should I have lumpectomy?

maryfsz
maryfsz Member Posts: 31
edited March 2014 in Breast Cancer #1
I was diagnosed 2 years ago and have had radiation and chemo, but the cancer had spread to bones and liver by the time it was discovered, so they left the breast tumor in place. I have been off of chemo for 16 months and take Femara, but I have been worrying about the source tumor. It has been reduced, but it is still there. I think I am going to have a lumpectomy in the next few weeks. It seems that I have to organize my own list of things to do in this battle.
Anyone else in this boat...or been down this river before me?

Comments

  • bebe1976
    bebe1976 Member Posts: 60
    Dear Mary
    I have not been on this boat, but common sense tells me leaving a tumor behind is NOT a good idea. As I have learned we should be proactive and minimize all our risks of having to deal with this monster time and time again. So...I'll say go for it.
    Love Jenn
  • nasa2537
    nasa2537 Member Posts: 311
    Hi...I have never been in this boat, but I would say that you need to do what will help your peace of mind. If it makes you feel better to have it out, then I would certainly do it. If it were me, I would do it, because I think I would rest easier just knowing it was gone. Best wishes in your decision. God bless, Cyndi
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    Studies show lumpectomy is as effective as a mastectomy. I'd go for it also rec ask your MD about sentinel node biopsy. What does your MD say about u wanting a lumpectomy?
  • kat02
    kat02 Member Posts: 76
    I was in this situation. I had multiple tumors in both breasts along with mets to the bone and pelvic cavity. My original doctors didn't want to do the surgery. They didn't think that it would make an overall difference. I finally got a referral from one of the doctors that I had faith in to oncologist / surgeon who was a breast specialist. He agreed with me that surgery would be a good thing. He thougtht that although I already had mets it would be worthwhile. So November 21 of last year, I had a bilateral mastectomy. He also removed my lymph nodes and some bone. I still have problems, I am still on chemo and I have had several surgeries since November - the lastest on September 13th. However, I have not regretted my decision one day. It was a relief to get rid of the original source of my disease. However, some doctors believe that when you remove the source tumor, there is significant growth in mets. I have had more trouble with my mets and we did find a new tumor on the abdominal wall under the breast bone when I had surgery in September. I believe that the tumor was there in November. Because after the surgery I kept having chest discomfort under my ribcage. I wanted to reach up and rip something out. My surgeon now believes that it was the tumor. It just wasn't being picked up on any tests. However, I have only had one new bone mets since the surgery. I believe the surgery was worthwhile. I am glad that I had it. At least I don't have to feel the source with each monthly breast exam.

    Love, Hugs and Prayers,

    Kat
  • 24242
    24242 Member Posts: 1,398
    Mary I am sorry you have to feel the way you do facing all you must, but the key is we have to do it for ourselves. Doctors can only give you what they know from their own experiences. I am so grateful for those doctors who truly want to know all they can about the job they do. Thank God their are still doctors out there who are doing more than thought possible.
    Cancer fighting surely doesn't seem to have come that far in all these years. I watched my Grandmother battle with cobalt and eventually secume to her mastesies. I was 18 and never could forget and always checked never wanting anyone else to have to suffer like that.
    You are an amazing woman to be able to cope with all you have been given and left with, to be able to rise up and dust yourself off to move on to what is truly going to give you your life back. I don't know about leaving tumors in but I do know that having mastectomies only lowers the risks that are already there. When I had cancer it was get them off, both of them they aren't good for anything now but more risk and more fears to live with. I had one done at a time and know I would have died had I had them both done together, ending up with raging staff infection, that would of gone to the heart had it been that side too. Don't kid yourself Mary, you know deep inside what it is you need to feel better and move on, beyond the disease and its treatments. I see this as being the most important thing in knowing what you have control over and what you do not. After we have cancer we are even at at a greater risk now for getting a wack of other cancer let alone the one we just started with.
    I sometimes feel that women minimize this part of living with the disease often believing in the cure more than watching their bodies and really listening the second time around. There are women I have met now who have battled cancers, different kinds over the coarse of 12-20 years often facing this 4 sometimes 5 times, IMAGINE, they still have smiles on their faces and go through what they must.
    Start looking at all you can do to insure yourself of your HEALTH, that is all your doing and educate yourself so you can tell the doctors what you know. Often it is more than they are willing to share.
    I often tell the doctors I know they can miss spots and next round of any problem you will have to give me that MRI. I feel comfortable with where I am and who my doctors are, a blessing.
    Be good to yourself,
    you know what you want,
    Tara
  • bdean
    bdean Member Posts: 259
    Dear Mary:
    I still have my breast - the source of my cancer. I was diagnosed as Stage 4 originally - bone mets, liver, lymph nodes, etc. My oncologist believes it is better to keep the breast because usually a recurrance will appear in this area rather than showing up somewhere else. I feel safer with my known tumors than having it removed and having to worry about my whole body. I have had two new tumors come up in this breast, but so far the chemo has shrunk them. You must do what you feel is best for you. I do know from other friends that the tumors will grow somewhere else, sometimes even if you still have the source area. Remember your poor body will have to use extra energy and strength to recouperate from the surgery.
    Good luck in your decision, and I will try to pray for you.
    With hugs, Brenda
  • maryfsz
    maryfsz Member Posts: 31
    kat02 said:

    I was in this situation. I had multiple tumors in both breasts along with mets to the bone and pelvic cavity. My original doctors didn't want to do the surgery. They didn't think that it would make an overall difference. I finally got a referral from one of the doctors that I had faith in to oncologist / surgeon who was a breast specialist. He agreed with me that surgery would be a good thing. He thougtht that although I already had mets it would be worthwhile. So November 21 of last year, I had a bilateral mastectomy. He also removed my lymph nodes and some bone. I still have problems, I am still on chemo and I have had several surgeries since November - the lastest on September 13th. However, I have not regretted my decision one day. It was a relief to get rid of the original source of my disease. However, some doctors believe that when you remove the source tumor, there is significant growth in mets. I have had more trouble with my mets and we did find a new tumor on the abdominal wall under the breast bone when I had surgery in September. I believe that the tumor was there in November. Because after the surgery I kept having chest discomfort under my ribcage. I wanted to reach up and rip something out. My surgeon now believes that it was the tumor. It just wasn't being picked up on any tests. However, I have only had one new bone mets since the surgery. I believe the surgery was worthwhile. I am glad that I had it. At least I don't have to feel the source with each monthly breast exam.

    Love, Hugs and Prayers,

    Kat

    Dear Kat;
    Thanks for all this info on your experience. You are the first I have "talked" to who might understand my situation.
    What were the other surgeries you have had since the mastectomy? And, what do you mean about having "more trouble with mets" since the surgery, yet you state that you believe the chest met to have been there before the November surgery although no tests showed it.
    Dumb question: couldn't they have seen it when they performed the bilateral mastectomy?
    I know there are so many circumstances, but I would like to know more about your case as it is so close to mine in many ways.
    Thanks for emailing me back. This helps
    Mary
  • maryfsz
    maryfsz Member Posts: 31

    Studies show lumpectomy is as effective as a mastectomy. I'd go for it also rec ask your MD about sentinel node biopsy. What does your MD say about u wanting a lumpectomy?

    Dear Hummingbyrd;
    Thanks for the tip about the sentinel node biopsy. I had forgotten about that. My BC had spread so far by the time we found it that I had just assumed that my nodes would all show positive, but my oncologist says that it can spread via the bloodstream instead of the lymphatic system.
    He and I came up with the same notion of the lumpectomy at the same time. I had it on my list of questions and he brought it up. After 2 years we both think it should come out, but I would rather have the lumpectomy instead of the mastectomy if it is feasible.
    I will have a consultation with the surgeon in 4 weeks.
    Thanks for the input.
    Mary
  • maryfsz
    maryfsz Member Posts: 31
    nasa2537 said:

    Hi...I have never been in this boat, but I would say that you need to do what will help your peace of mind. If it makes you feel better to have it out, then I would certainly do it. If it were me, I would do it, because I think I would rest easier just knowing it was gone. Best wishes in your decision. God bless, Cyndi

    Thanks for your vote of confidence, Cyndi.
    Hugs,
    Mary
  • maryfsz
    maryfsz Member Posts: 31
    bebe1976 said:

    Dear Mary
    I have not been on this boat, but common sense tells me leaving a tumor behind is NOT a good idea. As I have learned we should be proactive and minimize all our risks of having to deal with this monster time and time again. So...I'll say go for it.
    Love Jenn

    Jenn;
    I am like you...feeling better when I can be proactive. Seems like the system demands that you stay on top of things. I saw my Mother be submissive and always depending on others for her health care. Mom passed away last year. I won't be like that, I promise.
    Love,
    Mary
  • jeancmici
    jeancmici Member Posts: 665 Member
    maryfsz said:

    Dear Kat;
    Thanks for all this info on your experience. You are the first I have "talked" to who might understand my situation.
    What were the other surgeries you have had since the mastectomy? And, what do you mean about having "more trouble with mets" since the surgery, yet you state that you believe the chest met to have been there before the November surgery although no tests showed it.
    Dumb question: couldn't they have seen it when they performed the bilateral mastectomy?
    I know there are so many circumstances, but I would like to know more about your case as it is so close to mine in many ways.
    Thanks for emailing me back. This helps
    Mary

    Mary,

    Don't overlook Brenda's reply. She has done much research and has a very caring on-top-of-things doctor.

    Jean