Dark days

ddon Member Posts: 349
edited November 2019 in Newly diagnosed
Just diagnosed this month, 1.5.cm invasive tumour, plus 3mm by 3mm tumour I couldn't feel. I am 46, have had regular mammograms and ultrasounds for years due to lumpy, dense breasts. I self checked religiously and I still didn't feel this lump until it got to 1.5cm. I had lumpectomy and sentinel nodes out one week ago, and now find 5 out of 6 nodes have malignant cells, and the margin around the larger tumour shows carcinoma insitu that needs to be removed, so I am having a full mastectomy Monday plus full axilla node removal, portacath inserted and I will start chemo before Christmas. I have 4 children, youngest 7, oldest 16 and telling them was horrendous and watching their fears and answering their questions. Trying hard to keep going as normal and reassure them I will do all I can to be here for them. I have a CT of chest and abdomen today that surgeon tells me is just a baseline for the oncologist for chemo but I am terrified it will show metastisis somewhere in there and it will be too late. Its been one month since I found this lump and made an appointment that day with my GP and I feel like this diagnosis/surgery/treatment thing is taking forever. I just wanted it out the day I found it.
 My husband is amazing and this is bringing us very close as we realise we can't take each other for granted any more. I have a very supportive family and have so much to be thankful for when others struggle through alone. But, feeling very alone and scared right now. Thanks for reading.


  • ddon
    ddon Member Posts: 349
    Thank you for your reply. I feel less alone. That lump does seem to get bigger every day - it's hideous and I didn't want to talk my bra off to shower because I felt like my breast betrayed me. Crazy. It's a busy time in your sons life; glad he has grade 12 out of the way. My eldest daughter will be doing that next year during my treatment. Feeling bad for her. 
    I feel like if I cope well then everyone else will but it's sure hard to keep it up. I hope your treatment goes well.
  • strongtogether
    strongtogether Member Posts: 165
    So sorry to read about your diagnosis ddon. This is a horrible situation to be in but there are good doctors and they have good solutions for so many of the problems that come with this disease. 
     You are not alone, and you will be supported the whole way through. 
  • shs14
    shs14 Member Posts: 141
    @ddon This bit is the very scary time, hang on there and once you get a bit further, know your full pathology and have started treatment it does get easier, you will feel normal again, even during chemo. I am nearly out the other side but I remember the terrible fear at the start. 
    That's great your husband is such a great strength, I am lucky that mine was too. We walked every day after diagnosis and it helped us talk our way through it and the exercise was great to keep my body strong for surgery, chemo and now radiation.
    The port is a great thing to have, I just had mine out but was grateful I did it. 

    I had twin sons going through HSC this year too and a daughter finishing Uni. And we survived it! Made us closer if anything and it was good for me to have someone else to focus on. 

    There is lots of advice here for the practical stuff once you are on the road but I am sending you my thoughts and wishing you the smoothest path through. Good luck with it.

  • arpie
    arpie Member Posts: 6,735
    SO sorry to see you here @ddon - all the best for your CT today & upcoming surgery & results xx  Try not to pre-guess them.  Mine was lumpy/dense & not found by mammogram too  -  so a double shock when found, as I'd just had an 'all clear' mammogram just 4 months earlier!

    Terrific that your hubby is so supportive.  Do you have a Breast Care nurse to help you with your appointments etc?

    What general area do you live in (City or town name) as our members may be able to point you towards specific services available to you and the family.

    The kids may gain a benefit from joining a group like - get to chat with other kids with similar stories ....    

    Just take one day at a time, one hour at a time if need be.  Don't hide it if you are not feeling well - it just puts more stress on you.  If you find yourself not always coping, ask to see a counsellor or psychologist - before it becomes a major problem.  Everything becomes so hectic now, towards the end of the year, too ... 

    It is an amazing rollercoaster ride - even more so emotionally than physically, I found.  It really mucks with your brain.  Feel free to rant & rave, get angry, have a cry - it is all a part of the grieving process as it all sinks in.   

