Is there a chance of reoccurence after double mast.?

candacemc
candacemc Member Posts: 21
edited March 2014 in Breast Cancer #1
I am finally arming myself with bits of information about my situation. I froze at diagnosis and stayed that way til now. Here's my question: I had a double mastectomy (one radical with the loss of 8 or 9-jeez lymph nodes that were all clean) at the first sign that one breast had 2 microscopic calcification crystal based tumors. The sum was less than Stage 1. The other breast removal was recommended as a prophylactic measure. Since mast. I have had a full body scan of organs, bone scan (both clear) and the genomics test that showed I have an 8% chance of reoccurence. HOW is that possible if I have no breasts/tissue/skin? WHY do I have to take Tamox for 5 years if I have no breasts? One last bit of information --- I had my first mammogram (the one this year) at 45 years of age. I had gone 13 years without a pap smear, but have never and still don't have any problems in that area of my body. However, the doc used the 13 year period as the reason that my "breast cancer could have jumped the lymph nodes and went straight into my blood stream". Sooo... does this mean that it can live dormant somewhere else in my body for a while and then reappear as a secondary cancer?

What am I missing here? Every single doc that I have seen (and I love them all, in the Houston Med Center) recommended that I have the double mast. to "end the drama". So, I took this drastic measure to now find out that the drama will never end?? I cannot wait to meet with my onc to get these questions answered.
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Comments

  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Candace, even when a
    Candace, even when a bilateral mastectomy is performed, ALL breast tissue cannot be removed. So, the answer to your question, unfortunately, is that, yes, you COULD have a recurrence. Based on your test you mentioned that it showed an 8% chance for recurrence. This is very low. Your onc is recommending Tamoxifen because I am assuming that your cancer was estrogen fed (ER positive). I sincerely hope any "drama" will end for you and you can get back to Life After Breast Cancer. Take care.
  • candacemc
    candacemc Member Posts: 21
    MyTurnNow said:

    Candace, even when a
    Candace, even when a bilateral mastectomy is performed, ALL breast tissue cannot be removed. So, the answer to your question, unfortunately, is that, yes, you COULD have a recurrence. Based on your test you mentioned that it showed an 8% chance for recurrence. This is very low. Your onc is recommending Tamoxifen because I am assuming that your cancer was estrogen fed (ER positive). I sincerely hope any "drama" will end for you and you can get back to Life After Breast Cancer. Take care.

    no no no... I took the most
    no no no... I took the most aggressive approach available so that the nightmare would be over. So, i lost both breasts for basically, no reason. I could've had the lumpectomy. omg. AND... my onc told me there was a 30% chance of developing uterine cancer with my Tamoxifen regime but "not to worry we will monitor you closely and can always give you a hysterectomy if this occurs". Like... you know, don't worry, if we run out of sugar I'll run to the store.
  • candacemc
    candacemc Member Posts: 21
    MyTurnNow said:

    Candace, even when a
    Candace, even when a bilateral mastectomy is performed, ALL breast tissue cannot be removed. So, the answer to your question, unfortunately, is that, yes, you COULD have a recurrence. Based on your test you mentioned that it showed an 8% chance for recurrence. This is very low. Your onc is recommending Tamoxifen because I am assuming that your cancer was estrogen fed (ER positive). I sincerely hope any "drama" will end for you and you can get back to Life After Breast Cancer. Take care.

    thanks for responding. i'm
    thanks for responding. i'm having a serious case of denial, doubt, anger. i have just found a local support group, and hopefully they can direct me to a psych. i am seriously depressed and just read that depression can affect reoccurence. shoot me.
  • Rague
    Rague Member Posts: 3,653 Member
    Yes - unfortunately
    Yes - it is possible. Once we have experienced cancer there is a chance that it will metasis to other areas of the body, especially if lymph nodes are involved. Unfortunately, there is no cure for breast cancer in today's world. We can be NED (No Evidence of Disease) but that is not a guarantee that we will never again deal with cancer. The likelihood level of reoccurance depends on many things - the type, the stage, rather lymph nodes are involved or not, all enter into it, along other 'things'.

