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.

Thank you again for all the kind thoughts sent. So today the surgeon told me the margins are clear from my surgery. Yah. I had a total of 8 nodes with cancer cells. One with a small 3mm growth, the others just cells. It seems CT scans clear but he isn’t sure if the oncologist - who I haven’t seen yet - might want a PET scan done. Hoping not. My heart can’t take anymore right now. So glad to have the breast gone / awful as my bare chest looks - and just trying not to look into the future. My dad just called and the fear in his voice was almost more then I could handle. I hate the worry I am causing to my family. I am so grateful to live in this country with the health care we have available.

You poor thing, so much to deal with! I feel like it’s taking forever as well, diagnosed a month ago and starting treatment in a week’s time. All happening in the middle of my 17 year old graduating year 12. Like you I have dense lumpy breasts which is how mine went undetected as well- and it seems to get bigger every day! So scary. Don’t worry about being SO strong for your family, let them be strong for you a bit. I’m getting my son to help me more and my sisters are coming over offering help too, my girlfriends are bringing soup portions for my freezer, it’s ok to let them rally round and support you. Lots of love.

@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.

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.

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 .... https://www.canteen.org.auJust 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

Dark days | BCNA Online Network

62 Replies

ddon
Member
6 years ago
Well, my emotions are all over the place - guessing that’s normal - and my nights are punctuated with imagining how many small tumours are happily growing in distant places, and will I see my 7 year old turn 8, and my days trying to get on with things and carry on. My first oncology appointment is next Thursday and I am petrified he will want a PET scan and will find I am stage 4 before I begin. My CTs were clear. So many fears. And then there is the chemo and I am so afraid.
Then I put my big girl pants on and say I can do this (because, what choice do I have) and forward I go.
My portecath is truly a painful thing - more painful than my mastectomy and acilla sites. While the immediate area is improving I have tenderness in my upper arm which is newish. Not swollen or bruised, no fever, just very tender and stiff. My chest is bony and I have no padding but it seems to be more miserable than it should be.
I am complaining an awful lot. Just struggling right now with many fears.
Anne65
Member
6 years ago
@ddon Such wonderful news that margins are clear. The worst is over so try to focus on the positive & reassure your family especially your Dad, that his little girl will be OK!! Its natural that family are worried & they would do anything to take your pain away. It is hard to see them like that but reassure them that the worst is over so by having your boob gone, the cancer goes with it! You will continue to receive the care & treatment you need so rely on your medical team to look after you & give you the confidence to look forward to a wonderful future. You are doing really well. love & hugs xx
arpie
Member
6 years ago
Great news.
ddon
Member
6 years ago
Thank you again for all the kind thoughts sent. So today the surgeon told me the margins are clear from my surgery. Yah. I had a total of 8 nodes with cancer cells. One with a small 3mm growth, the others just cells. It seems CT scans clear but he isn’t sure if the oncologist - who I haven’t seen yet - might want a PET scan done. Hoping not. My heart can’t take anymore right now.
So glad to have the breast gone / awful as my bare chest looks - and just trying not to look into the future. My dad just called and the fear in his voice was almost more then I could handle. I hate the worry I am causing to my family.
I am so grateful to live in this country with the health care we have available.
Nefertari
Member
6 years ago
@ddon so glad that bit is over for you too, it does help to hear from others in the same boat. I don't think I would have made it this far if I didn't have this forum to uplift me :)
Anne65
Member
6 years ago
@ddon So lovely to hear from you. i have been thinking of you & hoping you are OK. So good to hear you have good care around you. Now its time to focus on YOU & give yourself time to heal physically & emotionally. We are all hear for you. One step at a time & youve just jumped the biggest one!! Love & gentle hugs xx
arpie
Member
6 years ago
Well done, @ddon - make sure you take your pain meds NOW - don't wait until 1am - and then take them regularly so the pain doesn't break thru again. Take care, sleep tight & all the best for your results xxx
ddon
Member
6 years ago
Thank you all for your thoughts and care. Surgery is done, portecath in and I am very sore but glad that bit’s over. Hoping the surgeon got good margins this time. Fingers crossed. The breast care nurses have been wonderful. Everyone of you have given me comfort and encouragement and I am so grateful.
Nefertari
Member
6 years ago
@ddon, thinking of you today and saying a few extra prayers for you. You are not alone in your fear, we all understand xx
Anne65
Member
6 years ago
@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

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Dark days

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