Hi all, I was diagnosed last September with a 15mm stage 1 grade 2 HER+ er+8 pr+8, no lymph node involvement. Had lumpectomy but was advised by my oncologist that as statistically having chemo and Herceptin would only benefit me by 3% and weighing up all the side effects including I was told would definitely loose my hair just to have radiotherapy and letrozole. I am now worried that I really should have had the chemo and Herceptin. Has anyone else opted not to have it?
Hi @sue2
As I had lymph node involvement, chemotherapy and Herceptin were a definite for me. However, I was told that if I hadn’t had lymph node involvement then I would have just had surgery and radiotherapy.
I was HER2+ but hormone negative.
Are you able to get a second opinion at all? I was not happy with my original team so I switched to Royal Marsden.
I would also recommend calling the number on this website as the Breast Cancer Now nurses are really helpful and knowledgeable. They may well be able to put your mind at rest.
Salbert x
Hi @suedot
I’m on Herceptin and the information I was given states that it can lower your immunity. You have two antibodies in Phesgo so would possibly explain the cough and cold and taking longer to get over it.
I’ve just had my Covid spring booster and was eligible for the Shingles vaccine 2 parts 2 months part (most people have them 6 months apart but was advised I’m still consider immune suppressed- chemo finished in December).
Take care 
Thank you, thats really helpful. I have a phone appointment in May so will try and get more information then🙂
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Great news that you’ve started the Paclitaxel and that you feel so much better than with EC. The chemo is cumulative so over the weeks it will take more of a toll.
I had 12 weekly Paclitaxel and the first 2 weeks were ok, then I had an allergic reaction, 8 weeks got infection, ended up in hospital for 6 days, reduced dose again for last 4. Don’t panic, just a warning that you could feel worse. It may not be the same for you.
Take care
Welcome to the group.
How are you doing? Did you get your treatment plan?
Hopefully getting your plan will ease some of your worries.
We are all here for you. Check out some of the chemo starter groups as I found then really helpful to read to get a feel of what to expect on chemo (even though there are many different regimes)
Here are some useful links from BCN, maybe checkout the younger women’s group.as well.
- Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
- Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
- Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
- Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
Thinking of you
Hi Sue2,
I can relate to your message; I was diagnosed in June 2021, 9mm IDC, stage 1, grade 2 and 40mm DCIS. No lymph node involvement or vascular invasion. I had a mastectomy and prescribed Letrozole for 5 years. When I had my histology results, they were still waiting for the FISH test to determine whether I was HER2+ or negative. They said they were expecting it to be negative and even if it was positive, they wouldn’t change the treatment plan of just Letrozole after my mastectomy. The FISH test came back a few weeks later as HER2 positive. I was very anxious about this as everyone you read about seems to have chemotherapy/Herceptin for HER2+. I had 2 second opinions and query it every year at my annual check and go through it all again. I endlessly trawled all the forums and came across a few others who were in the same boat and equally as anxious! I was very worried I was being undertreated and struggled to take on board that being overtreated would not be in my best interests. There are so many others factors that are involved in making the treatment decisions though. I was 57 at diagnosis and now I’m 60. My last mammogram at Xmas was clear which marks 2.5 years since diagnosis. I think it’s definitely worth getting a second opinion even if it just gives you more peace of mind. x
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Hi @sue2
Welcome to the group.
I am bi lateral (both) with no lymph node involvement grade 2 2cm er+ HER2 + and grade 1 9mm er+, I have had lumpectomy, chemo with Herceptin (I’ve had 11 out of 18) zoledronic acid and Letrozole.
I also thought everyone with HER2+ would have chemo with Herceptin. I was 54 when diagnosed. I would contact your team and ask for clarification or ask for a second opinion.
I would also suggest calling BCN nurses for their advice.
- Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
- Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
Trastuzumab (Herceptin) | Breast Cancer Now.
Take care
@MoonAndWaves that’s interesting to hear that you also were just given the surgery and radiotherapy. One thing I am learning is that different Health Authorities and consultants do things differently from each other. I am so glad I switched as another thing I discovered last week is that at Royal Marsden they do chemo before further surgery for HER2+ cancer that has reached the lymph nodes. My original team were still doing more and more surgeries and my consultant would not agree to move onto chemo. Again, REALLY glad I got a second opinion and switched. I’ve been told by my current consultant that there is no rush to do the surgery as all I have left is DCIS which may be dealt with by the chemo. So glad to hear that you are clear 2.5 years after diagnosis. Great news!
@sue2 That is heartening that MoonAndWaves had a relatable experience and is clear 2.5 years later. But still, second opinion cannot do any harm.
@naughty_boob You are always the best when it comes to having the relevant info to share. No wonder they made you a Community Champion. I was hoping you’d provide all that! 
I’m prepared for the Paclitaxel to get harder. I really hope I don’t have to go through what you did, though. That sounds horrendous. I’m determined to have my Eurovision party though. Even if I have to do it from my sofa! I actually went to Liverpool last year and it was amazing. It’s the same 4 of us every year and I can’t bear the thought of missing it. I’ve been hooked since Save Your Kisses For Me so some of you will be able to work out exactly how long this obsession has been going on for!
@hhad How are you doing?
This time tomorrow they’ll be putting that horrid cold cap on my head again. 
