Forum Discussion

michelle2427's avatar
michelle2427
Member
10 years ago

What to do

Hello all

I haven't been on for a while, so hope all going ok for everyone

I'm now at the stage where I have to choose mastectomy or lumpectomy. My Dr is saying my best option is mastectomy and I would have been ok with this if all options where explained to me many months ago.

I have a HER2 positive aggressive cancer at 8 o'clock and a smaller cancer at 12 o'clock. My last MRI has shown the larger cancer is not present, but if I choose a lumpectomy I will have to have this area removed. The other cancer has shrunk from 1cm to 5mm.

So here is my dilemma. Im in the public system and was told many months ago, if I choose mastectomy I would have an expander put in and then 6 months later have a prosthesis put in, well this did not sit right with me. I was also told flap reconstructions wasn't done at the hospital I go to. I was 4 days out of chemo at this appointment and thought because I was in the public system I could not even consider a flap reconstruction.

So I went home and decided to do some research and found I could have this option. I am a little disappointed that when we see a specialist like the breast Dr, it is hard to make another appointment. I was deterred from making another to discuss other options, many missed phone calls followed and communication brake downs with the receptionist. At my last appointment I was told it is too late to look into a flap reconstruction.

Having breast cancer and getting my head around what was happening, I originally went into this deciding to go with what Im told because the Dr's know best, however some things didn't add up, the more I got use to chemo and all the processes I had to go through, the more I started questioning the system.

I have only recently had a long talk with my breast nurse about not being given all options, my dilemma being i don't want the reconstruction I was offered, and I would have more than likely chosen flap over prosthesis, and now lumpectomy over prosthesis.

I am now being told by my breast Dr that if I have mastectomy and expander put in, I can have flap reconstruction down the track. Is this true, does anyone know? Has anyone had this done? I was told earlier on that once I choose an expander I could not have flap reconstruction. Perhaps the people who run this site can let me know this one. I have till the end of the week to find out. I will see if I can talk to someone in the public system about this before the end of the week, so I can make a more informed choice.

i don't think it should matter if your in the public or private system, having a breast removed and or reconstruction is a huge deal, and a rest of your life decision to make. Laying all options on the table would have been great earlier in the piece, so I had time to decide.

I had 8 months chemo before getting to this stage, I couldn't imagine having to make this decision first up, like others have, and chemo after.

I have had the best oncologists, nurses and doctors, however along the way I found those few things that could have been improved.

 I have sought a lot of alternate therapies along the way, healthy eating mainly and found doing both chemo and natural has help me immensely. Having a public system that offers body, mind, spirit and natural eating tips etc, as well as being able to talk to someone and delving a little deeper without the same standard answers (I found someone in the end) may have made my huge decision a little easier. 

What to do, What to do???

her2

18 Replies

  • Brenda5's avatar
    Brenda5
    Member
    10 years ago

    I had single mastectomy straight off. No amount of doctor asking me to reconsider would change my mind. As it turned out both sides of the breast had trouble. One side the cancer, the other side a fatty lump growing so it wasn't a great thing to retain. I had very small breasts so a 2.5cm x 5cm lump in one was a huge thing for me. I also had lymph node positive and ended up with a second op to remove all nodes. Chemo thereafter. I am 54yrs old.

  • Ann-Marie's avatar
    Ann-Marie
    Member
    10 years ago

    Hi Michelle,

    We have a "Breast Reconstruction" group, that may be able to provide you with some more answers as well. Click here to go to the group page to join, if you are interested.

  • michelle2427's avatar
    michelle2427
    Member
    10 years ago

    Thank you, very much appreciated.

    You sound very positive about your whole experience, it has helped very much. 

  • primek's avatar
    primek
    Member
    10 years ago

    Also diep is Muscle and fat.. ..so you will have muscle loss from your tummy area....which may or may not cause issues.

  • primek's avatar
    primek
    Member
    10 years ago

    I chose public as I wanted to be under that team and I was very happy with my breast surgeon who also works privately. I am aware that privately the surgery may have cost $8-10,000 above insurance. I could have had a public plastic surgeon but my breast surgeon did explain that it might delay treatment also to find one with the right experience.

    Because I chose bilateral mastectony...it opened options a bit really. I am very comfortable with how my breasts look. My breast surgeon cut my skin as though I just had a reduction. Eventually once new nipples created people really won't know I think by looking. ..unless really closely. I couldn't keep the nipple on my breast cancer side and opted not to bother trying to save one. It was difficult detecting my cancer due to dense breasts...which is why I chose bilateral. I would have required extensive surgery on my remaining breast to match up so couldn't  really see the advantage of keeping it. Hope this helps. Can postca pic of my so far foobs if you wish.

  • michelle2427's avatar
    michelle2427
    Member
    10 years ago

    Thank you Rowdy

    I looked up Lumpectomy last night after reading your post. Thats probably the last thing I want, to go back a second time. getting a good margin has been on my mind, this is the only thing deterring this op.

    Thanks for telling me your story, it has cleared my head a little more.

    Many thanks

    xx

  • michelle2427's avatar
    michelle2427
    Member
    10 years ago

    Thanks Primek for the information

    This is what I was wanting to know.

    In my first appointment with breast Dr, I was told I had to have mastectomy, I did query flap reconstructions and she told me she used expander and prosthesis, Once I had expander I could not have flap Reconstruction done. It was at the beginning and I was still getting my head around having cancer.

    As mentioned above after my second visit I went home and researched. Now after talking to breast nurse, the breast Dr is telling me I can have flap reco done after expander put in. This was only a phone conversation and I had so many questions when off the phone.

    I was looking up DIEP, is this where the fat is used only? it looks pretty natural. Are you public or private? I'm wondering if there are limits on what I can have done in public.

    I'm not even sure who to talk to with this information, I would have loved to see about all I could have done earlier, without feeling rushed to get this information. I would have thought the Dr's who do this sorts of reco would discuss what can and can't be done, making my decision easier, earlier in the piece.

    Many thanks this info has helped immensely

    xx

  • michelle2427's avatar
    michelle2427
    Member
    10 years ago

    Thank you for letting me know your ok with what you had done. Ive heard good and bad from a few different people, but in the end it is where your heads at. If your positive and ok with the procedure, then all will be ok. 

    I was diagnosed with type 1 diabetes when 9 also, my birthday is next month, making it 40 yrs with diabetes. I found it's mainly about what works for me over the years, each person is unique and it takes time to figure out what works and what doesn't.  The hardest times are when your young and at drinking/ party stage, health is not your biggest issue in life, or I suppose when your sporty and want to keep up with what everyone can do, learning to fuel your body with the right foods, so you can keep up. 

    All the best for you sister in law and especially your nephew, its a long road ahead and can be made easier with a positive attitude and knowing yourself.

    XX