Urgent-need advice re: radiation vs mastectomy

Chelle_1968
Chelle_1968 Member Posts: 8
edited June 2014 in Triple-Negative Breast Cancer

HI all, I'm 41 and was diagnosed with invasive ductal carcinoma on 7/1/09, had lumpectomy with sentinel node biopsy on 7/28/09, was diagnosed with BRCA1 on 8/31/09. I have completed 4 rounds of chemo (Abraxane and Carboplatin -was allergic to Taxotere) and am getting ready to start 33 radiation treatments. I went in to see my surgeon this past week and she is now recommending a double mastectomy with reconstruction, instead of the radiation treatments.

I am very scared of making the wrong decision. I have had several family friends have double mastectomies, and their cancer returned to their bone and killed them. Since I have the breast cancer gene, I feel the Drs will be keeping a closer eye on me, so if my breast cancer returns, they should be able to catch it prior to spreading to my lymph nodes. Isn't it easier to deal with breast cancer vs bone cancer? I really need some advice from any of you who have had the breast cancer gene--did a mastectomy help you? Or did the cancer return to your bone?  Some of my Drs are telling me the cancer can come back to my bone, WITH OR WITHOUT the breasts being removed so they don't actually know what to recommend. My surgeon thinks I am thinking about everything wrong and that I need them removed, to protect me from it returning. I am definitely going to push for a PET scan to make sure the  cancer isn't anywhere else and I definitely want a second opinion.  But if any of you have any suggestions or advice or experience with this..please help :)  Thanks for reading! 

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  • lexislove
    lexislove Member Posts: 2,645
    edited November 2009

    Hi there!

    Im not TN or BRCA+, but....being BRCA1 you have more of a chance of developing BC than if you were BRCA2. BRCA2 seems to lean more towards the ovaries. I have read, although cant remember, that being BRCA1 you have close to an 80% chance of developing BC in your lifetime. I hope someone can correct me if Im wrong.

    It is true, that you will be watched closely. But.....being TN (triple negative), your only weapons to fight against this disease is chemo,rads and surgery. Thats it. If you were ER+, you would be able to take an anti hormone that helps prevent a recurrence of BC & prevents a new primary from developing. There has also been a study out in regards to being TN on initial diagnosis doubles your chances of developing a "new" BC in the other breast. I will try to find it.

    But it come down to you. Its a very personal decision. Does being BRCA + gurantee you BC? No.....but your chances are higher than the avearge woman who has a history of BC.

    Good luck with your decision.

    Edit..here are the findings with TN breast cancer and desveloping a "new" BC...

    http://www.breastcancer.org/symptoms/new_research/20090710.jsp

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  • thenewme
    thenewme Member Posts: 1,611
    edited November 2009

    Hi Chelle,

    It sounds like you're thinking that keeping your breast may prevent your cancer from recurring somewhere else?

    It can recur in the breast (even with mastectomy, although significantly reduced risk) or recur distantly whether or not you have lumpectomy or mastectomy.  Especialy with triple negative, I would strongly recommend you consider doing everything you can now, rather than waiting and assuming that the docs will be able to catch a recurrence early.  Studies have shown that early detection of recurrence does not significantly alter the outcome or prognosis like it does for the first occurrence.

    Have you seen a genetic counselor to discuss your risks?  If not, you really should see one and get expert advice for your specific situation. Please don't take this lightly, as you have both TN and a genetic mutation, both known to significantly increase your risk of recurrence!  

    If you care to share, what are your reasons for hesitating with the mastectomy? If you share more specifics, I'll bet there's someone around here with similar experience and advice.

    Here's an article from BCO that may be helpful:

    http://www.breastcancer.org/symptoms/types/ask_expert/2008_07/question_20.jsp 

    Best of luck in this very difficult time of decisions!

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  • Fire44fly
    Fire44fly Member Posts: 51
    edited November 2009

    Hi... I am TN.  I was diagnosed at 38 in Jan 08.  I started with a Lumpectomy and Auxillary Node dissection, then followed with a Mastectomy because of the margins.  I completed chemo and then it was recommended by my oncologist to have Radiation.  In March I had the other breast removed... Stats are not so great for TN and I chose to be a little more aggressive with my treatment.  I also have followed the recommendations of a Naturopathic MD in terms of food and diet.  I can't tell you what you should do but I wanted to share with you what made sense to me.  Take care and follow your gut!. 

