Her+

Hi, I was diagnosed with grade 3 (they never didn’t tell me the stage) but HER and Estrogen positive. I had chemo first and just had surgery and am doing well, with there being no trace of cancer now.   I now am moving into preventative treatment - radiotherapy, Phesgo injections and hormone tablets.  Maybe this helps 

I am 43 years old with 2 young kids and this week I have been given the exact same diagnosis as you. When I talk to family and friends I use the same words as you “it seems like at every point the ‘worst case scenario’ is confirmed”. I have a CT scan tonight to see if it’s spread and the results of this are on Tuesday as part of my treatment plan meeting. Naturally I am fearing the worst. I’m fearful that I’ll be told I only have weeks or months left. 

The whole thing is like some awful surreal dream, as I feel completely well and 3 weeks ago I didn’t have a care in the world. 

I am also desperate to hear positive stories from someone in the same scenario. 

I wonder if you feel like me - although the friendliness and supportiveness of the forum is amazing, in some ways it’s not always helpful - because you always seem to be in a worst situation than the person posting! I’m sure this isn’t always the case - but it sort of makes you feel like your situation is hopeless. 

Although I can’t give you the positive story that you are looking for I hope that you can find some comfort knowing that someone else is in a similar boat right now. On the cancer research forum I wrote a similar post to you and I did receive some replies that helped to lift my spirits. You could search for that (same user  name)

X

Hello! I have a stage 3 HER2 positive spread to the nodes. It is terrifying and oddly this stage when you don’t have all the results in as yet is the scariest time. Once you have everything in front of you and you know what you’re dealing with it helps a lot or I found it did certainly. But in answer to your question yes there are good outcomes with this cancer and the majority of people do survive it and survive it well.
Unless people have filled out their profile you really don’t know what their situation is but I can tell you there are ladies posting who have survived and are surviving with your cancer, my cancer and triple negative and indeed a stage 4 diagnosis, from my time reading responses. While you’re looking at the forum be aware that people who aren’t struggling don’t often post to say ‘hey my treatment is going great!’ They find themselves here because they’re looking for help.  But do know that there is always hope and always good outcomes xx

Hi all,

At 44 3 years ago I found a lump, which actually turned out to be two lumps, one lump was her+ and the other one estrogen +, I had Chemo, the lumps did shrink the estrogen +shrunk completely I  then a lumpectomy on the lumpectomy they discovered it had gone into a couple lymph nodes in my arm so I went back for further surgery and had them removed no further nodes that where removed had any signs of cancer.

I then had 18 lots of radiotherapy, then weekly fusions of Herceptin and perjeta, I’m now on tamoxifen have been for the last 2 years with no issues, I take it at night as I do get a little hip pain from it but I can mainly sleep it off.

Ladies I wish you all the best, it’s not going to be easy but you have got this!

Tell that little monster to enjoy the Chemo and drink up!

Hi - mine was stage 2 grade 2 and no lymph node spread , but ER+ and HER2+, so not quite the same as you but same type. I am just past 5 years since diagnosis and what I would say is that even in the last 5 years the treatment for HER2+ has  come along so, so much. There are so many new drugs targeting it . There also seems to be a move to pre surgery chemo , I think to see if the treatment is working , as if it isn’t they can change it to another drug. The new drug Phesgo also seems to be now offered more often to women after surgery. - I could go on with the drugs , but there was only Herceptin when I was diagnosed , but that in itself was a complete game changer for HER2+ Breast cancer. 

What  you won’t see is a reflection in recurrence/mortality figures as these treatments are so new , and statistics so old, but in all the trials these new drugs give a way , way better picture , so don’t be disheartened when looking at these figures.

Although none of us want to think about metates, the fact there are so many drugs also gives lots of scope for  women to continue living long lives with a secondary HER2+ diagnosis. 

A famous HER2+ survivor is Jennifer Saunders who was diagnosed in 2009, so there are a lot of us out there so please don’t think worse case scenario , think , “this gives the drs a lot of scope for treatment”

I do get what you mean about forums such as this , but you just have to pick your way through and find the people you relate to and can help support you (and vice versa) along the way. Breastcancernow have a service called Someone like me, where they will put you in touch with someone who has been through your particular journey , it maybe worth contacting them ?

Hope this has helped , and good luck with your treatment.

Jo xx

Thank you to everyone who is sharing hopeful stories. Although I didn’t write the original post your collective words are bringing me a bit of comfort. Thank you for being generous enough to do this when you have your own battles to fight. I hope one day I can be a comfort to others….not the one needing the support! X

Hello lovely

I am sorry for the delay in response I didn't realise anyone had responded back to my messages.

How are you doing? I hope your scans went ok and you are feeling positive. That's all we seem to keep saying is be positive but sometimes it's hard when it's so scary. 

Have you had a date for your chemo yet? Mine starts at the 13th of September but its been 6 weeks since diagnosis and I am scared it would of got more severe during this time

I hope you're keeping strong. This is shit but we can do this. X

Thank you for your message. I am so pleased to hear your treatment is a positive one and am wishing you the all of the best for the future x

Hi,

I’m so glad that you have a date to start chemo. You are moving forwards now and starting the journey to removing cancer from your life. 

A friend that I have made on another forum with the same diagnosis as you and I is on round 4 of chemo and the tumours have shrunk dramatically. 

Yesterday I had the results of the CT scan and it doesn’t seem to have spread beyond the lymph nodes. I went into that meeting expecting to be told that my days are numbered. The relief was immense! I was on a high all day, today I’m still on a high, but I’m also starting to remember that I still have an aggressive breast cancer - damn! 

I haven’t got a date for chemo yet, but I’m expecting it to be about the same time as yours. How many rounds will you have? I will have 6. 

x

Hi,

I do feel relieved that I have a date to start, but I still feel like it'd been 4 weeks since the clear ct and mri and I am petrified because it'd aggressive etc that it could of spread further. I am sure it's all in my head but it's horrendous.

I am so pleased for you. Its a massive relief isn't it, being diagnosed with an aggressive cancer seems positive when you find out it hasn't spread. Cancer is a weird roller coaster for sure.

Do you have to have chemo and her2 treatment and then a mastectomy and then radio? I will find out how many rounds etc tomorrow as I am seeing the oncologist for the first time ever. Is 6 rounds chemo 6 times? It's all so new to me!

X