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
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🥰
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
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
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 .
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
@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
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
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
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!
Hi @belle1 I’m not HER2+ but wondered if you’d like to join the April chemo starters group? There’s several of us all going through chemo together at the same time, Emma x
Thanks- will have a look and join in with that one too☺️
Hi @belle1
Welcome to the group and the forum.
Sorry to hear your diagnosis. The forum is very supportive.
As already mentioned there is a chemo starters group every month. Here’s the link. I found it great to have others experiencing similar side effects and problems even if on different treatment plan.
Here are a few other links that may be helpful especially the Younger Women together
- 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.
I cold capped with 12 weekly Paclitaxel and kept most of my hair. I had some shedding and two patches above my ears. Probably from my glasses. I wore them for several weeks under the cap until I found out from Paxman www.coldcap.com and Jasmin from www.cancerhaircare.co.uk
Take care and keep us updated
@hhad I am pleased to report that there was not much further shedding at the weekly event of Friday’s hair wash. Also, and this is relevant, I noticed a fine stubble on my legs this morning. 
Dare I to believe that after 4 ECs and 2 Paclitaxels, some of my hair is beginning to regrow? This could be interesting. Love that you got anxious over anxiety meds. That’s when you know you need them!!
@MoonAndWaves Great call re the recording of meetings. I did that too after realising I was only remembering the negatives and forgetting any positives. I haven’t done it for a while but it’s really solid advice for anyone starting out on this journey.
@belle1 WELCOME! I’m so glad that our merry band have proven helpful to you. It’s no secret how much I love and feel I owe to all the amazing women who have come forward and helped, shared and cared on here. That’s a bit pants being diagnosed at 36. Yeah, I know BC doesn’t discriminate but still. I got the heartburn on EC. This Paclitaxel I’m now on is easier and so far (touching wood) I barely have any side effects except absolutely knackered taste buds. 
I LOVE my food. I went to a cafe in Crawley yesterday and had jackfruit loaded cheesy chips and toffee and apple cake. Could barely taste it at all. Absolutely gutted. I know, it’s a small price to pay but I do so miss the taste of food. I still have 10 weeks of chemo to go. Oh chips, chips, chips. When will I taste you again?
@naughty_boob I’ve got those patches above my ears going on now as well. I ordered a pink and lilac wig today. If you can’t do it now, then when can you?!
XXXX
@salbert that’s interesting about your hair! Lol once I get this heartburn under control I’ll be very happy…. Hopefully it is just till I go on Docetaxel😬 they’ve doubled my dose of the omeprazole today as still having it constant (just not as bad) so fingers crossed it works. I’ve also developed chemo acne too now. Yeah it was a shock but I’m just glad myself and my husband had already decided we didn’t want children as the first thing they mentioned after telling me was about freezing my eggs - so I suppose it could have been far worse for us both! I’m just glad I’m otherwise quite fit and healthy and I’m focussing on keeping moving when I can to hopefully bounce back quicker at the other side😉 PS I love food too!!! Once everything tastes normal again it’s going to be awesome😂
Oh chemo acne too?!! It really is the gift that keeps on giving, isn’t it. I have managed to keep moving too @belle1 as it really does help. There were a few weekends after my Thursday EC when I just hit the sofa and couldn’t leave it, but other than that, I’ve managed to keep exercising.
It’s good that you knew you didn’t want children as that takes the whole freezing eggs thing out of the equation. I can imagine that would be one whole new headache. Anyway, there are always fur babies. I am obsessed with my cat. He can do no wrong, which is lucky for him as he is a bully and a pest, harassing me for food all the time. Last night I fell asleep in front of the TV and he woke me up by smacking me on the mouth with his paw! He is lucky I love him so much.
Yes…agreed. Tasting food again is going to be awesome. That really is the word for it. I dream of Pad Thai…