    Our bodies produce some amounts of estrogen even once we are many years post menopause be it natural or surgery induced so if we are ER+, we need to take an estrogen blocker for 5 years post BC surgery (or end of Chemo/rads).

    Susan
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    candacemc said:

    no no no... I took the most
    no no no... I took the most aggressive approach available so that the nightmare would be over. So, i lost both breasts for basically, no reason. I could've had the lumpectomy. omg. AND... my onc told me there was a 30% chance of developing uterine cancer with my Tamoxifen regime but "not to worry we will monitor you closely and can always give you a hysterectomy if this occurs". Like... you know, don't worry, if we run out of sugar I'll run to the store.

    Candace, just to give you
    Candace, just to give you some comfort in the decision you made to have the mastectomy versus the lumpectomy.... I was dx in June 2009 with IDC and I opted for a lumpectomy. I also had chemo and rads. Just as I was scheduled for my first mammo post treatment, I noticed another lump in the same affected breast, just in another location. I had a recurrence in July 2010 and at the second dx opted for the bilateral mastectomy with 2 levels of lumph nodes removed. Thank goodness, they were clear. So, you did what you thought was right for you. I hope you never have to hear those words again but you need to stay vigilent with your self exams. This is a very frightening situation that I wish none of us had to ever endure.
  • candacemc
    candacemc Member Posts: 21
    Rague said:

    Yes - unfortunately
    Yes - it is possible. Once we have experienced cancer there is a chance that it will metasis to other areas of the body, especially if lymph nodes are involved. Unfortunately, there is no cure for breast cancer in today's world. We can be NED (No Evidence of Disease) but that is not a guarantee that we will never again deal with cancer. The likelihood level of reoccurance depends on many things - the type, the stage, rather lymph nodes are involved or not, all enter into it, along other 'things'.

    Our bodies produce some amounts of estrogen even once we are many years post menopause be it natural or surgery induced so if we are ER+, we need to take an estrogen blocker for 5 years post BC surgery (or end of Chemo/rads).

    Susan

    Thanks Susan. I just called
    Thanks Susan. I just called and have an appt next week with my onc. I feel so cheated. The minute I heard the word "cancer" I froze and followed my docs recommendations, wholeheartedly. Adrenaline was the force behind it all. Now, as I begin to thaw from the freeze and the adrenaline gives way to regular life... I WANT MY BODY BACK. I know I'm supposed to be "fighting" but to now hear that it's not over. I want to surrender, wave the white flag and lay down.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    candacemc said:

    no no no... I took the most
    no no no... I took the most aggressive approach available so that the nightmare would be over. So, i lost both breasts for basically, no reason. I could've had the lumpectomy. omg. AND... my onc told me there was a 30% chance of developing uterine cancer with my Tamoxifen regime but "not to worry we will monitor you closely and can always give you a hysterectomy if this occurs". Like... you know, don't worry, if we run out of sugar I'll run to the store.

    Taxoxfen about 18 mths now
    I had to go get test for thickening of uterus..which I had then D & C...thought perhaps hysterectomy...but for now ok...now I was told my oncol. have ever 6mths. I am wondering if I have to have D & C after each test? I was told same thing risk of uterine cancer is less risk then getting Breast cancer back again..!
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    candacemc said:

    Thanks Susan. I just called
    Thanks Susan. I just called and have an appt next week with my onc. I feel so cheated. The minute I heard the word "cancer" I froze and followed my docs recommendations, wholeheartedly. Adrenaline was the force behind it all. Now, as I begin to thaw from the freeze and the adrenaline gives way to regular life... I WANT MY BODY BACK. I know I'm supposed to be "fighting" but to now hear that it's not over. I want to surrender, wave the white flag and lay down.

    i love my dr...
    but when I got my results over the phone..HE said "well not bad but not good" gave me name of it etc...and I THEN started to research. NOT until in surgeons office was I scared etc..until he said survival RATE!
  • sal314
    sal314 Member Posts: 599 Member
    All the Feelings You Have are Normal
    Candace,

    Dealing with BC, no matter what stage you're diagnosed with, is REALLY hard! I think we all at one time or another, second guess ourselves. Truth is, none of us know what tomorrow will bring. We can only do our best at making decisions that we "think" are right for us at the time.

