Recently diagnosed Her2 positive breast cancer

Hi

Sorry about your recent diagnosis but you are not alone. I was HER2 positive and also ER/PR positive. I had a lumpectomy followed by 6 chemotherapy treatments, 3EC and 3 docetaxel. Herceptin injections were administered during each docetaxel chemo and continued every 3 weeks thereafter. I had 18 in total. They didn’t affect me at all. I also had 9 radiotherapy sessions. My chemo was August to December last year and I had radiotherapy in January of this year. I would say you will definitely be fine by next July. As regards mixing with family etc over Christmas, just be mindful that chemo lowers your immune system so you are more likely to pick up colds etc. I decided to keep my distance…it worked for me! You will have good days and bad days. Take any meds they give you and don’t be afraid to ask for help. Drink plenty of water after each chemo to help flush it out. I am 62 but was 61 when diagnosed.

all the best 

Hi

Sounds very similar to me - stage 1, grade 3, HER2+,15mm tumour plus some DCIS.

I was 61 when i was diagnosed in October last year.

It’s great you’ve had your surgery so swiftly and that your margins were clear - such good news

They will want to wait until at least 6 weeks after your surgery before the chemo starts - in the end with Christmas I think mine started about 8 weeks post my lumpectomy.

I had 12 weeks of weekly Paclitaxel, 3 weekly Herceptin for a year, initially Zoledronic Acid every 6 weeks and now every 6 months and that will go on for a total of 3 years.

When I finished the chemo I had 5 days of radiotherapy

Although it’s daunting, the chemo was nowhere near as dreadful as anticipated. Yes I was wiped out the rest of the day each time I had treatment - and I was pretty low energy for the 3 months, but apart from that my only side-effect was hair loss - and it started growing back pretty quickly once I finished the Paclitaxel

The Herceptin is no big deal at all - I think I’ve got 3 or four of these left to do - my surgeon says this drug is a complete game-changer in terms of addressing HER 2+ cancers

The ZA makes you a but flu-ey the first time but it’s not a big deal - you just need to make sure you get your teeth checked by your dentist before you start. There’s a rare but nasty side-effect linked to the jawbone!

I found the Radiotherapy very easy - though you might see in another post that I think it may have caused some scar tissue issues which we’re just sorting out

So on balance - just go for it. I saw my treatment as an investment in my future. Be kind to yourself, drink lots of water, and get out for even a short walk every day if you’re able

Very best wishes 

Thanks so much for your reply, which I found very reassuring. I've got myself into a bit of a panic with thoughts of the chemo ans uncertainty about when it will start, so hearing your experience has been really helpful. So much to learn in terms of different drugs and terminology too! Best wishes to you for the future

Thanks so much for your reply and for sharing your experience. I'm feeling very scared about the thought of having chemotherapy so hearing stories from people like you who have got through it are so helpful. Thank you 

I have just come across your message and I want to thank you so much because it has really reassured me and helped me to move forward with a decision I have to make next week. 

I was originally diagnosed with a TNBC after my lumpectomy and lymph node investgations. Fortunately the lump was removed with a good clear margin and there was no evidence of cancer in the lymph nodes. Several weeks after my surgery when we went to see the Oncologist at the Christie I was told that it was a stage 1, grade 3 HER2 positive cancer. I have other health issues which had made chemotherapy doubtful and in fact I had been told that it would not be an option.

This week we have been to see the HER2 positive team and they have said that the plan they are offering is one chemo treatment of placlitaxel and then because I had received one dose of that I would be able to have the targetted HER2 positive drugs every three weeks for twelve months. They have also offered the Zolandric Acid treatments to help with my bones.

I was extremely concerned about making the decision to go ahead because the oncology team had felt that chemo was just not suitable for me with my additional health problems and that it could make me very poorly. The HER2 positive team have assured me that they will do a 50% strength first infusion administered slowly yo monitor any reactions and that hopefully the side effects after will be minimal.

Having found your message when I was trying to find some answers I do feel reassured by everything that you said. I realise we are all different and that we will all react differentlly but your course of treatment sounds similar to what I have been offered and I am so pleased I found your message.

I realise that you posted your message 9 momths ago now and I hope that your treatment has gone smoothly and that you are keeping well. Thank you so much 

Hi

its quite fascinating to get your message. I don’t think I’ve been back to this chat in the last 9 months - something I’m taking as a positive in itself as a sign that my cancer treatment really isn’t what I spend my time thinking about these days. 
I’m not sure why you need to have the Paclitaxel in order to have the Herceptin but I was told the same thing. 
the Herceptin is amazing. Virtually no side effects, for me at least, and as I understand it it does a great job of fending off a recurrence. 
Funnily enough I did need some extra tests and surgery earlier this year. Everything was benign, but the radiotherapy had had a bad effect on some of my scar tissue and my surgeon was keen to get it all out

Upshot is I’m even more lopsided than I was and weighing up whether to have surgery to correct it.

My main reason for replying is to say how well I feel. Life really does go on after treatment. And you get past it so much more quickly than I could have expected 

Very best wishes. I’d say if the oncologists think this would be a good solution for you, then go for it

Thank you so much for your reply which has given me more reassurance than you can know because you have been through a very similar experience. It is also really encouraging that you have said life does go on after treatment and that you get past it quicker than you may anticipate. I am 73 years old and hopefully with this treatment life can go on for a good length of time.

I have been quite scared & unsettled at the prospect of this treatment but I think that is partly because I am going into unknown territory but your message has given me a much more positive perspective on things and I am very grateful for that.

The Pharmacist we saw said that NHS England will not give Herceptin unless you have had the Paclitaxel so in my case because of my other health issues they are suggesting a 50% strength dose but only one treatment. This way the box is ticked and they can go ahead with the Herceptin. Apparently if you have the treatment in a Private facility you do not have to have the Paclitaxel. I have been told that the Herceptin does a brilliant job of mopping up any other cancer cells to stop the recurrance of cancer.

They are recommending radiotherapy after the chemotherapy but as yet I haven't seen anyone about that. 

Thank you again for responding to my message and for your encouraging words. I think I will now feel more confident to go ahead when they ring me next week for my decision. All the consent forms are signed but they said they would give me a few days to think and have a discussion with my family.

I hope you continue to be well and send my very best wishes and thanks.

Hi not sure if I've missed something in this chat but I'm currently finishing my NHS treatment of 14 herceptin injections but I didn't have paclitax. My chemo was docataxel and phesgo then EC prior to surgery and I've recently finished radiotherapy.