Hi All,
I’m Vickie, I’m 31 years old and was diagnosed at the beginning of September with triple negative breast cancer.
I started to experience pain in my breast, originally thought it was my back but the pain didn’t go and kept getting worse. After checking in the shower I found a lump, went to my gp the next day and she told me it was likely benign because of my age but sent me to be checked to be on the safe side.
The day of my breast cancer screening appointment I left being told there was at least a 90% chance we were dealing with cancer and I feel like my world was turned upside down. I received the official diagnosis on the 1st September and now waiting for my first oncology appointment.
I’m a mum of 2 boys who are 4 and 5, currently still working full time and I’m a massive F1 fan 
I am wanting to see if I could create a space to meet other younger women going through similar to myself and find some more people to connect with to share experiences and hear people’s advice to cope with everything!
Thanks 
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Hi there @vickchamp - what an amazing idea 
Thank you for reaching out and starting this thread. And let me start with the line which is absolutely true - you are not alone
I’m 33 and was diagnosed in December last year (fra-la-la-la!). For me they thought it was perhaps a build up of fibrous tissue due to my manual job but sent me to be checked to be on the safe side. I’m very lucky that they did, as after a few tests I tested positive for Grade 2 HER2+ breast cancer.
It sounds like I’m further into my journey - I had two surgeries earlier this year, completed chemo on the 17th of August, and just had my last radiotherapy last Monday!
I’m more than happy to share anything I can to help others along the way 
It’s lovely to meet you, even if it’s not through the nicest circumstances.
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Hi @daffodil_dream
As you say lovely to meet you and if only it was in nicer circumstances.
Thank you for sharing your story. Glad they found yours early! Thankfully mine is early too but still overwhelming with what’s to come.
I would love to hear any advice or tips you have around starting chemotherapy and anything that helped you?
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Whether found early or not, it’s an overwhelming world to then be thrown into and difficult to know where to start 
My first piece of advice is to break this down, and read small amounts at any given time to make it easier to take all the information in. I’d start by having a look at the existing monthly threads as there is a wealth of knowledge within each of them, with lots of helpful links and support. Easier said than done, but never feel like a bother/feel silly or put off asking questions on the forum/to your nursing team/oncologist they are there to help and make your journey as comfortable as possible Knowledge is power! Maggies Centres also offer a range of classes and sessions to provide support not just to you but to your family.
I’ll gladly share info in regards to chemo 
I’ll add it into a second post to make a little easier - it’s a very personal journey to everyone, and others may have different recommendations, and there is no “wrong” way to go about it
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For me, it was the fear of all the unknown ahead of starting chemo I attended the Prehabilitation session and the Starting Chemotherapy session at the Maggies Centre which were both informative and reassuring so I really recommend those if you have access to them.
The setup may vary from Trust to Trust, but generally you are given your own recliner chair and side table. The Ward was split into Bays which sat 8/9 people also getting their treatment. You’ll be assigned a nurse at each treatment who will keep a close eye on you and give you your treatments.
Now I don’t want to increase anxieties, but you are not allowed to have anyone with you while you undergo treatment. This is to reduce infection spreading on the Ward as the patients are immunosuppressed, as well as for noise reduction and to respect other patients privacy at a very vulnerable time. At my Trust, my partner was allowed to sit with me at my first session while I first got settled and introduced to the setup as they do give you a lot of info 
From there he did have to leave, but please do let me assure you that the nurses are so so kind and compassionate, as well as the other patients who all know what it is like Once I had my first session under my belt I felt more confident about the sessions ahead and could go into the appointments with more confidence.
The Ward does keep you supplied with tea/coffee and they do serve lunches, normally soups and sandwiches depending on what time you are in for your treatment. But you don’t have to take anything on offer if you’d rather take your own food.
Of course you can take your own home comforts Sessions can be a good few hours, so my other key advice is to be as comfortable as possible. Hydration is a huge part of your treatment (get very used to going to the loo!!) so a water bottle is a huge essential. I would also take some distractions with you while you have treatments to fill quieter moments. I always had my headphones with me for music/audiobooks as the wards usually had quite a lot going on. I also took some of my own snacks (normally some ginger biscuits/fruit/some fruit gummies for sugar)
I went packed with waaaaaay too much stuff for my first session, but it helped me feel prepared and somewhat in control. As the treatment went on I was able to cater this more to my experience.
