HER2positive !!!!!!!

two weeks ago biopsy confirmed cancer and had already spread to lymphs. Appt with oncology to discuss treatment. Wasn’t expecting to find out that they were still waiting for one test result. Anyway appt was all very positive (still didn’t know last result) I came away feeling quite positive just waiting for a date for ct scan and chemo start. My world took another blow they phoned after we got home result in HER2 positive! I went into meltdown again. treatment wasFEC now FEC-T. I’ve decided I don’t want to know results of ct scan - don’t think I can take anymore, so I’ll continue in ignorant bliss…hopefully. Don’t think I’ll ever feel like ‘me’ again. I know I’m going to have to give myself a good talking to and try and get off this ‘pity potty’. Just so angry at the mo

 

 

 

Susie you are allowed to feel angry at the world, just when you think you have your head around what’s happening to you something else is thrown in! You will calm down but you have to go through the emotions a diagnosis brings with it so don’t be hard on yourself, try not to allow yourself to think too far ahead, break it down in to stages and deal with one at a time , it’s the way most of us get through this, it’s far to over whelming otherwise. You will find masses of support here and if you look on the chemo thread the lovely ladies will be able to answer any questions and hopefully reassure you that you will deal with this! Xx Jo 

Hi Ruby1
I have also been diagnosed with breast cancer HER2 positive and due to start chemo next week, can’t come sooner (never thought I’d say that!) - can I just ask, were you treated with herceptin too?
Loolyboo xxx

Hi Susie,

 

Please don’t worry about being HER2+.  It means there is an extra category of drugs in your arsenal to fight the cancer.  Although HER2+ cancer is more agressive, research has shown that if you have a course of herceptin then your chances of the cancer returning are no worse than for someone who isn’t HER2+.  So the main issue is just the extra treatment, so it’s that much longer before you can move on.  It has few side effects - it’s not like chemo.  Be aware that you can get quite tired on it after several months, but this goes away afterwards. 

 

To cheer you up - I was diagnosed in 2007, grade three, in lymph nodes, had herceptin throughout 2008.  Today, nine years on (in fact I have only just realised, writing this, that I have been cancer free for nine years - yesterday was the anniversary of my mx and I hadn’t even given it a thought) I am fit and well.  The only other person I know who has had herceptin (know personally, rather than through forums like this, and knew before diagnosis) was diagnosed two years before me, was one of the earliest women to get herceptin for primary cancer (prior to that it was a treatment for secondary cancer only) and is also fit and well today.  I think we are really lucky to have had herceptin.  I have watched my children go from all being at secondary school, to seeing two of them graduate and the youngest turn 21.

Hi RoadRunner
I have just read your update here and it has given me a boost of well needed positiveness! :slight_smile:
I was diagnosed on 13th Jan this year HER2 positive, had WLE 3cm tumour & lymph nodes removed 0/11 just 4wks ago, recovered very well from the op.
Will start chemo next week after my appt with oncologist tomorrow, followed by herceptin & radiotherapy.
I’m just wondering did you have a WLE before your treatments followed by a mastectomy?
I only ask because I am desperate to have a mastectomy even though I had a WLE with clear margins - don’t think I could live without great levels of anxiety knowing that it could reoccur in the same breast :frowning:
Thank you for listening! :slight_smile:
Loolyboo xxx

Hi Ruby1
Thank you for your reply, I was destined to log onto this site today and read these posts ?
Loolyboo xxx

Hi Susie. I was diagnosed grade 3 invasive ductal carcinoma and DCIS plus HER2+ on 21st Jan. Had WLE and SNB on 17th Feb and go back on Monday for results. Hoping for clear margins and lymph nodes all clear. I will then start chemo followed by rads and herceptin like you. Will be good to be able to chat to someone who’s at a similar stage in the journey to me (if that’s OK with you). Helen xx

Hi Susie

I had a very large 7-8cm lump plus it had a friend in my lymph nodes and im Her2+ ive had 3xEC and up to now 8 of 12 paclitaxel plus 3 of my 18 herceptin, my lump has shrunk loads I cant even feel it and my onc and surgeon are both positive that after chemo a mastectomy, full lymph node clearance and herceptin for a year they will have got the b**ger . I like you I was dreading my CT scan and I cant tell you to worry but I can say with how big my lump was and even with the one in my nodes my scan was clear

My oncologist used the word melt and wonder drug about herceptin and it was true since starting herceptin in Jan my lump just shrank loads faster and a whole year extra of it should mop up anything else tiny as it will be do with yours x

as Jobey says take one step at a time at the mo eacg test, each result dont think ahead and dont worry about a result till you have to x easier said than done but honestly once you get into chemo/treatment it all seems a bit easier because you are doing something positive to get rid of it

Love and hugs

Jen x

Hi SusieQ,

 

