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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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
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Thanks- will have a look and join in with that one too☺️
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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 
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@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
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@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😂
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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…
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That’s encouraging to know that you’ve been able to keep exercising😀 haha funny how animals get away with so much… they’re just too cute!
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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, I’ve 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! 
.
I’m going to a Maggie’s 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 I’ve made new friends and we laugh and cry together with loads of empathy because we’ve all been through something similar. We always end with 40mins of Pilates like stretches and exercises from a lovely instructor. Only trouble is we weren’t 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: that’s how it’s come to be that I now clean my teeth standing on one leg to help improve my balance! My husband thinks it’s 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?
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@suedot I definitely want to do that course towards the end of this year. I didn’t know you got Pilates as part of it. I hope you do at Maggie’s 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!
I’m afraid I haven’t heard of any support for carers when they themselves get a cancer diagnosis but it’s a very good point. My parents are both in their late 80’s 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 don’t know how I would cope whilst I am going through cancer treatment myself. If there isn’t support in place for people in that situation, then there really should be.
xx
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@suedot thanks for mentioning that course - I hadn’t even heard of it and it sounds great☺️ I can’t work at the moment for a number of reasons as my job isn’t the best to work around treatment etc so I’m using exercise as my focus and to help add structure to my days. To be fair I’d have avoided the gym too but with covid we turned our garage into a gym so I have no excuse😂
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@belle1 PLEASE book yourself onto the Look Good Feel Better Skincare and Make-up Workshop. It’s 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. It’s 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, yesterday’s 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 haven’t 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!
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@salbert I’m booked in for the make up one on 13th May so it’s good to hear good things about it!
That sounds fab about the reflexology and it’s great that you felt so good after it! It’s nice to have something to perk you up a bit☺️
Don’t worry I’m definitely listening to my body and I’ve taken things down a big notch but when I’m feeling good it’s nice to have the option rather than go near other folk at a gym and catch the bugs going round😷
Just got a phone call with my genetic test results - negative!! Soooo happy and relieved…. at least I know it’s just plain old bad luck now and won’t impact on my family 
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@belle1 That is REALLY great news about your genetic testing. I am still awaiting my results but I’m so pleased to hear yours. It’s good to know that you can get rid of this one and not have it hanging over your head. The way I see it is that at least the medical profession will keep an eagle eye on us after this. It’s like having the ultimate insurance policy.
XX
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Hi all.
Just wanted to let you all know I’ve also received my genetics results this week. It is negative 
it’s such a huge relief to know that my treatment plan now has an end and that my children are not impacted as much. My daughter is still entitled to earlier screening due to my diagnosis, they advised that she ring the genetics team from age 35 but testing may not start until 40.
Great news @belle1 about your genetics negative results aswell. You like me have set up gym equipment in the garage and house. I already had a few items but added more during Covid and haven’t gone back to the gym since. I don’t miss it, it was so full of germs. I used to clean my equipment before and after exercise as so many others couldn’t be bothered or just wiped it down with their own towel that they wiped their face with 
I think you are amazing doing exercise during your chemotherapy, I managed to walk and tried yoga but it irritated my PICC line so I stopped.
I had a free session of reflexology and it was a lovely foot massage and relaxing. I asked to help with hot flushes, it didn’t help, maybe a I need a few more?
@suedot thanks for mentioning the Where now course with Maggie’s, I hadn’t heard of it. So will be looking into it.
I have booked the BCN Moving Forward course in July and wanted to do it face to face as I haven’t been able to meet many local ladies in my situation. Online is great but I really need to get to know others more locally that know what I have been going through and how I feel. So many people keep saying ‘How well I look’ but inside I don’t feel so great. I got offered some face to face counselling with Penny Brohn but they wanted me to commit to 6 Fridays in a row and I had a holiday booked and hospital appointments within a week of their start date. So I’ve asked them to put me on hold for a few more weeks. Fingers crossed they will come back to me at the end of May.
@salbert is it another infusion day today? How many Paclitaxel have you had so far? Hope you are doing ok?
Thinking of you all
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@naughty_boob I am beyond thrilled for you. That is such good news. It really is.
I’m also really glad that you are doing the Moving Forward course in person as I believe it helps massively to meet other women going through the same as us. I hope you can get the counselling at a later date.
I did indeed have Paclitaxel No. 3 yesterday so I am a quarter of the way through that bit now. I started EC on 22nd February so in terms of dates, I am over halfway through chemo. (Not in terms of sessions though but I like to see the positives!) Still doing remarkably well actually. Long may it last.
I have written a piece about my experience of breast cancer that I posted on Facebook the day before yesterday. I spoke about you lot and how wonderful you all are. The response has been so good that I thought I would post it here too. You all deserve to know how much you mean to me.
