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My story

Lala
Lala Member Posts: 16 ✭
edited September 2016 in Metastatic breast cancer

After having clear scans in Nov 2012 and a clear breast check by a Dr on Gynae ward of  local public hospital in Feb, I found a largish lump in my right breast in April.

Was diagnosed with Grade 3 IDC on 24/4/13. Had surgery to remove a 5+cm tumour on 9/5/13. The breast was preserved. Not sure if that's a good thing or not as I am having issues with swelling. After all pathology came back, I recieved the news that the lymph nodes were clear, clear margins had been taken all around the tumour, and that it was a triple Neg cancer. tougher to treat but overall, a good result.

However, during a consult with the oncologist, she noticed a lump on my collarbone. Subsequent scans showed 3 hot spots - sternum, rib under tumour and sternoclavicular joint, where there is a largish mass. Chemo was subsequently brought forward by 3 weeks and I have undergone my first TAC infusions last week, 29/5/13.

This has all happened so quickly. A month from diagnosis to first chemo. The metastases in the bones have really thrown me. I have a consult with oncolgy team again today to discuss changes to proposed 6 cycle of TAC, knowing I have spread of cancer.

Would love to hear others experiences as it feels like a very lonely journey atm. I am 45 yo, single and have one daughter who lives interstate. I have some incredibly supportive friends close by and family a few hours away. I am not working due to suffering a chronic neurological condition - Idiopathic Intracranial Hypertension -  for past few years.  That in itself is a challenge to manage. I don't do things by halves!!!  ;)

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Comments

  • Mich x
    Mich x Member Posts: 1,530 ✭
    edited March 2015

    Hello Lala

    Lovely to meet you but I am truly sorry you have to be here.  You have come to the best place for some love and support and advice when needed.

    Have you been in contact with BCNA to receive your Hopes and Hurdles pack.  You can order it online thru resources at the bottom of the page or phone BCNA direct.  I know I harp on these resources but I think everyone who has used them have found them invaluable.  Plus there is so much information in them.

    It does sound like you are pretty much on your own.  Which state do you live in?  I am in Perth.  There are so many supportive groups out there in all different areas that will assist you or support you if you need.  I am so glad you do have very supportive friends and some family near by.  We are here to chat with you whenever you need.  You can use the Search mode at the top of the page and type in what you are looking for and posts from other girls relating to that will come up.  There is a great post called what has helped you through your journey.  I do know there are different groups on the network of BCNA which relate to different forms of cancer.  You can always contact BCNA by phone and the girls there will be more than willing to point you in the right direction.  They are not there for medical advice but will definitely be able to assist you with any support you need.

    Sounds like you have been doing it tough already with your other illness but I am sure it has made you stronger and hopefully that will help you fight this latest setback for you.  It is good that it has all happened so quickly so you didn't have the time to worry over it all but I am sure it was a huge shock for you to get the latest diagnosis.  

    I am unable to say the words to show you that you are not alone and that we will support you in any way we can.  We are here for you.  You have touched my heart.

    I am thinking of you, lots of love always, Mich xoxoxo

  • Lala
    Lala Member Posts: 16 ✭
    edited March 2015

    Thanks for replying Mich.

    I am in Hobart, Tasmania. I was actually here on extended holiday when diagnosed and live in Qld, but decided to stay here where I have more support throughout my treatment.  I am generally a tough cookie and find I can tackle most tthings with a positive spirit. I certainly intend to do that with this rotten cancer, once i get over the shock!!

    I am finding this site very difficult to navigate. Any tips?? I'm an experienced user of forums and support groups and all forms of social media, but trying to find the actually messages my "inbox" is telling me I have is rather challenging!!  Help - floundering here!

    Laree ;)

  • Lala
    Lala Member Posts: 16 ✭
    edited March 2015

    Thanks for replying Mich.

    I am in Hobart, Tasmania. I was actually here on extended holiday when diagnosed and live in Qld, but decided to stay here where I have more support throughout my treatment.  I am generally a tough cookie and find I can tackle most tthings with a positive spirit. I certainly intend to do that with this rotten cancer, once i get over the shock!!

    I am finding this site very difficult to navigate. Any tips?? I'm an experienced user of forums and support groups and all forms of social media, but trying to find the actually messages my "inbox" is telling me I have is rather challenging!!  Help - floundering here!

    Laree ;)

  • Mich x
    Mich x Member Posts: 1,530 ✭
    edited March 2015

    Hey Laree

    Just up above the box on right that has your profile there is a Q & A tab and there is also a Help tab.  Perhaps give them a go.

    Your Messages - if you click on Inbox below where it says your messages in your Profile Box all your messages should come up.

    I have messaged Daina who is our online Network Guru who should be in contact with you soon and she is able to help you find your way around the site I am sure.  Hope that helps.

    Tassie is an amazing spot.  My beautiful daughter booked a trip of flights and amazing accomodation for hubby and me for Mothers Day when i was going through my treatment.  The only problem was that it had to be used by a certain date.  We decided to go between my chemo and radiotherapy but unfortunately I was still very unwell and my lymphodema decided to pop its ugly head while over there so I didn't get to enjoy it anywhere near as much as I could have.  We did do some touring around in the week we were there but my favourite thing was the Salamanca Markets which blew me away.

