Best Of
Re: Lost
@Number2 We have the same type. Her2+ and ER/PR -. I had the neo adjuvant chemotherapy. Four doses three weeks apart followed by Paclitaxel every week for twelve weeks plus this is when the targeted therapy started. Herceptin every three weeks for a year. I had a mastectomy after the Paclitaxel treatment was complete. I did not have radio as it made no difference for me in regards to whether the cancer would return or not. I highly suggest you take them up if they offer you Perjeta with your Herceptin treatment. It reduces the chance of it returning. It will probably cost. My cancer is now metastatic and the perjeta may have prevented this. If you have any questions just ask. Sending big hugs
Re: HER2 positive diagnosed Dec 24 -
Thank you Suki. I am learning not to get too far ahead of myself with regards to future treatment cause things can change if there is or isn’t a response to chemo. I actually looked at the time of year as a positive cause I have three school aged kids and everything just slowed down. We even managed to get away after my first cycle. Just so nice to hear of other peoples treatment journeys, know that unfortunately many people have walked this road before me but there is light at the end of the tunnel. Xx
Anna15
5
HER2 positive diagnosed Dec 24 -
49 fit and healthy and then what the! Noticed a dimple in left breast, straight to Dr, all the tests and within 18 days was having my first round of chemo 2 days after Christmas. 2 cm lump left breast, HER2 3+ positive, they don’t believe it is in my lymph nodes just one enlarged from the biopsy. Just finished 2nd of 6 rounds of chemo. Then plan is a lumpectomy, radio and then endocrine therapy. Reading all the threads of HER2 positive it seems like a long road ahead. Did anyone choose a double mastectomy to avoid issues in the future? Would love any suggestions, advice, feedback for anyone going through a similar journey.
Anna15
5
High Grade DCIS
Hello all, fortunately after listening to a podcast this morning, I have found this site, thank goodness!
Due to having dense breast tissue, I believe my DCIS has been missed previously, only MPO, but with my nipple showing signs of inversion from February 2023, and sporadic nipple leakage since then, I've had mammograms and ultrasound, plus saw a specialist in April 2024 but no diagnosis, no sign of a problem, until November 24. Ultrasound found a lump behind my nipple, however MRI has found a 7cm x 3 cm x 2 cm mass! What was to be a small lumpectomy is now going to be a Mastectomy, and I am in shock.
I've had 4 biopsies now and all show DCIS, will have lymph nodes biopsied at time of surgery to check I'm clear, which I'm hoping for.
I was originally under Dr Chris Pyke in Brisbane but he is retiring, and has referred me to Dr Emma Clarkson, at Mater, has anyone experienced her before?
I'm not having another consultation until Jan 6th, and am feeling that I've had this diagnosis and been left to deal with it without any advice of communication, is this usual? I suppose that's why I'm here, I am looking for support. I've just been told I'm to lose a breast, and my GP actually said, you didn't have breasts before you were 11, you'll get used to not having them!! WTF!! I said to her, I have had my breasts for 45 years, I'd rather keep them! I want to scream!!
Thanks for listening, I do understand there are so many in a worse position than me, I really do. I appreciate you being here and sharing your stories, advice and ears. Xx. Paula
Due to having dense breast tissue, I believe my DCIS has been missed previously, only MPO, but with my nipple showing signs of inversion from February 2023, and sporadic nipple leakage since then, I've had mammograms and ultrasound, plus saw a specialist in April 2024 but no diagnosis, no sign of a problem, until November 24. Ultrasound found a lump behind my nipple, however MRI has found a 7cm x 3 cm x 2 cm mass! What was to be a small lumpectomy is now going to be a Mastectomy, and I am in shock.
I've had 4 biopsies now and all show DCIS, will have lymph nodes biopsied at time of surgery to check I'm clear, which I'm hoping for.
I was originally under Dr Chris Pyke in Brisbane but he is retiring, and has referred me to Dr Emma Clarkson, at Mater, has anyone experienced her before?
I'm not having another consultation until Jan 6th, and am feeling that I've had this diagnosis and been left to deal with it without any advice of communication, is this usual? I suppose that's why I'm here, I am looking for support. I've just been told I'm to lose a breast, and my GP actually said, you didn't have breasts before you were 11, you'll get used to not having them!! WTF!! I said to her, I have had my breasts for 45 years, I'd rather keep them! I want to scream!!
Thanks for listening, I do understand there are so many in a worse position than me, I really do. I appreciate you being here and sharing your stories, advice and ears. Xx. Paula
MrsPP
5
Re: Newly diagnosed metastatic cancer
Thanks for your update @Rhubarb21. I get people saying to me i look good too. It's a common thing said when we have metastatic breast cancer. I guess people just don't really understand what it can be like for us. I say to those people, the real question to ask is ' Do you feel as good as you look?'
Mets is hard. I don't have as many bone mets as you but I have it in my liver too. One of the ladies in my support group has mets in so many of her bones and she has been metastatic now for 11 years. My oncologist says it doesn't matter where the mets are as long as treatment halts progression. That's what we want for as long as possible.
So pleased you have your kids support. None of us could manage without our nearest and dearest. One thing I did was to stop thinking I was dying. I started off like that when I was first diagnosed with mets. Then I thought that I am not dying (not yet). What I am doing is living with metastatic breast cancer and i am living well, as best I can and it makes life for me far more enjoyable. Keep enjoying life, keep doing everything you love and being with those you love.
Mets is hard. I don't have as many bone mets as you but I have it in my liver too. One of the ladies in my support group has mets in so many of her bones and she has been metastatic now for 11 years. My oncologist says it doesn't matter where the mets are as long as treatment halts progression. That's what we want for as long as possible.
