Advice about decision

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snoop79
snoop79 Member Posts: 9

Hi everyone. I'm 35 years old, single, and was just diagnosed with DCIS in November. It was found because a lump that my Obgyn felt with a regular check was diagnosed by the BS as a fibroidenoma tumor (with ultrasound no biopsy) as was told I could leave it in. I decided a few weeks later to have it removed and that's when the DCIS was found from biopsy upon removal. I have been told that being 35 years old puts me at higher risk and only having 1 paternal aunt with BC. I am waiting on the results of my genetic testing but I feel like even if it does come back negative I would prefer to have a bilateral mastectomy. Since I was already misdiagnosed the first time I do not want to be looking over my shoulders for the next 30 years. I have not spoken to any doctors about my decision because I feel like they would deny it along with the insurance company. The oncologist did recommend a re-excision which my original surgeon refused to do (1mm margin) because he says there is nothing there, I did go to a second surgeon who agreed with oncologist on a wider margin.

I would really appreciate any advice or opinions because even though I feel confident about having a bilateral mastectomy I'm not sure if it's realistic.

Comments

  • snoop79
    snoop79 Member Posts: 9
    edited December 2014

    Sorry, I forgot to add this, the oncologist is strongly against radiation and tamoxifen because of my age and not have had children.

  • Annette47
    Annette47 Member Posts: 957
    edited December 2014

    I understand wanting to avoid Tamoxifen if child-bearing is a possibility in the near future, but I'm not sure what radiation would have to do with it other than you might not then be able to breastfeed from that side, but plenty of babies aren't breast fed at all and do well.

    I would think that being 35 and not having had children yet would if anything increase your risks of bc (maybe not a recurrence but a new primary) so that would be a reason to be more aggressive with your treatment.

    If it were me, I'd get a second opinion from another oncologist about the risks and benefits of further treatment and/or bilateral mastectomy. You may also want to consult a radiation oncologist about the radiation/no radiation decision. Standard protocol for women under 70 is that lumpectomy is accompanied by radiation. It would be very unusual to recommend surgery with no further treatment to someone your age, so something sounds a bit off about your oncologist's thinking to me.

  • snoop79
    snoop79 Member Posts: 9
    edited December 2014

    thank you so much annette47 for your advice. I have made appointments with 2 other surgeons for second opinions but did not think of getting a second opinion for radiation oncology. The only further treatment email did recommend was a second surgery to clear the margin. My original surgeon did say I was at higher risk because I have not had children.

    Thank you again

  • ej01
    ej01 Member Posts: 155
    edited December 2014


    snoops,   I just wanted to make a few comments.   First, don't assume that BMX would be denied by insurance.   I had very small DCIS and my doctors told me that was an option for me...its not the option I went with so I don't know how insurance played out....but it is my understand that most women with DCIS have the option for a MX if they choose that route.

    I agree with getting a 2nd opinion...insurance will normally pay for it and you may get some different info.

    I was 49 when I was diagnosed (3 years ago).  I went through lots of different emotions and tried to get comfortable with lots of different paths.  At one point I "decided" getting a MX would be better than having to worry about BC for the rest of my life.   I looked into the MX surgery more, including the recovery and possible complications and decided it was not for me, at least at this point in my life.    It turns out that I don't really worry about BC much any more.  What I am trying to say is the decision making process was a very windy (and stressful) journey for me.  Research all options with an open mind (even options you think you are less likely to do), make your decision as an informed woman....and you can be confident you made the right decision

     

     

  • snoop79
    snoop79 Member Posts: 9
    edited December 2014

    Thank you ej01. When I mentioned the bilateral mastectomy to the second surgeon he thought I was crazy. He Told me absolutely not would he even consider it that's why I thought I was being unrealistic. I'm finding this waiting game and hearing 2 different opinions from 2 different doctors is worse than when I was actually told I had dcis. I'm thankful that I have somewhere to go where other women truly understand.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2014
    When I was diagnosed with ALH and ADH my BS sent me to see a genetic counselor to put a number on my risk. When my risk of BC came back at 50% the GC thought a preventive mx was a reasonable solution. My BS wasn't really on board but agreed to do it. A surprise IDC was found in the final pathology. No diagnostic tools could see anything in my extremely dense breasts. I felt like the earlier dx of the ALH and ADH was a gift. I imagine at 35 your breasts are also extremely dense. IMHO a BMX sound like a reasonable option. I had no trouble getting insurance to approve the PBM.
  • have2laugh
    have2laugh Member Posts: 132
    edited December 2014

