new to bcna

Judithm
Judithm Member Posts: 16 ✭
edited April 2019 in Newly diagnosed
Hello all  I've just joined the network.  This is my status.  Lumpectomy after DCIS insitu highly invasive, nuclear high grade, too small to be able to get hormone readings.  Yes, I'm lucky....sort of.  I now need to make the decision of radiation or skin,nipple sparing mastectomy with no radiation or chemo at this stage..  And I'm numb and unable to make the decision.   I would dearly like to communicate with other women who have had to make a similar decision to me.  Women who've been in a similar position to me.  I have such a fear of making the wrong decision as both options have equal downsides and equal upsides.  Help and thank you in advance  kind regards Judy c
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  • Judithm
    Judithm Member Posts: 16 ✭
    A little more about me - I'm 67yo, reasonably fit, live alone, my only family are my 2 adult children, neither of whom live close by but who are able to take time off work to help me through if I opt for the immediate reconstruction mastectomy.
  • kezmusc
    kezmusc Member Posts: 1,553 ✭
    Hi @Judithm,

    It is bloody awful how many decisions you have to make through this when your brain appears to be somewhere else.  My situation was a little different but as I was adamant about having the lumpectomy vs mastectomy  I had to have the radiation.
      I really didn't find rads much of an issue at all. No fatigue, minimal skin problems.
    It's almost two years since I finished radiation and the only side effects that are apparent at the moment are a little heat in the area at times and the occasional ache where they nuked my chest nodes. I just have to be a bit careful in the sun.

    Good luck with your decision.
    xoxoxo


  • Judithm
    Judithm Member Posts: 16 ✭
    thank you for your response. 
    Did you have the prone position and how many treatments.  I've had 2 different radiation oncologists tell me a different number.  One said 25 and the other 16.  I didn't think to ask at the time if the amount/strength of each was the same or different.  What a great site this is...So many wonderful women sharing so much thank to to all of you  xx
  • kezmusc
    kezmusc Member Posts: 1,553 ✭
    There certainly is some awesome people on here @Judithm.  

    I had 30 sessions. I have no idea what the strength was apart from the fact that the last week was a targetted boost to the scar area.  I was on my back for all of it as my supraclavicular nodes and where the lymph nodes were removed under my are had to be zapped. I am sorry but I don't know about the prone position or why they use it.


  • Judithm
    Judithm Member Posts: 16 ✭
    Hi There 
     In my first post earlier today I only told a part of my story. 

    I've had the lumpectomy but no sentinel node biopsy.  

    But, the tumour was so small they couldn't tell anything more than it was a nuclear high grade malignant carcinoma.  I'm still learning all the letters and numbers beyond that.  
    The reason I chose lumpectomy only (sentinel node intact at this moment) is that the initial biopsy showed random high grade cells outside the tumour.  I wanted to know just what it was before I had any other bits removed.

    I was very lucky to have clear margins and am most grateful.

    Also, I've had conflicting options from 2 different breast specialists.  One said radiation is my only option, as I have a heart abnormality no one would operate on me.   This specialist said emphatically that I didn't qualify for a nipple/skin sparing immediate reconstruction mastectomy either due to breast size.

    I checked with the cardiologist who did an angiogram, so I was back in a cath lab theatre 4 weeks after the lumpectomy.
    He said I'm ok to proceed with my choice of radiation or mastectomy. 
     
    I've also had radiation dye CT scans as there is a small amount of fluid around my heart that is a sign there is a secondary cancer somewhere - not found yet and hopefully never is.  Another dark cloud hovering though and more cardiologist follow ups to come

    The second breast specialist said I did qualify for what would be the only type of surgery I would proceed with at this stage - conditional on my heart being ok which it is at the moment.

    The past 2 months have been hell.  Cancer,  surgery, cath lab, then finding I had a heart abnormality, then differing opinions from specialist and differing opinions from 2 different radiation oncologists about how many treatments I would have.

    At 67 yo with a heart issue that has the possibility of deteriorating over the years ahead,  leaves me with one hell of a choice to make.  Surgery while I can?  The cancer was found on the right side by the way. 
    Or radiation.  In my circumstance tram flap surgery, if it was ever needed in the future isn't an option - too long in theatre for my heart.