Still, I have hair. I’m looking a bit like Paul Whitehouse when he is one of the Old Gits in the Harry Enfield show but I’m clinging on!! Every day takes me nearer to early July when I can grow it back again. I’ve attached a pic for reference.
Love to all my buddies,
Salbert
Thank you for commenting. It must be a relief to @sue2 that you were in a similar situation and remain clear 2.5 years later.
Take care
Hi @salbert
I had to look twice at that photo 
You’re doing great. It’s so good that you got that second opinion. BCN have a service pledge and work with trusts to improve services for patients. They talk to patients and healthcare professionals and put in place a plan for improvement. They also follow up the trusts to see how it’s going. Hopefully with all their great work there won’t be a post code lottery.
Take care🥰
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Hi all
BCN are running a forum users survey, if you have the time here’s the link
Thinking of you all
Hi,
Thank you and I hope @sue2 gets the answers she needs. I was originally told I was HER2 neg, then as more tests were done, I was borderline and not until weeks after my histology meeting they finally said it was HER2 positive. I was extremely anxious as I had done a lot of research about bc in general and knew this was a particularly aggressive aspect. The NICE guidelines suggest if HER2+ tumour is 5mm or less with no node involvement then chemo is not considered necessary and if the tumour is between 5-10mm then it can be ‘considered’ along with other results. My tumour was stage 1/grade2. You rarely hear about people not having chemo/herceptin for HER2+ so it’s easy to go down a rabbit hole, assuming you have been forgotten about and undertreated. I did read if a recurrence happens with HER2+ it will most likely be between 2-3 years after treatment. I don’t know if that is 100% true but I’m hanging on to that. I was also ER8/PR8 though so I guess we are never out of the woods. All the best to you xx
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Hi,
Thank you for your kind words. I actually didn’t even have radiotherapy as I had a mastectomy and then straight on to Letrozole. I totally agree with you about getting a second opinion; you really have to advocate for yourself; I certainly made a lot of noise! Wishing you all the best xx
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Thank you for all of the advice. My cancer was 6mm on diagnosis but my treatment letter shows a 15mm so did it grow that fast in 6 weeks? Stage1 grade 2 HER+ ER8 PR8. I feel I got very little advice or information from my consultant who seemed more concerned about the amount of alcohol I drank( which by the way was not that extreme ). He mentioned chemo and Herceptin but pretty much dismissed it in the next sentence as not really worth it. I have a follow up appointment with a nurse specialist on 10th May so gave many concerns to raise. Think it would be too late for chemo and Herceptin now but am scared I haven’t been given the best chance of beating this .
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Aww thanks so much for thinking of me!
I did! Chemo first, then surgery with reconstruction then maybe radio.
I had my first oncology appointment yesterday so I will be starting 6 rounds of docetaxel and carboplatin with phesgo every 3 weeks. Hopefully starting in the next 2-3 .
The anxiety has definitely calmed down a little and even better now I know the chemo plan! The GP was great and prescribed diazepam which I have just taken before any ‘big’ appointments.
However, after several traumatic experiences with needles over the last 2 weeks, I’m now the proud owner of panic attacks after every stabbing!! Didn’t see that one coming! Heheh!
So I’ve opted for a PICC!
It made me laugh about the hair… that’s exactly what I imagined when he said it grows back weird on Doce!
Hope you’re all doing well! Xxx
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@naughty_boob Thanks for the survey link. I will do that as I love this website. It’s been a lifeline, it really has.
@sue2 My diagnosis letter said my DCIS was 8mm which then became 39mm after they’d gone in during surgery. I think it changes as they discover more. A great piece of advice I was given by a medical friend is ‘be calm but pushy’. Don’t just accept what you are told. Unfortunately it seems it is a case of she who shouts the loudest. Write your questions down and make sure you get satisfactory answers to them all. We have to advocate for ourselves.
@hhad Thank heavens you got some Diazepam. Lovely stuff!! So glad you have a chemo plan in place. You won’t regret the PICC. I have a port in my arm and it’s fantastic. You just don’t feel a thing. Keep us posted.
I have to wash my hair now. I only do it once a week. Pray for me!! 
Salbert
xx
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Ahhhh good luck!! I’m going to be terrified to touch it! Heheh! I’ll be thinking of you!
My husband and I were laughing because initially I didn’t want to take the Diazepam because of the letter of side effects… I was getting anxiety over the anti anxiety meds 
The mindfulness has definitely helped… having a positive attitude and trying my best to not always jump to the worst possible conclusion helps! Thanks for your suggestions 
I’ll keep you posted xx
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Hi Sue2,
I don’t think they can really know for sure the exact size of the tumour until after the histology. I actually went the other way and was told initially the tumour was 15mm, but when they had the results it was 9mm. I wrote all my questions down and took my time making sure I asked them all and I also recorded all my meetings; when I was diagnosed, Covid restrictions were in place so I went to all my appointments on my own. I really struggled to remember anything so started recording them which really helped. Everyone I saw was fine with this. I really hope you get the answers you need and peace of mind. xx
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Hi everyone! I thought I’d introduce myself as I’ve read through this thread and found it useful to see what you are all saying! I’m 36, HER2 positive, was diagnosed last month and started chemo on 17th April. I’m on EC-T 8 cycles 2 weeks apart then have surgery then radiotherapy☺️ I’ve just had one cycle of chemo so far and have not been as bad as expected (although had really bad heartburn!!) and am trying the cold cap so I’ll let you know how I get on!
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