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Jeniren's avatar
Jeniren
Member
12 years ago

Being sent to surgeons who don't do skin sparing mastectomy!

I was diagnosed with early breast cancer - DCIS (at age 38) and was advised to seek a referral from my GP to see a surgeon. My initial referral led me to a general surgeon who told me that My first option was mastectomy. He stated that he would complete a traditional mastectomy whereby the nipple was removed and I would have a scar across my left chest. He never offered skin sparing surgery, nipple sparing surgery or the option of a reconstruction at the same time as mastectomy. My other option was to have the DCIS removed and be left with very little breast tissue and then radiation therapy. When I left his office I was devastated. I have two small children who depend on me and I was willing to do whatever it took to treat what I had. Two days passed and I got another referral for another surgeon as I was given 3 weeks to make up my mind. This time my GP sent me to a oncologist breast and endocrine surgeon. She stated that she would recommend a mastectomy only as most of my breast tissue would be removed as I had 3 areas of DCIS. She showed me pictures of a skin sparing mastectomy and also stated that I was a candidate for nipple sparing surgery. I was told that reconstruction was a definite possibility at time of mastectomy and arranged an appointment for me to consult the plastic surgeon who would assist if I went ahead. I was also explained the risks associated with keeping the other breast. I sit here 4 weeks later after having a double mastectomy skin and nipple sparing surgery wondering if there are many women who are not being educated about their options. I was so desperate for a resolution at the time of diagnosis that i could have easily not gone for a second opinion. Not once did a breast care nurse or diagnosing doctor mention these types of surgeries to me. I received my breast cancer information pack and none of these surgeries are in any of of it. I've since discovered that there is only approximately 6 surgeons in Brisbane who are offering this type of mastectomy. There is little assistance on the net when trying to find these surgeons and I don't understand why. I know that this type of surgery is not advisable for all diagnosis. However, As women facing something so serious do we not deserve to make an informed decision regardless of our diagnosis?
dcis

6 Replies

  • Karen_P's avatar
    Karen_P
    Member
    11 years ago

    Having recently been diagnosed with extensive DCIS and after 2 lumpectomies, both with unclear margins, I have been advised that I will need a mastectomy.  I have various decisions to make, but wasn't given any advice about the type of matectomy only about the possible options for reconstruction.  Having done a little research I feel I would prefer the skin sparing option, but wonder how do you find out whether your surgeon offers that procedure (as stated above, if there is only 6)?  And is it the breast surgeon or the plastic surgeon who does the skin sparing work?  I have an appointment to see my plastic surgeon, but not until end of January, followed a week later with another appointment with my breast surgeon.  Any answers gratefully received. thanks Karen

  • mona63's avatar
    mona63
    Member
    12 years ago

    hope all is going well; your post does raise important issues; in fact from reading this website you do get a vast array of opinions and experiences.  I found myself on american website and their research showed that highest level of mascetomies and double mascetomies are done by male midwest oncologists who trained over 20 years ago; of course there were exceptions to the rule but found myself wondering if there would be differences in australa about surgical procedures and treatments given to women with same sort of types of breast cancer

    My expereince has been that ive only had one p/c contact with breast care nurse and only one appt so far with oncologist and radiation treatment so pretty low key so far; but so glad i went to specialised breast surgeon!

  • Jeniren's avatar
    Jeniren
    Member
    12 years ago
    Thank you for your messages. I am doing really well so far. The surgery went well and as far as I can tell the reconstruction is going to plan. I am keeping busy with my one year old and my three year old and have been lucky to get good support from family and friends. Emotionally I am coping well and putting all my focus on staying positive, eating well, light exercising and looking after my kids. Although, i cant get this out of my head. it really worries me that other women might be getting diagnosed today with early breast cancer and as we have experienced - are seeing surgeons who are not trained in the most modern of techniques. The type of surgery i had has really helped with my emotional well being. I really feel for anyone who is not getting all the facts. This shouldn't be happening. I feel I am quite angry about the system and need to find a way to get this information out there. Thanks for your info on the reconstruction blog. I'm on a mission. Xxx
  • LouiseTurner's avatar
    LouiseTurner
    Member
    12 years ago

    Hi Jeniren, I totally hear you and had similiar thoughts during the 6 months of planning my own reconstruction. There does not seem to be a coordinated approach for breast reconstruction in Australia, like there is in the UK and the US and if there is it is certainly hard to find because I have been looking!

