Is there anyone out there willing to share their experience living with secondary breast cancer of the stomach? I know someone who is facing this very lonely journey as she hasn't managed to find anyone facing a similar experience.
Your support will be greatly appreciated.
Hi Katie you should have a bell then envelope and your icon symbol in the to right hand corner of screen if you click on the envelope you should be able to send and receive pms. If you can’t see anything, please ring the number on here and ask them to talk you through setting up access and notifications so you can send pm’s ❤️ It’s only private stuff like your location, family etc you need to be careful with ❤️ Please keep safe 😘💕💕✨✨Shi xx
Hello Shi, thank you for the reminder. I am not sure how these sites work as I haven't done this kind of thing before. How do you private message someone? It would be really helpful to know, and I can't see this option on the screen. Many thanks.
Ladies you can private message each other if you want to share more personal information - You could maybe edit your posts to make them a bit more anonymous by clicking on the three dots on the right hand side of your posts and using initials etc .Glad you have found each other for support .Jill x
❤️Gentle reminder these threads are open to the world, please be careful with personal details you post for security reasons ❤️keep safe 💕💕✨✨Shi xx
Hey Katie I’m so delighted for you with the outcome of your scan - it’s some encouragement and confirmation that the drugs are working. Scan result waiting was bad during primary BC but they take on a whole new level with secondaries don’t they? But probably as we get used to living with it we’ll get used to them too! I’d be interested to hear if your endoscopy tells you more ( what a delight to look forward to - good luck with that!)
I’m so sorry you are having such pain in your stomach because it’s unbearable when the pain strikes. The only relief I got was to vomit. Painkillers didn’t even touch it. Because my pain has disappeared from February I didn’t get to experiment on foods to see if different ones made a difference. Thanks for the tip on the ice cream. I understand totally your loss of appetite and it was that that made me insist on another camera - I couldn’t eat any Christmas dinner at all or really any food for weeks because I was afraid of triggering the pain. I did lose a lot of weight at that time but have found that by eating small - soup, eggs, toast, baked potato, small portions I’m managing to get food down. In fact over lockdown I’ve put on weight. And because I’ve had no pain I haven’t had to get advice on that. I know they did tell me no ibuprofen.
With my primary BC I was diagnosed in February 2010 - had a mastectomy, chemo and 5 weeks of radiotherapy. Like you I had 17 lymph nodes removed with 11 of them having cancer ( so I too was waiting for some of the wee brats to have made their escape!). I was on Tamoxifen for 8 years then swapped to Anastrozole until the SBC diagnosis.
I’m so glad the bone mets are shrinking a little because it seems your work is cut out for you contending with the stomach at the minute.
So nice to hear your personal information it helps me form a picture. I’m Mary married to Columba ( you’ll not have heard that one before!!). I have a daughter Orlaigh aged 22 and a son Lorcan aged 20. I live in Dungiven ( near Derry) in Northern Ireland. I’m a secondary school teacher but currently off because I can’t be around the teenager germs!! You’re children were so young ( still are) when you were diagnosed with your primary - that’s the biggest fear isn’t it!!
But Katie we’re both doing well, the drugs are doing their thing and now we have each other to bounce questions off - things are on the up 😎
Keep in touch 💕💕
Hi 'tum chum'! So good to hear back from you and learn a bit more about your story. I can't believe it took that long to get your diagnosis - how stressful for you.
Had my meeting with oncologist yesterday and, like you, the scan showed that things are stable. He said there are signs of a tiny improvement in both the spine patches and the stomach, but the endoscopy that I have next Thursday will hopefully be more informative about the stomach. Tummy certainly doesn't feel any better, and sometimes I feel my capacity for food is reducing even further. Oncologist's conclusion was that he was cautiously optimistic re the scan (which in my case was an MRI). I reckon that's not a bad result so pushing forwards on the Ribociclib/Letrozole combination, which I think is very similar to you.
