Recurrence Very Rare for Initial Cancer 0 Stage DCIS

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Different Ballgame
Different Ballgame Member Posts: 868
edited March 2014 in Breast Cancer #1
At 65 years old breast mammogram revealed a calcification. Calcification ended up being 0 Stage, DCIS. Two surgical biopsies yield margins that were not clear. An infection developed 4 days after the second surgical biopsy. That was the best thing that happened to me because then I researched for the next 2-1/2 months and sought second opinion. I decided to be extremely aggressive and opted to have a bilateral mastectomy. Mastectomy revealed no more cancer present in breast and sentinel lymph nodes were free of cancer.

I also decided to have breast reconstruction, which I am very happy with. Now, three years later a growth appeared on my scar. Plastic surgeon thought, as I did, that it was an irritation to the stitching beneath the scar, but when I told him that by feel (not sight) I thought it might be growing. The growth did not look like cancer, but he then wondered - 50% wondered if the growth was an irritation to the stitch and then another 50% wondered if it was cancer. Now the cancer is Invasive Carcinoma, >95% positive for estrogen receptor, progesterone receptor 80% positive, p53 20% positive, and HER-2/neu 30%, score 1+, negative.

I have been told that I am very rare, that I am in the 1% category for recurrence, meaning that 99% of the women who have 0 Stage, DCIS never have a recurrence.

CT scan, bone scan, and MRI revealed no further cancer present in body; however, those tests cannot detect microscopic cancer.

This week I finished 31 days of radiation. Next step is hormone therapy. I am not too thrilled about taking the 5-year hormone therapy pill for postmenopausal women because of the various side effects. I talked to one woman who discontinued the hormone therapy after being on it for 6 months. I never thought that I had the option to say, "No" to that treatment. Now, I am curious about what other women have decided.

(1) Are there any women who also had 0 Stage, DCIS, and then had an invasive recurrence. What's your outcome?
(2) Are there any women who have opted not to go on hormone therapy or who have discontinued taking it?

I am a very strong, positive, fun loving woman and love and live life to its fullest. I especially love making people feel special and love making their day. I looked to the positive as a result of cancer. My positives were that I resumed cooking and gave it away to various people...doctors, co-workers, neighbors. I also share my recipes and am a very detailed person when writing out the recipes. I am a very fussy, expensive, high quality, from scratch cook. It is amazing to see how people react to good food. I also ended up adopting one of my doctors, making him My #1 Doctor - adoption also carries goodies for him everytime I see him. It just so happened that he loves food and he is tall and very thin - some people have all the luck. Ha! Ha!

I am having a little difficulty with the fact that my initial cancer was a speck - a calcification - not a tumor. With it brought infections, screw ups, and multiple surgeries before and after the mastectomy. I was extremely aggressive and forfeited my breasts because I valued my body more than I valued my breasts and with the mastectomy, based on the fact that no more cancer was present, I would not have to have radiation nor chemo. And yet, 3 years later what I totally avoided ended up coming into my life - radiation and hormone therapy. I do believe that there is a positive reason why the cancer returned to me, but right at the moment, I don't know why.

Second time around with cancer is not the same ballgame. Cancer literature seems to be geared more for the first time around. People also are very sympathetic and compassionate with the first time around cancer. The second time around they do not know how to react to you, probably are fearful or just don't know what to say, so based on their reaction, you end up not telling many people and end up feeling very alone or end up feeling like a leper. I never cried the first time I had the cancer. The second time I have come very close to crying, more than once, but the tears do not come.

Another thing that is very difficult to find - support groups for women who work. There are tons of programs during the day, but trying to find one near your home in the evening is a search, not to mention the travel distance. Three that I have found are 1 hour away from my house. There is a major hospital in my town (10 minutes from my house) and yet they offer no evening programs for the breast cancer woman who works during the day. Sometimes you want to talk - not write - you want immediate feedback that you get when you talk.