    I cant figure this out but I think that perhaps when we battle through and finally get to the end we just want to move on, so perhaps there is not clear demand. I saw 4 plastic surgeons trying to negoriate my way through the various procedures and who offered what and where and how the system worked. I am in the regional location and it wasnt till my after i had seen 2 local plastic surgeons that I found that i needed to go to a metro location to pursue the surgery i wanted. If I had have been better informed, I would have known better questions to ask and perhaps would not have had to see so many which also is very costly.

    I think perhaps some women do go with their first option for many different reasons; trust, guilt, exhaustion, simplicity, fear. If I did that I would not have had the procedure I did.

    I also would like to see a central portal of sorts to assist women to negotiate their procedures and have all the information to be able to make informed decisions. Research says that women are more happy with their results, whether they reconstruct or not, if they are better informed during the planning stage.

    I think you raise an important issue

    I dont know if you are aware, but there is a 'breast reconstruction' online group here on BCNA where women are sharing their experiences of breast reconstruction. Its a small step towards filling the gap of information on this topic. http://www.bcna.org.au/group/61026

    XXX Louie

     

  • LouiseTurner's avatar
    LouiseTurner
    Member
    12 years ago

    Hi Jeniren, I totally hear you and had similiar thoughts during the 6 months of planning my own reconstruction. There does not seem to be a coordinated approach for breast reconstruction in Australia, like there is in the UK and the US and if there is it is certainly hard to find because I have been looking!

    I cant figure this out but I think that perhaps when we battle through and finally get to the end we just want to move on, so perhaps there is not clear demand. I saw 4 plastic surgeons trying to negoriate my way through the various procedures and who offered what and where and how the system worked. I am in the regional location and it wasnt till my after i had seen 2 local plastic surgeons that I found that i needed to go to a metro location to pursue the surgery i wanted. If I had have been better informed, I would have known better questions to ask and perhaps would not have had to see so many which also is very costly.

    I think perhaps some women do go with their first option for many different reasons; trust, guilt, exhaustion, simplicity, fear. If I did that I would not have had the procedure I did.

    I also would like to see a central portal of sorts to assist women to negotiate their procedures and have all the information to be able to make informed decisions. Research says that women are more happy with their results, whether they reconstruct or not, if they are better informed during the planning stage.

    I think you raise an important issue

    I dont know if you are aware, but there is a 'breast reconstruction' online group here on BCNA where women are sharing their experiences of breast reconstruction. Its a small step towards filling the gap of information on this topic. http://www.bcna.org.au/group/61026

    XXX Louie

     

  • Mich_x's avatar
    Mich_x
    Member
    12 years ago

    Hey Jen

    General surgeons are just that general surgeons so do not specialise in anything.  I would definitely not recommend anyone who has been diagnosed with BC to see a general surgeon.

    I personally know of a lovely 80 year old who had her surgery with a breast surgeon.  As you say she was not educated.  She is my neighbour and the only other option open to her was to travel 400klms.  Anyway as she states she was butchered.  She had a double mastectomy with no reconstruction (thank god for her sake).  She says she plays better golf and swims better without boobs bless her.  She now has to regularly travel the 400klms to have her surgery repaired.

    My experience with a general surgeon is another whole story and leaves a lot to be desired.  I am so glad he was rude, humiliating and disgusting to both me and my sister on the day as if he had have been nice and me not being educated of anything different I too would have probably gone through with surgery with him.

    It is so true that we need to be educated from the very very beginning so this starts with our GP unfortunately and again they are just general practioners who do not specialise in any one thing so how can they advice us.

    I am so glad you kept your options open and you were proactive in your treatment option and that you have gone down the right path.

    I hope you are healing well and doing okay for you and your lil ones.

    Lots of love,Mich xoxoxo