HER2 positive newly diagnosed breast cancer

Hi Billywig I was diagnosed last October with her2 breast cancer. My treatment plan is chemo, surgery, radiotherapy and then herceptin injections for 12 months. 

I’ve finished chemo and had 2 surgeries ( as I had an issue after the first ) I start radiotherapy next Monday. 

chemo treatments are different for different people but mine was 2 lots of chemo drugs carboplatin and another can’t recall name at the moment and 2 lots of targeted drugs. All were given through iv, so I had a port fitted which meant no picc line I would recommend this as the treatment took between 7-8 hours each time to get it all in and then sometimes they would have to give me additional meds depending on blood results, such as magnesium or potassium. So you are there a while and the port just makes it easier and also saves your veins. 

im not going to lie, I didn’t have a great time through chemo and it was a difficult time but I know of others who had very few side effects with exact same protocol. So it does depend on the individual. Does your mum live on her own? The worst days for me were days 7-14 after the treatment, I had it every 3 weeks, I struggled to eat and often felt very sick and weak. The antisickness drugs help but also have side effects so work with your oncologist to find the best combo. 

I am through that now and I have had a great response to the treatment with no cancer cells found in my breast or lymph nodes. So even if it’s tough it’s worth it. Even though her2 has a bad rep the treatment is well understood and seems to be effective so try to stay positive. I’m here if you want to ask any questions as you go through this with your mum. 

sending hugs. 

Michelle 

Hi

I was diagnosed with Her2+ IDC last December. I found it, I had had a mammogram the previous January which showed no abnormality. It was 15mm on the scan and had grown to 22mm by the time I had my lumpectomy.  I had for lymph nodes removed - one was confirmed to have small abnormal cells. They failed to gain clear margins so I was told I would need further surgery after Chemo which it was important to start as soon as possible.  I had 6 rounds of chemo, 1 every three weeks. The chemo drugs were Docetaxol and Carboplatin.  I also have Phesgo injections every three weeks which is a combination of two targeted therapy drugs - Herceptin and another.  As well as this I have Zometa infusions which I had every 6 weeks during Chemo.  I have completed chemo but continue to have Phesgo every three weeks for a further year and I will have a zometa infusions 6 monthly for three years. I’ve also had my second surgery and thankfully they achieved clear margins so no remaining cells in my breast tissue.  
I start radiotherapy in the 29th of this month - five treatments over 7 days.  

I didn’t lose my appetite through chemo - I was starving - I could still smell delicious food cooking but it tasted dreadful.  I lived on ice cream, cold milk, bacon, white fish cooked as curry or chilli

Bread And potatoes were especially disgusting and the texture of chicken was really difficult to eat. My taste completely recovered 8 weeks after my last chemo treatment

I do feel there is light at the end of the tunnel.  Everyone has been amazing, my treatment package must have cost a fortune and I am so grateful.  I’m hoping a few weeks after radiotherapy to be back to normal.  I’ve missed swimming and going to the gym - which I refrained from to avoid picking up infections and as a nurse, I want to get back to full time work with all of this as far out of my mind as possible.

It is a long road but necessary.  The side effects can be a pain but worth it in the end. Good luck, stay strong, they will look after you xx

p.s.

I had a picc line and would highly recommend it.

Thank you both for your replies. I am so sorry that you are going through this but also happy for you both that you both seem to be doing well.

 GloriaJ - would you know what grade your cancer was at diagnosis and how long was it between diagnosis and lumpectomy? (Of you don't mind me asking).  I work in health care too but this completely threw me off.  I hope you get to return to your nursing job!

• Hi Billywig  I was diagnosed with Her2 in 2019. My treatment was slightly complicated by COVID coming at the end of my chemo treatment. I was approaching 70 when diagnosed so a bit older than your mum. Have a look at my profile. My younger daughter was very supportive. As soon as I told her she came to all my medical appointments and sat through my chemo sessions. She was invaluable and was why my hormone positive diagnosis which had been overlooked by the medics was treated and continues to be treated by aromatase inhibitors. The treatment is doable especially surrounded by caring family. In a way post treatment has been more trying in that aromatase treatment (oestrogen reducing medication) has caused weight gain and exacerbated osteoarthritis. Also my feet are stiff and I now take 2 sizes bigger shoes. I strongly advise using dark protective nail varnish and probably chilling feet. I am looking forward to giving up the aromatase medication next year and have recently started aqua aerobics which is great. I have had no cancer since my mastectomy in 2020. Good luck to your mum x

It was grade 3.  I was diagnosed on the 6th of Dec and had my op in the 2nd of January.  I think it may have been sooner but for Christmas.