That's it for now. I look forward to hearing from you.
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Comments

  • jbug
    jbug Member Posts: 285
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    Welcome
    I'm sorry you've had to find this site, but I'm really glad that you did. Your story of recurrence is frightening and you must be devasted. You will find a great deal of love and support on this site. There are women here that have gone thru the gamut of treatments/therapy. There are number of survivors that post regularly as well as some spouses (which is wonderful!). The beauty of this site is that the women here understand that each of us makes the decisions about treatment that are right for them. You will find posts from women who have decided not to have recommended treatments/meds.

    I don't have a lot of answers, but I did want to welcome you to the site and let you know that you will find support here. You may want to post where you live, in case someone in your area does know of an evening support group.

    God Bless...
    Julie
  • Jeanne D
    Jeanne D Member Posts: 1,867
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    jbug said:

    Welcome
    I'm sorry you've had to find this site, but I'm really glad that you did. Your story of recurrence is frightening and you must be devasted. You will find a great deal of love and support on this site. There are women here that have gone thru the gamut of treatments/therapy. There are number of survivors that post regularly as well as some spouses (which is wonderful!). The beauty of this site is that the women here understand that each of us makes the decisions about treatment that are right for them. You will find posts from women who have decided not to have recommended treatments/meds.

    I don't have a lot of answers, but I did want to welcome you to the site and let you know that you will find support here. You may want to post where you live, in case someone in your area does know of an evening support group.

    God Bless...
    Julie

    Hi ♥
    I am so very, very sorry that you had a recurrence of breast cancer. I have also had breast cancer twice, once in 1985 and then again in 2009. My 2nd bc is a new cancer, not a recurrence, which is suppose to make me feel better. Guess what, it doesn't. I totally understand how you feel. I felt so different after my 1st with bc, but, getting bc again really changes that. A 2nd go around with it is a whole new ballgame. I had a lumpectomy and 25 rads in 85. Tamox was experimental then and not offered. I had 2 lumpectomy's in 09 with 37 rad treatments. The first one was to remove the cancer and the 2nd was to remove some cysts that appeared. I just had that in Nov. 09. I have a couple of new lumps now in that breast, but, they are pretty sure it is just tissue, so, they are injecting me with a steroid to break them up and soften them. It is working so far. Please know that we are all here to support and help you, day or night. You are not alone..never! I chose this time to not have any nodes removed for testing and to not take tamox. It was what I felt was best for me. I have more of my story on my Expressions Page if you'd like to read it. Please private message me if I can be of any help to you. I will be praying for you! Let us know what you do and how you proceed with your treatment. We are all your pink bc sisters now! And, we are a great group of fighters! God bless you!

    Love, Jeanne ♥</♥</font>
  • Tux
    Tux Member Posts: 544
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    I am sorry to hear of your
    I am sorry to hear of your new bc dx. I had DCIS in 2009 (age 62), with lumpectomy, rads, & now tamoxifen. I have found a few annoying side effects with tamoxifen, but, to me, it is worth it. Same for rads--if it increases my chances of survival--I will go for it! I,too, am a very active person, but have tried to let the bc give me a new appreciation of life.
    I work full time & do a lot of volunteer work, also. I do not belong to any group, but this website has been a godsend.

    Best wishes in your treatment. Hugs & prayers sent your way....
  • Mama G
    Mama G Member Posts: 762
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    Tux said:

    I am sorry to hear of your
    I am sorry to hear of your new bc dx. I had DCIS in 2009 (age 62), with lumpectomy, rads, & now tamoxifen. I have found a few annoying side effects with tamoxifen, but, to me, it is worth it. Same for rads--if it increases my chances of survival--I will go for it! I,too, am a very active person, but have tried to let the bc give me a new appreciation of life.
    I work full time & do a lot of volunteer work, also. I do not belong to any group, but this website has been a godsend.

    Best wishes in your treatment. Hugs & prayers sent your way....