    Snoop79- In terms of the margins- I think the difference in approach is based on newer recommendations. My second surgery still resulted in two opposite margins <1mm-that's close but technically clean. According to my RO and surgeon if edges  are clean-margins are negative, period. I was 43 when diagnosed-very strong family history. I really wanted to just do bilateral mastectomy but was strongly encourage to do breast conservation. I will say I have had complications due to large amount of breast tissue taken. Ultimately, my Dr's say it can take 1-2 years for full recovery. I am glad I have been patient as I have seen great improvement even in last 3-4 months. I think the recovery time and multiple procedures for mastectomy overwhelmed me. My little one was three then so I thought quicker recovery and close monitoring best way. I could certainly see how surgical plan and recovery with no more worries would appeal to you. Follow your heart and gather all the facts. Even though I didn't chose that option my surgeon  told me insurance will cover preventative mastectomy and reconstruction at any point due to history. If you anticipate having children, might not be bad idea to also speak with OB or fertility specialist. Gathering all the information will help you make the best decision.Wishing you well! 

  • snoop79
    snoop79 Member Posts: 9
    edited December 2014

    Grade 2. I am still waiting on the results for the brca1 and brca2. I have spoken with my obgyn and she actually agreed with me wanting bmx. I have a family friend who is a fertility doctor and she did strongly recommend freezing my eggs however that was something I wasn't ready to start thinking about at that moment but have been thinking about it more lately to prepare myself if the testing comes back positive. I just have this gut feeling that's telling me bmx is the right thing to do. The thought of surgery doesn't necessarily scare me but the thought of coming back more invasive does scare me.

  • reb61760
    reb61760 Member Posts: 1
    edited December 2014


    I just had a BMX on December 9.  I was diagnosed with DCIS in the right breast, stage 1.  I am 54 years old, no family history.  Not one of the doctors I saw was negative about any of the options--I was told by everyone that this is a very peronal choice and what is right for me is the right decision.  Insurance should pay no matter what your decision, as well as for reconstruction if you choose to go that route. If one of my doctors had said they wouldn't do one of the options I would not have had him/her do my surgery!  I chose BMX because, quite honestly, I wanted the absolute lowest chance of recurrence there was, I did not want to go through radiation, I did not want to take Tomoxifen and I did not want to take a chance on needing repeated surgeries. (of course there is no gurantee I won't need additional!)  And, I had said my whole life that if I ever found out I had breast cancer that they chould take them!  I decided to be true to what I had always said and I have no regrets.  I'm only 5 days out from my surgery so I may have some at some point but I doubt it.  I read everything I could find, talked to family and friends, weighed the options and took what many may think was over treatment.  But, there is no over treatment--be true to yourself.  Only you know what will be best for you.  Good luck to you and I hope you reach a decision that feels right for you!

  • snoop79
    snoop79 Member Posts: 9
    edited December 2014

    thank you reb61760! My obgyn did refer me to another bs because she did say the 2 that I have dealt with seem to be on an ego power trip instead of listening to what I want to do or what is best for me.

    I wish you a speedy recovery!

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    We understand that it is confusing, often overwhelming and there is so much information to read and consider but there is no easy way as YOU have to make the decision as to what is done to YOUR BODY. Only you can decide what is best for you.

    You may consider not reconstructing and going flat, so read Living Without Reconstruction After a Mastectomy

    You could read the Reconstruction stories and options on BCO and ask questions.

    There are many issues to consider and many variables in all treatments depending upon location, surgeon, your body's responses and your Dx.

    Sorry we can't help more. You are best talking with the other members.

    All the best

    The Mods

  • Tdickinson
    Tdickinson Member Posts: 35
    edited December 2014

    Go with your gut! I was diagnosed at 43 and had a BMX with reconstruction. I have had my final recon SX and am happy with my decision. It's a personal choice and if your gut is telling you something, that is what you should do. My insurance paid for all of it even though I only had it on one side.

  • have2laugh
    have2laugh Member Posts: 132
    edited December 2014


    Just want to reinforce one thing- although my surgeon encouraged me to pursue breast conservation therapy he was very clear that the final decision was mine and if I was going to go with mastectomy he would refer me to plastic surgeon he works with. I would encourage you to wait for a surgeon that provides you with all the options but respects your decision making. Not sure if you are in large or small area but there are a lot of regional breast cancer centers across the country. These facilities usually have tumor board meetings once a week where group looks over results and makes recommendations. I saw a surgeon outside of this group due to my insurance- I work for different hospital system- but I was able to have my case reviewed (within a week) based on the fact that I would be seeing someone from the radiation and medical oncology groups represented there. I also waited for BRCA testing so I had time. It also was my first meeting with RO and MO at same place and day which was nice. Might want to ask your OB if he could refer your case. I agree with others big decision and very personal, be true to yourself and you can't go wrong.  Best of luck!

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