Please read: What is the secondary breast cancer board for?

[Yorkshire Tyke]

Joined a couple of online zoom calls and whilst interesting not what I wanted. I wanted a physical person who lived in the same town as me.

[Bernard_BCN]

Hi @Yorkshire Tyke, we have other support services running, like the Living with Secondary Breast Cancer service - https://breastcancernow.org/living-secondary-breast-cancer-online-services.

Could this be what you were after?

Bernard

[Yorkshire Tyke]

I found the "someone like me" service was for anyone with a primary diagnosis.

Locsl BCN nurse never came back to me with a "person" instead suggested I search on Facebook.

[Tah65]

Help is in here. It's hard to give up work. It's 5 years since I decided to but I only do things that really matter to me since. You mention oral chemo but where you are with scans is also difficult to bear. I hope you have found something to help you. Have a good look round the site. Theres online community and face to face groups. BCN do a "someone like me" service to connect a volunteer with you. I've also found a lot of practical and emotional support through the wellbeing services of my local hospice. Hearing your terminal is hideous. Nothing anyone says can take away from the impact of adjusting to life that's limited by secondary cancer. Although for every person in our situation it's a unique personal experience there's also support, understanding and empathy in connecting with others. Sending Hugs

[Lancashire Lass]

Yes girls there is. Click the reply tab which will bring up the box to reply on the forum. Ignore that. Scroll down and at the top of the page there’s a pink envelope in the top right hand corner, click that and it will take you to a private message box. However you need to know the user name of the person you want to contact and enter it in the space. For reasons I can’t fathom you sometimes have to do it several times before it agrees with you! But persevere. The you can reply and send. It’s easier at that point to exchange email addresses and do it that way I’ve found.

I hope this helps and good luck.

LL💐

[Midnight72]

Hi Kirsten is there a way we can do direct messages?x

[Midnight72]

New to the site is there anyway you can do direct message?xx

[Kerstin]

Hi, 

I just replied to another post here and am now reading yours - it sounds like we are going through the same treatment. Please get in touch, I would love to share experiences and support.

I hope you are doing okay, 

Kerstin 

[Kerstin]

I just read your post. This sounds similar to my story. Maybe we can get in touch? I hope you are doing okay. 

I am fairly new to this forum...have posted a couple of messages but not sure if always in the right place...

Kerstin 

[EssenceOfMurtlap]

Thank you @Jaybro for the DM info. I've tried to do so, however, the recipient has not enabled private messages on their account. So there's that..

Meanwhile, I found a "friend" ability at bottom of people's posts which allows for "following" as well. 

As for meds, I'm on Decapeptyl, Fulvestrant, and Ribociclib.

[Jaybro]

Hi

Interesting question - is there a way to DM on this site? It would seem that, when setting up this new board, someone has overlooked that facility. All I can suggest is you locate a post from the person you want to DM in one of the main forums (just click on their name and it will take you to all their posts so you don’t have to trawl endlessly) and DM from the main forum. It says top right ‘Send a message’. Meantime, hopefully, someone will spot the oversight.

I’m guessing you’re on capecitabine? Minimal side effects is brilliant. Keep going. Me, I’ve completed cycle #26 and am being given a week off to fight a virus. I’ve been plagued by side effects from the start and sometimes feel a bit of a wuss. But I’ve got MTNBC and I’m still here against the odds so I’m not complaining.  Xx

[EssenceOfMurtlap]

Hey there @Midnight72 

I am going thru the exact same thing as you... medical-wise.

Breast cancer that has spread to the lungs... diagnosed a year ago. On oral chemo and hormone therapy. 

I'm not working presently, by choice... to reduce stress and focus on my health. 

So far my treatment has been working very well and I am happy continuing on it as the side effects are minimal. 

Btw, Is there a way to direct message people on this site? 🤔 

Anyway, Hope this site has shown that you are not alone in your experiences. Hugs 

[Jill1998]

Hi , maybe you could e mail the moderators with your suggestion they are always looking for ways to improve the forum maybe this could be incorporated into future updates they make ?  

Moderator@breastcancernow.org

[Lancashire Lass]

Hi,

I’m not sure where else to post this to get a message/request through to the powers that run this website. I have Triple negative secondaries and I find reading posts from non TNBC patients very dispiriting. I’m pleased for them that they have so many options and can be kept going for many months or even years on treatments that allow them to near normal lives. It isn’t like that for we TNBC patients, it’s a more aggressive cancer with many fewer options and only one currently, for this specific cancer. It’s great that Trodelvy is available but I can tell you from experience it’s no walk in the park. Normal life is totally suspended due to side effects. I would dearly love to see part of the secondaries site specifically for TNBC sufferers, a) to hear their experiences b) to connect with others “like me” c) not hear all the positivity from the non TNBC group of patients which will never apply to me and those like me.

Lancashire Lass

[Jill1998]

https://forum.breastcancernow.org/t5/Secondary-private-group/gp-p/Secondaryprivategroup

[Jill1998]

Hi , welcome to the forum . There is thread where quite a lot of people chat maybe you could post there ? There is also a secondary private group where you can talk more privately .I will post you the links . Best wishes Jill x

https://forum.breastcancernow.org/t5/Supporting-each-other-and/Bone-mets-please-join-in/td-p/477048

[Midnight72]

Hi I have stage 4 terminal breast cancer with a shadow on the lung currently on oral chemotherapy and hormone therapy and 10 months in,feeling very lonely after having to give up both of my jobs. Was hoping to find help to maybe talk to people etc.

[SaskiaE_BCN]

Hi everyone!

We hope you find this board (and the rest of our Forum) useful. 

Please remember that the main focus of this board is for people with secondary breast cancer to share their experiences, concerns, and questions with other users.

If you do not have secondary breast cancer or are awaiting results, you can post your questions to alternative boards, such as the Ask Our Nurses board or Appointments and Waiting for Results.

Thank you,

The Forum team