    I can't wait until we can afford to return for longer than a week and also when I am fighting fit so as to enjoy every minute of it.

    Lots of love, Michxo xoxo

  • Leonie Moore
    Leonie Moore Member Posts: 1,470 ✭
    edited March 2015

    You definately are in a nice place.  Support whilst going through the bc journey sure is a must.  I have a young friend who is going through similar to yourself.  She has secondaries in the sternum and mets in her lung.  She is extremely proactive with her treatment and has done a lot of research to find the best oncologist.  I will message you her name.  She is on this site but not too often as is mostly on facebook (advanced breast cancer support group).  You might like to message her. XLeonie

  • Leonie Moore
    Leonie Moore Member Posts: 1,470 ✭
    edited March 2015

    XLeonie

  • TonyaM
    TonyaM Member Posts: 2,836 ✭
    edited March 2015

    What alot to get your head around in such a short period of time.Most of us just have to cope with the breast cancer shock.It seems they moved the goal posts on you after you got through surgery.So sorry to hear you've got bone mets as well but it's good your oncology team are fast tracking your chemo. This is a terrific network to join - we all support each other and share information. I've had early breast cancer twice(in the same breast)-first time in 2003 and then again in 2010.As a result,I've had all the treatments and am now on Tamoxifen.I can only imagine how scary it is at the moment for you but they have so many more drugs now to treat bc  metastises and women are surviving longer and living well,I have one such friend who was diagnosed 4 years ago with bone mets.  So blog back here any time for info and support or just to vent.You are not alone-sending hugs

                                       Tonya xx

  • [Deleted User]
    [Deleted User] Posts: 0 ✭
    edited March 2015

    Hi Lala, Further to Leonie's comment. You can connect in with others who have also been diagnosed with bone mets through the 'Women living with advance breast cancer' group her in the online network - Follow this link and request to join. -- http://www.bcna.org.au/group/4218

    Please let me know if I can help you find your way around.

    ~Daina

  • NaturalBel
    NaturalBel Member Posts: 542 ✭
    edited March 2015

    Hi Lala, I am currently attending The Launceston General each day for Radiation, mon to fri, as part of my treatment as a Triple Negative Breast Cancer person.  I just turned 47, so similar age.  I have had great support here via BCNA, and through the Launceston Cancer Council.  Wishing you all the best of luck with your health, sounds like its a lot for you to have to cope with.  I hope you find some relief via the great people on here, and there is plenty of support for people out there.  Good luck, Bel

  • Amy
    Amy Member Posts: 233
    edited March 2015

    Hi Lala

    Receiving the news that the cancer has spread is devastating. I was diagnosed with mets in bones right from the start.  Here you will find great support - it was a lifesaver for me when I was first diagnosed.

    Know that you are not alone.  Take care.

    Amy

  • Amy
    Amy Member Posts: 233
    edited March 2015

    Hi Lala

    Receiving the news that the cancer has spread is devastating. I was diagnosed with mets in bones right from the start.  Here you will find great support - it was a lifesaver for me when I was first diagnosed.

    Know that you are not alone.  Take care.

    Amy

  • MandaMoo
    MandaMoo Member Posts: 500 ✭
    edited March 2015
    Hi Lala
    I'm sorry you have had such a rough start.
    You are not alone. You will get good support and information here. When you are ready the Hopes and Hurdles kits is a good place to start which you can order online from BCNA.
    Leonie mentioned our group on FB which has about 40 members you can message me if you want more information.
    You are not alone, there are many of us living fulfilling lives with this every day.
    You can too.
    A xx
  • Lala
    Lala Member Posts: 16 ✭
    edited March 2015

    Thank you everyone for your kind words and messages full of caring and support and helpful information. I don't have a reliable internet connection atm - only on my phone - and therefore my visits here may be a little sporadic until I move. I'm slowly exploring the site and getting a handle on the navigation. Daina, I mistakenly assumed this site worked more like a forum rather than a blog and comments style arrangement. Hence, my confusion trying to find said forum!!! lol

    Things ahve been very hectic this past couple of weeks. I had my first chemo on the 30/5 and thought i was doing very well. Kept up my regular activities, felt fatigued and "odd", slight nausea but okay. Or so i thought!! I woke up on WEd morning last week - a full week post chemo - and felt fantastic! Then i realised just how crappy I had really felt the week before!!! Amazing what ignorance/positive attitude can do!! lol Now that I'm aware I will feel slightly crappy for the first week, I will not force myself to do quite so much. :)

    I'll check in again soon. Thank you all for your warm welcome :)

    Laree

  • Lala
    Lala Member Posts: 16 ✭
    edited March 2015

    Hi! Thanks for your message. I would like to join your facebook group if possible??  It would be nice to chat with people who are in a similar position. Still rying to figure out the Private Message thing.....

    Laree :))

     

  • Lala
    Lala Member Posts: 16 ✭
    edited March 2015

    Hi Bel,

    You are the first person I've met with triple neg cancer. Can i ask what treatments you have had? surgery? Chemo? and now radiation- for how long?? I'm being tested for the BRAC genes so I may not have radiation post chemo if I require a double mastectomy, as radiation makes reconstruction difficult. Also do not know if reconstruction is for me.... I'll deal with that as and when i have to:) I have lots of questions but I wont bombard you with them all. I hope you are coping well with the radiation and have a great result. 

    Laree :))

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