Survivors guilt....

Minka
Minka Member Posts: 29
in Breast Cancer #1
Dear Pink Sisters:
I have just been through a whirlwind with breast cancer. I found a lump in late May, had diagnostic mammogram early June, 2 lumps so both biopsied, lumpectomy with two kinds of cancer on the perimeters, both invasive and non, Stage2B. They wanted to do another lumpectomy and I talked to my oncologist...not my surgeon about the 'odds'. I opted for a complete radical mastectomy on my left breast. After recovering, my oncologist sent a tissue sample for an OncotypeDX test, and it came back with a score of '0'. My oncologist said he had never seen such a low score and that I am 'cured'. I don't need radiation, I don't need chemo, in fact both would do more harm. I do have to do some kind of estrogen blocker...Arimidex, Tamoxifen....but both my surgeon and oncologist say I'm 'cured'. So.
First, can you ever be 'cured' of cancer? In my mind, once you've had it, the chance of recurrance is always there. And second, I feel awful that I haven't had to go through what so many of you have. I also lost my brother-in-law to cancer 4 months ago and didn't want to tell my sister-in-law that I'm 'cured' because of what all she went through. I cried before and after telling her. I know I 'should' feel grateful and happy, but I'm not. My partner says there's a reason I've been spared and I agree, but I'm having a real problem with the 'cured' thing. Help? I wouldn't wish what I've been through on anyone...but I read and hear what so many others have been through and just don't feel 'lucky'...I feel guilty. In three months I've lost a breast and am 'cured'. It just doesn't feel 'right'.

Comments

  • SIROD
    SIROD Member Posts: 2,194 Member
    #2
    Cured?
    Some cancers give a 5 years of no recurrence and consider the patient cured. Breast Cancer can return anytime and many find that even after 30+ years, the cancer has returned. It is a surprising statement from an oncologist.

    I would go and have a 2nd opinion. Ask for copies of all your records, you are entitled to them, also as for CD of your mammogram or any scan you have had.

    Did they do a sentinel lymph node procedure?

    You didn't say if you are ER or PR positive? I am assuming you are since you are on either Arimidex or Tamoxifen. If you are ER or PR positive then the hormonal treatment might be all you need. For those who are positive, radiation and chemotherapy is not always needed.

    Good luck to you and never feel guilty.

    Doris
  • Minka
    Minka Member Posts: 29
    #3
    SIROD said:

    Cured?
    Some cancers give a 5 years of no recurrence and consider the patient cured. Breast Cancer can return anytime and many find that even after 30+ years, the cancer has returned. It is a surprising statement from an oncologist.

    I would go and have a 2nd opinion. Ask for copies of all your records, you are entitled to them, also as for CD of your mammogram or any scan you have had.

    Did they do a sentinel lymph node procedure?

    You didn't say if you are ER or PR positive? I am assuming you are since you are on either Arimidex or Tamoxifen. If you are ER or PR positive then the hormonal treatment might be all you need. For those who are positive, radiation and chemotherapy is not always needed.

    Good luck to you and never feel guilty.

    Doris

    survivor's guilt
    Yup...ER and PR positive, lymph nodes were negative...that's why I could have the OncotypeDX test...it's very specific. Must be post menopausal, ER+, lymph node negative. Insurance didn't want to pay for it at first, and my oncologist called and now they're paying, so I must have fit the profile. Like I said, the doctors (both) said they'd never seen anything like it and had it checked (took a month to get the results). I'd like to know if anyone else has had the OncotypeDX test and what their results were. I just am not buying the 'cure' part. I will not become complacent and will continue to get mammograms and whatever else I need to be sure. The 'guilty' part is something I'm just going to have to work through. This entire journey has taken less than three months. I'm overwhelmed.
  • mollieb
    mollieb Member Posts: 148
    #4
    Some Doctors Will Use "Cured," Some Won't
    I think oncologists in general are very cautious, because they have seen it all. I would just assume your doctor is telling you to relax and enjoy life and not obsess about whether cancer will return. That's good advice even for people with higher Oncotype DX scores! I don't know what "cured" means but I am guessing your doc thinks there are no cancer cells in your body. That's good news, any way you look at it.
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    I heard guilt is when harm
    I heard guilt is when harm is done with INTENT! So unless you purposely hurt someone try to NOT feel guilt...that has helped me over certain things I have felt guilty...