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  • cheranthia
    cheranthia Member Posts: 65
    edited November 2009

    Hi Chelle,

    You asked whether breast cancer or bone cancer is easier to deal with. If breast cancer would just stay in the breast, it would never kill us. If it spreads to the bones, it is metastatic breast cancer, not bone cancer. At that point, it may be possible to manage it as a chronic disease, but it is no longer considered curable. So dealing with cancer or even a potential cancer while it is in your breast is by far the best option. 

    As thenewme mentioned above, keeping your breast will not prevent your cancer from spreading somewhere else. On the contrary, if you keep a breast that has cancer cells in it, they have the possibility of spreading. The key to defeating breast cancer is keeping it from EVER leaving the breast. Yes, some women still have metastases after having a mastectomy, but that is because cancer cells had either remained after surgery or had already spread beforehand. 

    Best to you in your decision. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    Chelle - I was diagnosed at 44 - no family history.  My surgical team had me take the genetic test and told me that if it were positive, they recommend mastectomy due to increased risk.  My test was negative, which I anticipated as I have no family history.

    I don't know if this helps or not but I think brac+ = mastectomy to most cancer specialists.  Good luck with your decision.

     

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  • violet7
    violet7 Member Posts: 180
    edited November 2009

    Hi Chelle,  I agree with the general tone of the preceeding posts.  I opted for a double masectomy immediately upon hearing I had an aggressive breast cancer - I didn't even know what Triple Neg was.  I know that there is a chance it'll still come back or spread some other way anyway, but I feel like I slanted the odds in my favor if ever so slightly.  I had a 1/2 cm tumor in my sentinel lymph node, but no apparent blood vessel involvement, my PET Scan showed no mets.  Anything left in my body is microscopic and I hope will be creamed with the chemo I'm starting next week.  The onc said we will see about radiation.  I didn't get reconstructed yet.  I didn't want to wait for a plastic surgeon to be on the general surgeons schedule because in the meantime it could spread.  I'd have died from anxiety in the meantime.  If I were you I'd do every little thing possible, but I know this is an emotionally charged issue.  Best of luck with whatever your choice is.

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  • Issymom
    Issymom Member Posts: 264
    edited November 2009

    Chelle,

    My diagnosis is almost identical to yours.  I was scheduled for a lumpectomy, chemo, then rads, however, I then found out that I was BRCA1+.  It was a very difficult decision (and a personal one) but I am scheduled for a bilateral Mastectomy this Friday (the 4th).  I just decided that I couldn't be at peace (not worry) if I kept my breast.  I feel confident that I can beat "this cancer" but don't want to take the chance of a "new cancer" developing in one of my breasts.  I am meeting with a Genetic counselor tomorrow to discuss what the gene mutation means for other cancer risks for myself, my sister, kids, etc...  I will have my ovaries removed as soon as I can as well.

    I don't want to do this but given the facts I don't feel I have a choice.  Good luck to you.

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  • cmb35
    cmb35 Member Posts: 1,106
    edited November 2009

    Hi - Didn't read other responses yet as I am about to run out the door, so forgive me if I'm redundant. In a nutshell, the mast will only reduce your chances of a local recurrence (i.e., in breast) or a new primary (i.e., a brand new breast cancer in the other breast.) Whether or not you get mets from your initial dx (bone, lung, liver, etc.) will not be impacted by the mast.

    What I can tell you - I was 41 when dx, and had a lump w/rads (plus chemo) without ever really being informed that mast was an option. I'm now looking at a preventative bilat mast, and the prior rads is a bit of an issue as far as my reconstruction options go. So, I would defnitely ask your docs how the different possible courses of treatment will impact your available surgery/treatment options should you develop a local recurrence or new primary breast cancer. If I had know to ask those questions, I probably would have opted for a different course of treatment given my young age and high probability for a new primary cancer.

    Best of luck to you, it's an incredibly tough decision, get as informed as you can, and then make sure YOU are OK with what you decide.

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  • Chelle_1968
    Chelle_1968 Member Posts: 8
    edited December 2009

    Thank you all for your advice and kind words! This just came out of nowhere when I went in for a followup. My Surgeon basically told me, she would NEVER had done a lumpectomy if she knew I carried the BRCA1 gene and has changed the way she runs her practice.

