Need to make a decision...would like help from all of you...

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peace777
peace777 Member Posts: 71
edited June 2014 in Stage I Breast Cancer

I am recently diagnosed  IDC grade 3  est/pro +  I dont know once (when do you find that out) Im trying to decide lumpectomy or mx (both).  There really isnt any real guarantee anything we do, it wont come back right? Its recommended by my breast cancer team that i have lumpectomy 6weeks of radiation and hormone therapy.  anyone close to the same situation??  Suggestions please..  and i wont know stage or if its in the lymphnodes until surgery..  so really how do you make the decision???  help

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  • Golden01
    Golden01 Member Posts: 916
    edited June 2013

    I think the surgery choices were the hardest ones I had to make when I was diagnosed with BC nearly two years ago. Know that as hard as it is, you'll make the right decision for you and your situation. 

    I had a lumpectomy and then had to proceed to MX due to bad margins. My BS was clear that there was no medical indication for me to have a BMX but it needed to be a personal decision. I had a BMX on 9/8/11. The decisions about surgery were very-very hard for me to make. 

    It was hard to know what to do but a friend, who has been through this breast cancer journey, suggested I get all my mammogram records as that had helped  her in making her decision. I did that and realized that over the past 20 years, I've  had a number of problems on both breasts (bleeding, cysts, etc.), each time the problems were found to be benign and I never thought about the problems again.

    What helped me the most on the decision to have a BMX was a fact sheet from the National Cancer Institute (NCI). Here's the link:www.cancer.gov/cancertopics/fa.... NCI listed six reasons a woman might consider a BMX. I had three of the six! I circled them as my husband and I went over the fact sheet together. It was an easy decision after seeing those circles so clearly on the NCI list.

    We also saw an ACS Cancer Navigator that helped us talk through the options and helped us know we had left no stone unturned in making our decision.

    Turns out, they found "flat atypia" in my other breast and both the PS and MO have indicated they felt that I would have been back for treatment for cancer in that breast at some point. Even if they had not found anything, I know I made the right decision for me.

    Good wishes to you as you work through these difficult decisions.

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  • Annette47
    Annette47 Member Posts: 957
    edited June 2013

    One thing to consider is that if you've had a lumpectomy, you can always go back afterwards and have a mastectomy if the cancer turns out to be more extensive than originally thought, but once you've had the mastectomy, lumpectomy is no longer an option.    Once the pathology is back from the lumpectomy, you would probably have a better idea whether going back for a mastectomy would help prevent the need for radiation, etc.  (Although I had a lumpectomy followed by radiation and now hormonals and found it quite tolerable).

    Good luck with whatever you decide - you are in what many people find to be the hardest phase of all this ... it gets better once you've decided on a plan of action.

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  • mdg
    mdg Member Posts: 3,571
    edited June 2013

    For me the decision was easy because my mammogram missed the lump a few months before I found it. Knowing that made it easy for me to go with a BMX. My son was also only four when I was dx so I wanted to treat things aggressively.

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  • Dani18
    Dani18 Member Posts: 18
    edited June 2013

    I was in the same position as you.  Trying to decide between lumpectomy and mastectomy (just one as I live in Canada and my breast surgeon advised me he would never agree to do a mastectomy on a healthy breast).  I also only know that I have IDC estimated at 2.2 cm and it is grade 2 and won't know anything else until after surgery.  I spoke with my family doctor and told her I didn't feel I had enough information to make the decision for a mastectomy and that I thought I would go with a lumpectomy and then decide after the pathology.  She totally agreed with my decision and told me she has another patient who is 3 years out from her treatment and is still having issues with the mastectomy.  Two failed reconstructions and currently still dealing with infection from third reconstruction and that emotionally the mastectomy took a bigger toll on her then the cancer treatment.  When I advised my BS he felt it was the right decision and that as I will almost certainly be having chemotherapy (due to size of tumour and my age - 42) I had lots of time to decide if I wanted to have the mastectomy before radiation.  He said he feels that the Angelina Jolie story makes it seem like mastectomy and reconstruction is a walk in the park when in fact for a lot of people it really isn't.   Although I may ultimately have the mastectomy after pathology and speaking with the oncologist, I feel that I will have made the decision with all the information instead of the little bit I have now.  My lumpectomy and SNB is scheduled for Thursday and at this point I'm just anxious to finally have something being done to get rid of the cancer.

    It's a tough decision but I think you have to do what feels best for you.  Good luck!

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  • rozem
    rozem Member Posts: 1,375
    edited June 2013

    i agree with dani18 above - mastectomy is no walk in the park, I was commited to doing it because screening didnt work for me (very dense breasts) but my mastectomies/reconstructive surgeries have certainly been more difficult then my chemo/rads etc.  Thats just me, some women have positive experiences (as positive as they can be under the circumstances).   Take your time and make the right decision for you

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  • mumofone
    mumofone Member Posts: 36
    edited June 2013

    I'm another who decided to be conservative with the surgery at first (lumpectomy) but had unclear margins and subsequently needed a mastectomy. My lump was originally estimated at 1.5cm by mammogram/US, but turned out to be larger. 

