Just diagnosed with breast cancer

Just wanted to say hello. Just starting my journey to fight cancer and finding all the info quite overwhelming . It’s good to read about you brave people and gives me hope I come out the other end. I had a biopsy last week and told today I have stage 3 but yet assured it had not reached my lymph nodes. After routine tests I have to have neoadjuvant chemo to hopefully reduce lump and then have surgery and most likely radiotherapy. Seems a long time. The joy in my life is my grandchildren who are 4,2  and 6 months and now someone tells me that when having chemo it’s best not to see your grandchildren due to risk of infection. That will be hard. 
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  • SunshinedaffSunshinedaff Posts: 779 ✭✭✭✭

    Hi @Jojodot

    Welcome to our lovely community. I am sorry to hear of your recent diagnosis. So glad you found us, you are certain to find loads of support and understanding here.

    It is very scary at first when cancer turns up, I can't lie, it sends everything into a spin, it is hard to focus on anything else.

    The good thing for you is that it hasn't spread to your lymph nodes...one good thing at least.

    I had a different chemo to you, so am unfamiliar with the one you mentioned. I went on to have a mastectomy followed by radiotherapy.

    Try not to think of the whole of it, take it bit by bit, day by day. It is a long road, but doable.

    It is lovely you have the grandchildren to spend time with, help to keep you busy! There are some periods where you will need to be careful, especially during chemo, your immunity will become very low and the risk of picking up infections is high. But that doesn't mean you won't be able to see your grandchildren. You just need to be mindful, and be aware of any colds and germs that are circulating. Sometimes you do need to steer clear then, for your own sake. But it is temporary. The chemo nurses and your oncologist will explain everything. Don't be afraid to ask questions when you next see them.

    Hold on to hope, definitely! You are very welcome here, I hope you get to know us soon. Everyone is very friendly and helpful.

    Chat soon,

    Lou xx

  • JojodotJojodot Posts: 12

    Thank you Sunshinedaff for your welcome. I think it’s good to share what we are all going through. And give support to people. As I said I am just started on this hard journey and know I will gain strength from this site. Thank you for your advice and reassurance that I will be able to spend time with the family and the little ones. Wishing you all the best and thanks for your care. Hope to be in contact again.

    Jojodot x

  • KitKatKitKat Posts: 34 ✭✭

    Hi@Jojodot

    Seems we are on similar journey.

    I got diagnosed on 9th July with stage 3 breast cancer but it has spread into my lymph nodes. I struggled mentally for a couple of weeks but am slowly getting my head together. I will need surgery and radiotherapy but will not have chemotherapy.

    I've got lots of support but still very scared.

    I'm in Derby but going to the Royal Marsden Cancer Hospital in London on Tuesday for a second opinion on treatment.

    Because we are both newly diagnosed it would be nice to stay in touch with each other and support each other through our treatment. Are you up for that?

    Either way, best wishes. X

  • RobertARobertA Posts: 611 ✭✭✭✭

    @Jojodot

    Hi Jojodot

    I am delighted you have found us. We may have different cancers but we are still all here to support and encourage one another.

     I love this community. It is full of courageous, caring and funny people, new friends who don’t mind when you are having a bad day and who celebrate the good ones with you, You are most welcome and I hope you will keep in touch.

    Rob x

  • JojodotJojodot Posts: 12

    Thank you Kitkat and Robert for getting in touch.

    Having a sudden diagnosis of cancer is certainly a shock and one I am still coming to terms with. It is good to find on this site lots of positive people. Positivity is what I keep saying to myself - haha - I am finding all this waiting to hear what exactly is going to happen extremely stressful and uncomfortable as I still have further tests to go through. I am not sure exactly whether it is chemo first or surgery first and which hospital I have to go to. Have to wait until 13 th and hopefully then I will know and get started to fight this. You can guess I like to know what is what!!!

    But I have lots of learning to do as I am finding out there are so many different treatments and all sound scary to me.

    Kitkat - hoping you get on well at your Tuesday appt which is far for you to travel. However the Royal Marsden is a centre of excellence. I am near Edinburgh in Scotland. Strangely enough my great grandmother came from a village near Derby. It would be lovely if we kept it touch and gave each other a helping hand through this journey we are set on. Wishing you all the best and send a hug.

