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BattyeBattye Member Posts: 5
edited October 2016 in Newly diagnosed
Hi everyone :)
I am a new member and a new breast cancer sufferer
I am so confused, my head is in turmoil and not sure what to do.
I am 41yrs old and was diagnosed with High Grade Invasive Ductal Carcinoma In-Situ on the 26th of August 2014
I'm not sure how I missed it but my left breast has a lump -4cm-
I have a strong family background of breast cancer and have to have a mastectomy BUT I really want to have a bilateral as I'm really scared that I will get breast cancer again and NEVER want to deal with anything like this again and I am positive that not having the right removed will be a major psychological issue for me BUT on the other hand I'm scared I'm making a very big mistake.
My surgeon has agreed to do a bilateral based on family history and my fears.
Is there anyone that has opted for a bilateral and had cancer in one breast?
All so I was reading about immediate breast reconstruction on other ladies Blogs and unfortunately this procedure is not offered in Tasmania (they do not do it)
I was diagnosed on 26th August but finally got my surgery date today, September 25th
This seems like such a long wait..... When diagnosed my lump was measured at 2.7cm and is now 4cm and thought I would get immediate surgery but have since found out there is a lot more involved with decision making and tests (waiting for results) and finding available appointment dates etc.
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Comments

  • Chook27Chook27 Member Posts: 3
    edited March 2015
    Hi Battye,
    So sorry that you have had to take this journey. I'm 44 and was diagnosed with a DCIS in my right breast in November 2013. I had a lumpectomy and sentinel node biopsy in December followed by a course of chemotherapy earlier this year. Because of family history I was tested for gene mutation - which came back BRCA2 positive. I made the decision to have a bilateral mastectomy as a preventative measure with immediate reconstruction. I had the mastectomy on 24 August 2014 and tissue expanders were inserted at the same time. These will be filled and then replaced with implants in the near future. I am in Tasmania too. I am happy with the choice I made but one thing I have learnt is that every person has an individual journey and what is right for one may not be right for another. It is definitely a choice that you have to be sure is right for you. I would definitely suggest having another chat with your doctor about the possibility of immediate reconstruction. I do have private health cover and had to pay money out of my own pocket so whether that makes a difference being public or private or not I do not know.

    I wish you all the best on your journey xxx

    Yvonne
  • Chook27Chook27 Member Posts: 3
    edited March 2015
    Hi Battye,
    So sorry that you have had to take this journey. I'm 44 and was diagnosed with a DCIS in my right breast in November 2013. I had a lumpectomy and sentinel node biopsy in December followed by a course of chemotherapy earlier this year. Because of family history I was tested for gene mutation - which came back BRCA2 positive. I made the decision to have a bilateral mastectomy as a preventative measure with immediate reconstruction. I had the mastectomy on 24 August 2014 and tissue expanders were inserted at the same time. These will be filled and then replaced with implants in the near future. I am in Tasmania too. I am happy with the choice I made but one thing I have learnt is that every person has an individual journey and what is right for one may not be right for another. It is definitely a choice that you have to be sure is right for you. I would definitely suggest having another chat with your doctor about the possibility of immediate reconstruction. I do have private health cover and had to pay money out of my own pocket so whether that makes a difference being public or private or not I do not know.

    I wish you all the best on your journey xxx

    Yvonne
  • AHudsonAHudson Member Posts: 1
    edited March 2015

    Hello Battye, May I encourage you to contact one of the local breast care nurses.  there are breast care nurses around Tasmania and they will be able to talk with you and provide some support/information and help. I don't know where you are located but you can contact Breast Screen Tasmania on 13 20 50 and ask reception  to speak with one and they will be able to help locate your closest BCN.

    take care and please make that call.

  • DeanneDeanne Sunshine Coast QldMember Posts: 2,138
    edited March 2015
    I am so sorry that you are facing all this. It is such a difficult thing to wait when all we want is for the cancer to be gone and life to return to normal.

    But time is on your side. DCIS is not invasive cancer so as much as you want it gone right now a few weeks will not make a difference in the long run. It is so important that you make the choice which will give you the most peace of mind down the track.

    My diagnosis was in May last year. I had 3cm invasive ductal carcinoma as well as 3cm high grade DCIS. It can be difficult to make a decision before surgery as until they examine the cancer after it is removed you don't really know the whole picture. There are lots of things to consider, many of these very personal to you. Some people have a lumpectomy or single mastectomy and then gather as much info as they can before deciding on any further surgery. You could be tested for the BRAC genes and this could help you with your decision.

    Don't feel that you have to make all your decisions before your surgery on the 25th. You can always decide to remove your other breast later in conjunction with reconstruction. Take your time and find out as much as you can before you decide what is best for you.

