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 āconsideredā along with other results. My tumour was stage 1/grade2. You rarely hear about people not having chemo/herceptin for HER2+ so itās 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 donāt know if that is 100% true but Iām 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 didnāt 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 havenāt 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 ābigā appointments.
However, after several traumatic experiences with needles over the last 2 weeks, Iām now the proud owner of panic attacks after every stabbing!! Didnāt see that one coming! Heheh!
So Iāve opted for a PICC!
It made me laugh about the hairā¦ thatās exactly what I imagined when he said it grows back weird on Doce!
Hope youāre all doing well! Xxx
@naughty_boob Thanks for the survey link. I will do that as I love this website. Itās been a lifeline, it really has.
@sue2 My diagnosis letter said my DCIS was 8mm which then became 39mm after theyād 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 ābe calm but pushyā. Donāt 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 wonāt regret the PICC. I have a port in my arm and itās fantastic. You just donāt 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!! Iām going to be terrified to touch it! Heheh! Iāll be thinking of you!
My husband and I were laughing because initially I didnāt want to take the Diazepam because of the letter of side effectsā¦ I was getting anxiety over the anti anxiety meds 
The mindfulness has definitely helpedā¦ having a positive attitude and trying my best to not always jump to the worst possible conclusion helps! Thanks for your suggestions 
Iāll keep you posted xx
Hi Sue2,
I donāt 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 Iād introduce myself as Iāve read through this thread and found it useful to see what you are all saying! Iām 36, HER2 positive, was diagnosed last month and started chemo on 17th April. Iām on EC-T 8 cycles 2 weeks apart then have surgery then radiotherapyāŗļø Iāve 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 Iāll let you know how I get on!
Hi @belle1 Iām not HER2+ but wondered if youād like to join the April chemo starters group? Thereās 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 tooāŗļø
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. Hereās 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 whoās had a similar experience to you. Theyāll 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 Fridayās 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. Thatās 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 havenāt done it for a while but itās really solid advice for anyone starting out on this journey.
@belle1 WELCOME! Iām so glad that our merry band have proven helpful to you. Itās 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. Thatās a bit pants being diagnosed at 36. Yeah, I know BC doesnāt discriminate but still. I got the heartburn on EC. This Paclitaxel Iām 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, itās 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 Iāve got those patches above my ears going on now as well. I ordered a pink and lilac wig today. If you canāt do it now, then when can you?!
XXXX
@salbert thatās interesting about your hair! Lol once I get this heartburn under control Iāll be very happyā¦. Hopefully it is just till I go on Docetaxelš¬ theyāve doubled my dose of the omeprazole today as still having it constant (just not as bad) so fingers crossed it works. Iāve also developed chemo acne too now. Yeah it was a shock but Iām just glad myself and my husband had already decided we didnāt 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! Iām just glad Iām otherwise quite fit and healthy and Iām focussing on keeping moving when I can to hopefully bounce back quicker at the other sideš PS I love food too!!! Once everything tastes normal again itās going to be awesomeš
Oh chemo acne too?!! It really is the gift that keeps on giving, isnāt 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 couldnāt leave it, but other than that, Iāve managed to keep exercising.
Itās good that you knew you didnāt 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.
Yesā¦agreed. Tasting food again is going to be awesome. That really is the word for it. I dream of Pad Thaiā¦
Thatās encouraging to know that youāve been able to keep exercisingš haha funny how animals get away with so muchā¦ theyāre just too cute!
Ladies the conversation is another reminder for me that each of us has different responses and experiences on the journey. I manage to keep working, albeit 99% was from home throughout chemo & other treatment - just a short while off for Christmas straight after surgery, but exercise, well that was a totally different matter - I really struggled to drag myself into that.
Even now, with all the main stuff behind me, Iāve had these 2 horrid infections and made all sorts of excuses up about not wanting to cough over others and, maybe I caught them at the gym or swimming pool! 
.
Iām going to a Maggieās Where Now course. This week will be week three and I highly recommend it. Not everyone in the group has had BC, there are people recovering from treatment for other cancers too, but Iāve made new friends and we laugh and cry together with loads of empathy because weāve all been through something similar. We always end with 40mins of Pilates like stretches and exercises from a lovely instructor. Only trouble is we werenāt warned and the first week no r of us were that suitably dressed for such floor rolling and leg waving!
They teach you all that stuff about small targets and changes, and how to fit things in around an already busy schedule: thatās how itās come to be that I now clean my teeth standing on one leg to help improve my balance! My husband thinks itās hilarious.
Do think about it when you get to that stage. The course I mean, not necessarily standing on one leg!
Getting serious again, has anyone seen anything about support for those who receive a cancer diagnosis but are themselves carers?
@suedot I definitely want to do that course towards the end of this year. I didnāt know you got Pilates as part of it. I hope you do at Maggieās at Sutton Royal Marsden. Those courses are so excellent.
Today I have a free Reflexology session at the East Surrey MacMillan Centre. There is some incredible stuff on offer.
I think I will start cleaning my teeth on one leg with immediate effect!
Iām afraid I havenāt heard of any support for carers when they themselves get a cancer diagnosis but itās a very good point. My parents are both in their late 80ās and my mother is full-time carer for my Dad. I look after them a lot of the time although I am not an official carer. Every time my Mum gets a health issue it worries me, because I donāt know how I would cope whilst I am going through cancer treatment myself. If there isnāt support in place for people in that situation, then there really should be.
xx
@suedot thanks for mentioning that course - I hadnāt even heard of it and it sounds greatāŗļø I canāt work at the moment for a number of reasons as my job isnāt the best to work around treatment etc so Iām using exercise as my focus and to help add structure to my days. To be fair Iād have avoided the gym too but with covid we turned our garage into a gym so I have no excuseš
@belle1 PLEASE book yourself onto the Look Good Feel Better Skincare and Make-up Workshop. Itās amazing as you not only meet a load of other women going through this but you also get the most incredible goodie bag! Really high end stuff. Itās a lovely perk. Skincare & Makeup Workshop - Look Good Feel Better : Look Good Feel Better
I also did their online Wigs, Brows and Lashes one and learned so much. It was there that I got the link to my beloved Beanie Hat with Hair.
Also, yesterdayās Reflexology at the MacMillan Centre was lovely and relaxing and it definitely gave me more energy as I was singing and dancing to Radio 2 in the kitchen whilst making dinner last night. I havenāt done that for ages. They have booked me in for another, and for reiki AND for a massage. Amazing!
So get booking!!
XX
Oh and really great that you have a gym in your garage but remember that if you do feel like a few duvet days then you absolutely must have them and to hell with exercise!
@salbert Iām booked in for the make up one on 13th May so itās good to hear good things about it!
That sounds fab about the reflexology and itās great that you felt so good after it! Itās nice to have something to perk you up a bitāŗļø
Donāt worry Iām definitely listening to my body and Iāve taken things down a big notch but when Iām feeling good itās nice to have the option rather than go near other folk at a gym and catch the bugs going roundš·
Just got a phone call with my genetic test results - negative!! Soooo happy and relievedā¦. at least I know itās just plain old bad luck now and wonāt impact on my family 