    Jojodot X

  • KitKatKitKat Posts: 34 ✭✭

    @Jojodot

    Good morning how are you? Stupid question because if you are anything like me you will be up and down. I didn't realize what an emotional weepy person I am ha ha.

    I know you mentioned the 13th but just wondered if you have had any update on your treatment?

    I went to London on Tuesday and I am having treatment at the Royal Marsden - I felt so positive and safe there.

    Local hospital treatment was surgery including removed of all lymph nodes, radiotherapy, chemo and then reconstruction a year later.

    London is 6 doses of chemo in the hope that tumour reduces, thereby needing less invasive surgery. They will only be be removing any lymph nodes that are still cancerous.

    Traveling to London is the only downside but I can cope with that.

    Been ordering lots of chemo hats this weekend.

    Please let me know how you get on

    All the best xx

  • JojodotJojodot Posts: 12

    Hi KitKat,

    Good to hear from you. Like you I have up days and down days. Most of the time I can put it aside and get on with normality telling myself to get things done before treatment is underway whereas other times I am quite overwhelmed.

    The treatment you have been offered in London sounds like mine but I still have to wait till 13th for final diagnosis. It’s the chemo but that scares me most. Everyone seems to react differently and you just have to wait and see. However if it does it’s job it has to be done. I now knowthe hospital where I will get treatment which is comforting and is only a 15 minute drive away but you will have long journeys.

    Last Thursday I had more tests before final diagnosis. Found the bone scan the hardest and quite intimidated by the huge machine. That day I read I should have been to the dentist for a check up before things get started as it’s not advisable to have dental treatment when having chemo. No joy however as the receptionist was most unhelpful and told me the first available appointment for treatment was mid September. I don’t quite know what to do about t his. All the health professionals I have met have been so nice and understanding and then you hit a brick wall at the local dentist. And guess what - that little thing was enough to give me an upsetting few days !!

    Found lots of hints and tips on Macmillan site too and chat line there busier.

    So d day on Tuesday for me. Will let you know.

    Hope you are feeling ok about things .Do you know when you will start treatment?

    All the best,

    Jojodot

  • KitKatKitKat Posts: 34 ✭✭

    @Jojodot

    Hi glad to hear that you are okay. Sounds like we are at similar stage mentally.

    I've got several appointments over the next week including bone scan, then chemo starts week after. I've also got a dental check up but that was coincidence as booked in prior to diagnosis.

    I'm not looking forward to the chemotherapy. I've had it before many years ago when I had leukemia and had to have a bone marrow transplant. It was horrible. However the consultant assured me that it has improved significantly. My neighbour is 2 years post mastectomy and she sailed through chemo and was able to go to work most days.

    Will check out the Macmillan site.

    Enjoy the rest of your weekend.

    All the best.

    Please keep me posted.

    Cx

  • LouiseJLouiseJ Posts: 333 mod

    @Jojodot

    Hi, I hope your appointment yesterday went as well as it could have and have been able to find out the finer details of diagnosis and hopefully the treatment plan and order of things.

    When the drs give you a whole lot of information at these appointments it can be a bit overwhelming, usually so much to take in, and a lot of it can go over our heads or rather in one ear and out the other! I am hoping things will be a little clearer for you. Sorry to hear about your call with the dentist receptionist. I wonder if it is possible to call back and ask to speak with your actual dentist, to explain the situation? I only say this as I tried this when I was diagnosed and it worked, I was able to get through to my dentist, after that there was never an issue getting an appointment.

    You are probably trying to hold everything together, when things are fragile and very stressful, it isn’t unusual for a seemingly simple thing to cause a wobble.

    As Catherine (@KitKat ) has mentioned, treatment has changed so much over the years, and things like chemo are much improved. There are things to help with side-effects of treatment too. I won’t bombard you with details etc.now as sometimes that isn’t helpful, but if you need to know more, please just ask anytime. Always happy to chat through anything.

    Chat soon,

    Lou xx🤗

  • JojodotJojodot Posts: 12

    Hi Lou,

    Are you sunshinedaff too ???Thank you for your lovely message. I always enjoy reading your supportive messages so much - it just feels like you are talking to others rather than writing 😀You have a gift.

    I had good news and not so good news yesterday . Positive was all tests are clear but now I have to wait for an appointment with the consultant at our local hospital where I will get treatment. So slight delay and I still don’t know the plan !!

    However I have got a dental appointment on Monday so maybe things will all work out.