Salbert
xx
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The day that you walk into your Breast Clinic appointment and get given a breast cancer diagnosis isn’t actually the worst day. Not for me anyway. D-Day (Diagnosis Day) was 9th November 2023. That’s a date I’ll never forget. You see a MacMillan nurse sitting there with your consultant and assume she is there to sit in on all appointments. It must be a training day or something. Then you discover she is there for you. You get told it’s DCIS (Ductal Carcinoma in Situ) and that it’s Grade 0, but a breast cancer diagnosis nonetheless. Ok, so it’s a ‘good’ cancer, you think. You get taken into a side room after the appointment, where the MacMillan nurse gives you your very own Breast Cancer Pack which you tell yourself doesn’t really apply to you as you will go into hospital, have it cut out, a quick bit of radiotherapy and you will only have to tell a select few. In fact, you will be able to carry on working your three jobs, that’s how little it is going to impact your life. You certainly won’t need to tell your teenage son or elderly parents. Yeah, mental self-preservation in the form of total denial kicked in straight away.
So you go into hospital and about a month later you go back into that consulting room for the results. That’s when your life goes into freefall. That point where they tell you they have found invasive cancer and that it’s an aggressive one. You will need more surgery as they haven’t got all the cancer out and you are no longer Grade 0, you’re Grade 2. They will need to remove some lymph nodes to check it hasn’t spread. That’s when you really shouldn’t Google but naturally you do. You go down some dark and scary internet rabbit holes that take your mind to places that leave you paralysed with fear. This is when you need amazing people around you who know how to constantly talk you round and ground you. I was lucky there. I have an incredible husband and a best friend who lives 2 minutes away.
You go into hospital again and 2 days after Christmas you get told the cancer is in your lymph nodes and that you will need the remainder of the ones in your right armpit removed. Plus which, they still haven’t managed to remove all the cancer so it’s another op on the cards. Yes, 27th December 2023 was the day where despair hit. Now there would be scans to check my vital organs and bones, to see if it had spread. Now there would be chemotherapy ahead. But still, that wasn’t the worst day.
New Year’s Eve was desolate. I just wanted to go to sleep and not wake up until it was all over. Every time I awoke it would be a split second before CANCER – YOU’VE GOT CANCER would hit me smack in the face again. I would oscillate between disbelief and horror but underlying every thought and everything I did was a perpetual heaviness. I’ll always remember the phone call I received from a concerned friend at midnight when I was standing alone in my dark kitchen, listening to the fireworks going off and feeling terrified of what 2024 would bring.
Breast Cancer Now forum became a lifeline. It still is. I set up a thread calling out for buddies going through the same breast cancer diagnosis as mine. (Yes, there are different types of breast cancer and you become an armchair expert about them very quickly.) I was constantly told that the fact finding part is by far the worst bit, where you are left in limbo, not knowing how bad your cancer is and what stage it’s at, which leaves your mind doing battle with itself daily. Everyone tells you to be positive which is absolutely the right thing to do. Actually doing it requires throwing every weapon in your arsenal of coping skills that you have ever learned at it. Constantly. Meditation, exercise, counselling, mindfulness, praying, podcasts and talking, talking, talking.
Next came the scans. CT scans, bone scans, MRI scans; who knew there were so many types? I learned a new word here…scanxiety. The wait for results seemed interminable and every day after finishing working from home I would go walking listening to Eckhart Tolle to ground myself in the now and to stop my mind from taking me to the darkest of places. It was mentally and therefore physically exhausting.
Once more into the consultant’s room on a cold and grey January day. We were allowed seconds to celebrate the cancer not having spread beyond 2 lymph nodes before being abruptly cut off to be told that there were areas of concern in my spine, liver and lungs. Now I would need the mother of all scans, the PET-CT scan. On Tuesday 30th January 2024, my husband and I drove through the rush hour traffic to Guildford on a dark, wet evening, where I sat alone in an unlit room waiting for the radioactive tracer injection to be metabolised. I had an hour to wait which gave me a lot of time to reflect. I had been told that these were red flags. If the cancer had indeed spread to my spine and internal organs then I would probably be looking at 2 to 3 years, not even sufficient time to see my son reach adulthood. That day was bleak indeed. Yes, there was the worst day.
You see, to state the bleeding obvious, it can only go one of two ways. One of these means a cure, your life back, an eventual return to normality. The other means treatment for the rest of your life and depending on how far the cancer has metastasized, that may not be too long. There is a section of the Breast Cancer Now forum entitled ‘Living with secondary breast cancer’ and within that, a thread entitled ‘Palliative care and end of life’. It’s like the room that you don’t want to enter. I’m mindful of the people who have reached that point and find themselves in that lonely room. Not many people go there. I guess it’s too scary.
Just over a week later and when I really thought I could take no more, I called my MacMillan nurse team to quite literally beg them for my results. They were in; there was ‘no uptake’. I had to ask what this meant because by then I was so used to bad news and yet more bad news, that I couldn’t quite comprehend coming to the end of it. She confirmed to me that this meant that cancer had not been found in any other area of my body. It had not spread beyond the 2 lymph nodes in my right armpit and was therefore Primary Cancer and not Secondary Cancer. I was one of the lucky ones.
How do you adequately describe the relief at being given your life back? I’m not sure I can, but I do know that this was the day that I started eating again and quickly put the half a stone back on that I’d lost. I rediscovered sleep and the weight of the world was lifted from my shoulders. Recently I noticed I was laughing once more and have even started to sing and dance in the kitchen to Radio 2 again while cooking, and for once I think my family are actually happy about it.