    I'm so sorry...
    That sucks to have that 1% chance end up being you! Here most of us are gambling with odds no where near that and planning on making it, just like you must have! How could something like that happen to someone who did everything you did?! It's just not right. But you sure have a great attitude! I'm sure that will get you through this again and get your right back out there, fighting and living a full life again.

    by the way, where do you live? I sure could use a good, tasty dish every once in a while.
    hahaha

    God bless,
    Lorraine
  • carkris
    carkris Member Posts: 4,553 Member
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    Mama G said:

    I'm so sorry...
    That sucks to have that 1% chance end up being you! Here most of us are gambling with odds no where near that and planning on making it, just like you must have! How could something like that happen to someone who did everything you did?! It's just not right. But you sure have a great attitude! I'm sure that will get you through this again and get your right back out there, fighting and living a full life again.

    by the way, where do you live? I sure could use a good, tasty dish every once in a while.
    hahaha

    God bless,
    Lorraine

    My first cancer was not
    My first cancer was not stage 0 but it was stg 1 no nodes I had chemo and a mastectomy for scant but scattered DCIS. one year later I founf a seed abouve my scar, they thought it was a stitch too. but removed it and it was cancer recurrenece. I was freaked out. had radiation and not furthur problems. at that time they just tested for estrogen receptors and my wa sestrogen neg so I had no tamoxifen. Now I am dealing with a new primary. some of just hit those small numbers but I just had tests and they were neg. So I feel I survived that one. hope this helps
  • DianeBC
    DianeBC Member Posts: 3,881 Member
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    carkris said:

    My first cancer was not
    My first cancer was not stage 0 but it was stg 1 no nodes I had chemo and a mastectomy for scant but scattered DCIS. one year later I founf a seed abouve my scar, they thought it was a stitch too. but removed it and it was cancer recurrenece. I was freaked out. had radiation and not furthur problems. at that time they just tested for estrogen receptors and my wa sestrogen neg so I had no tamoxifen. Now I am dealing with a new primary. some of just hit those small numbers but I just had tests and they were neg. So I feel I survived that one. hope this helps

    Sending you positive
    Sending you positive thoughts and prayers. I am so sorry that you were in that 1%.

    Hugs, Diane ♥
  • mom62
    mom62 Member Posts: 604 Member
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    Hi,
    I too have a recurrance although I was a stage III last time. I have finished with chemo again and am on hormone therapy. I don't have any real side effects from it at all. I'm soon to be 48 years old. I now have bone mets on top of it. I agree that the literature is mostly geared towards first time cancer victims. I too find myself trying to find answers online. I also noticed a great distance in people the second time around except my family. Freinds are less supportive maybe they think the second time is a death sentance and they just dont' want to be around you. I miss the support I had last time as well. It's like when you have your second and third children, no shower, no compassion for the fact you are tired all the time. Stay positive and know that we are here for you if you need to vent or need a friend.

    Terry
  • Different Ballgame
    Different Ballgame Member Posts: 868
    Options
    jbug said:

    Welcome
    I'm sorry you've had to find this site, but I'm really glad that you did. Your story of recurrence is frightening and you must be devasted. You will find a great deal of love and support on this site. There are women here that have gone thru the gamut of treatments/therapy. There are number of survivors that post regularly as well as some spouses (which is wonderful!). The beauty of this site is that the women here understand that each of us makes the decisions about treatment that are right for them. You will find posts from women who have decided not to have recommended treatments/meds.

    I don't have a lot of answers, but I did want to welcome you to the site and let you know that you will find support here. You may want to post where you live, in case someone in your area does know of an evening support group.

    God Bless...
    Julie

    Good Idea To Post Where I Live - Another Question
    I live in Park Ridge, Illinois which is a northwest suburb directly adjacent to Chicago, Illinois. If any anyone reading this reply lives in my area and would like to get together just to talk, please contact me. Now, how do i have you contact me?
  • Different Ballgame
    Different Ballgame Member Posts: 868
    Options
    Mama G said:

    I'm so sorry...
    That sucks to have that 1% chance end up being you! Here most of us are gambling with odds no where near that and planning on making it, just like you must have! How could something like that happen to someone who did everything you did?! It's just not right. But you sure have a great attitude! I'm sure that will get you through this again and get your right back out there, fighting and living a full life again.

    by the way, where do you live? I sure could use a good, tasty dish every once in a while.
    hahaha

    God bless,
    Lorraine

    If You Live Near Me - You Will Get a Tasty Dish
    Hi Lorraine,
    If you live near Park Ridge, Illinois, I would be happy to give you a tasty dish. So, do you live nearby?
  • Different Ballgame
    Different Ballgame Member Posts: 868
    Options
    mom62 said:

    Hi,
    I too have a recurrance although I was a stage III last time. I have finished with chemo again and am on hormone therapy. I don't have any real side effects from it at all. I'm soon to be 48 years old. I now have bone mets on top of it. I agree that the literature is mostly geared towards first time cancer victims. I too find myself trying to find answers online. I also noticed a great distance in people the second time around except my family. Freinds are less supportive maybe they think the second time is a death sentance and they just dont' want to be around you. I miss the support I had last time as well. It's like when you have your second and third children, no shower, no compassion for the fact you are tired all the time. Stay positive and know that we are here for you if you need to vent or need a friend.

    Terry

    Mom62
    It is comforting to know that I am not off the wall as far as the emphasis of literature and the reaction of people. My immediate family and very close friends also are very supportive.

    Dear Terry. Somewhere I read where a woman had cancer and there was no further hope for her. Her daughter would not accept the prognosis and searched for another way to help her mother. It ended up that the daughter found out if you visualized on the cancer and visualized it shrinking, your thought process would be successful. So...daily the mother focused on her cancer (even ended up getting a photograph of what her cancer would look like), visually pictured the cancer, and mentally pictured the cancer shrinking. Outcome is that the cancer disappeared. Doctor verified that the cancer was no longer in her body. Now, I don't know if this is a true story or a wishful story, but I do know that the mind is most powerful, more powerful than many of us are aware of. Everything and anything is worth a shot!

    Good luck to you.

    Janelle
  • Different Ballgame
    Different Ballgame Member Posts: 868
    Options
    carkris said:

    My first cancer was not
    My first cancer was not stage 0 but it was stg 1 no nodes I had chemo and a mastectomy for scant but scattered DCIS. one year later I founf a seed abouve my scar, they thought it was a stitch too. but removed it and it was cancer recurrenece. I was freaked out. had radiation and not furthur problems. at that time they just tested for estrogen receptors and my wa sestrogen neg so I had no tamoxifen. Now I am dealing with a new primary. some of just hit those small numbers but I just had tests and they were neg. So I feel I survived that one. hope this helps

    Dear Carkris,
    Isn't it mind boggeling that DCIS can be scattered. A thought just hit me. If we did nothing, how would the scattered DCIS developed? Would there be multiple and multiple cancer tumors? I don't know if a doctor could answer this question.

    May I ask you age. May I also ask the length of time from the recurrence to the new primary.

    I am so sorry to hear that you are now dealing with a new primary. Just keep fighting and think positive. Good luck to you and my best wishes to you.

    Fondly,
    Janelle
  • Sunrae
    Sunrae Member Posts: 808
    Options
    mom62 said:

    Hi,
    I too have a recurrance although I was a stage III last time. I have finished with chemo again and am on hormone therapy. I don't have any real side effects from it at all. I'm soon to be 48 years old. I now have bone mets on top of it. I agree that the literature is mostly geared towards first time cancer victims. I too find myself trying to find answers online. I also noticed a great distance in people the second time around except my family. Freinds are less supportive maybe they think the second time is a death sentance and they just dont' want to be around you. I miss the support I had last time as well. It's like when you have your second and third children, no shower, no compassion for the fact you are tired all the time. Stay positive and know that we are here for you if you need to vent or need a friend.

    Terry

    Sorry that you're having to
    Sorry that you're having to go thru all this when you did everything right at the first occurrence. I think you are one of the bravest survivors I've heard of. With all that's going on you still have heart and soul and you will survive this too. I'm not in the same situation as you, being diagnosed in Sept.09 and have been on hormone theraphy for 4 months to reduce my tumors,then surgery in Feb and radiation, and possbily chemo. I am Stage 2A, Her +, 3 tumors and lymph node involvement. I'm not havin too many side effects from the drug, Femara, just lots of night sweats.
    There are so many loving supportive people here on this site and I've learned so much for their experiences. Even tho we can't be with you physically, please know that we're here for you and are sending you lots of hugs. Keep posting and stay in touch.
  • susie09
    susie09 Member Posts: 2,930
    Options
    Sunrae said:

    Sorry that you're having to
    Sorry that you're having to go thru all this when you did everything right at the first occurrence. I think you are one of the bravest survivors I've heard of. With all that's going on you still have heart and soul and you will survive this too. I'm not in the same situation as you, being diagnosed in Sept.09 and have been on hormone theraphy for 4 months to reduce my tumors,then surgery in Feb and radiation, and possbily chemo. I am Stage 2A, Her +, 3 tumors and lymph node involvement. I'm not havin too many side effects from the drug, Femara, just lots of night sweats.
    There are so many loving supportive people here on this site and I've learned so much for their experiences. Even tho we can't be with you physically, please know that we're here for you and are sending you lots of hugs. Keep posting and stay in touch.

    I am so sorry that you are
    I am so sorry that you are having to go thru this again. Sending you lots of prayers.
  • mom62
    mom62 Member Posts: 604 Member
    Options

    Mom62
    It is comforting to know that I am not off the wall as far as the emphasis of literature and the reaction of people. My immediate family and very close friends also are very supportive.

    Dear Terry. Somewhere I read where a woman had cancer and there was no further hope for her. Her daughter would not accept the prognosis and searched for another way to help her mother. It ended up that the daughter found out if you visualized on the cancer and visualized it shrinking, your thought process would be successful. So...daily the mother focused on her cancer (even ended up getting a photograph of what her cancer would look like), visually pictured the cancer, and mentally pictured the cancer shrinking. Outcome is that the cancer disappeared. Doctor verified that the cancer was no longer in her body. Now, I don't know if this is a true story or a wishful story, but I do know that the mind is most powerful, more powerful than many of us are aware of. Everything and anything is worth a shot!

    Good luck to you.

    Janelle

    Janelle Thank You
    Janelle,

    Thanks for the positive support. I'll have to try the visualization theory out. Please know you are not alone. We are all here for you so feel free to vent anytime. Take care and know you can beat this too!

    Terry
  • MAJW
    MAJW Member Posts: 2,510 Member
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    So sorry.......
    That you are dealing with this beast again.......As far as support groups, is there a chance that you could start one of your own for second time bc? Perhaps you could contact the social worker at the hospital that is close to you and ask for advice on starting an evening support group......Or even contact the American Cancer society in your area and explain your situation.....maybe they could start one.....
    I wish you the best.....and offer my prayers
    Peace be with you
  • marilyndbk
    marilyndbk Member Posts: 238 Member
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    Hi and welcome. I am 58 yrs
    Hi and welcome. I am 58 yrs old. I was first dx in 2001 with calcifications, stage 0 DCIS, had lumpectomy and 37 rads. I am also in that small percentage that was chosen to have been with bc again in 2009. They called it a new primary. It was also calcifications in the same breast very near original site. I had bilateral mastectomy with Latissimus flap reconstruction in Sept 09. I am still dealing with "filling" the expanders and hope to have the exchange surgery soon. You are so right in that the 2nd cancer is different ballgame. I know a positive mind is important in my recovery but sometimes difficult. I have to believe I was also chosen to be a survivor. I was born and raised in mid ILL but have called Mich home for the past 40 yrs. I have family in Ill and have the need to go "home" and see the cornfields occassionally. I hope you are able to find the support you need. We are all on this journey together and are stronger than we think. Take care. Marilyn
  • Different Ballgame
    Different Ballgame Member Posts: 868
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    Sunrae said:

    Sorry that you're having to
    Sorry that you're having to go thru all this when you did everything right at the first occurrence. I think you are one of the bravest survivors I've heard of. With all that's going on you still have heart and soul and you will survive this too. I'm not in the same situation as you, being diagnosed in Sept.09 and have been on hormone theraphy for 4 months to reduce my tumors,then surgery in Feb and radiation, and possbily chemo. I am Stage 2A, Her +, 3 tumors and lymph node involvement. I'm not havin too many side effects from the drug, Femara, just lots of night sweats.
    There are so many loving supportive people here on this site and I've learned so much for their experiences. Even tho we can't be with you physically, please know that we're here for you and are sending you lots of hugs. Keep posting and stay in touch.