Just came across you thread as I’ve got back from the hospital today. I feel as though I’m in a similar position as yourself. I’ve was diagnosed on 5th April with grade 3 invasive  cancer. At only 33 and having seen my mum go through it all 6years ago (breast cancer too) I was totally beside myself. Having come round to it and knowing that it’s totally treatable, finding out the results of certain tests is like a step back sometimes. The info can be overwhelming, a lot to take in and scary. I’ve also been told this week that its HER2+ and some lymph nodes are affected. I just wish they could cut it out and be done with. But true, as you say ignorance is bliss and sometimes I have to be just so I don’t send myself mad! Being at work (office based) has been a massive help, it’s brought normality and kept my mind off of it at times. Reading all these lovely ladies’ comments though has also been helpful. I too has been told that I will have to take FEC-T, 3 courses of each before surgery. Then go on Herceptin and Tamoxifen. So daunting but I kind of can’t wait to get the ball rolling

 

xx

SusieQ I was devastated by grade 3/HER2+ diagnosis & read depressing things on the net until I came across a very recent presentation by a leading cancer specialist in which he says ‘the era of poorer outcomes for HER2+ BC can now be viewed to be well & truly over’. Turns out all the other articles were a few years old & I hadn’t noticed. It went in to say that Herceptin has revolutionised our diagnosis. I am almost at the anniversary of my diagnosis now & went through FEC-T (I actually found the T easier than FEC, as did JenJen I believe & a few others, so don’t panic about that. Taxanes are also 3rd generation chemo, so the most effective thing they have. They get the big guns out for early BC because they are aiming to cure it if at all possible). I have one more upside for you. A lot of women feel very anxious when chemo & radio finish. They feel it could come back once their docs are no longer actively fighting it. We Herceptin ladies don’t need to feel that because we know we are still being protected by Herceptin for another 7 months. I also view the tamoxifen as continuing the fight/protecting me from recurrence rather than as some blo*dy awful thing that has been forced on me for 10 years. I know a couple if ladies in real life who had very aggressive/HER2+ tumours & they are still fine 8-9 years on. Let’s hope we all join them. I do wish you all the very best with the rest of your treatment. xx

Hi SusieQ,

 

My BC was not HER2+ but thought I’d share the following:

 

I was at a funeral of an in-law yesterday and was approached by a lady there who commented on my headwear - I’m almost 2.5 months post final chemo and hair is growning quickly but I’m waiting for it to be a bit more glam before I reveal it to the world! Anyway, It turns out she had just celebrated her 10th anniversary free of her HER2+ BC. She was one of the first people to get Herceptin as a standard part of her treatment. Despite the fact that it was her mother’s funeral and a very sad day for her she was so full of life and encouragement. She’s had few lasting issues post-chemo, never had any lymphedema problems and looked fantastic. 

 

It really gave me a boost talking to her and I hope by sharing this it will give you some encouragement too. I hope things are going well with your treatment. 

 

Ruth xx

Thanks for all the positive comments that’s made me feel good. I had Grade 3 HER 2+ surgery took the cancer away now awaiting appointment for chemo.
Lou x

Sorry to ask but has anyone read about herceptin without chemotherapy? X

Hi
Can I say ill just have 1 round then herceptin?
Xxx

Aliorb well done on your weight loss. That is some achievement missus. You will get through this with an attitude like that. Well done. There are a few trying days, but on FEC most of us felt pretty ok weeks 2 & 3, so it won’t be hard the whole time.  I think it’s easier to put up with if you know there are respites coming in between the difficult bits.  Also putting on weight during this process is not automatic.  I am sure you’re keen to avoid that after all your efforts. You will need to keep an eye on what you eat when on steroids though, because some people had the terrible munchies.

 

Peggycat lovely story. An older lady introduced herself to me in the golf club car park last week.  She had heard my situation & told me she had it in both sides 28 years ago & completely fine since.  I think we all look at the percentages for not ok, rather than the people for whom this is just a short diversion from the rest of their lives.  Glass half full/half empty thing again. xx

Aliorb, good luck with your treatment - I also had chemo before surgery and felt very worried as didn’t know a lot of ladies who had this way around! When I joined the April 2014 chemo thread there were about 12 ladies posting on it- 5 of us had chemo first! It’s very helpful joining a chemo thread as you can support each other as going through treatment- 5 of us have become friends and met up last summer and are doing the same this July too!
All the very best to you . X

I love your “short diversion” metaphor Bibi - I will try to keep that in mind. :smileyhappy:

 

xx

Hi Tina If it’s any help, the Herceptin starts with the 1st T, or P if you’re having weeklies), so usually 4th cycle. If you plan to sign up to chemo then withdraw after 1 treatment & just have H (which I don’t recommend by the way, but I know you are thinking that might work for you) you will need to talk them into T/P only or T-FEC. I just wonder if you only have one chemo if u will get all the downside, incl hair falling out, & none of the upside (getting rid of any stray cancer cells). It’s your decision though. x