    I initially had a lumpectomy. It WASN'T better than having a mastectomy, which I was initally up for. My doctor ended up taking half my breast to get clean margins. I lived with the disfigurement for 4 years before opting to have a mastectomy and Lat Flap reconstruction. I wish I didn't wait so long. I also decided to do it for the "extra" insurance of having the cancer not come back in that breast.

    I know it's scary and you're dealing with a lot of emotions right know. I think it's GREAT that you're looking into joining a support group. They really do help! You may also want to talk to your doctor about anti-depressants. It's VERY common for people to go on them after such a life altering experience.

    You said you wanted your life back. Well, you still have it! You are just a little different. One can't help but change, grow and become a stronger person after going through cancer. We may not ever have our old "selves" back (or our bodies), but that's not necessarily a bad thing. Give yourself time. It takes awhile to process everything you've just been through. Life does get better and there will come a time when you won't think about breast cancer 24/7!

    Be thankful they caught it early. The fact that the nodes where all clear is HUGE! People with lymph involvement are much more likely to have to battle recurrances.

    Hang in there. Vent as often as you need to. Things will get brighter eventually!!

    Hugs and Blessings,
    Sally
  • candacemc
    candacemc Member Posts: 21
    sal314 said:

    All the Feelings You Have are Normal
    Candace,

    Dealing with BC, no matter what stage you're diagnosed with, is REALLY hard! I think we all at one time or another, second guess ourselves. Truth is, none of us know what tomorrow will bring. We can only do our best at making decisions that we "think" are right for us at the time.

    I initially had a lumpectomy. It WASN'T better than having a mastectomy, which I was initally up for. My doctor ended up taking half my breast to get clean margins. I lived with the disfigurement for 4 years before opting to have a mastectomy and Lat Flap reconstruction. I wish I didn't wait so long. I also decided to do it for the "extra" insurance of having the cancer not come back in that breast.

    I know it's scary and you're dealing with a lot of emotions right know. I think it's GREAT that you're looking into joining a support group. They really do help! You may also want to talk to your doctor about anti-depressants. It's VERY common for people to go on them after such a life altering experience.

    You said you wanted your life back. Well, you still have it! You are just a little different. One can't help but change, grow and become a stronger person after going through cancer. We may not ever have our old "selves" back (or our bodies), but that's not necessarily a bad thing. Give yourself time. It takes awhile to process everything you've just been through. Life does get better and there will come a time when you won't think about breast cancer 24/7!

    Be thankful they caught it early. The fact that the nodes where all clear is HUGE! People with lymph involvement are much more likely to have to battle recurrances.

    Hang in there. Vent as often as you need to. Things will get brighter eventually!!

    Hugs and Blessings,
    Sally

    Thank you soooo much Sally.
    Thank you soooo much Sally. I needed to hear that from someone living it. I'm so hard on myself when this isn't something I chose. But, it's a real blow to now realize that this will be a lifelong issue. I should have some peace of mind that I did take an aggressive defensive stand... what else is there to do? Pick up the pieces and move forward. My head and my heart need to join forces. haha
  • seof
    seof Member Posts: 819 Member
    candacemc said:

