HER2 positive diagnosis. Oncologist appointment tomorrow

What a nasty shock but please don't worry too much. I was 69 approaching 70 when diagnosed Her2+ . Oestrogen positive added later. The chemo is not pleasant but doable.and the herceptin target drug for the Her+ was relatively easy and very effective. I cold capped and kept sufficient hair to not need my wig. See previous post on cold capping. If you have family let them help, mine were terrific and that really helped I felt cherished through our. Xxx

Many thanks for your reply. What a lovely family you have.

Which chemo drugs were you given?

x

Hi 

Chemotherapy treatment

–Docetaxel (Taxotere) + Trastuzumab (Herceptin)+Pertuzumab (Perjeta).   For 4 sessions of 3-week cycles Followed by Epirubicin  4 sessions 3-week cycles. This was completed on the 4^th February 2020

Various side nasty effects, a couple of stays in hospital but the positives were my daughter came with me to all my chemo sessions, I kept sufficient hair that I never wore the wig I was given (cold cap worked for me), the staff (tea ladies to medical staff)  were so very kind and supportive and my husband took good care of me when I was feeling the effects of the chemo sessions. 

Post chemo target drug/s  Herceptin injections began on the 25^th February. 2020 and went to December 2020

Bear in mind my treatment was chemo before surgery. Things went wrong when the operation due March 24 2020 was cancelled because of covid. I was sitting in the hospital bed waiting when they summarily cancelled it for fear I might have covid which I didn't. I eventually got a double mastectomy in July 2020. I think as well that I probably had larger tumours than yourself. Read my profile if you want but bear in mind your path will reflect your particular situation. My main advice is to try and take someone with you to appointments as they can act as your advocate and also remind you of what is said. When we feel below par and vulnerable we can't always be as assertive as we might normally be. xxx

Many thanks for taking the time to reply in such detail. I'll be finding out tomorrow which treatment I'll be having.

I'm starting to feel as if  I just want to get it over and done with 

 I hope that you are now doing well

Best wishes xx

Hi DD, 

I am very sorry you are feeling like this, I can only say that along with these feelings there will be better days too. I had 6 tumors resected, a mastectomy and reconstruction with clear lymph nodes and because of literally a typo on the block number that the pathologist sent for retesting the HER2 receptors, it was found out that the very edge of the biggest tumour was HER2 positive, whereas the rest of it and the core biopsy before the surgery were HER2 negative and that was the initial diagnosis. No one, including my oncologist, thought that would change. 

I was equally devastated by this unexpected turn of events. I am at the beginning of my journey, just had today my first chemo, which is a bit of an unorthodox regime of docetaxyl and cyclophosphamide for 4 doses and 18 doses (1 Year) of Herceptin, so can't help much with the cold capping questions, but I have opted in for whatever the chances are, I am willing to take. The first session was not too bad, I took paracetamol half an hour before and saved me a headache, my lovely nurse made a headband for the forehead, I just became quite cold over the last half an hour, nothing that a couple of blankets could not fix. 

Mainly, I wanted to convey something that my oncologist told me and I am sure yours will tell you too. The discovery of immune treatment for the HER2 positive cancer has been an incredible game changer for breast cancer; it is very effective and helps a lot with good prognosis. He did put my mind to rest with that.

In terms of options for chemo, there is a consent that is taking place after you have been thoroughly informed about the side effects, complications and alternatives. My understanding is that unless something is considered immediately life saving condition, there is theoretically always the option to refuse treatment, having been fully informed about the alternatives and what that means.

But I think you should be reassured, there is no way your oncologist will not be clear with you as to what they think is the safest option for you, so I don't think that it is really ''our'' decision to make. Of course, I would respect anyone who for their own reasons would choose not to follow the doctors recommendation, again reiterating that this needs to be done after proper and full information is given, explored and retained. 

I hope this is helpful, all warmest wishes for an as uneventful as possible journey of yours. 

Hi ChriBali

Thank you for your very helpful reply, especially on the day you started your chemo journey. 

I was given my treatment plan on Monday with a week to think about it. 

Paclitaxel weekly for 12 weeks, Herceptin every 3 weeks for max 18 cycles and bisophonates for 7 cycles which I can start during chemo or afterwards.

The one that  made me worry is Herceptin, because I am already an anxious person and suffer with chest pains  and was worried about the effect it can have on the heart. That's why I didn't agree to the treatment plan this week. However  after reading the information about all three drugs and  explaining to someone why Herceptin was being offered....  high grade HER2 +  it became clear that  it's a no brainer.

So next week I will be consenting to the treatment and hopefully will start my journey soon.

I hope that you are feeling okay today and continue to do so throughout your treatment

Best wishes D.D

Dear D.D, 

It is a big brave step making the decision and knowing what is the best for us despite all the scary side effects. I am trying to remind myself constantly of that too. 

I have been working with very sick patients the last 15 years and I know there are so many measures and medications that can help with any potential serious problems. By the sound of the frequency of the scan we will need whilst on Herceptin- every three months- and the small chances that something serious will happen, it is very unlikely that we will experience any symptoms from that, let alone serious ones. 

On my D2 post chemo there is only some face dryness and redness that I am feeling, for which I have been using the very nice Jennifer Young products, so far so good, thank you very much. 

Big hugs

Dear ChriBali

I'm so pleased to hear that your day 2 symptoms are mild, and that you have lovely products to use for your skin.

Your message made me feel more positive about the process and with the regular monitoring , medication and  support that will   be available I am hoping that I can put some of my fears to one side. In fact I've taken a screen shot of  your message so I can quickly find it if I feel like I'm wavering a bit.

Looks as if my treatment will  begin in a couple of weeks, in the meantime lots of shopping to do...

Thank you again for your replies

Sending best wishes and  big hugs  to you too x

Hey, I am so sorry you are going through this. I have ER2 PR2 HER 2 breast cancer, I'm currently having chemo, along side hormone treatment for the HER 2. I will then have a mastectomy, this was originally the first plan, but they changed it after the HER2 was detected.

I was offered cold capping, however I suffer from migraines so I have gone without it, as it can make them worse. I think once you know what the oncologist recommends, and talk through what options there might be, you will be in a better place, having a plan always seems to help me, as long as I know that things sometimes have to change, so I go with it.

My hair has started to fall out after my first cycle, but I can feel the cluster of tumors changing and I'll take that.

I wish I could offer you advice, but please know you aren't alone. Sending you love and light xox

Hi Wonky

Apologies for not replying sooner, I thought I would stop looking on here for a couple of days. My mind keeps going into overdrive, so much so that I have decided to see if the doctor will suggest something for anxiety. I've tried breathing exercises and can't get to grips with mindfulness so maybe something short term to calm me down a bit. The waiting for appointments  isn't helping.

I'm sorry that you are going through this too, but good  news that you are noticing positive changes in your tumours.

When I went for my first lumpectomy one of the nurses said she had noticed that in many cases  the initial route that was planned often isn't the one you end up following, how true that has turned out to  be.

Wishing you all the best with your treatment

D.D. xx