Mastectomy only--no chemo--no radiation--anyone else like me?

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dichatham
dichatham Member Posts: 5
edited March 2014 in Breast Cancer #1
Hi,
I'm 1 year from my double mastectomy--DCIS and invasive lobular carcinoma. Negative node. Had immediate reconstruction.

I know I'm lucky not to need any other treatment--not even tamoxifen but I also feel very alone. Everything I read--books--websites--discussion boards--focuses on the recovery/support for folks having chemo and radiation. There is alot of information about finding support while taking chemo/radiation treatments with other folks doing the same thing. Some hospitals also have hospital liaisons who follow-up with these patients to help them through this ordeal.

My case--1 night in hospital, immediate reconstruction with implants, home. Follow-up with my surgeon and final reconstruction surgeries. Not a call from the hospital cancer liaison, no one to find in my situation.

It's a lonely place. While I don't wish I had to have more treatment and I am amazed by the strength of folks who need chemo and radiation--it would be nice if I could find someone in my situation too.

I hope I don't sound ungreatful--I'm not. I just would like to talk to someone who may be feeling as I do.

Thanks to all, hope everyone stays well and have a Happy Thanksgiving.

Diane

Comments

  • dorothyt
    dorothyt Member Posts: 103
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    Hi Diane, You are not alone,
    Hi Diane, You are not alone, I had mastecetomy on right side in June no chemo, no radiation,but I'm taking Arimidex. I was only in Stage 1. Oncologist say the Surgeon removed all of the cancer and I did not have any in my lymph nodes. I thank God everyday. There is no Family History of any kind of cancer. My oncologist don't know what caused it. She thinks it had to do with me being postmenopausal. This has given me a whole new out-look on my life. My Thanksgiving is everyday.
  • KathiM
    KathiM Member Posts: 8,028 Member
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    Everyone is different....
    In the final analysis, it doesn't matter HOW the beast is vanquished, just that it IS Vanquished!!!!!

    Congradulate yourself for being so aware!!!! And having minimal treatment is the BEST!!!

    Call 1-800-ACS-2345....American Cancer Society....they will possibly have some leads...I am part of a program called 'Reach to Recovery', especially for breast cancer survivors...

    Hugs, Kathi

    (I got the whole treatment, so I'm not the same as you were...wish I was, I wouldn't have lost my hair...lol!)
  • dbs1673
    dbs1673 Member Posts: 203
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    Only?
    Diane, you didn't ONLY have a mastectomy, you had Cancer and a life changing experience! I do get what you are saying about mixed feelings of not needing additional treatment. To be diagnosed with cancer and not even look or feel sick just doesn't seem possible. I think people seee us as looking fine so we must be fine. I had radiation, not chemo. Like you, I'd never say that I wish I had to endure that as well and yet there is no hiding that you are going through chemo. People notice and the turmoil you feel matches on the outside. This whole process puts us in spinning chaos, nothing seems to match. Your experience is yours, no matter how many people have had the exact same course of treatment. We have greatful hearts for being able to be right where we are! Happy Thanksgiving !

    dawn
  • dorothyt
    dorothyt Member Posts: 103
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    dbs1673 said:

    Only?
    Diane, you didn't ONLY have a mastectomy, you had Cancer and a life changing experience! I do get what you are saying about mixed feelings of not needing additional treatment. To be diagnosed with cancer and not even look or feel sick just doesn't seem possible. I think people seee us as looking fine so we must be fine. I had radiation, not chemo. Like you, I'd never say that I wish I had to endure that as well and yet there is no hiding that you are going through chemo. People notice and the turmoil you feel matches on the outside. This whole process puts us in spinning chaos, nothing seems to match. Your experience is yours, no matter how many people have had the exact same course of treatment. We have greatful hearts for being able to be right where we are! Happy Thanksgiving !

    dawn

    Diane, Dawn is right. Our
    Diane, Dawn is right. Our course of treatments or different. You did not say anything about other tests. I had a Bone Scan, Chest CT Scan, an Abdomen CT Scan and blood-work. My Oncologist did not just shake my hand and say have a good life. I'm schedule for a repeat of the CT Scans in Feb. Yes, I will say it I'm afraid that my chances of reacurrance may be greater than some one that had the chemo or radiation. I'm not going to live my life waiting for it to come back. There are restless nights from the surgery and the Arimidex. I have gain weight . So everyone thinks I'm find, or should I say back to my old self. My life will never be the same .
  • creampuff91344
    creampuff91344 Member Posts: 988
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    dorothyt said:

    Diane, Dawn is right. Our
    Diane, Dawn is right. Our course of treatments or different. You did not say anything about other tests. I had a Bone Scan, Chest CT Scan, an Abdomen CT Scan and blood-work. My Oncologist did not just shake my hand and say have a good life. I'm schedule for a repeat of the CT Scans in Feb. Yes, I will say it I'm afraid that my chances of reacurrance may be greater than some one that had the chemo or radiation. I'm not going to live my life waiting for it to come back. There are restless nights from the surgery and the Arimidex. I have gain weight . So everyone thinks I'm find, or should I say back to my old self. My life will never be the same .