    Dear Sunrae
    Thank you for your kind words. I am getting support and knowledge from CSN. Right now I am a sponge.

    You are going through more than I did. I wish you the best. Your smile is wonderful. Don't lose it. Good luck to you. I will continue to look for your postings.
  • Different Ballgame
    Different Ballgame Member Posts: 868
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    MAJW said:

    So sorry.......
    That you are dealing with this beast again.......As far as support groups, is there a chance that you could start one of your own for second time bc? Perhaps you could contact the social worker at the hospital that is close to you and ask for advice on starting an evening support group......Or even contact the American Cancer society in your area and explain your situation.....maybe they could start one.....
    I wish you the best.....and offer my prayers
    Peace be with you

    Support Group
    I am thinking of starting a support group. I do like your suggestions. In fact, earlier today I zapped an e-mail to my oncology radiologist asking her whom I could contact at the hospital. I asked her who was in charge of the hospital. (I already know who the Board of Directors are but I do not have their addresses. I don't have a problem contacting them, but I think it would only be fair to first talk to the person in charge of the hospital.) I sense that there is some resistance to having a support group in the evening at this major hospital in my town and I am not sure where it is coming from. Hence, that is why I want to talk to the head of the hospital. I have also considered contacting the American Cancer Society and will look to them shortly.

    I never thought of contacting the social worker at the hospital. How much authority do they have?
  • Mama G
    Mama G Member Posts: 762
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    Hi and welcome. I am 58 yrs
    Hi and welcome. I am 58 yrs old. I was first dx in 2001 with calcifications, stage 0 DCIS, had lumpectomy and 37 rads. I am also in that small percentage that was chosen to have been with bc again in 2009. They called it a new primary. It was also calcifications in the same breast very near original site. I had bilateral mastectomy with Latissimus flap reconstruction in Sept 09. I am still dealing with "filling" the expanders and hope to have the exchange surgery soon. You are so right in that the 2nd cancer is different ballgame. I know a positive mind is important in my recovery but sometimes difficult. I have to believe I was also chosen to be a survivor. I was born and raised in mid ILL but have called Mich home for the past 40 yrs. I have family in Ill and have the need to go "home" and see the cornfields occassionally. I hope you are able to find the support you need. We are all on this journey together and are stronger than we think. Take care. Marilyn

    I'm a FLORIDA gal....
    Darn! I sure could use a tasty dish around here.
    Keep up the good attitude! You can beat this! My prayers are with you.
  • Different Ballgame
    Different Ballgame Member Posts: 868
    Options

    Hi and welcome. I am 58 yrs
    Hi and welcome. I am 58 yrs old. I was first dx in 2001 with calcifications, stage 0 DCIS, had lumpectomy and 37 rads. I am also in that small percentage that was chosen to have been with bc again in 2009. They called it a new primary. It was also calcifications in the same breast very near original site. I had bilateral mastectomy with Latissimus flap reconstruction in Sept 09. I am still dealing with "filling" the expanders and hope to have the exchange surgery soon. You are so right in that the 2nd cancer is different ballgame. I know a positive mind is important in my recovery but sometimes difficult. I have to believe I was also chosen to be a survivor. I was born and raised in mid ILL but have called Mich home for the past 40 yrs. I have family in Ill and have the need to go "home" and see the cornfields occassionally. I hope you are able to find the support you need. We are all on this journey together and are stronger than we think. Take care. Marilyn

    Dear Marilyndbk
    Marilyn, oh my goodness. You had a recurrence with calcifications 8 years later. I guess they are calling it a new primary because it is 8 years later. I think it is much more difficult to be positive the second time around. You certainly are shocked - compare it to a slap in the face. In my case what was more surprising was the anger that was hidden inside of me. I think I was more shocked at my anger than I was at the cancer. The most important thing that you have to keep telling yourself is, "Positive thinking is healthier. Positive thinking is less damaging to the body and mind. Maintain your positiveness. You have to keep talking to yourself, keep telling yourself to stay positive. Call it a brain wasbhing." It is not easy to maintain your positiveness but I firmly believe it is the road to healing. Good luck to you.

    Fondly,
    Janelle