful and well aware of risks. I am on an oral chemotherapy at present and will stay on this unless anything changes. I have a blood test every 3 weeks , and part of these tests include a test called 'tumour markers'. If your Dad does have secondary bone cancer, they will want to know where the primary is so bloods can be tailored to measure the amount of protein feeding the tumours. If it gets too high, treatment will be changed as the cancer has become active and possibly attacking another part of the body. (I started chemo just over a year ago because of some tiny lesions seen on my liver. Chemo has worked a treat up until now and my 3 weekly tumour marker tests are all stable. ) 

    You will read lots about bone cancer and life expectancy etc. We are all different and obviously depends on response to drugs. However, as I said earlier, there are new drugs being developed all the time. Bone cancer is not curable, but it is manageable and with good oncology help and support from you and your family, hopefully your Dad will get everything he needs in the near future.

    Hope I haven't bogged you down even more with all this info. If there is anything I can help you with, do come back to me. I have my fingers crossed for your Dad. 

    Regards

    Yvonne

      

  • Hi Yvonne, 

    This is such a kind message thank you so much. It is so reassuring to know there are people out there who have had similar experiences. I think the whole thing just came as such a shock due to the complete lack of symptoms and no apparent primary cancer yet. It already seems a lifetime since we found out let alone waiting for the rest of the results. 

    I’m so glad your treatment has been going well and thank you so much for replying in such detail. It’s a scary place as you read so much online but you’re absolutely right - until we know more I could drive myself into a complete frenzy. I have so many questions I want to ask my parents but I don’t want to worry them further as I can already imagine what they must be going through. 

    I just count ourselves lucky that he even got a scan in the first place. The doctor wasn’t going to send him as he had no symptoms other than the lump and then since the scan it all cannonballed out of nowhere! I’m grateful that we got the scan rather than it got worse and we had a scan at a later date. 

    once again thank you so much for such a kind reply. I’m very new to this and struggling with the shock. I feel much more reassured about what to potentially expect and to not catastrophise without knowing all the details. 

    you’ve really made my day, thank you so much for your kindness xx 

  • I'm so glad i can offer some reassurance. I understand that you have questions you want to discuss with your parents but are fearful of worrying them further. This is difficult as everyone is different. It is very likely your parents are worried about worrying you!!  I think all you can do is offer a listening ear if they want that. You may need to ask them if they want to discuss their fears. It might be your parents are not in the right head space to talk about it at the moment, but you might need to check that out with them. 

    When I got my initial breast cancer diagnosis in 2017, i had such a battle with myself as to whether to tell my 2 grown up children whilst I was waiting for the biopsy results. Almost felt like I'm dammed if i tell them and dammed if I don't.  I decided to tell them about my pending results. It was defo the right thing to do, although at the time I did feel like I had now burdened them with it all. At least your Dad has already shared some information with you about what is happening.

    I need to warn you all though, however prepared you are when it's results day, nobody is really prepared. It's like reality of the situation has now been confirmed if the results are positive. My oncologist gave me a very basic description of the treatment regime and even drew a diagram. Your parents will find it difficult to absorb everything. In the early days, my husband would come to my appointments with me, armed with notebook and pen. Him making notes was invaluable as I couldn't take it all in.

    You do right not to use energy worrying about it all at this stage. Save it for if you need it in the future. I've gone on again with my long message. Don't worry about messaging back at this time, (unless you want to!!!) However, do keep me posted as to the outcome.

    Yvonne .xx