    Big hugs coming your way, all the best xx
  • ddon
    ddon Member Posts: 349
    Thank you thank you all so much for your kind words and support. I had a CT of head, pelvis and abdomen this afternoon. Then appointment with my surgeon. No report came through for results; he could just see the pictures but could only tell me he couldn’t see anything but he’s not the trained radiologist. 
     So scary - I have a mix of both ductal and lobular carcinoma. And the insitu cancer that’s left is extensive. I have very small breasts - must be nothing left but ribs and cancer it feels like. 
    Anyway, one day at a time as arpie said. It’s all I can do right now. Will be so relieved if the CT is clear. I feel like I can face the rest if I just have some hope. I am near Toowoomba, Qld to the lady who asked. 
  • jennyss
    jennyss Member Posts: 1,783

    best wishes from jennyss in Western NSW
  • kmakm
    kmakm Member Posts: 7,974
    Hi @ddon. I'm so sorry that you've joined us, but know that here you'll always find support. We get you and we've got you.

    I want to hug you in sympathy for the hideous telling the kids moment. My sister-in-law, a very close aunt to my two children, died from a brain tumour in 2015. 10 months later my sister died from breast cancer. My husband and I are now raising her two children. The following year I was diagnosed. Telling my children, especially my sister's kids, that I had the disease that killed their mother, was hands down the hardest thing I've ever had to do. It was excruciating.

    The good news is that kids are resilient, and they get used to stuff really quickly. Keep them informed, at the correct level of detail for their age, give them opportunities to ask questions and let them lead you. Some kids want to know a lot, others very little. I found it was easy to disappear into myself and for my youngest, this caused her worry as a couple of times she was a bit in the dark as to what was going on with my treatment.

    Offer them access to counselling. They may not want it but sometimes a little push can be useful.

    Other than that, keep it as normal as possible. Just because I was feeling unwell in bed didn't mean I couldn't yell out to do homework!

    Your fear subsides once you get into treatment. It never really goes away though. A close brush with mortality changes you. It's a big adjustment, easier for some than others. Lean on your family and friends, accept help, keep exercising through treatment, and hang in there. Take everything one day at a time and be kind to yourself. And remember you're not alone. Big hug, K xox
  • Anne65
    Anne65 Member Posts: 420
    @ddon What a horrible time you have had. My heart goes out to you but it sounds like you have a strong & loving family so they will help you get through. It is a tough ride but you must try to think positive as stress fuels cancer so just try to focus on what you do know & not what may be around the corner as it may never come to that. Easier said than done. 
    I dont have kids but i can imagine how hard is it trying to deal with their emotions too. As mentioned above, a counselor can help you all if needed & I know my McGrath breast care nurse offered to counsel any members of my family too.
    Try to take one day at a time & tick off each step as it presents itself. Take notes at appts & someone with you as an extra set of ears & also take help from all those that offer. People love to help out even its a meal, housework or school pickup. You need to concentrate on YOU so let others help you & your family by letting them in & taking some of the burden of the "everyday". Wishing you love & strength & lots of positive thoughts. You WILL get through this & we will all be here for you each step of the way. We all learn very quickly just how strong we can all be during this time. xxxx

  • ddon
    ddon Member Posts: 349
    You are all so wonderful. My heart is full from everyone’s kind and very helpful thoughts and advice. I would love to thank you all personally if I could. It means so much to hear from people who have walked this road before me and got through it. I am trying to live one day at a time / I know that’s all I can emotionally deal with right now. I feel like crouching down with my arms around my head to protect from the blows of more bad news. But I can’t. I have a family who need me and they are a welcome distraction really. 
     Thank you again xxx
  • Anne65
    Anne65 Member Posts: 420
    @ddon Sending you love & prayers. Hoping the results from today are good so you have a clearer direction. Wishing you strength for Mondays operation when a big box will be finally ticked off. Not sure if you have a McGrath breast care nurse but i found mine wonderful. Her love, support & medical knowledge was invaluable before, during & after. We would speak over the phone about anything & I could ask her all the dumb questions! You can find one closest to you on the website & email her if you feel she would help you. Sending a big virtual hug & love & strength. Keep in touch. xx   
  • Anne65
    Anne65 Member Posts: 420
    @ddon Thinking of you today as you face your operation. Sending love & prayers your way. Stay strong & positive & know we are all here for you. Be kind to yourself & accept help & support from those around you. love & gentle hugs xx
  • Nefertari
    Nefertari Member Posts: 288
    @ddon, thinking of you today and saying a few extra prayers for you. You are not alone in your fear, we all understand xx