     Due to the BRCA1 and the Triple Negative, it sounds like I am going to have a rough battle ahead of me. I don't mind removing my breasts--with reconstruction or not----I am just trying to prevent the cancer from  metastacizing to my bones/organs. At the time of my lumpectomy, I had clear margins and it wasn't in my lymph nodes so I was really feeling positive--that was before we found out I carry the BRCA1 gene.

     I just feel that if I carry the breast cancer gene, that I should keep my breasts and have recurrence of breast cancer and I could fight breast cancer alot easier than if the breast tissue is gone, and the breast cancer attaches to my bone, organs, etc. Am I thinking about this all wrong? My Dr says I am ..so I must be. But I know of 4 people who had mastectomies, and the cancer spread to their bones and killed them. I guess this is what is preventiving me from making a decision now. If I make the wrong choice, I could contribute to my death...how do you know what to do? I must be thinking about this too much......so confused! 

    Thank you all for you any advise you can give...I greatly appreciate it!!!

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  • Nico1012
    Nico1012 Member Posts: 1,492
    edited December 2009

    cmb35 ~ very well said! Chelle ~ It bears repeating "..... get as informed as you can, then make sure YOU are OK with what you decide."

    Wishing you the best Chelle!

    Nico

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  • chumfry
    chumfry Member Posts: 642
    edited December 2009

    Yes, you're thinking of it wrong. Keeping your breast will NOT prevent mets. In fact, it may increase your risk of mets because if your have a recurrance in the breast, that gives the cancer cells another chance to escape and travel elsewhere to cause mets.

    The people you know who got mets after mastectomy did not get mets because they had a mastectomy. They got mets because the cancer cells had already traveled before their mastectomies occurred.

    Not that it's a guarantee, but the less breast tissue you have...the less likely you are to have cancer in your breast. Even with mastectomy, there's a tiny bit of tissue left. And it can recur in your chest wall, but the odds are much MUCH lower after double mast.

    Your doctor's advice is spot on.

    --CindyMN

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  • shiny
    shiny Member Posts: 892
    edited December 2009

    I echo chumfry. I am a tri neg, just short of 39 on dx. I had a double mast with imediate recon, which was definitely the correct choice for me. Please go an talk to an expert nurse who can go over the facts about BC and explain to you how it spreads etc, it looks like you have not been explained how it works, and as it must have been plain to your oncologist or surgeon from what you say, that you are misunderstanding how BC spreads etc, I feel that you have been let down at a time when you need the best information.

    Please go talk to a qualified nurse or doctor on your cancer team and don't leave until you have understood all about cancer spread. Even if there are no visible cancer in nodes does not mean that some cells have not travelled through lymph fluid and or blood , if the cancer was invasive. Those cells are not visible on scans, but if the decide to grow and "get busy" later elsewhere, where they may have travelled in the body, then that is a distant recurence.

    I do not want to scare you. I am just very concern that you get to understand how cancer spreads, so you can base your important personal decision on good factual information spicific to you case. Go  back to someone sympathetic in your team and get them to take the time to make you understand. You deserve to make your decision based on good understanding.

    Do take care, wishing you all the best.

    Shiny

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  • thenewme
    thenewme Member Posts: 1,611
    edited December 2009

    Hi Chelle,

    I'm worried about you.  Have you seen a genetic counselor? It sounds as if it's the surgeon recommending the double mastectomy; what does your oncologist say?  I urge you to please speak with your treatment team and get some clarification, or get a second opinion if your docs aren't willing/able to help you understand all your risks, benefits, and options.  And please don't wait to do it. 

    Have you had pet scans or other tests since starting treatment?

    Are you thinking that mastectomy caused metastasis in the people you know? If so, please mention that to your doctors.  They need to understand your specific concerns so they can address them in relation to your individual circumstances. 

    Triple negative BC is so aggressive, disorderly, and unpredictable that stray cells aren't going to "seek out" a breast to attack and leave everything else alone.  They'll go wherever they "want" to.  TN doesn't follow a map and doesn't follow the rules.  As your doctor says, double mastectomy is likely your best shot at this.  Recurrence monitoring isn't nearly as effective, sensitive, or helpful as I think you believe it to be. 

    I hope you take our suggestions in the spirit they're intended.  We're concerned about you!  Please get in to talk with your docs asap and get some clarification.  Best to you and please let us know how you're doing.