    Thank you soooo much Sally.
    Thank you soooo much Sally. I needed to hear that from someone living it. I'm so hard on myself when this isn't something I chose. But, it's a real blow to now realize that this will be a lifelong issue. I should have some peace of mind that I did take an aggressive defensive stand... what else is there to do? Pick up the pieces and move forward. My head and my heart need to join forces. haha

    you are in good company
    The denial, anger, frustration, depression...are all common to those of us I call survivors. My definition of a cancer survivor is someone who has been diagnosed with cancer who is still alive. Being a survivor changes most people in permanent ways, both physically and psychologically. I also had a double mastectomy, one side was prophylactic. My Drs. did not recommend it because I "only" had a 10% chance of the cancer coming back in the other breast. I say why not get rid of the 10%? I had chemo, mastectomy, radiation, chemo, reconstruction. I am as cancer free as they can make me (NED). Until further notice, I claim wellness. There are no guarantees that cancer will not appear in some other part of the body, just as there are no guarantees that any person who does not have cancer will never get it. However, we can do the best we know how to do to reduce our chances and live as well as we can. Don't beat yourself up about feeling the way you do right now. Most of us have been there at least once along the cancer journey. Each person experiences the journey in his/her own way and time. I think you are smart to get involved in a support group. You will have face-to-face contact with folk who have been there/done that, and they will be there when and where you need them. As for your physical health, you have followed the best advice you had available to you. Now it is up to you to find how to live and be happy with the "new you".

    I raise a glass to better days ahead for you, seof
  • webbwife50
    webbwife50 Member Posts: 394
    mastectomy
    My onc. told me that lumpctomy does not increase the chance for reoccurence any more than mastectomy. It's about getting the cancer/tumor out(surgery)before it starts shedding cells and then doing the adjuvent treatments depending on your cancer. It's all very complicated and hard to process when your right in the middle of it all. I think your idea of talking to a professional is a good one. I had bilat. mast. June 09 then did months of chemo,and found some counseing to be VERY helpfull. My counselor specialized in people with cancer, transplant patients, ect. and she really helped me see that my life is truly worth the fight. God bless you and I'll keep you in my prayers! Hugs...Alison
  • lizzie17
    lizzie17 Member Posts: 548
    shared fears
    I too, have realized that the drama is part of my every day. We pray, try to eat right, and try to accept the new "normal"---It is hard, and I share your feelings.
    Hugs to you.
  • carkris
    carkris Member Posts: 4,553 Member
    lizzie17 said:

    shared fears
    I too, have realized that the drama is part of my every day. We pray, try to eat right, and try to accept the new "normal"---It is hard, and I share your feelings.
    Hugs to you.

    Ok first take a deep breath.
    Ok first take a deep breath. You are experiencing anxiety because everything happened so fast.Now you are not in panic mode you are second guessing yourself. There are many women on this board, some choose lumpectomy and rads, some choose mastectomy. some it is chosen for us. We make the best decision at the time.
    I am not sure why your docs recomended bilateral mastectomy. perhaps it was your pathology, or you expressed a desire to not have to deal with it again. With BC there are no guarantees.
    However, my first BC was node negative, 8 mm, estrogen negative. I had a mastectomy because of DCIS.in 1994 at age 34. in the interim had biopsies, negative or precancer. I became very anxious and was seriously looking into propholactic mastectomy. Although the docs did not agree they did say it could be done. no emergency, I was planning it for the fall, but unfortunately in May got diagnosed with BC again. more advanced. It was not detected on mammo. and was even inconclusive on MRI. I really wish I had bilateral mastectomy from the get go. I would have avoided a lot of anxiety and misery. Of course hind sight is 20/20. My chances may have been less but when you fall on the low side of the percentages, its little comfort. Hard to say where you would fall. Nobody knows what causes this or who would recur, I guess I am one of those people who makes BC.
    I do believe it makes sense that if you have less breast tissue, there is less to get cancer. adding tamoxifen lowers your chances. I know the stats say mastectomy vs lumpectomy are the same. but I think it depends on why you get cancer and nobody knows that. (just my opinion) Perhaps Heather Belle will add something, she is a young woman who made the same choice. Mastectomies are hard, no doubt. Like i said we all make our choices, none of them wrong.
    I hope I have not offended anyone, I support any ones decision. In fact this has been difficult to talk about as it makes me really sad, but I wanted you to know that there are people who wish they had made your decison. To bring you comfort. God Bless!
    P.S. I had a second mastectomy without hesitation, turns out I needed it anyway.
  • carkris
    carkris Member Posts: 4,553 Member
    carkris said:

    Ok first take a deep breath.
    Ok first take a deep breath. You are experiencing anxiety because everything happened so fast.Now you are not in panic mode you are second guessing yourself. There are many women on this board, some choose lumpectomy and rads, some choose mastectomy. some it is chosen for us. We make the best decision at the time.
    I am not sure why your docs recomended bilateral mastectomy. perhaps it was your pathology, or you expressed a desire to not have to deal with it again. With BC there are no guarantees.
    However, my first BC was node negative, 8 mm, estrogen negative. I had a mastectomy because of DCIS.in 1994 at age 34. in the interim had biopsies, negative or precancer. I became very anxious and was seriously looking into propholactic mastectomy. Although the docs did not agree they did say it could be done. no emergency, I was planning it for the fall, but unfortunately in May got diagnosed with BC again. more advanced. It was not detected on mammo. and was even inconclusive on MRI. I really wish I had bilateral mastectomy from the get go. I would have avoided a lot of anxiety and misery. Of course hind sight is 20/20. My chances may have been less but when you fall on the low side of the percentages, its little comfort. Hard to say where you would fall. Nobody knows what causes this or who would recur, I guess I am one of those people who makes BC.
    I do believe it makes sense that if you have less breast tissue, there is less to get cancer. adding tamoxifen lowers your chances. I know the stats say mastectomy vs lumpectomy are the same. but I think it depends on why you get cancer and nobody knows that. (just my opinion) Perhaps Heather Belle will add something, she is a young woman who made the same choice. Mastectomies are hard, no doubt. Like i said we all make our choices, none of them wrong.
    I hope I have not offended anyone, I support any ones decision. In fact this has been difficult to talk about as it makes me really sad, but I wanted you to know that there are people who wish they had made your decison. To bring you comfort. God Bless!
    P.S. I had a second mastectomy without hesitation, turns out I needed it anyway.

    I would ask about the not
    I would ask about the not seeing a doc in 13 years comment for clarification, because that doesnt make sense.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    carkris said:

    I would ask about the not
    I would ask about the not seeing a doc in 13 years comment for clarification, because that doesnt make sense.

    I second what carkris is
    I second what carkris is saying. I was diagnosed at 39, very early cancer, opted for MX on the cancer side & a prophylatic masectomy on the other side. They say with some breast cancers that the long-term rates of recurrence are the same with lumpectomy/rads vs. masectomy. Most of that research, however, is done on post-menopausal women. BC that occurs in pre-menopausal women is often a different beast. I'm sorry that you're second guessing ... I just read today that breast cancer sufferers rank among the highest of all cancer survivors that deal with post-traumatic stress disorder. We do what we have to when we're diagnosed, we make the best decisions we can and then the emotional fall-out occurs months after we're 'done.' The decision was made. Second guessing is just going to literally drive you insane. I too think the support group will be a good idea. Hang in there!
  • candacemc
    candacemc Member Posts: 21
    carkris said:

    I would ask about the not
    I would ask about the not seeing a doc in 13 years comment for clarification, because that doesnt make sense.

    I am feeling much better
    I am feeling much better everyone. Thank you for listening to my whining. I have appts next week and will definitely ask about the thirteen years. I very clearly was told that "even though your lymph nodes were all clear, because it's been 13 years since you've seen a doctor, we don't know how long you've had these spots and cancer can jump to the bloodstream". That was the explanation - not knowing how long I had the microscopic spots. I was incorrect before when I said pap smear, although I did get that lecture at the same time. No one was happy I had gone that long without tests.

    Anyway, I am so appreciative to each and every one of you that took the time to share your wisdom with me. That is the best medicine - surrounding yourself with others that understand. Much love!!

    candace
  • susie09
    susie09 Member Posts: 2,930
    MyTurnNow said:

    Candace, even when a
    Candace, even when a bilateral mastectomy is performed, ALL breast tissue cannot be removed. So, the answer to your question, unfortunately, is that, yes, you COULD have a recurrence. Based on your test you mentioned that it showed an 8% chance for recurrence. This is very low. Your onc is recommending Tamoxifen because I am assuming that your cancer was estrogen fed (ER positive). I sincerely hope any "drama" will end for you and you can get back to Life After Breast Cancer. Take care.