    Thanks again Lou,

    Jojodot

  • JojodotJojodot Posts: 12

    KitKat,

    Hope all is well and you know more about what is happening.

    Don’t want to repeat myself but think you can read my story when I replied to Lou. Still trying to discover my way round this site and how you can move from thread to thread.

    Take care,

    Jojodot

  • RobertARobertA Posts: 611 ✭✭✭✭
    edited August 14

    @Jojodot @Sunshinedaff

    Hi Jojdot

    Good to hear that you got your dental appointment. It is unbelievable to hear how unhelpful the receptionist was. You just don't need that when you are going through cancer treatments. Anyway, it is good to hear that your tests are clear but a shame that you are still waiting for your appointment with your consultant. Hopefully, you will not have to wait too long.

    You are so right in your comments concerning Lou. She is the bedrock of this community, so caring eloquent and supportive and yes, she does have a special gift.

    Rob x

  • LouiseJLouiseJ Posts: 333 mod

    @Jojodot , @RobertA

    Hi, thank you so much for your lovely words, they moved me to tears this morning. I hadn’t been able to reply until now. Yes I am sunshinedaff also, LouiseJ is my moderator profile. I switch between the two depending on which device I am logged in as!

    I like to think that when people read posts that it feels like we are sat in the same room chatting personally. That is my intention anyway, hopefully that helps and is more personal.

    Your good news is really great, at least you know now what you are dealing with. I hope even just a little bit that the clear tests helped to give you hope and to stay positive. I know it means a delay with having yet another appointment to wait for, but try not to become more stressed about that ( not easy, I do understand!). It is one day at a time, I am glad you have been able to get an appointment at the dentist next week, another good result.

    Chat to you soon,

    Lou xx

  • KitKatKitKat Posts: 34 ✭✭

    @Sunshinedaff @Jojodot @KarinSieger @Rob70

    Hi everyone, just got back from two long days in London. Had, kidney checks, heart checks and clip inserted into lymph nodes.

    Start my chemo next week. They explained it all to me and all the side effects. Said they give you massages while you are having treatment to help relax etc.

    A good tip the oncologist gave me was to wear a very dark nail polish as they have found it helps protect your nails against chemo damage.

    Going to chill now x

  • KarinSiegerKarinSieger Posts: 42 Cancer Counselling Specialist

    Hi @KitKat

    Thanks for the update!

    Just a quick response re dark nail polish - that has not been my understanding. Breast cancer chemo in particular (Taxanes ie Taxotere, Docetaxel, Bleomycin and others) can discolour finger and toe nails, make them brittle, cause infections etc. This article HERE explains all about it, including how ro care for our nails when going through chemo.

    • eg "Avoid artificial nails and coloured polish, especially dark colors."

    Best to double check with your medical team.

    Very best for next week.

    Karin

    Karin Sieger
    Psychotherapist | Writer | Podcaster | MA, BA (Hons) | Reg. MBACP (Accred)
    Helping you create new possibilities!
  • RobertARobertA Posts: 611 ✭✭✭✭

    @KitKat

    Hi Catherine

    Lovely to hear from you. Thanks for the update. It is good to know that they are taking so much care of you, that you know what to expect and that you are chillin. Good for you. 😁

    Rob x

  • LouiseJLouiseJ Posts: 333 mod

    @KitKat

    Hi Catherine,

    Thank you so much for letting us know how you got on, especially as you have had very long days and a lot of travelling.

    It sounds as though you have a brilliant team looking after you, it is reassuring when you actually do feel cared for by the medical professionals treating you.

    It is very interesting to hear that Karin ( @KarinSieger ) has heard something different re the nail polish. I was advised the same as you, to wear dark polish, although it didn’t save my nails. They have since grown back and are now stronger again. I guess you can double check when you go next.

    I hope you are chilling tonight and resting well.

    Chat soon 🤗,

    Lou xx

  • JojodotJojodot Posts: 12

    @KitKat

    You will be relieved to know what is going to happen and reassuring to be at a place where they make you feel as comfortable as possible. Guess the treatment is a means to an end.

    Re nail polish - I read that covering your nails with dark polish means that you and the nurses are unable to keep a check on your nails and so recommended Evonail repair which moisturises and strengthens nails. It’s by Evaux and available at Amazon.

    All the best and let us know how things go.

    Jojodot x

  • SunshinedaffSunshinedaff Posts: 779 ✭✭✭✭

    @KitKat

    Hi Catherine,

    What day do you travel down for your chemo treatment?