Thank you.  I will get back to work, I’m hoping no later than the end of September.

I hope everything goes well xx

Hi Billywig

I felt something was wrong in my left breast last September. I eventually got to see my GP (any patient has to fill in various online screens with symptoms then you get an online reply and the online thing is only open working hours so it was hard to complete the form  when I kept being interrupted at work ) 

I told the GP that I had a firm area in my breast and that I was swollen and in pain. She told me when she examined me that it couldn't be cancer as cancer doesn't hurt and that the swelling was an infection. She gave me 2 weeks antibiotics and true the swelling went down but the firm area was still there. Thank heavens for the mammography screening letter that popped through my door. I went to it and the wonderful lady who did the screening pushed the results through to the hospital when I told her what I feared. Various tests/biopsy etc showed HER2 +. This was 13th November 23. I was ok initially as they talked a lot about 'curative intent' so I thought treatment all done and dusted in a year and then back to work as if nothing had happened. I know now that it is a long journey but all the medical staff I have met have only wanted the best for me apart from my Breast Cancer nurse who badly let me down, was non -existent etc so that's the only part I did not find worked well -  the Hospital website promises a lot but delivers very little but I have learnt to find my voice at 60 and speak up for myself if I don't understand or am not happy with something. Your mum is her own best advocate or be the advocate for your mum.    

My first chemo was 18th Dec 23 and although this was a week before Christmas, I thought as it was a cancellation I should grab the opportunity. I didn't think twice about doing Chemo as I knew it could save my life.

I had 4 cycles of Docetaxel (given 3 weeks apart) and then 4 cycles of Epirubicin Cyclophosphamide 3 weeks apart. With the Docetaxel I had Phesgo as well because I was HER2 +. I was not given it with EC as they are not to be given together,  The Phesgo was given by injection into my thigh and the Chemo via a cannula.  I did not want a PICC as I was worried about how I would look after it but I know that ladies who have had one are pleased that they did. 

Side effects of chemo for me were constipation (which I think was one of the anti sickness pills I was given but cant be sure ) diarrhoea sometimes, hair loss ( I lost all of mine but its regrowing slowly and I used to have shoulder length hair) the most upsetting thing for me about this was being stared at especially by other women who were not in the chemo ward so I learnt to avoid looking at people. I know of other ladies who have not been bothered by this but mentally I found this hard. I tried 2 wigs but could not bear to look at myself looking like I used to before I was diagnosed but others swear by wigs. I wore a soft beanie type hat but mostly to keep warm as its very cold being hairless. I also had lots of taste changes and still cant eat some foods (broccoli, cauliflower etc) without feeling queasy. Even water was hard to swallow as it tasted of metal but things are better than they were.

With chemo I also lost my finger and toe nails- my fingernails are back now but my toenails are slowly regrowing. This is not to scare anyone but the knowing what might happen helped prepare me. The side effects showed me that chemo was working.

My hospital tends to give chemo first to shrink the tumours - mine was 28mm before doing surgery and then at surgery time it had shrunk to 18mm and then Radiotherapy. I am now 3 weeks today past having a lumpectomy and am waiting for Radiotherapy to start.

This journey can be hard but keep going. As someone said scars fade, hair regrows ..........

We all have different experiences even if we have the same type of cancer. I thought I would meet the same people as patients going on the same journey but I never saw the same person twice. The chemo staff though stayed the same - patient, caring and so compassionate.

To say that a diagnosis of breast cancer changed my life is an understatement but I will soon be on the next stage and life will be different but good in a different way ..Every day I say a silent thank you to all those whose experiences have helped the treatments I have had just as my experiences I hope will help others.    

Take care hugs to you both x

Hi Billywig 

If you click on my name and go to my profile you can read my treatment story from diagnosis .