    Masectomy only - no chemo - no radiation
    The more I read the stories behind each individual who posts here, the more I realize that everyone has experienced the realization that cancer is a lifelong event....not just in the moment. For myself, I had diagnoisis, lympectomy, chemo and radiation. The threat of recoccurrence is always present in my mind, although it has been only 9 months since my initial diagnoisis. I think there is a lot to look forward to, and also a lot of doubt as to whether I will live to be a really old woman. Whatever the future holds for all of us, we should do it with a thought that I have with me always. Today is the best day of my life, and the future is to be thought about when it comes. Courage is not always a roar, but sometimes is a quiet little voice that says things will be better tomorrow. Hugs to all.

    Judy
  • Wellhell
    Wellhell Member Posts: 5
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    Diane....
    Yes I am in your boat also. First diagnosed in 2003, lumpectomy and radiation. Recurrence this July. Mastectomy and no chemo. I know just how you feel. I felt very fortunate that I didn't have to have chemo etc. almost guilty for all the other women are going through hell. But then someone said to me, well its your journey and it still wasn't fun. With this recurrence it really mentally knocked me off my feet. I thought I had it licked, done and then Wham. I have good days and bad days mentally.
    Cancer never really leaves you. You just got to keep on truckin!I am so glad you wrote. You are not alone. This is an excellent website. I don't write very often but I sure read everybodies comments. Thanks to all of you.
    MC
  • dichatham
    dichatham Member Posts: 5
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    Wellhell said:

    Diane....
    Yes I am in your boat also. First diagnosed in 2003, lumpectomy and radiation. Recurrence this July. Mastectomy and no chemo. I know just how you feel. I felt very fortunate that I didn't have to have chemo etc. almost guilty for all the other women are going through hell. But then someone said to me, well its your journey and it still wasn't fun. With this recurrence it really mentally knocked me off my feet. I thought I had it licked, done and then Wham. I have good days and bad days mentally.
    Cancer never really leaves you. You just got to keep on truckin!I am so glad you wrote. You are not alone. This is an excellent website. I don't write very often but I sure read everybodies comments. Thanks to all of you.
    MC

    Mastectomy only--no chemo--no radiation--anyone else like me?
    MC,
    Thanks so much for responding. I'm so sorry your cancer came back--even though mine is "all gone" and I had negative nodes, I still think about it coming back somewhere else. I'm glad you are not clear and doing well. I have read a good book called The Human Side of Cancer by Jimmie C. Holland & Sheldon Lewis. It has helped me a lot to deal with my emotions and accepting what I've been through.

    For now, I'm working very hard to be OK with myself and my self-image. I had immediate reconstruction and while it looks pretty good--it is still a reminder when I look at my breasts of what I've been through. I hope you continue to do well and you never have to deal with this again. My wish for all of us.

    Thanks much,
    Diane
  • mldapril17
    mldapril17 Member Posts: 1
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    You are Not Alone
    Hello Diane,
    I was diagnosed with DCSI Stage 1 in June 02. Since I was not even in Perimenopause the Oncologist could not get an "Estrogen Receptor Reading" thus there was no need in injecting me with Radiation nor Chemotherapy. This is a total blessing for all who do not have to go through this horrible ordeal! Thank God that our cancer was discovered and removed early enough to be spared from having to endure those treatments!
    So, please understand that your cancer was real, that is why you had to undergo the mastectomies. However give thanks that the cancer was not discovered in the later stages.
    Initially only my right breast, two sentinel nodes and the lower level of my lymph nodes on the right side were removed. There were three cancers hidden, one was bi-lateral lobular Carc. which was not visible in my left breast. I had to go to Lifetime Cancer center every three months for mammography and annually for breast MRI. In April 2005 my mamo. results came back as "multiple abnormalities, probably benign, come back in a year." I elected to go ahead and have the mastectomy. The surgeon decided to place an expander in me instead of the implant. Unfortunately, during the surgery in March 2006 -(replacing the expander with the implant) I contracted a deadly internal fungal infection behind the implant which almost literally killed me! It had taken me almost three years to heal from that infection!
    I'm in search of a skilled surgeon in the Tampabay Florida area who has a great record for the least infections that can reconstruct me.
    If you or anyone knows of one please email me mldapril17@yahoo.com. I'll check back here also.
    Merry Christmas and God Bless You all!
    Marla
  • cabbott
    cabbott Member Posts: 1,039 Member
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    You have lots of company
    I was diagnosed with stage 1 breast cancer 6 years ago. No chemo and no radiation. But because my cancer was in two different places in the same breast, I had a mastectomy(no reconstruction by choice)instead of a lumpectomy. It may have been a little cancer-one friend with aggressive cancer called mine a "baby cancer"!- but my emotional reaction was about the size of Mount Everest! I later learned that most folks that are diagnosed with cancer have major emotional distress when diagnosed and that the size and length of their reaction has nothing to do with the size or stage of their cancer. It really helped to go to the support groups and it helps now to talk with the survivors here. Even if I can't relate to all the news about chemo and radiation, we share the same emotional ups and downs. We all have the same tests and rechecks. We share the same nightmares before an office visit. We all worry the same way about our future. This website has lots of support for all the cancer survivors, whatever their stage. Welcome!

    C. Abbott