    My surgeon told me that, while there are no guarantees, there is no difference in recurrence between a successful lumpectomy (plus rads) and mastectomy. He also discouraged me from removing my healthy breast which was my first thought. I'm fairly small chested which helps, I think.

    Personally, I found the mastectomy healed better than the lumpectomy, but I didn't have reconstruction (and have no intention of doing that). I'm very comfortable with the route I took. Taking it stepwise was best for me.

    Good luck - and as the previous poster says, take your time :)

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  • peace777
    peace777 Member Posts: 71
    edited June 2013

    Thank you Golden01, Annette47, mdg, Dani18, Rozem, and mumofone for sharing your stories with me (and others :)  )    I know you know what I mean when I say it has been a whirlwind of a couple of weeks.  I have decided to go with lumpectomy, radiation for 6 weeks then hormone therapy. See what happens when i get more results from the tumor after surgery.  When I found out I could have a mastectomy later, if I decide to, that helped me make a decision. You are so right annette47 its better to start out with lumpectomy, once the real ones are gone no taking it back.  Golden01 thank you for the site I plan to check it out. MDG, totally understand my kids are all grown. I do have grandkids and Id like tobe around for my kids and my grandkids.  Dani18 sounds like we think alike too, I think that is a good decision. I feel releaved since I decided what to do. Good luck with your surgery be sure to let us know how it goes and after mine  monday Ill post something also. Rozem I did hear mastectomy is major surgery and painful, we have to do what we have to do and we make it through it right :) Im sure we become stronger women. Mumofone I guess I wont know for sure until after surgery some things that could change it to a mastectomy, but I'm having faith for a good outcome. My mind is over loaded! as you all know the feeling.  I found out today i am her2/neg.  I have surgery next monday the 17th. just want to get it done and get on with things.  Alot of me still cant believe i actually have cancer.  I think ive been so busy with test and appoitments, research and reading I havent had time to absorb everything.  So while I wait for surgery I will let it catch up to me.  Thank you all for everything.  I look forward to talking with you all again.  carol

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2013

    Just wanted to mention: My surgeon told me that a mastectomy isn't considered to be a painful surgery. And it wasn't for me --I think they gave me a couple of injections after the surgery/reconstruction, but after that I didn't need any pain killers at all!  I was very relieved as I am allergic to most of them. 

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  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2013

    And after my lumpectomy (2 years ago) I didn't need any pain killers either. Just wanted you to know so you don't worry too much about the pain.

    Best of luck!

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  • msphil
    msphil Member Posts: 1,536
    edited June 2013

    the choice is up to each, I was diagnosed during the time I was preparing for my wedding, and after going over decision with surgeon and fiancee, I choose  L mast instead of lumpectomy, and I am now 19 yr Survivor (Praise GOD).msphil(idc, stage 2, 0/3 nodes, chemo and rads and 5 yrs on Tamoxifen) 

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  • puppymama09
    puppymama09 Member Posts: 77
    edited June 2013

    Recentlydiagnosed,  your situation and mine are very similiar, reading your post it all sounded so familiar.  For what it is worth I think you have made the right decision.  I opted for a lumpectomy, a large factor in that decision was you can always get a mastectomy later but once you have one there is no turning back.  I had my lumpectomy about 10days ago. Personally it was quite painful, but I did have 2 lumps that had to be removed so a larger area I guess.  At this point I am still sore but feeling much better, almost back to normal.  Next stop for me is the Oncologist appt and probably chemo. difiniteley will be have radiation.  Keep us posted!  You'll do fine!  Will be thinking of you.....

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  • peace777
    peace777 Member Posts: 71
    edited June 2013

    Thank you ALL for your insight.  I definately feel peace with my decision.  I feel so thankful that they have these forums. God bless you all! I will keep you all in my prayers. I cant even express my appreciation!  will talk soon. carol

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2013

    Hi

    for me, mastectomy was never even offered--although my surgeon, as an afterthought, said she would do it if I wanted.  My lump was very discrete and everyone was optimistic about getting "it all".  I had the lumpectomy and the oncotype and had chemo and radiation and am almost 5 years out.  I have dense breasts and my mammogram had indeed missed this lump 6 months before it was found.  but now I have an annual MRI along with the mammogram.  My choices seemed to have been the right one for me--- I sleep well at night!!!  And the cosmetic result was good-- I cannot even tell I had a lumpectomy.  I had no nodes, etc. so I felt it was right.

    You can go back later and do more, as long as there are no medical indicators now that suggest more aggressive surgery.  I certainly hope  I never have to deal with this again, but if I did, I now feel like I know more and have access to more information.

    I have a friend who has had bc two times-- lumpectomies both times--- she is fine. 

    Once you have your pathology, things become much easier to plan...

    good luck

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2013

    I'm glad you have made your decision & really think that it was the right one for your situation. Best of luck!

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