    Thinking of you, wishing you safe travels and a smooth first chemo.

    Sending big hugs

    Lou xx

  • KitKatKitKat Posts: 34 ✭✭

    @Sunshinedaff

    Aaaw thank you so much. Travelling to London tomorrow for a bone scan. Then Wednesday have a biotherapy infusion then Thursday its chemo day. We are lucky that the Royal Marsden provide us with accommodation.

    Don't really know how I am feeling but I had a horrible thought today. I'll be having chemo with ladies who have no hair and then it will be real and I will have to accept that I am poorly. It's been like a dream so far and I am about to wake up.

    I will keep you updated on how the next few days go.

    Best wishes. Take care.

  • KitKatKitKat Posts: 34 ✭✭

    @Jojodot

    Good evening, how are you doing?

    Have you had any treatment yet?

    I'm off to London tomorrow to start my treatment.

    Not looking forward to it.

    Thinking of you

    X

  • JojodotJojodot Posts: 12

    @KitKat @Sunshinedaff

    Strange - I was just thinking of you KitKat. All the best with your tests and first treatment. You are taking first step to zapping this !

    I haven’t had a very good day today. Up to now apart from first diagnosis I have been very upbeat and positive and been busy meeting up with friends etc but today my appointment came through for the oncologist meeting. It’s a while - 5th September ! So been upset today. I was told things would happen soon once I transferred to my local hospital. I was diagnosed at Edinburgh and had a chest x Ray a liver scan and a bone scan. I believe - but may be wrong - that that’s all the prerequisite tests required in Edinburgh. Now though as I have been transferred I have had a breast MRI and still to get a CT scan and heart ultrasound. Because I was worried I phoned the local hospital and a nurse phoned me back late afternoon.Said that’s what the consultants at this hospital order. But as I was concerned she has asked me to meet her on Thursday and she will go over full diagnosis etc as I have still not heard full details. So I will maybe be clearer on Thursday and hopefully reassured.

    I may be over reacting but I was diagnosed on 31st July and now treatment won’t start til after oncologist appointment on 5th September. How long did you wait as I remember thinking you had a long time but thought it was because you changed to London.

    Sorry for my rant but nice to tell someone who maybe understands. Glad you are on your way. Be thinking of you.

    Lorna XX

  • KitKatKitKat Posts: 34 ✭✭

    @Jojodot

    I was diagnosed on 9th July and only starting chemo this Thursday. My treatment has also been delayed but I wasn't happy with my first consultant and knew I needed to be sure. I had CT scan plus ultrasound last week in London

    London is two hours travel but I feel safer with them.

    We sre traveling down today and staying over until Thursday

    Like you I'm so anxious and scared. I feel like I'm in a nightmare. I was wondering if we could swap mobile numbers and perhaps text each other or maybe speak as our treatment progresses?

    Will speak to you later as have to catch train.

    Big hugs.

  • SunshinedaffSunshinedaff Posts: 779 ✭✭✭✭

    @KitKat ,@Jojodot ,

    Hi Catherine, Hi Lorna,

    Hopefully you have arrived in London ok Catherine. Hoping your tests and scans go well. It is great you have accommodation provided too, that must take some of the pressure of travelling off you. I do hope it's ok.

    All of this is scary, and is a nightmare, one that seems impossible to escape from. As Lorna says seeing this as the start of zapping that invader on your life, is a good thing. I used to liken my chemo to a scud missile within me, seeking out the cancer to destroy it. Seeing the chemo as being stronger than the cancer. Draw strength to help get you through from friends and lovely people here who are with you every step of the way.

    Lorna, I am so sorry you've had a tough time waiting for things to get I can understand how you may be feeling. I am so glad you contacted the local hospital and the nurse suggesting you meet with her to chat things over, to explain things more fully. I do hope you find this really helpful.

    It is extremely hard not to fret and worry about the time delay from diagnosis to starting treatment. Hopefully the tests and CT scans will help your oncologist to give you the most effective treatment possible.

    Please don't sit and worry on your own, always here to chat, plus having others here like Catherine to kerp in touch with, who are also at a similar stage of treatment as yourself is a good way to stay encouraged. There is always someone here who completely gets how you feel.

    Will be thinking of you too on Thursday at your appointment with the nurse.

    Sending you both hugs and positive thoughts and prayers.

