Looking to hear of HER+ experiences

Hi smore 

I'm not a member of this forum but do understand the worry around if breast cancer might recur or spread 

I noticed that your post hadn't had any replies yet so responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi

i have just read your post now I have mets to my bones which was discovered in 2022 jan, I had a mastectomy on 2010 and was dcis only but was wide spread so had to have mastectomy, no further treatment was needed no tablets given nothing just sent on my happy way ! Fast forward 2022 I had a pain in my back I thought it was sciatica, for some reason I didn’t go to my docs I just went to a&e who ct scanned me right away to confirm I had mets in my spine, I am HER2+ and have since had a genetics test as it’s in the family and turns out I to have CHK2 .. so I have metastatic breast cancer but bone only no organs whether that’s because I caught it early by going straight to the hosp bypassing the docs I don’t no but I have it in hips spine scapular, if you need any more info I’m happy to be of help x

Thank you so much for your reply.  It is very kind of you to share your experience.  I just am interested to know how spread occurs as it does seem there is no set pattern.  Thank you for sharing

Hi,Good to hear from you and I hope you’re doing well now.  It’s good that you went to a&e.  I was sent for physiotherapy as it was thought that my pain was muscular and it was only found out by chance that the cancer had metastasised to my bones.  It hasn’t reached my other organs yet either so i feel lucky for that.  I am still taking letrozole which i believe has helped as well as the bone strengthening injections every 4 weeks and when I am stronger I will take another chemotherapy pill that should make the letrozole work more effectively.   What treatment are you having?   I also had a genetics test as breast cancer is in the family but I don’t carry a breast cancer gene that is recognised.   I will be going for another ct scan of my pelvis in a few weeks to see how things are.  I’d be interested to know how you’re doing and what the plan of action for you is.  Very best wishes, Judae

Hi 

so my treatment story so far is March 2022 6 rounds of chemo once that finished I was put on lettozole I have phesgo injection every 3 weeks and also the denosumab bone strength injection every six weeks and I also take a calcium acrete d3 tablet every day, I’ve been like this since March 2022 same treatment and touch wood fingers crossed all is still stable and first line of treatment working well, I’m due my 3 monthly scan in August and a catch up with the results with my oncologist on the 23rd August, hope this helps for you x 

Thanks so much for replying with such detailed information.  It seems your treatment is different to mine as I was put on letrozole immediately but wasn’t given any rounds of chemo.  I also tske a calcium carbonate tablet daily and have the bone strengthening injection every 4 weeks - I’ve had 2 up until now.  I haven’t been offered a phesgo injection but should be starting on 2,chemotherapy tablets daily in a couple of weeks.  My treatment is at Christie’s in Cheshire.   I hope all goes well with your scan and thanks again for keeping in touch.  It really helps