    You still have breast
    You still have breast tissue. There is no way that all of it can be removed, even with a mastectomy. That is why a lumpectomy with rads is the same as having a mastectomy in regards to survival rate and recurrence rate.

    So yes, a recurrence can happen. It can happen to anyone. Sorry, I hope this doesn't upset you.

    Live your life and try not to worry.
  • Rague
    Rague Member Posts: 3,653 Member
    candacemc said:

    I am feeling much better
    I am feeling much better everyone. Thank you for listening to my whining. I have appts next week and will definitely ask about the thirteen years. I very clearly was told that "even though your lymph nodes were all clear, because it's been 13 years since you've seen a doctor, we don't know how long you've had these spots and cancer can jump to the bloodstream". That was the explanation - not knowing how long I had the microscopic spots. I was incorrect before when I said pap smear, although I did get that lecture at the same time. No one was happy I had gone that long without tests.

    Anyway, I am so appreciative to each and every one of you that took the time to share your wisdom with me. That is the best medicine - surrounding yourself with others that understand. Much love!!

    candace

    Some suggestions -
    Some suggestions -

    Get a spiral bound notebook and write each question on it's own page so you have foom to write the answers you get to them. Give each question a number and if you need more to write on then go farther back in the book and put that number on the top of the page so you can relate what you write the the right question.

    Take someone with you who can/will remain objective as to what is being said to you just 'in case' and have then write down what they hear the Dr say. It's not hard to hear bits and pieces of what is said.

    Ask for booklets/printouts regarding your questions/their answers.

    Ask rather or not you had a Radical Mastectomy (as mentioned in first post of this thread) or a Modified Radical. From all I've read/heard, a Radical Mastrectomy in today's world is usually only used with Stage 4 (which means it has spread) and involves taking all breast tissue, all nodes and chest muscle. A Modified Radical is much less invasive.

    Ask what tests were done - not just 'scans' but genetic/etc. - and ask for copies of them and all tests that have been done - even all blood tests to keep up with all levels.

    Ask, Ask, Ask and Ask somemore! Document, Document, Document!

    Remember that not all Breast Cancers are the same Beast, not are they the same within the same type. We are each unique and our bodies are each unique in how they will fight the Beast within.

    You can do what you have to and it is surprizing how fast the time will pass.

    Susan
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    Rague said:

    Some suggestions -
    Some suggestions -

    Get a spiral bound notebook and write each question on it's own page so you have foom to write the answers you get to them. Give each question a number and if you need more to write on then go farther back in the book and put that number on the top of the page so you can relate what you write the the right question.

    Take someone with you who can/will remain objective as to what is being said to you just 'in case' and have then write down what they hear the Dr say. It's not hard to hear bits and pieces of what is said.

    Ask for booklets/printouts regarding your questions/their answers.

    Ask rather or not you had a Radical Mastectomy (as mentioned in first post of this thread) or a Modified Radical. From all I've read/heard, a Radical Mastrectomy in today's world is usually only used with Stage 4 (which means it has spread) and involves taking all breast tissue, all nodes and chest muscle. A Modified Radical is much less invasive.

    Ask what tests were done - not just 'scans' but genetic/etc. - and ask for copies of them and all tests that have been done - even all blood tests to keep up with all levels.

    Ask, Ask, Ask and Ask somemore! Document, Document, Document!

    Remember that not all Breast Cancers are the same Beast, not are they the same within the same type. We are each unique and our bodies are each unique in how they will fight the Beast within.

    You can do what you have to and it is surprizing how fast the time will pass.

    Susan

    Candace
    We all make the best decision that we can make based on the info. given to us. No one is 100% certain. There are no guarantees when dealing with cancer. The surgery is over, now you have to heal. Second guessing yourself will only bring fear. None of us need more of that. Take steps to do what you need to do.

    Live well Laugh often Love much