    Chat soon,

    Lou xx

  • JojodotJojodot Posts: 12

    @Sunshinedaff@KitKat

    Thank you Lou for your kind response. Feeling a bit better about things today - just had a bad day yesterday! Must stay positive and I like your way of thinking about chemo being like a scud missile. As long as it targets the cancer and not too hard on the rest of my body. Strange how such a small lump can cause such chaos. Never mind - must be thankful there are treatments now available to zap it.

    At least I was at the dentist today and got required treatment. The dentist was absolutely fine - it was his bodyguard receptionist that was the problem ! So another treatment ticked off. A cardiologist appointment on Thursday and a ct scan on Saturday .

    Catherine - do hope you have had your bone scan. I felt it was strange being surrounded by that machine swirling around. Robots on the move !! And hope the treatment tomorrow and Thursday are ok. So glad you said we and you are not on your own being far from home. Can always have an evening out in London ! Sounds good !

    Would be happy to give you my mobile number but how do we do that without making it totally public ? But would love to keep in touch as we are about the same stage.

    Stay strong, be brave and you will beat it. Go Girl !

    Lorna XX

  • SunshinedaffSunshinedaff Posts: 779 ✭✭✭✭

    @Jojodot @KitKat ,

    Good evening Lorna, Catherine.

    Must be the day for dentists, I had to go too, except my six monthly check up turned into sorting an abcess out. Now have meds and a root canal to look forward to! Lol! I sincerely hope your visit was better than mine!

    Hope you both have a peaceful as possible evening, and good rest.

    🤗🤗

    Lou xx

  • RobertARobertA Posts: 611 ✭✭✭✭
    edited August 21

    @KitKat @Jojodot

    Good afternoon Catherine and Lorna

    I have been reading your posts and I am thinking of you both.

    I hope you have a peaceful night Catherine. It is good that you are already in London and that you are in safe hands.

    Hi Lorna. Well, you have not lost your sense of humour. Bodyguard receptionist 🤣🤣🤣

    You are entitled to have a bad day and I am pleased that you have a meeting with the nurse tomorrow. I am sure it will be reassuring to have some clarity.

    By the way, you can contact each other privately on this site. To the right of your profile at the top of the page, you have the notifications button which looks like a globe, if you tap the next one along from that it will enable you to message each other.

    Rob xx

  • KitKatKitKat Posts: 34 ✭✭

    @RobertA @Jojodot @Sunshinedaff

    Hope you are all well and enjoying this lovely sunny day.

    Have survived 3 long days in London.

    Tuesday was bone scan. Wednesday was a killer - 6 hours of infusion of trastuzumab and pertuzumab and then we couldn't leave clinic for a further 2 hours in case I had a reaction.

    Thursday was infusion of docetaxel and carboplatin. Had the cold cap - boy was it cold, like having my head in a bucket of ice.

    Got home at 10pm with a suitcase of tablets and so nice to sleep in my own bed.

    Feeling very positive and off to see my lovely horse now as missed him so much.

    Lorna I do hope that everything is going okay and you are staying positive. Been thinking about you.

    Catch up with you all very soon.

    Hugs to everyone

    Tried to attach pictures but doesn't seem to work sorry




  • SunshinedaffSunshinedaff Posts: 779 ✭✭✭✭

    @KitKat

    Hi Catherine,

    Lovely to hear from you, I was just thinking about you too!

    Oh wow! Such long days for you, and chemo day especially long.

    I can see the photo, I hadn't seen a cold cap before, looks more like a flying helmet from the old days! Your lovely smile peeking through! 😄

    Having your head in an ice bucket sounds really horrible, so if that was what it felt like, you are very brave and strong to withstand it!

    It is a beautiful day here too, now the mist has lifted. Enjoy being with your horse again. Therapy and healing for the soul 🤗.

    Get lots of rest too, especially these early days, one day at a time.

    Glad you are back home again, I think many of us would agree with you, being back at home in our own beds, means so much.

    Thinking of you,

    Lou xx

  • RobertARobertA Posts: 611 ✭✭✭✭

    @KitKat

    Hi Catherine

    Those are great photos, thank you for posting. You look very relaxed and it is great to hear that you are feeling so positive.

    It must be lovely to be home again and I am sure that Splash will have been as pleased to see you as you were to see him.

    Take it easy, rest up and have a lovely weekend

    Rob xx

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