    Wishing you all the best for whatever you decide. Take care. Deanne xxx
  • BattyeBattye Member Posts: 5
    edited March 2015
    Thank you AHudson,
    I will get on to that today x
  • BattyeBattye Member Posts: 5
    edited March 2015
    Hi Shat,
    I am so sorry to hear what you are going through and believe me I understand (lol) yes mine is all so invasive and neoadjuvent but am about to look into that as well.
    I have just rang my GP and made an appointment to talk about all my concerns and details on who to talk to for reconstruction.
    Thank you again Shat and I WISH YOU ALL THE VERY BEST for your journey yet to come x
  • BattyeBattye Member Posts: 5
    edited March 2015
    Hi Deanne,
    It is so nice to have ladies give such helpfull advice yet it saddens me that there are so many, I had no I dea who common breast cancer is.
    I all so have Invasive Ductal Carcinoma high grade and it seems I have not been given half the information that you have but I'm now taking back control and going to spend my day like a Telemarketer haha ring every doc, nurse, info centre etc... So I know I get everything I need to make the disicion that I feel would best suit me :)
    Thank you so much Deanne for taking the time to offer some fantastic advice x
  • CustardCustard Member Posts: 428
    edited March 2015

    Hi ladies, just want to remind you that there are support groups held around Tassie that are comprised of women who have been there and done that. We are a mine of information, helpful hints and experience so do please contact the nearest to you. Do a search on BCNA for support groups.. Launceston's meet each first Tuesday of the month at the Cancer Council , 69 Howick Street, Launceston.

    None of us want anyone to feel alone, desperate or under-informed.

    Chins up, eh? All of them!

    Mandy

  • Robyn WRobyn W Member Posts: 1,932
    edited March 2015
    Welcome to the online network.It is such a stressful time,but exactly as Deanne said,a few weeks will not make any difference.I didn't have DCIS,I stead I had invasive ductal carcinoma.When I was diagnosed,I thought that BC was all the same.Oh boy have I learnt a lot in the last year.On this network of AMAZING ladies,you will find an answer for every single thing that you need to know.No question is silly,and you can come here 24/7.There is always someone here:)Don't feel pushed into anything.It is your body,and as Deanne said,you can always go back for more surgery later,and just deal with the cancer now.Its totally up to you.Please stay in touch and let us support you.CheersxxxRobyn
  • TonyaMTonyaM Member Posts: 2,656
    edited March 2015
    You have done soooo well to arrive at a comfortable decision in only 24hrs- well done you! No decision in this crap bc journey is ever easy or right or wrong.You research,ask questions and then go with what feels right for you for now.I had to have a mastectomy 4years ago and honestly,at the time.I just wanted the cancer gone ASAP. So I still have one breast and wear a prosthesis. Having the other breast off or having reconstruction can all happen later if you want.Best wishes and stay at this network where you'll get lots of info and support. Tonya xx
  • dmeddmed Member Posts: 158
    edited March 2015
    Sorry you have had all of this happen but you are at the right place to get some help. Agree would be good to contact a breast nurse. I'm in Hobart and they were such a help with information and putting you in touch with people. We have a support meeting here in Hobart once a month and a online group as well. Sending a hug your way as you start your journey Deb xxxx
  • dmeddmed Member Posts: 158
    edited March 2015
    Sorry you have had all of this happen but you are at the right place to get some help. Agree would be good to contact a breast nurse. I'm in Hobart and they were such a help with information and putting you in touch with people. We have a support meeting here in Hobart once a month and a online group as well. Sending a hug your way as you start your journey Deb xxxx
  • NaturalBelNaturalBel SOUTH ADELAIDE Member Posts: 542
    edited March 2015

    Hello there, I hope by the time your read my quick message, you would have been on the phone and started the questioning process, as I did.  I am glad I felt comfortable to reach out for help, because there is a lot to worry about, and worrying solves nothing.  I found discussing it with the RIGHT people made a massive difference.  I am happy to chat to you, if you live near Legana Amcal Pharmacy, come in and say hi.  If you are in Launceston.

    Ring the Cancer Council and ask them for the correct phone numbers and also, I highly recommend Counsellors for yourself and any one else who is worried.  Keeping a calm head is half of it.  We all know how easy it is to go to bed and stay awake thinking about every thing, all night long!  So to stop that, just pick up the phone and get answers.

    Everybody you hear from will have an individual story, but we are all different, with different decisions to make.  In the end, I found that it didnt really matter what others thought, it was about what was right for me.  I listened to doctors, nurses, counsellors and specialists, then discussed all with family to get my answers.  Then I strongly believed I would be OK......and for me......I am.

    I am back at work now, and still hoping I can win LOTTO !

    Good Luck, from Belinda McKenna LEGANA PHARMACY ASSISTANT

  • YvonneMYvonneM Member Posts: 16
    edited March 2015

    Well said Belinda!!!  Kind and wise words.x

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