I got my treatments through a cannula in my hand, so I have no experience in regards to PICC lines I’m afraid. But I tried cold capping, so I can share further experience if it would help. And can also share what helped me at home
I’m sorry for this incredibly lengthy post!!! Talk about information dump 
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@daffodil_dream thank you so much this is incredibly helpful! I didn’t know that no one would be allowed in so I’m glad I’m prepared with that now. Like you mentioned the fear of the unknown and that’s my issue, I like to be prepared as possible but as treatment is different for everyone it’s hard to know what’s to come. But this has helped and good to know what you can and can not do for your sessions. How long is chemo usually as in when you go for each session or is it different for everyone? I’ve been told treatment as a whole will likely be 4-6 months
Yes please I would love to hear about both if you don’t mind, this has been a great insight and appreciate you taking the time to share with me
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I’m glad to be of help, I want to pay all the support I had forward
It was something that took me by surprise at first too! When they explain their reasoning it made perfect sense, but I was still very anxious ahead of starting However, once you get over that initial hurdle of the first treatment and know what to expect, it does get a little easier
Yes, as you have already mentioned, the experience is slightly different for everyone. Each person’s treatment is catered to them precisely, and can be adapted to suit what best works for your body to cope with. For the treatment itself, the first session was the longest as you get given a lot of information and a lot of medication to take away (someone can stay with you for that part to help you take it all in) I was there for a good 5-6hours. But from there my sessions were closer to 4-5hours.
Fair warning, if you decide to cold cap, this adds on quite a bit of time to treatment. You have to have it on for around half an hour before starting your meds to allow it to cool, and then it has to defrost gradually over an hour and a half.
In terms of the duration of your treatment as a whole, it does also vary from patient to patient. It sounds very daunting when you hear how many months treatment will be, but try focus on one cycle at a time, not too far ahead, I found breaking down my treatments into mini stages helped me not feel quite so overwhelmed One bit of advice I was given was to actually add 1-2months onto the end of my treatment. Sounds negative right?!? But it’s to allow for any potential delays which may crop up through any complications/infections etc rather than setting your heart on an exact “end date” and potentially being disheartened by any setbacks. I appreciate it sounds a bit counter productive, but I found it helped as I did end up with a couple of delays so I wasn’t as disappointed that I didn’t hit a specific target so to speak. And if you finish with your original time frame it would feel amazing - a little bonus win!
Hope that all makes sense so far? Forgive me for waffling on 
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I’m 34, was diagnosed almost a year ago. So sorry you’re here, but this forum is a wonderful place full of people who will help you get through this.
Some of my top tips for early stages:
- Get a notebook and write everything down, or ask someone else to write notes at your appointments. You’ll get a lot of information early on and it will take time for the language of breast cancer to become second nature. It won’t always be this confusing though. Use your notebook to prep for appointments beforehand. I genuinely treated it like work - meeting notes, everything in my calendar.
- Don’t be afraid to ask questions. If you don’t understand, if you’re concerned about anything specific - there should always be time to ask at the end of your appointment.
- Lean on your Breast Care Nurse. Hopefully you get a nurse or team who are responsive, I had separate surgical & oncology BCNs. My surgical ones were much more difficult to get hold of, whereas I can text or email my oncology BCN which makes my life so much easier. Ask how you can contact them easiest, because they can move mountains and make things happen.
One thing to consider is every hospital and trust works differently. I go to The Christies which is a major cancer centre, so my experience is different to a ward on a ‘normal’ hospital. I also have done large portions of my treatment privately, so the same oncologists and treatment protocol - but nicer waiting rooms and better food My ward allowed guests while doing chemo - some places don’t. You’ll find everyone’s experience is different, it’s what makes this forum so valuable imo because you can get such a wide experience.
It’s easy to go too far down a rabbit hole of different treatments, I’d say focus on whichever they say comes first. Chemo or surgery usually. One treatment at a time, one day at a time.