I am having quite bad pain in my tummy at the moment. I had this a couple of months ago and it then got better. Any tips on pain management? Recently I have found that eating cold stuff - ice cream etc - helps a little. Have any particular foods helped you? And have you found it hard to keep weight on?
What was your primary BC situation? Mine was diagnosed October 2014, followed by mastectomy, chemo and radiotherapy. All the lymph nodes removed at the time tested positive for cancer so I always knew there was a possibility of it lurking around and returning at some point, though obviously hoped the treatment and drugs (Tamoxifen) would keep a lid on things. Wish I'd known Lobular BC was so sneaky and could turn up in the tummy (tho rare).
I am very pleased for you that you don't have any mets anywhere else 🙂. Tummy is enough of a challenge!
Some personal stuff: I am Katie, married to Nick, and have children Emily, 15 and James, 11. Live near Guildford in Surrey and have my treatment in London. It's so good to 'meet' you xx
Hey KatieW. I’m so glad you’ve joined the Forum ( you know I’m not glad as to the reason why your on it!!) but at last someone who is in the same boat. Although I’m sorry you have evidence in your bones too. I’m lucky in that aspect but you will see so many posts on here of people living successfully with spread to the bones and that the drugs are doing their job.
Now to the stomach. I too have lobular breast cancer and only learned in April that it can pop up in the stomach lining. I fought for 2 years to get my diagnosis. No one took me seriously about the feeling of fullness, the heartburn and loss of appetite. I had numerous camera tests and was told at one point I had a tumour on my bowel. Turned out I didn’t! It was only when I started vomiting ( for the most of December last year) and excruciating pain in my stomach I was sent for another camera test and biopsy which revealed the breast cancer. A shock but I was so glad to get answers! I have had no vomiting or pain since February but the feeling of fullness is permanently there. I eat small but often.
Ive been on Exemestane hormone treatment since April. Due to Covid I couldn’t start the Palbociclib (ibrance) until the end of May. I’m on my 4th cycle. I tolerate it well but my white blood cells don’t like it so my dosage has been reduced from 125mg to 100mg.
I had a CT scan about 3 weeks ago and the results show the tumours in the stomach are stable🙏 So I pray that you get good news tomorrow (not much sleep for you tonight 😢). Please let me know how you get on.
I’ve seen that only 0.3% of the lobular cancers go to the stomach. So we are indeed unique but it is still frustrating that more is not written about it. It’s difficult too not to know what progression is like or how slow or fast? But as with most of the secondary breast cancers there are a wide range of options so as long as there’s options that’s the most important thing.
How many years were you between primary and secondary diagnosis? I was 10 though they do now believe I have had it up to 3 to 4 years!
Please feel free to ask me anything. If I hear anything from my oncologist that I think is of interest to you I will let you know. I would really appreciate it if you could do the same for me.
will be thinking of you tomorrow ❤️ Delighted to talk to you “Tum Chum” xx
Forgot to say.... also have scattered small metastases in my spine and pelvis, and have monthly Denusamab injections for this. x
Hello mtoner, my kind friend posted on here for me. I feel very alone on my journey and was so encouraged to hear of your response. I have lobular breast cancer, and have learned that it can metastasise to the stomach, but it is rare so.... we are unique! I was diagnosed a little after you, at the end of May. I have been put on a combination of Ribociclib and Letrozole because my cancer is oestrogen positive and, following an MRI scan yesterday, I will find out tomorrow if the drugs are working. So far my stomach symptoms have not changed (I feel very full very quickly, and tbh don't really feel like eating at all, plus a sort of burning sensation in my stomach a lot of the time) so I am not sure to think - but not long to find out now. I would be very interested to hear how you are faring and what your symptoms are. Did your oncologist give you an indication of how soon the drugs would have an effect? Thank you for responding. Katie
I’ll certainly look out for her. She already has amazing support with a friend like you. ❤️Thanks for the good wishes. Nice to talk to you x
Hi both Shi and mtoner544.
