Secondary cancer support from the Online Community - "I have found this forum so helpful and feel the support out there so thank you all"

Secondary cancer support from the Online Community - "I have found this forum so helpful and feel the support out there so thank you all"

Secondary cancer is one way of describing cancer that has spread to other parts of the body. We have lots of members in the Community who have been diagnosed with a secondary cancer or are supporting loved ones with a secondary cancer. Other members might feel concerned about secondary cancers throughout their cancer experience.

The Community works as an online cancer support group and provides an opportunity for you to virtually connect with others in similar circumstances. You might like some support from someone who understands what you’re going through, or you might be looking for hints around how to talk to someone who has been recently  diagnosed. Some members benefit from shared tips on how to occupy your mind when waiting for results, or how to manage side effects from cancer treatment.

This Community news blog will highlight the wonderful emotional support shared in the secondary cancer forums and help members find the right support from the Community.

Some members might take some time to read through other's experiences before plucking up the courage to introduce themselves in the forums. This member of the secondary bone cancer forum felt positive that they'd eventually plucked up the courage to post on the site.

"Thank you so much for the warm welcome...After 2 years you would think I would have been on this site, well I have, but only to take a peek through my fingers.  However I have now plucked up the courage, it’s a big relief to read others stories and know there are others in the same or similar boat." Community member, secondary bone cancer forum

Your healthcare team can answer questions about your diagnosis and treatment plan, but it can make a real difference to hear from people who have been through it themselves. A member of the secondary brain cancer forum was keen to hear other's experiences

"I am wondering if anyone has any experience of stereotactic radiosurgery and if it worked for them. I had breast cancer 15 years ago and in March this year found out I have brain metastases, a 2cm tumour. I was unable to have surgery and have had 1 dose of radiosurgery just over 2 months ago.  I am coming up to the time for my first scan and feel very anxious that the procedure has not worked...I think if I go back to the oncologist I will just be told to wait for the scan. Is there anyone else in my situation that can tell me about their experience?" Community member, secondary brain cancer forum

Lots of members find that waiting for results can be one of the most difficult times to go through. Sharing your feelings on the Community and connecting with people who understand can be really helpful, like this member reported from the secondary breast cancer forum.

"Hi all, five weeks ago I went to my GP with pain in my ribs and was immediately referred to breast surgeon as I had primary breast cancer 12 years ago. The service so far has been excellent I had my bone scan and initial diagnosis really quickly. I have CT booked for 23rd and feedback from that 27th. Now I just had my appointment through for the oncologist and it’s not until 13th July. Is this normal? I am really anxious to have to wait seven weeks before we even begin to start talking about treatment. Would also like to mention I was very wary about going on line but I have found this forum so helpful and feel the support out there so thank you all." Community member, secondary breast cancer forum

We're glad you found the forum helpful and we hope that you'll inspire others to find similar support.

Supporting a loved one with cancer can also be a lot to deal with. Talking it through with others might be the first stage in feeling better supported. We hope it brought some comfort to this member of the secondary liver cancer forum to be able to share their feelings in the forum. 

"Hi I'm new here and don't really know where to start, my mum had the horrible news that she has secondary liver cancer after her lung cancer last Feb... I just can't get my head around this as my mum is well. I'm just heartbroken and don't know what to do or say to my mum . I know I have to be brave in front of her, it's just so hard I just can't lose my mum .." Community member, secondary liver cancer forum

You can read the response they received by clicking on the underlined link at the end of the quote above. This will work everywhere in this blog where you see underlined words, which contain a link to the original content from the Community, or further information.

In the secondary lung cancer forum, this member asked for support with managing the everyday whilst caring for their husband with secondary cancer in addition to many other responsibilities.

"In the beginning I felt I could handle all the ups and downs, what with blood tests, scans, treatment etc. but just lately I am finding it harder to cope, I have a full time job, and an elderly parent (father) to look after also. I get so tired and feel guilty if I don't clean the house, do the ironing etc. but I just can't seem to get my head together at all.  I keep asking myself am I doing enough?  Is there more I can do to make my husband's life a little better, because sometimes it feels like I could do more but I just don't have the strength. I have spent many an evening crying because I don't know what to do, who to talk to, is there any help for me out there?  I feel so alone and don't know what to do." Community member, secondary lung cancer forum

After talking to other members in the Community, they felt able to make some changes at home to make things feel a little easier. They posted in another forum on the Community with the following words.

"...just talking to like minded people is a great help, because as you say it makes you realise that you are not alone." Community member, family & friends forum

Living with uncertainty can also be difficult, as this member of the secondary lymph node cancer forum expressed recently.

"I am finding it very hard to live with not being sure of what is in front of me. Can anyone tell how they cope with this. I just find it very hard to live life normally I just think what is the point. This has turned my whole life upside down." Community member, secondary lymph node cancer forum

They were also able to ask an expert at Macmillan, by posting a question in the 'Ask a Nurse' session.

"My ovarian cancer has moved to my glands in my chest and tummy. Could you tell me if this is curable or not. Thank you." Community member, Ask a Nurse

If you'd like to read the response from Kirsty, one of Macmillan's Cancer Information Nurse Specialists, you can find that here. If you'd like to ask your own question to an expert at Macmillan, you can find all the sessions here.

Here are links to all the Online Community secondary cancer forums, so you know where to find them:

These groups are here for anyone with a secondary cancer diagnosis and their loved ones. Family members and friends looking for a support network in the Community might also want to join the family and friends forum here and the carers only forum here.

If you’re looking for secondary cancer information from Macmillan you can find this on the website here. You can also find support from Macmillan’s Support Line. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00email or live webchat.

If you’re affected by a secondary cancer, why not share what's brought you to join the Online Community in one of the forums listed above. All groups are safe and supportive places to access peer support when you feel you need it. If you need a place to talk about how you’re coping and ask questions, start a discussion to connect with others. 

If you have any questions or would like to offer any feedback about this blog, please do use the comments section below. We'll get back to you as soon as we can. You can also contact the team by email at community@macmillan.org.uk or send a PM to .

Anonymous
  • I am new to this forum and my partner has secondary kidney cancer.  He is in and out of hospital and I feel so alone and not sure who to turn to for emotional support.  It is not always easy to stay strong when I am on my own and my mind starts going into overdrive and worry about the future as well as worry about him and all the family.



  • Hi Thesoutherner,

    I’m Tom, part of the Online Community Team, I hope you don’t mind me responding here today.

    Firstly, we’re really glad you’ve found the Community site to speak up and start to access some support. You have come to the right place online to talk to others who understand.

    I can see you have responded to a post in the carers only forum and I’m sure our members will be welcoming and supportive. We also have a Family and friends forum you may wish to join too.

    You are not alone in how you feel. The feelings you have expressed are common among members of our forums.

    Have you ever spoken to our Macmillan Support Line. There’s emotional and practical support, as well as financial guidance and even nurses who can deal with medical queries. It might be a good place to start and talk things over for some support.

    If you feel comfortable in discussing things over the phone you can call anytime from 8am till 8pm, Monday to Sunday on freephone 0808 808 00 00.

    If you prefer to talk online they are also available on webchat hereduring those same hours, and you can email them anytime here.

    There’s also our In Your Area page which can help with finding local services and support groups.

    Your GP may also be able to help and offer counselling services in the local area.

    Hopefully some of the above options can contribute to you starting to find your own support Thesoutherner.

    If you have any questions for us on the Community Team you can contact us directly at community@macmillan.org.uk anytime.

    Kindest Regards,

    Tom
    Macmillan Community Team