In short callback from final  mammogram age 70 because of calcifications after further test etc was told both invasive and non invasive Bc .

had Masectomy  8 days later followed by news that I was HER2 + chemo x 6 then Herceptin x 18 along with bisphosphonate bi annually. 
My chemo was EC x 6 I have inflammatory bowel problem so instead of changing after 3 , I  remained on EC . For me chemo was not as bad as my imagination told me it would be . Remember when mum is given list of possible side effects it doesn’t mean she will get them all and certainly not all at once that would be greedy ! 
My tip would be keep a diary of side effects it’s a cycle of 21 days usually and a diary allows you to see when the good days arrive then you can make plans . My body used to start a recovery from day ten so after second cycle I went to our caravan an hour and half away knowing that if needed ( risk of infection ) there was a hospital nearby 

if you look on chemo thread there used to be a helpful tip list to make it more comfortable any questions feel free to ask 

As you can see still here a 5 year Neddy just waiting for official sign off letter 

won’t lie it’s not easy but it is def doable . Like most people the awareness does not go but does drop back .

Hi

i am a similar age to your mum, I am 61. I found my lump in early April this year. I had a lumpectomy and breast conserving surgery and a reduction in my my other breast at the same time, that was at the end of May. When I was diagnosed and following the biopsies taken at diagnosis I was ER/PR positive and HER2 negative invasive ductal, 30 mm. When they removed the lump, the final histology was HER2 positive. This meant I would have to have Herceptin which has to be given with chemo. I had my first chemo on Monday. I am on 3 cycles of EC ,1 every 3 weeks. Followed by 3 cycles of docetaxel, at which time the Herceptin will start to be administered. I will have the Herceptin for a further 12 months, an injection in my thigh. I can best describe as feeling as if I have a bad hangover at the moment, but I am only 2 days after my first session. My appetite is not very good. I have been sent home with anti sickness meds, which are working, steroids for 7 days and to take paracetamol if needed. I have a PICC line fitted. My first session was 4 hours but they were short staffed!

Hope this helps. Best wishes to you mum. 

1. Hi, I was diagnosed in June 2022 aged 72 with IDC stage 3 ER+ PR+ HER2+.  Had 6 rounds of chemotherapy + phesgo injections , surgery, lumpectomy and axillary clearance,  one positive node, 5 rounds of radiotherapy then 14 rounds of kadcyla. Apart from a couple of days spend in bed due to chemo I coped very well. I have had one routine mammogram in January this year and my final zolandronic Acid infusion is due in October.  Have booked flights to the US to visit Mt son in November so have everything to look forward to.  Have had a fairly positive attitude from the start once plans were in place.  So much easier once you know what will happen.  Wishing you and  your mum the very best. Xx

Hi Billywig

I was diagnosed with grade 3 invasive ductal carcinoma HER2+ in Oct 23 at 53.  I had a lumpectomy in Nov 23 and all my lymph nodes removed. Started chemo on 12th Jan 24. Had 4 rounds of Epirubicin Cyclophosphamide every 2 weeks followed by Pacletaxol also every 2 weeks. I though chemo is hard it is doable you just need to just deal with only what you need to day by day. That is the way I managed it. I cold capped through chemo which wasn’t pleasant and after I finished all my chemo I  had a lot of shredding so decided to shave my hair off. But 3 months on and I have over an inch of hair that has come thick and have a chemo curl! I would recommend cold capping as it does grow back quicker than without it but it does take some getting used to. EC I was told was the harder chemos of the 2 but personally I found Paclitaxol worse but that could be that I had it last. I had a lot of rashes on Paclitaxol but was given steroids to help but this can lead to other issues such as sleep issues. Even though with Paclitaxol and the cold cap it meant my infusions took longer they gave me so much antihistamine I slept a lot. I also had a PICC line. I didn’t want it but the waiting time for a port was too long and after having my first 2 chemos via a cannula my veins got very painful so had no choice. My veins are still not good. In hindsight I would have jumped at the PICC line straight away. Although it means more visits to the hospital for line care it makes chemo days so much easier.

i followed chemo with 10 rounds of radiotherapy which I personally found ok. Used the cream they gave me and 3 times a day and I breezed through that.

In the last month I have now started on 10 years of Letrozole, 3 years of Prostap injections and 2 years of Abemaciclib (targeted therapy)

I found the last month quick hard but just a blip while my body gets used to the new regiment of drugs

wishing you both well with your journey x