Also more important than any of the above - F1 fan HELLO!! I’m a big F1 fan, drive to survive convert 
I’m actually doing a cross stitch of each race winner this year, and I’m tired of having to stitch Antonelli 
I’m going to miss quali tomorrow because I’m walking a Parkrun with my mum at that time, but I’m looking forward to Sunday’s race 
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@daffodil_dream it all makes perfect sense and you have waffled at all, it has really helped me to prepare for what could come. I appreciate your time and support so far.
I have heard cold capping can add time onto treatment but I think I’m going to give it a go as I’ve been so worried about loosing my hair which I know is a small price to pay but it’s the most visual thing and I have 2 small children so want things to be as normal as possible for them as they are too young to understand what’s happening.
Hi @demimiray
Thanks so much your time sharing your experiences and advice! It’s also lovely to meet you shame about the circumstances.
Sorry to hear everything you are going through as well.
Oh I’m so pleased to find another F1 fan, your stitch sounds amazing, would love to see it! I’m a massive Lewis fan, also lando and Charles only downside with Sunday, early race haha
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I’m terrible for rabbiting on Good for you for giving cold capping a try! I was really glad I gave it a go, and wasn’t as bad as I feared it would be! The hair loss is the visual reminder of what we are going through, and it can be quite a toll mentally. You can also stop cold capping at any time The nurses leave that control completely to you!
First off, make sure you have in some fragrance free shampoo/conditioner and bodies washes for your hair and your skin. You can use baby washes, or I found the brand Faith in Nature wonderful 
Be as gentle as possible on your scalp when washing - mainly focus on the ends of your hair in particular. Having a wide tooth comb is much gentler on your hair compared to standard brushes. Try and avoid tying your hair back as much as you can while on treatment - you want as little strain on your hair as possible. I just used a very light hair band or scrunchie to keep my hair back on the rare times I needed it.
I also found a wonderful seller on Etsy who sells pre-tied elastic cloth caps which were wonderful! I still wear them at the moment to protect my head in the sun (Deresina Headwear) They are so light and breathable! I’d even introduce wearing these ahead of hair loss to help your wee ones adapt They also sold cloth headbands which are super handy for keeping hair back and also for protecting your forehead against the cap. I can’t recommend the company enough!!
Also, having some very soft tissues or hankies is super handy. Hair loss also includes nose hair loss!!! And it can mean you have a bit of a damp nose. I wish I had a little more warning about that side effect - it’s just a bit annoying
At your chemo sessions, a nurse will wet your hair on the Ward ahead of putting the cap on, and will put on conditioner to help protect your hair (they do provide some but by all means you can take your own if you prefer)Your first session will take a little longer while they find the size of cap you need.
I could still wear wired earbuds while using the cold cap too - I would maybe avoid wireless options as they would be tricky to take in and out!
I also took a little scarf for around my neck to just help me against any chills! My Trust provided heated pillows and blankets to help you stay warm, but again you can take a blanket/shawl if you’d rather have your own. Wear layers so you have the option of adding or taking them off as you need
I personally found the cap initially cooling down much easier to cope with than I expected. I run super cold as I have Raynauds Syndrome so have bad circulation but even then I actually found with having some things in place that I managed okay! The headband really helped and I made sure I had something to distract me as it cooled (a book or something to watch on my phone or my audiobook really helped)
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Honestly @daffodil_dream its made me feel less anxious about everything so thank you so much!
I have bought a couple of scarfs and cotton caps off SHEIN so I may introduce them now.
Thank you for the insight into cold capping, I would rather try, than wonder what if so I have nothing to loose by trying it out and if it doesn’t work it is what it is but your right it’s that visual reminder of what’s going on.
I will look into the Etsy seller and finding some alternative shampoo and conditioner as everything I currently use is full of fragrance haha.
I only have wireless headphones so I may have to look into some wired ones in that case
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I’m so delighted to have helped in any way I’m sure there will be something I’ll have forgotten to mention!!
It sounds like you’re preparing so well! I was the exact same for cold capping, I wanted to at least try it. It took a little longer for my hair to start to shed (day 21 into my treatment) and I still had some hair around 8 weeks in. Sadly this was too patchy to maintain so I did have to shave in the end, but for me I did it when I was ready.
I’d also recommend keeping a daily diary to keep track of your symptoms, including hair loss. I found it helped me keep track of what happened and roughly when.
Do you mind me asking if you know what drugs you will be receiving? My treatment was 4x EC and 3x Docetaxel