    I'm torn apart with stress over what to do.  Any both my children suffer watching me agonise.  No one can make the decision I know but ...............  xx to all the wonderful women out there going through some form of breast cancer
  • arpie
    arpie Member Posts: 8,198 ✭
    Gosh!  So many different opinions - and the heart problem thrown in as well!  No wonder you are in a quandary.  

    What a bugger that everyone has something different to say.  

    I had a lumpectomy, breast conserving surgery with immediate 'tidy up' - and 15 months later, have minimal scarring.  My surgery isolated the nipple & everything was removed (including sentinel nodes) from under the skin & then the skin trimmed & nipple sewn back in place, with some of the excess fat from the breast filling up the hole from the tumour.  

    Mine was also the right hand breast.  I had radiation for 4 weeks - 20 in total, with the last 2 being 'boosters'.  I had mine 'prone', so lying face down, which allows them to target the area very specifically, specially if the tumour is close to the nipple.  I never ever thought that I was 'big breasted' - only ever having been a size 34!  However ... I stopped wearing bras decades ago & I guess my boobs 'stretched' a bit (I never had kids!) so suited the prone position.   The prone position also prevents the radiation from affecting the heart & lungs too ..... something I was grateful for. 

    I don't envy your choices - hard to understand why everyone has a different opinion. Have they explained WHY each one has that opinion?  Maybe record it & let the other specialist hear it!!  

    I hope you have someone with you in these discussions, as they may pick up on a detail that you could miss in the stress of the discussion.  Can you record any discussion for your own record?  I do.
  • Sister
    Sister Member Posts: 4,961 ✭
    Welcome @judithm I'm sorry that I can't help with your decisions and so hard if you have been given conflicting advice.  Hopefully, some others who have been in similar situations may come on.  I think that you need to think seriously about the pros and cons of each option - not just the immediate but how you think you may feel in the future as a result of each treatment.  Sometimes it becomes clearer if you actually write things down as a list.  As for rads - I believe that the current suggested protocol is for less doses at a higher strength.  What actually happens, depends on the medico/hospital and whether they are open to the change.  I went through the new Royal Adelaide Hospital and had 15 treatments.  I believe under the previous regimen, that would have equated to 25 treatments.  The reasoning is that it has the same effect, is less onerous to the patient and apparently, less impact on the skin.  However, someone else may be able to give you more info @joeyliz?
  • Judithm
    Judithm Member Posts: 16 ✭
    Good morning,
    Since the very helpful responses from all, I've been back to the radiation oncologist.  The 16 treatments will be at a higher dose but apparently this allows the area to be more specifically targeted.  I do qualify for the prone position. 

    The target breast has reduced in size since the lumpectomy - now a 12D.  I was told my lymph nodes would be untouched...
    I see the breast specialist again next week and I'll ask for a copy of the report from the radiation oncologist. 

    I now ask for and keep copies of every report from everyone.  After the 2nd opinions from all specialities giving me quite different and at times conflicting opinions, I personally feel the need to read everything and have everything explained in detail to me.

    I'm still agonising over the choice I have to make - radiation or skin, nipple preserving mastectomy with immediate reconstruction.

    I would dearly love to hear from women who've had to make this choice, what they decided and how they feel post the decision and surgery/treatment.  

    From a cost perspective for either choice, (I'm a private patient): 

    I've reached the medicare safety net already, radiation will still cost $3300 after all medicare rebates are paid to the Clinic here in Brisbane.  There may be some negotiation on this for those who need the treatment but can't afford this.  I have been offered some concession re fees and am thankful for it.  It's been an expensive year!!!

    Ironically, after all medicare and private health fund rebates, including hospital stay, theatre fees etc, all the doctors involved, the mastectomy/reconstruction cost would be less than $1500
    Go figure.....this seems crazy to me.

