Just diagnosed her2 positive

Hello everyone

This is my first post. Very new to this and it’s all very scary.

I am having left breast masectomy on 17th december with no reconstruction. I have been told I will need chemotherapy and herceptin injections after.

Has anyone of you lovely ladies had this treatment who could give me some insight as to what to expect. 

I am so glad to have found this club and hope it will help me through and maybe in the future I might be of help to someone else just starting thier journey Into the unknown

Hi Carol

 

Yes, it is all very scary. I’m still not sure what makes a cancer diagnosis harder and scarier than almost every other disease but I think fear and uncertainty play a huge part in this, especially the initial stages. I was HER negative so I think a response from someone HER positive would be more useful to you in terms of what follows surgery.

 

I too had a left breast mastectomy (and also lymph node clearance) with no reconstruction. It’s uncomfortable, particularly if you have a drain, but completely bearable. If you have node clearance, there may be numbness in the arm and you’ll have strict instructions about managing your lymph system. Make sure you have several pairs of pjs with button fronts as lifting anything over your head is out for a while! For the first week, I wore a couple of my husband’s softer shirts even though I’m size 10 - roomier clothes you can slip into and do up are essential for a couple of weeks. You’ll probably be going back and forth to the hospital - dressings, drain removal, a final look - and probably feel tired a lot. Don’t expect to be dashing round doing the housework or heading back to work after Christmas - it’s major muscle trauma. You’ll be given exercises that are absolutely essential to make sure your scar heals well and you have plenty of arm movement and then… you move onto your chemotherapy within 90 days. It’s not the best way to spend the Christmas period (I had my first chemo Christmas Eve) but better to get it done!

 

Personally, I haven’t missed my breast at all. The single-breasted me is fine. You will probably be given a softy (boob-shaped wodge) to put in your bra once you can manage to wear one again and you can order knitted knockers from:  kkukciowix.com/about-us. Later, you’ll get a proper prosthesis which feels right (kks are too light a lot of the time) but I’m struggling with the bras as I used to wear wispy things, not great fortresses!

 

Hope you get some HER+ replies to help you. Good luck with what lies ahead. It’s tough in every possible way but it’s all bearable. Take good care of yourself,

Jan x

Hey Carol

 

Wanted to let you know that I will also be going for left boob mastectomy…mine is on 12th Dec. I was diagnosed 3 wks ao, not sure what follow up treatment is as yet, will find out after surgery. I can totally relate to how scary it feels, for some reason a cancer diagnosis sounds worse than any other but when you actually look more closely you begin to realise that it needn’t be such a scary thing (just as Jan was saying) not sure about the HER2 as yet, haven’t had results but the thing I keep hearing from all these wonderful ladies is that every journey is diferent and you just have to take each day at a time…so true!

 

I’ve found it super helpful to talk to breast nurses on the helpline and also to use the “someone like me” service they offer…speaking to real women who have come out the other side is really empowering.

 

Sending you love.

 

x

Hi Carol 

 

i am new to this too I was diagnosed on 19th December no words can describe sitting there being told but joining this and reading all of the brave ladies story’s fighting this has helped me heaps so you like me did the right thing in joining. I hope you’re surgery goes well on Tuesday 17th I’m having a left breast maceotcmy straight after Xmas I’m hopeful to get a date on the 18th when I see the consultant.

i read a post reply you had someone saying take button up pjs that’s a useful tip … keep strong ? good luck we have got this ? love Nicky X 

Hi I was diagnosed HER2 positive  this time last year.  I had a mastectomy with reconstruction followed by 18 weeks of chemo and Herceptin for a year, this is due to finish in March 2020.  I also take anastrozole.  Don’t try do too much after surgery just rest, and let everyone run round you and take just small steps at a time.  Life does just seem a round of endless visits to the hospital with blood tests for chemo and heart scans when the herceptin starts oh and don’t forget the bone density scan :relaxed:.  I haven’t had any side effects from the herceptin only the anastrozole which caused some hair thinning and very achy legs but in the grand scheme of things I’m not complaining.  Best of luck and keep positive x

Hello,

 

I had a masectomy in my left breast and treatment for for a HER2 cancer a few years ago. Maybe my experience can help. I had agreement for a trial that involved chemotherapy (I can’t rememeber the combined three) with herceptin. It was massively successful. I had neulasta after each treatment which stimulates growth of healthy blood cells, not everyone is given this, I think it is worth asking for. Because it stimulates your bone marrow it can cause pain the joints but it hugely successful at fighting infections. Treatment is not easy, I remained active at all times but treatment does have an affect - it saves your life but physically it can be demanding. I had pains in my joints, particularly my feet which still seem to have lost their padding, but I had no sickness or infections. I don’t know if that was the neulasta or total combination. Herceptin is a huge advance and we are lucky to receive it.

 

I hope you are doing well. I suspect I have a new cancer in my right breast so may be back with you all more frequently, it does help just to share.