Newly Diagnosed with Breast Cancer

PositiveLady10PositiveLady10 ✭✭Posts: 52 ✭✭
Hi,I was diagnosed with Lobular breast cancer + HER2 positive on15th November 2018.
I had 4 biopsies taken which was a positive cancer.They then found another suspect area which has been biopsied,and they are "unsure",after yet another MRI they say there is also an area of "speckling" and won't be doing any more biopsies?
I am meeting with my Surgeon and Oncologist on Friday to discuss options for surgery.
i then have a heart scan booked on 23rd,because I will also be having Herceptin along with Chemo for 18 weeks starting on 25th.
My head is "in a fog", I am frightened and not sleeping.
Can anybody give me any advise regarding questions for Friday,I feel as when I am talking about it all,I am talking about somebody else ...... if that makes sense.
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  • SunshinedaffSunshinedaff ✭✭✭✭ Posts: 773 ✭✭✭✭
    @PositiveLady10 ;

    Hi, Welcome to you. 
    It is a whirlwind of tests and information after being diagnosed. Bless you, I am not surprised you feel in a fog, and frightened. 
    The positive thing is, it has been found, now we concentrate on getting rid of it. 

    When I was diagnosed, I had to have all the tests repeated as they weren't sure precisely where the cancer was, but knew it was there as it was in my lymph nodes. It was found eventually! But I started chemo immediately anyway.

    Are you taking anyone else with you to your appointment on Friday? They can take notes for you. It is too much for you to take in on your own, most of it goes over the top of your head. That's how it was for me. 
    I would encourage you to have someone with you.

    Are you expecting to have a mastectomy? From the dates you mentioned, I guess surgery will be after chemo?
    I can't talk about Herceptin, as I didn't have that, but I did have chemo, mastectomy and radiotherapy.

    I had my heart checked too as I was having chemo, they need to check how it is because the chemo can be damaging.

    Have you had your chemo talk with the chemo nurse yet? ie, going through all the possible side-effects etc?

    Many questions re chemo naturally get answered at this meeting. 
    Your veins will be checked to see if they are good enough to withstand the chemo drugs. If the nurses think not, you may have a picc line fitted which stays in for the duration of chemo.

    Regarding surgery I would find out:
    How long it will take?
     What the procedure will be exactly? 
    Are they removing lymph nodes?
    If a mastectomy, will you be able to have reconstruction?
    Will you be having radiotherapy after surgery?

    Ask them to explain the MRI results with you and what the speckling means, if you don't understand, or it seems confusing, get them to repeat it and explain it differently.

    If I think of any more questions I'll post them, I do remember at the time of diagnosis being presented with a timeline of events already mapped out and planned by my MDT. 

    Please feel free to come and chat anytime. I do understand how you are feeling, as do many others here. You are not alone. It's only been a short time since your diagnosis, it is a huge shock, and very difficult to get your head, mind and emotions around. Don't try and process it all now, honestly, that probably won't happen for a long time. For now, it will mainly be a day by day thing. 

    Hope to speak with you again, 

    Lou x

  • PositiveLady10PositiveLady10 ✭✭ Posts: 52 ✭✭
    Thank you Sunshinedaff for your reply,it is very much appreciated.
    my husband will be coming along on Friday,he has been with me for all of my appointments.
    I think they "they" are going to head towards a mastectomy,but still can't get it sorted out in my head,it is such a major thing for a woman to go through,and I applaud all the ladies that have had this forced upon them.
    I had a meeting with the Oncologist last week and she's already told me that I will loose my hair,so that's something else to mentally deal with.
    My husband battled through Bowel Cancer himself,so this is the second time this has hit us,and it's so hard.

  • LouiseJLouiseJ mod Posts: 330 mod
    @PositiveLady10

    Hi, 
    I am so sorry that this is the second time round for you and your husband. Indeed, it must be very hard for you, the thoughts of not again, and having to go through so much to be free of it. 
    For myself, I wasn't particularly bothered by the mastectomy, and was more concerned it would get rid of the cancer. I thought I can live with one boob, and I can. I decide against reconstruction, but left the decision until a year after surgery, so my radiotherapy was done on the understanding I was going to have reconstruction in the future. (if I wasn't going to, and had known my decision, they would have given me less radiotherapy, so I'm glad I hadn't decided then.)
    The hair loss, is upsetting, yes. The upside is, no hairy legs etc! (has to be a silver lining right?). But once it starts to go, the best thing to do is get it shaved off and use hats and scarves or a wig (I didn't have one). Once it has gone you will get used to it. And it will grow back, but perhaps not in the way it was, that can be good or bad depending on your point of view!