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  • Chelle_1968
    Chelle_1968 Member Posts: 8
    edited December 2009

    Thank you all so much for your advice. I have a Dr Appt tomorrow with my oncologist and another one on 12/7/09 with my oncologist and radiation oncologist. My surgeon told me I was not understanding how cancer spreads and wants them to explain it to me better.  I've learned alot from all of you and will have more info to take with me to my upcoming appts. I think I am leaning more towards the double mastectomy now...but definitely want a PET scan first! Thanks again..it means so much to me! When something like this happens, you have to speak with others who have went thru it!! It really helps! HUGS to you all :) 

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  • shiny
    shiny Member Posts: 892
    edited December 2009

    Hi Chelle,

    You will get through this. I am glad you will be getting that appointment Wednesday. Ask those questions and don't leave until you understand your situation, how cancer can spread, what any scan can AND can't show you or garanty. Make sure you get all that, then make your best decision with your team. You are in charge.

    I have a BRAC gene that is "odd", that is there is a difference on one part that has been logged and seen in 6 families on the international gene register, but not the known mutation we know increases bc at the moment. For me, the chances, with high family incidence, and Tri neg was too high. I had a recon on both breast imediately, by excellent reconstruction/plastic surgeons. I then had nipple crafted which was easy, in out surgery, then later tatooes to colour in. I do not want to influence you, just to reasure you that whatever you decide, it is amazing what good quality surgeons can do nowadays. I love my "new boobs" and they were made all from my own tissue and fat.

    You are in the most unsettling phase. It will get better, just hang in there ask questions and pace yourself. Ask for help when you need it. When you understand and know your programme of treatment and start, you will feel better as you will be in "action mode" getting things done to get better.

    You take care of you and come back to the boards to get support and share with the gang, there are some amazing people on here.

    Be good to you.

    Shiny

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  • thenewme
    thenewme Member Posts: 1,611
    edited December 2009

    Oh Chelle, I'm so glad you'll be seeing the doc today!   I definitely agree with Shiny, that the period of not having the plan in place is a horribly stressful time!   We'll be thinking about you today. It sounds like your docs are on the ball, so you're in good hands!  Once you get more information, you'll feel more confident with your decision. 

    If you do decide on mx, be sure to consult with a breast plastic surgeon ahead of time so that you can decide on the best type of surgery for you.  There are several different options.  I had double mx with immediate allograft and tissue expanders placed last December 30, and the scars have healed up better than I imagined after seeing them initially.  I look pretty much "normal" in clothes, and don't really have any problems with them other than that they're so solid and hard, but I definitely don't regret my decision.   I'll have my expanders in until July, but they're not so bad, all things considered.  So much of it depends on individual circumstances, though, so your doctors will be able to tell you what to expect for your situation.

    Take care, and let us know how you're doing when you have a chance!  If you have any specific questions, don't hesitate to ask - I bet there will be someone with the same or similar experience here!

    Thinking of you today...

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Hi Chelle,

    Go with the doctor's advice. He is right.

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  • PauldingMom
    PauldingMom Member Posts: 927
    edited December 2009

    Chelle 1968-My doctor's office too did not do the Braca test till AFTER surgery. I am thankful that I do not carry the mutant gene but now I am wondering why they don't go ahead a run the test before hand. I went with the Lumpectomy but afterwards with a triple neg. status I wonder if I did the right thing. My surgeon really pushed for the lumpectomy vs. the MX, but at the time the tumor was thought to be less than 1cm.

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  • 123Donna
    123Donna Member Posts: 49
    edited December 2009

    Hi Chelle,

    I'd go with what your doctor is recommending, but have them explain the reasons.  I had a bilateral mastectomy and thought the recovery went pretty smoothly.  I just had the reconstruction a month ago and happy with the results.  If you're concerned about bone mets, ask your onc about a clinical trial for bisphosonates, like SO307, Phase III Trial of Bisphosophonates as Adjuvant Therapy for Primary Breast Cancer.  

    Good luck with your decision.

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  • starwatcher
    starwatcher Member Posts: 26
    edited December 2009

    HI.  You have gotten some really good advice with all of the posts, but you have to do what is best for you.  TN is an aggressive "bugger" and you have to be aggressive back.  I am a nurse practitioner, but when I heard the diagnosis of breast cancer, everything I ever knew went out the window and I was totally confused.  I had chemo, double mastectomy (cancer only in one, but decided to get rid of both), then radiation.  I was offered lumpectomy with chemo, radiation, but made up my own mind for bilaterial.  I am one year post chemo/surgery and always wonder about tomorrow, next year, etc.  Should the cancer recur, then I have given it one less place to recur. 

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