So pleased you have your kids support. None of us could manage without our nearest and dearest. One thing I did was to stop thinking I was dying. I started off like that when I was first diagnosed with mets. Then I thought that I am not dying (not yet). What I am doing is living with metastatic breast cancer and i am living well, as best I can and it makes life for me far more enjoyable. Keep enjoying life, keep doing everything you love and being with those you love.
Cath62
5
Re: Newly diagnosed metastatic cancer
Just wanted to share more good news. When seeing my radiation oncologist yesterday she showed me where the bone was actually regrowing in some of my spinal mets. It was definitely the news that I needed, This is from my bone scan done just 2 days ago. Fingers crossed this continues and I get to have a while yet with my kiddos.
Rhubarb21
11
Re: Newly diagnosed metastatic cancer
Just thought I would do an update.
So we have now discovered that I have ‘innumerable’ mets in pelvis, spine, ribs, sternum, scapula and skull. Honestly I think that the skull ones scare me the most, even though the oncologist assures me that it doesn’t mean that the cancer will go to my brain any quicker than if it wasn’t in my skull. I am onto my second broken rib since being diagnosed so am on quite a lot of painkillers (for me at least). Dr has got me on letrozole, ribociclib, xgeva and zoladex.
It is the strangest feeling being stage 4 from the start. While I know that I am ‘sick’ and I know that this will eventually kill me, I don’t feel sick at all. People keep telling me how good I look for someone who is essentially dying.
My kids are still doing amazing, and we have so much support from friends and our community.
I also had my 3mth scan and while there isn’t a lot of progress necessarily (due to some issues with the meds) there is also not a huge amount of progression and I will take that. There is hope, even when it seems scary.
Here’s to sticking around for a while yet.
I also had my 3mth scan and while there isn’t a lot of progress necessarily (due to some issues with the meds) there is also not a huge amount of progression and I will take that. There is hope, even when it seems scary.
Here’s to sticking around for a while yet.
Rhubarb21
11
Public patient Private radiation (Toowoomba)
Hi everyone,
Just wanted to share a useful bit of info for anyone going through something similar. My nearest radiation facility is 4hrs drive away in Toowoomba, but it’s private & I am a public patient. I went for my planning appointment this week & at the end I was taken aside into a small office & given my ‘Estimated Fees’. The admin officer asked if I had means to pay $6000 on day 1 upfront, and that would then be rebated through Medicare. The grand total of 3 weeks treatment was $15000. I said that I could maybe borrow money from
a relative. I felt very patronised & have been stressing for the past few days about how to get that money upfront. To top it off my (old) car broke down on the trip home, so now I need to buy a new one - ugh!
I went to see my wonderful GP today to ask him to sign a Compassionate release of Superannuation form. He said ‘You shouldn’t have to touch your super, you’re a public patient!’ He rang the private hospital and clarified that it would be difficult to access money (particularly after being off work for surgery & chemo since May 2024). A lovely admin phoned me afterwards & explained that Medicare can fund the upfront payments. I just have to sign a form that they email me & each week of treatment I will have the funds from Medicare land in my account & it will then transfer across to the private hospital. I will only have to pay a total of $1000 over the course of my treatment. Phew! I was so stressed about this. Apparently this is not an option for all patients, but I think it’s important info if anyone else is in the same boat. The last thing we need is extra stress!
Just wanted to share a useful bit of info for anyone going through something similar. My nearest radiation facility is 4hrs drive away in Toowoomba, but it’s private & I am a public patient. I went for my planning appointment this week & at the end I was taken aside into a small office & given my ‘Estimated Fees’. The admin officer asked if I had means to pay $6000 on day 1 upfront, and that would then be rebated through Medicare. The grand total of 3 weeks treatment was $15000. I said that I could maybe borrow money from
a relative. I felt very patronised & have been stressing for the past few days about how to get that money upfront. To top it off my (old) car broke down on the trip home, so now I need to buy a new one - ugh!
I went to see my wonderful GP today to ask him to sign a Compassionate release of Superannuation form. He said ‘You shouldn’t have to touch your super, you’re a public patient!’ He rang the private hospital and clarified that it would be difficult to access money (particularly after being off work for surgery & chemo since May 2024). A lovely admin phoned me afterwards & explained that Medicare can fund the upfront payments. I just have to sign a form that they email me & each week of treatment I will have the funds from Medicare land in my account & it will then transfer across to the private hospital. I will only have to pay a total of $1000 over the course of my treatment. Phew! I was so stressed about this. Apparently this is not an option for all patients, but I think it’s important info if anyone else is in the same boat. The last thing we need is extra stress!
Re: Information Overload!
I'm done with chemo! Yay 
I got through the full suite of Taxol and am out the other side. I have a short break before starting radiation next week. I will be done before Christmas - best present ever.
I'm still super tired and feeling very "grey". The hair on my head is growing back - interesting to see my natural colour after so many years being other colours. My eyebrows and eyelashes still give me away.
The last few weeks were rough on my nails - so incredibly sore. The nail bed seems swollen and quite a few are brown & lifting. You never quite realise how much you do with your nails! I expect it'll take some time for it all to grow out.
Feels weird to be out the other side of chemo.
I got through the full suite of Taxol and am out the other side. I have a short break before starting radiation next week. I will be done before Christmas - best present ever. I'm still super tired and feeling very "grey". The hair on my head is growing back - interesting to see my natural colour after so many years being other colours. My eyebrows and eyelashes still give me away.
The last few weeks were rough on my nails - so incredibly sore. The nail bed seems swollen and quite a few are brown & lifting. You never quite realise how much you do with your nails! I expect it'll take some time for it all to grow out.
Feels weird to be out the other side of chemo.
lorns
6