    I hope you can get through this

    Denise
  • carkris
    carkris Member Posts: 4,553 Member
    #6
    disneyfan2008 said:

    I heard guilt is when harm
    I heard guilt is when harm is done with INTENT! So unless you purposely hurt someone try to NOT feel guilt...that has helped me over certain things I have felt guilty...

    I hope you can get through this

    Denise

    i do think some cancers can
    i do think some cancers can be cured and some types of breast cancer as well. Just like lung cancer you can get a surgical cure. I would say you can feel fortunate to have dodged a bullet. Its simple biology, and no one is lucky to have to get cancer but on the scheme of things Yay!
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    carkris said:

    i do think some cancers can
    i do think some cancers can be cured and some types of breast cancer as well. Just like lung cancer you can get a surgical cure. I would say you can feel fortunate to have dodged a bullet. Its simple biology, and no one is lucky to have to get cancer but on the scheme of things Yay!

    If you're "cured" why do you need Arimidex?
    Arimidex is treatment. What the heck are they treating if you're "cured"? Do you really need it? I might pass if I had your score! Congratulations.

    Oh, I think I know - the Oncotype DX score is based on the rate of recurrence with Tamoxifen only. The higher numbers mean you need more than Tam (i.e., chemo) because the study showed that women whose tumors expressed scores in the higher numbers had a higher rate or recurrence with Tamoxifen only. I guess the 0 equates to the rate of recurrence on Tamoxifen alone, not no adjuvant treatment at all. Or at least that's how I understand it.

    Your score is wonderful. How could it be any better? Yippee. Do not feel guilty. Feel blessed.

    Suzanne
  • sinee
    sinee Member Posts: 196 Member
    #8
    good for you
    Congratulations and take a deep breath......it must feel like the neighborhood is destroyed and your house is still standing...so loose the guilt and invite the neighborhood to dinner....either way, we love you, you are a survivor, you don't have to suffer more, or longer to be one....keep us posted, pop in and let us all know what you are doing with your good news. You might even get a bit depressed, take the time you need to heal, you have been to hell and back with the words that changed you forever, you've got cancer, you heard it, felt it, dealt with it, just like the rest of us did....when you feel better, come on in and tell us. We all love to hear this kind of story~woohoo for you~we are all soooooooo happy for you~Sinee
  • mamolady
    mamolady Member Posts: 796 Member
    #9
    Minka,
    Don't feel guilty.
    Minka,
    Don't feel guilty. There is no easy or good cancer. Everyone's journey is different, but none is better that another.
    We are all happy you have good news and wish you all the best.
    Enjoy the good news!

    Cindy
  • Mitzi333
    Mitzi333 Member Posts: 511 Member
    #10
    mamolady said:

    Minka,
    Don't feel guilty.
    Minka,
    Don't feel guilty. There is no easy or good cancer. Everyone's journey is different, but none is better that another.
    We are all happy you have good news and wish you all the best.
    Enjoy the good news!

    Cindy

    Minka... Congratulations!!!
    Since you received that GREAT result... Relax and Enjoy it!!! No need for guilt... It's time for you to Enjoy the Grace and Blessings you've received!!!

    Praise GOD!!!

    Hugs~
    Mitzi ;0)
  • Different Ballgame
    Different Ballgame Member Posts: 868
    #11
    I know exactly how you feel.
    First, I felt like an imposter because I did not have chemo, radiation, or Arimidex after the contralateral mastectomy. I told this to my plastic surgeon and his nurse. I said that I did not experience what other women experienced. The nurse then said to me, "But you lost two breasts." I had 0 Stage DCIS with no cancer in the lymph nodes. After that, whenever I felt guilty, I would recall what the nurse said to me. I forfeited 2 breasts...one healthy and one cancerous. Many women choose to keep their breast. Each cancer patient makes the decision that is best for her.

    There is never a guarantee that we are cured of cancer. We, however. should be alert but not live our lives in fear.

    I did get a recurrence on my scar three years later. One cell got away. My odds were less than 1% for a recurrence...extremely rare. Had radiation. No chemo. Cancer changed my life again whereby I continued to gain knowledge and have shared that knowledge. I found this site as I was finishing radiation. I found 2 breast support groups which meet monthly. I became a volunteer for Lynn Sage Breast Center and have made many women feel relax when they come in for either further diagnostic testing or follow ups. I research on the internet for my plastic surgeon and have help written...so far 11 pages...various information that is helpful to the breast cancer patient.