Chemotherapy started on 22nd February 2024. I am having the works which consists of 3 different chemotherapy drugs which is due to finish in July all being well, and then I will have a mastectomy, reconstruction and radiotherapy. I am very lucky in that my type of breast cancer, known as HER2+, now has a wonder drug called Herceptin that has been a game changer. From being one of the worst types of breast cancer to get, it has now become one of the best due to this, and I am going to get a year of these injections. 20 years ago, having HER2+ breast cancer would have been very bad news indeed. Today it’s not.
I had done everything right. I’d always checked myself and gone for all my mammograms but my cancer never showed up on these or on any subsequent scans. It was hidden away in a duct and it was my body giving me symptoms which took me back to the doctors on three occasions until it was finally discovered by a biopsy. So what I have learned is this.
JUMP ON YOUR SYMPTOMS! Do not ignore them. At a recent iron transfusion the nurse told me that it seems many patients are reaching them when their cancer is more advanced, probably due to a Covid backlog but also because of telephone appointments which she believes are not as informative to the medical staff as seeing someone face to face. If your body is telling you something is wrong, then do not ignore it.
The sad fact is that for various reasons, not least of which is the fact that we are living such long lives, 1 in 2 of us will get cancer. A staggering 1 in 7 women get breast cancer. The Clinical Nurse Specialist on my team at the fabulous Royal Marsden told me recently that the vast majority of breast cancers are now curable and of those that have progressed to Stage 4, most of these are treatable, which means you can go on living with it for many years. However, it goes without saying that much depends on the speed at which you get diagnosed and get treatment underway so DO NOT DELAY. It’s staggering to me that such a tiny bit of disease, I had just 2.3 millimetres of invasive cancer, had already made its way to 2 lymph nodes. Amazing that something so small has the potential to kill you but then so does bacteria.
Stick to reliable websites such as Breast Cancer Now, MacMillan and Cancer Research UK. There is a lot of outdated and frightening information out there and for your mental wellbeing you need to stay away from a whole lot of it. It doesn’t help to frighten yourself witless.
Introduce yourself to all your sisters (and occasionally brothers) on the Breast Cancer Now forum because the camaraderie and support on that site has and continues to carry me through.
Take action now to eat healthily, meditate, learn how to breathe for relaxation, pray, be mindful, treat your body with respect, just like I never did but hey, nothing like a reformed habitual hedonist to tell you what to do!
Listen to the people who have been there and give you gems of advice. My favourite was ‘Put cancer in a box and get on with your life. Visit it when you have to’.
Get yourself a Cancer Coach; by this I mean someone who has been there. I’m lucky enough to have two and they are empowering women. I’m happy to be yours.
My friends, I am going to be fine. My team are talking ‘curative treatment’ and I am doing well. All those years of partying seem to have stood me in good stead as years of alcohol training have primed my body for a regular chemo poisoning. I am like an elite athlete! Sure, I don’t have much hair left but I am truly embracing wigs. (Although I’m not so sure about the hair my cousin knitted me or the Australian cork hat and white plastic Stetson my mother gave me on the grounds that “It’ll be fun”!)
They’ve been a great pair of tits and I am grateful to them. Depending on the outcome of my genetic testing, I may have to say goodbye to both, but they’ve done me proud over the years what with all the acting roles they helped me to obtain. (My husband pointed out that I really needed to quantify exactly what type of acting roles these were, as when I said this to my oncologist it did rather have the effect of making me sound like a porn actress). Oh and of course, I breast fed but not quite as successfully as I did the nipple tassle twirling! On the plus side, I will have a brand new, perky pair at the ripe old age of 53 with a tattooed nipple to boot. Winner!
When this is over, I vow that I will finally get my backside over to New York which I have been threatening to do since I first sat entranced by Saturday Night Fever and Fame. Who knows, maybe I will get to dance on the roof of a yellow taxicab and not get arrested? But I’m not going to find reasons not to anymore. The past few months have taught me not to say ‘one day’ as ‘one day’ is not guaranteed. I have never experienced old age envy before, but when I was awaiting scan results back in January, I would go for my daily walk and quite literally feel jealous of old people that I saw who had been gifted a long life. And life really, really is a gift and one I am so damn grateful for.
To end on a positive note, the very best part of having breast cancer is discovering the incredible love and support that you have around you in your family and friends. I feel so loved and I thank you all for dragging me through the past few months. I will never forget what you have done and continue to do for me. And now, the sun is finally shining and I’m going to get out there and enjoy it. At the risk of sounding cliched, it really does make you appreciate life more and stop sweating the small stuff. I wish you all long, happy and healthy lives, but if this unwelcome invader ever takes up residence in your body, then send me my call up papers. I will be an awesome ally to have for your army because right now, I am kicking cancer’s arse royally!
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Absolutely brilliant. Maybe BCN could use it as inspiration to others on this journey.
Let’s keep our fingers crossed that your genetics is also negative. So pleased you are halfway through your treatment, it’s so important acknowledgment those milestones for your mental well-being. I still do the same with Herceptin, next week I’ll be 12 out of 18 2/3 done!
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