    Best wishes and thoughts to all who visit this site xx


  • JulieVT11
    JulieVT11 Member Posts: 90 ✭
    Hi @Judithm the initial decision making process I found to be just so overwhelming.  I had a mastectomy last November for DCIS and small tumor - very low grade so no chemo required thank goodness.  I didn't have reconstruction at the time but now regret that, everything was so full on and rushed and my surgeon sort of talked me out of it.  Life now as a mono-boobed lady is ok but as someone said on the forum in the last few days the scar is like a constant daily reminder that I had breast cancer.  Now to go back and have reco - I would like to go with a DIEP reco has quite a few issues - it's another big surgery, time of work and recovery and the cost (my surgeon said it would cost between $5-$10k out of pocket).  It's such a big decision to make and I think the affect that it has on you mentally is so underestimated until after the event.  At the end of the day it is your body and you have to decide how you want to look and feel.  good luck xx
  • tigerbeth
    tigerbeth Member Posts: 539 ✭
    @Judithm sorry you are here , I cant help with your decision ,just wanted to say you can do your radiation as a public patient & it doesn't cost you anything .Hope this is an option for you.

    Good luck x
  • Judithm
    Judithm Member Posts: 16 ✭
    Yes, tigerbeth, it is my decision, not that family/close friends necessarily agree with this.  I've certainly had interference that has been destabilising and slowed my progress down.  Now I'm not saying much to anyone until I'm ready to go with my decision.  I had surgery booked for 26 March, then cancelled and am now plucking up the emotional strength and courage to get there again.

    JulieVT11 - good to hear you've come through this physically well.   Surgery is still seeming like the way for me to go, scary as the thought is.  It leaves all other treatment options available.  The breast surgeon I will use does many, is highly regarded, though the procedure does carry some risks. The reconstructed side will be a bit smaller than the other one, so I may need a reduction on that one......
    And the muddle head, sleepless nights and tear upon tear.....well, I'm coming to the conclusion this might well always be quietly sitting in the background of my life, erupting at inappropriate times as it currently does. 
    My DCIS surgery produced clear margins, the tumour was tiny and I'll be forever grateful to the wonderful people at the Wesley Breast Clinic where it was detected.  My annual check was 14 Dec last year, I was told it was cancer on New Years Eve at 5.10pm while driving to the other side of town to look after my 2 little grandchildren for the night........
  • kezmusc
    kezmusc Member Posts: 1,553 ✭
    Hi @Judithm,

    Choices, choices, choices.  Aagghh.  

    From my prospective I have absolutely no regrets chosing the lumpectomy and radiation. Going this way, plus the cold cap for chemo. allowed me to look pretty normal the whole way through which was helpful no matter how I was feeling on the inside.
     I believe the surgeon would have preferred I had the mastectomy but it wasn't his body and to his credit when I said no he never tried to talk me out of it.  The sleepless nights and tears ar par for the course I am afraid. 

    I went public the whole way so all my treatment cost me zero. You should be able to switch to public for the radiation without too much drama if you decide to go that way.

    Best of luck with your decision.

    xoxoxo


  • kmakm
    kmakm Member Posts: 7,974 ✭
    I had a tumour deep in my large right breast, no spread. Lumpectomy and radiation was the obvious path. But I had a bad family history, so after chemo (done after genomic testing said it was warranted), I had a double mastectomy and DIEP reconstruction. That discovered more DCIS that had been invisible on the mammograms. Then I tested positive to a gene mutation. So, the decision was made on a little information and a lot of gut intuition. Hindsight developments confirmed my decision. Sad about no breasts, but no regrets. K xox
  • Judithm
    Judithm Member Posts: 16 ✭
    edited April 2019
    @kmakm thank you for your response.  You've touched on something I've thought much about.  My tumour was very small - I'm lucky.  I have thought many times, what else is in there though not detected yet.  This same breast has had many cyst aspirations, other core biopsies, 2 benign fibroid adenomas now the high grade DCIS removed with clear margins on 11 Jan this year. I've been going to the same breast clinic in Brisbane for the past 18 years, checked every year and at one point was there every week for months with what was described then as having problematic breasts.  Radiation after lumpectomy was what was recommended and would still be the obvious choice. But.............my gut isn't settled! 
    A skin and nipple sparing mastectomy with immediate implant reconstruction is still top of the list for my path forward.  
    I'd love to hear from other women who've had this procedure.
    thank you all who've shared so much with me on my decision journey..xx

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