Thank you both for replying. I've just got back from work and read your messages. Yes, that was my plan, for her to overtake from this thread now that I know there is such caring support out there for her. I'll be seeing her tomorrow, so I'll show her this thread. Mtoner544 please very kindly keep an eye out for her when she posts.
I want to reiterate how grateful I am to you for coming forward to support her. All the very best with your treatment. I'll be saying goodbye to allow her to benefit by keeping this thread going.
Big hugs and best wishes.
OOoops - hit the send button too soon 🙄🙄.
I was just going to say some of the stories also fill you with optimism!!
So I really hope your friend joins and i look forward to a chat 😎xx
As Shi says maybe the best plan would be for your friend to join the forum and keep this thread going. Although I have no problem with the email addresses either. Thank you so much for your concern but I’m honestly fine discussing it all- symptoms, diagnosis, treatment and side effects. If our discussion helps others too that would be brilliant ( you’re so good looking for ways to help your friend 💕)
Even aside from talking on this thread your friend will find this forum such a help - the videos, the helpline and just the feeling of belonging to a group that understand SBC is fantastic. And reading some of the stories makes you so thankful that “it’s not too bad” and
angel maybe your friend can join the forum and keep this thread going on here, there maybe others going through the same too and this thread could give others support going forward too if you are all ok discussing treatment plans and any side effects ❤️Don’t forget to call the number on here too for support also ❤️💕💕✨✨Shi xx
I highly appreciate you've kindly touched base with me. No doubt the person I know will be relieved to finally get in touch with someone who is going through a similar experience.
Yes, she was only diagnosed in June 2020. Mtoner544, I'm not sure how you can both get in touch because I've started this thread. I'm not sure of all the rules for this forum. Are we allowed to exchange email addresses? Or shall I ask her to join to pick up from this thread?
Once again, I appreciate you're willing to share some of your experiences with her. However, please look after yourself in all this too. I don't want it to get emotionally difficult for you.
I was diagnosed with Secondary Breast Cancer in the Stomach in April of this year. Like your friend I have found it very difficult to find anyone in the same position- my reason for joining this forum
I am currently on Exemestane and I get Palbociclib once per month - I’m currently on my 4th cycle ( delayed due to Covid and also a few breaks due to low white blood cells)
Is your friend receiving treatment too? Can I assume she is only recently diagnosed? I’m sure she is finding it hard to accept - it’s very difficult hearing a secondary diagnosis and then to learn that your cancer is not one of the “normal” ones can be a bit isolating
I would be happy to “ compare notes” with your friend if she wants to message. I’m not sure how much help I’d be but we might help each other🤔
Gillyflower, thank you for taking the time to reply to me, I really appreciate it, especially so because I only read after the post by the breast care nurse (BCN) that this forum is for those with secondary breast cancer. So I'm relieved my post was not deleted.
Yes, I'm desperate to help this person because she's tried a few avenues to try to get in touch with someone similar to her, but has not succeeded. Yes, she's also asked her BCN to extend her search wider, but yet, no luck.
I will ask her to phone the helpline, and try the other suggestions you've made - all useful suggestions...thank you.
I don't have any experience of this myself however I just wanted to reach out and suggest that perhaps you could tell the person you are asking on behalf of to get in touch with the Breast Cancer Now helpline. Breast Cancer now run a volunteer service called "Someone Like Me" which may be able to match a volunteer who has a similar experience.
It may also be worth checking out a group on Facebook called Secondary Breast Cancer UK. Failing that, the person you know could ask their Breast Care Nurse if they know of any other patients with a similar diagnosis that would be happy to get in touch, or they could ask for a referral to a local hospice and then have a chat with the hospice to see if there are any patients with a similar diagnosis.
Its very kind of you to want to help this person, I hope that you have some success in your search.