Newly Diagnosed and Anxious

Molly71
Molly71 Armidale NSWMember Posts: 16
Hi I am 51 and was diagnosed in late April and had a Lumpectomy and SLNB on 13th May after finding a lump in late March. I was shocked to find out about 5 days after the surgery that I had a 2.2cm IDC, with nodal involvement (4 of 5 at this stage) and that it was Aggressive - Grade 3 (so Stage IIIa and Grade 3). However, one of the margins was not clear (the DCIS part) and so I need a re-excision and have opted for a complete ALND (as there is some indication more nodes are involved), I am also having the Port for Chemo inserted then as well.

My next surgery however, is not until the 21st June, which I feel is too long away given the aggressive grade, although this is the earliest date my Surgeon could do (even as a private patient - as my surgeon does both,  the time would only have been 2-3 days difference). At this stage my other Scans seem ok, but I am now feeling very very anxious that waiting another 3 weeks for surgery and then another 4 or so weeks before Chemo means that it could be progressing given the grade. I know that the system can only go as fast as it can cope with, but this doesn't help my anxiety and fear and it just feels like the aggressive grade of the cancer is being ignored. I am an anxious person without this situation, so the waiting and the mind/brain drifting is even worse now. I was not doing too badly  until I found out the Grade 3 nature, this really freaks me out and I get these feelings that the cancer is just running through my body and I just want to get started on the Chemo etc.

I do try and keep busy and I exercise, and aim to be as positive as I can be, but just yesterday I felt like it all got too much and I could not function that well and it all felt like it was falling apart and I cried almost all day (even when watching the new Top Gun movie!)

I have been vigilant about having Mammograms and Ultrasounds since my 30s, as I have dense breast tissue, and my GM had BC, so this diagnosis (only a year after a mammogram was clear- no US last time as it was the welcome to 50 screen and all previous US over many years had been clear and only ever show some small cysts that come and go, which is what I thought this would be) has really felt like a big kick in the guts. I have good family and friends, but I feel like a burden on them. My sister recommended BCNA to me so am hoping that this may help.
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Comments

  • AllyJay
    AllyJay Member Posts: 911
    Hi there @Molly71...I'm sorry you've had to join 'our' club, but welcome to the group. I was diagnosed with Stage 3, Grade 3, Triple Positive, multifocal (more than one lump) and with node involvement in September 2016. I remember so well the total shock, fear and feeling of doom at the time. The waiting for me was the very worst too, as I imagined all these groups of cancer cells swishing about in my blood and lymph vessels, looking for a cosy spot to set up a new franchise. I also thought the doctors were fiddling as Rome was burning and was ready to chew off my boobs if necessary.....Didn't the "get it" that this was my life??? I was convinced that I'd be dead before Christmas, and as an avid knitter, set about knitting my (at that time) only grandson of 14 months, jumpers in sizes 2, 3, 4, 5 and 6 so that he would have something to remember his dead granny by. Well, the Little Man is now almost 8 and has a little sister of nearly 3 and their granny is still here with a status of NED...no evidence of disease. Trust your team...this is their bread and butter and breast cancer (of all types and grades) is a well known entity to them. Easy to say, I know, but try to use the waiting time to keep yourself busy. plant some herbs in pots, or take up a new hobby, or just veg out in front of the telly...whatever soothes your soul. In this group, we all get it. We've all been there and understand your distress, and this is a safe place to ask questions or even just to blow off steam. Big (((hug)))...Ally.
  • Afraser
    Afraser MelbourneMember Posts: 4,075
    @Molly71