    Please, don't feel guilty. After all, you did lose a breast...no small feat.

    Lots of Hugs,
    Janelle
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #12
    guilt
    Guilt is for someone who has offended another. I don't think anyone is offended because you lucked out.
  • RE
    RE Member Posts: 4,591 Member
    #13
    Cured....interesting
    Minka it is not my intention to rain on anyones parade but it is my experience that cured is not in the cancer dialog, remission yes, cured no. I have point blank asked my onco this and he has said that remission is what they strive for for us who have cancer that to date no cure has been found. I had no postive lymph nodes of the 33 that were taken and I had 6 rounds of chemo and radiation and my cancer came back. I do not tell you this to scare I just think you should be aware so that you do seek care when you are not feeling well just to be sure there are no cancer issues. If you doctors truly believed you were cured they would not be putting you on estrogen blockers, they are attempting to block cancer.

    In regards to survivors guilt please do not do that to yourself, you are here because that is your walk in life some leave sooner than others. I have lost my Mom, sister, aunt, sister in-law and two brother in-laws all to cancer, I do not feel guilty that I am still here I live my life to the fullest and think of them often with love. I am sure your family would not want you to feel badly for surviving.

    Lastly please do not feel awful that you do not need chemo or radiation, we rejoice that you are spared that we do not wish it on you and are happy for you! You are a cancer survivor and that makes you one of us!

    Hugs,

    RE
  • KathyLQ
    KathyLQ Member Posts: 100
    #14
    My oncologist said the same
    Minka, I took estrogen for post menopausal problems for 5 years. Then I got BC, have had a mastectomy. No cancer in lymph nodes, no additional cancer found in removed breast. I choose to not have chemo or radiation, I'm taking Femara.
    My oncologist twice has said he believes it did not escape, and to stop worrying, and go have a good life. He used the words "you are cured" as well.
    But honestly, I know there's always a chance of it coming back. I think they want me taking Femara as an insurance policy, perhaps as much to prevent an new BC because it's obvious (to me) that estrogen triggered one cancer growth.
    I've been through my 5th surgery in 14 months, reconstruction is almost done.
    But with my oncologist's words, I realize how lucky I am and I'm thankful every day.
  • sweetvickid
    sweetvickid Member Posts: 459 Member
    #15
    I find thier comment
    I find thier comment irresponsible. From my research I have found that at any given time we usually have a "cancer" cell floating around in our body. The deal is one cell won't hurt us, its when they start mutiplying that we then have a problem.

    I think to say currently I have no evidence of disease is a more accurate comment. A friend of my mothers said for 20 years she was cured of breast cancer, then it came back with a vengenance and she died within 3 months.

    Guilt is a useless emotion. A healthy person can feel guilty that they don't have cancer. Finding logic is hard. There is no answer for why we get cancer and no answer why some of us survive. I think what we have to do is make sure we live a good life. For ourselves and for those we lose to cancer.
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #16
    sweetvickid said:

    I find thier comment
    I find thier comment irresponsible. From my research I have found that at any given time we usually have a "cancer" cell floating around in our body. The deal is one cell won't hurt us, its when they start mutiplying that we then have a problem.

    I think to say currently I have no evidence of disease is a more accurate comment. A friend of my mothers said for 20 years she was cured of breast cancer, then it came back with a vengenance and she died within 3 months.

    Guilt is a useless emotion. A healthy person can feel guilty that they don't have cancer. Finding logic is hard. There is no answer for why we get cancer and no answer why some of us survive. I think what we have to do is make sure we live a good life. For ourselves and for those we lose to cancer.

    No need for guilt
    Be thankful you didn't have to have poison pumped thru your veins, if I could have gotten out of it you can bet your boots I would have, and not feel one ounce of guilt.

    We all bring something to the table. I went thru chemo, but I had a lumpectomy, so I do not know how it feels to loose a breast. I do know how it feels to undergo chemo, and rads. But we all know how it feels to hear those words, "I'm sorry, but it's malignant."
  • poplolly
    poplolly Member Posts: 346
    #17
    I think that's the reason I
    I think that's the reason I like the phrase--in remission. That way you can express the idea that it could come back.


    judy

Discussion Boards