    I hope the appointment goes well on Friday, and you get all the information you need to help you begin this journey and get you through to the other side. I don't particularly like the word journey as it is so over-used these days, but with cancer, it is definitely the right word to use. 

    Stay in touch, we are here to help and support each other.

    Lou x

  • PositiveLady10PositiveLady10 ✭✭ Posts: 52 ✭✭
    Thank you Lou, it’s lovely to hear somebody else’s views, who’s been there and done that.
    i have all my questions ready for my Surgeon and Oncologist for Friday.
    Then a heart scan Monday and talk and tour of chemo suite Weds,then start of chemo/Herceptin on Friday.
    I just want to crack on with it now it seems tests, tests and more tests for over 2 months!!
  • SunshinedaffSunshinedaff ✭✭✭✭ Posts: 773 ✭✭✭✭
    Hi @PositiveLady10 ;

    I know you have had a busy week with appointments and today you were starting chemo/Herceptin?
    I do hope that goes smoothly for you. How did you get on with your other appointments? Hopefully, the dr's would have been able to answer your queries to help you make informed decisions and at least feel like you have a clearer sense of road ahead.

    Just take each day at a time now, sometimes, its an hour at a time if it gets tricky.

    Thinking of you, 

    Lou x
  • PositiveLady10PositiveLady10 ✭✭ Posts: 52 ✭✭
    Hi Lou, thank you so much for remembering I had my 1st Chemo today ..... tick .
    my appointment with surgeon: options are— besides the known cancer there are 2 other suspect areas that don’t look normal , you can have a lumpectomy on the known cancer and leave the other areas there that could turn into cancer OR a Mastectomy!!!!
    Got almost 5 months of treatment before surgery, but I think it’s a no brainier decision.
    Then Herceptin injections every 3 weeks for a year.
    I am still getting my head around it all.
    I had my long hair cut really short yesterday to await the inevitable, and will be looking at wigs next week.
    Apart from it all, I’m ok ......really.
    I hope you are alright Lou,
    kind regards, 

    Barbara
  • SunshinedaffSunshinedaff ✭✭✭✭ Posts: 773 ✭✭✭✭
    @PositiveLady10 ;

    Hi Barbara, 
    I hope you are feeling ok after first chemo. It's all very daunting, but surreal at the same time. 
    Glad you got the information you needed from the surgeon. I agree, to be honest with you. I didn't have a choice, but I would have had the other chopped off too, if I thought it would help. If there are already suspect areas, don't give them the chance to turn.
    You have a while to get used to the fact before it happens. I am not familiar with Herceptin injections. 
    It is a lot to come to terms with, I do understand.
    Bless you having your hair cut short already, I can't deny that is a tough part, but once it started to go, I had it shaved off as soon as I could, plus I found it very painful as it fell out. 

    I hope these next few days go well for you, I will be thinking of you.

    I am very well, thank you for asking Barbara.

    Lou x
  • PositiveLady10PositiveLady10 ✭✭ Posts: 52 ✭✭
    Thank you Lou,your information and advice is really helpful and much appreciated, I don't know anyone personally that has gone through this "adventure ".
    I am having Herceptin as my breast cancer is HER2 positive, 1 in 5 are ...... and that's me 😂😂
  • SunshinedaffSunshinedaff ✭✭✭✭ Posts: 773 ✭✭✭✭
    @PositiveLady10 ;

    Hi Barbara, 

    I think that is where this community is such a good place to come. There are many here who have or had breast cancer, plus even if it is a different cancer, everyone here understands what you are going through. I would definitely encourage you to come and chat whenever you feel like it, good days, bad days, makes no difference.
    I feel like I am already making new friends here, and we don't always have to talk about cancer. 
    I am a firm believer in not giving cancer anymore attention than it gets already, we have lives to live, why should cancer get the upper hand in it all. The Channel 4 slogan comes to mind, but I can't repeat it here!


    Best wishes, 


    Lou x
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