    It’s an anxious time. Anything and everything will conspire to worry and alarm you. It’s very unpleasant but also very normal. A wait of four weeks between surgery and chemo is very common. As for the surgery wait, while you will imagine the worst, your medical team understand the nature of your cancer (cancer is immensely varied) and will act accordingly. Your instinct to keep busy and exercise is a good one. Far from being a burden, most family and friends are only too keen to help in this situation, but often have no idea what to do. Let them help with distractions! And don’t let go of the knowledge that you have been very vigilant - not having one ultrasound did not cause your cancer. It’s been detected and will be treated. Medical terminology can be very alarming but defines the action required not necessarily the speed required. The best you can do is prepare yourself to be as fit and well, physically and emotionally, as possible for the next steps. Best wishes. 
  • Cath62
    Cath62 Brisbane Member Posts: 1,000
    @Molly71, I had grade 3 too. It scarred me but I am 2 years since diagnosed. Treatment is so good now. It is so overwhelming at the start. All the other ladies advice is great. Good you are exercising. It really really helps, well it helped me but it's ok to rest, cry, yell or whatever to get through. Best wishes to you. Big hugs 💐
  • TonyaM
    TonyaM Member Posts: 2,758
    Hi @Molly71,
    I can understand your anxiety,the waiting is just the pits! With my first bout of bc(2003),I had to wait 2weeks for surgery and I was shaking like a leaf most of the time.I had visions of the cancer cells racing around my body.I’m not drinker but I was downing the Irish Baileys each night to calm the nerves. I had a lumpectomy,full node clearance and radiation. In 2010 I got bc again in the same breast and had to wait 3weeks for surgery (mastectomy) It’s quite common to wait 3or4 weeks. Looking logically at your situation,here’s what I see- 4 out of 5 nodes were affected so the 5th one was clear and so there’s a good chance that the rest are too. A clear margin is a standard measurement from the cancerous area and if they don’t quite get that then it’s not clear. The incision may very well have cleared the cancer but it’s not enough according to the required measurement. So try and stay neutral rather than thinking the worst.I’m now 12yrs on from my last bout of bc(or 19yrs from first) and  you are looking at the biggest sook ever! Hang in there,trust your team and do whatever brings you calm.xx
  • jennyss
    jennyss Western NSWMember Posts: 1,710
    Dear @Molly71,

    from jennyss in Western NSW
  • Julez1958
    Julez1958 SydneyMember Posts: 708
    Hi yes the waiting is the worst.
    My tumour was missed on a mammogram only 12 months before I found it as a lump .I had a wait of 6 weeks from diagnosis to my mastectomy as I had to undergo a variety of tests and missed a week due to getting a cold and Covid 19 protocols.
    I felt like I had a radioactive beacon inside my breast and was 11 out of 10 on the anxiety scale! My surgeon said it had been there a long time and the wait was not going to harm my prognosis.
    Try and keep busy in the lead up to the surgery , exercise is good and also I bought some  nice books to read .Take care🌺
  • Molly71
    Molly71 Armidale NSWMember Posts: 16
    @Julez1958, @AllyJay, @jennyss, @Afraser, @TonyaM, @Cath62
    Thank you all for your responses. While I am not necessarily "happy" to be part of the "club" I feel that this will help will be a big help in this journey. 
  • Cath62
    Cath62 Brisbane Member Posts: 1,000
    It isn't the club we want to be in but we are here @Molly71 😀. This group made my treatment easier to get through. I have made friends here, friends who supported me or shared a similar 'journey'.  Let us know how you are going and where you are in treatment and how you feel if you like.
  • Mazbeth
    Mazbeth BrisbaneMember Posts: 194
    Hi @Molly71 this network is amazing and helped me so much. I am 2.5 years post my diagnosis in 2019. I found that watching the videos on the BCNA site really helpful. There is one that is along the lines of ‘so you have been recently diagnosed’ and it was excellent. In the meantime, steer clear of google. I did go to a Look Good Feel Better program, which I honestly didn’t want to go to. However, I met 4 other girls and we are the best of friends who catch up whenever we can - the workshop was great, but I never realised I was going to meet 4 incredible women who I can message any time and know they are on the other end. @TonyaM has offered some great points - try to to focus on what you know to be true, the facts and not the what ifs. In this moment, the tumour has been removed, but they just need a little bit more for safety. 4 of the 5 nodes were involved and again, they will take more for safety. It is a lot to process and it is totally ok to feel overwhelmed, but try to be in this moment. Take care Mx 
  • Molly71
    Molly71 Armidale NSWMember Posts: 16
    @Mazbeth, thankyou, yes it is a lot to process. I will check out the videos - particularly the one you mentioned. Thank you
  • wendy55
    wendy55 Copper Triangle South AustraliaMember Posts: 753
    Hi @Molly71,
    Not much more that I can add to all of the above,just to say we get it,we understand,
    take care, be gentle on your self, everything will happen the way it is supposed to,

    wendy55