anyone had secondary cancers from radiation?

karinlee
karinlee Member Posts: 15
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
i am a survivor of hodgkin's disease who was recently diagnosed with breast cancer (probably caused by the radiation treatments). i am looking to connect with other folks who have had similar experiences.

i had a rough road with hogkin's. . . multiple relapses, lots of chemo and radiation regimens and then a stem cell transplant. i was recently diagnosed with breast cancer and had bilateral mastectomies and a hysterectomy. two weeks ago a nodule was found on my thyroid and i'll have a biopsy to determine if i have thyroid cancer. i am 34. i recently moved to a new city and tried connecting with some cancer support groups, but all of the patients were newly diagnosed and brand new to the cancer experience. while they were nice people, i couldn't connect with them (or receive as much support from them) as i had hoped, since my experience with cancer has been much more extensive. has anyone experienced a similar situation as i have? would love to hear your story.

thanks, karin

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to do a search of the personal web pages to see if there is someone with similar experiences that you would like to connect with. To do this, click on "Personal Web Pages" on the left hand side of the this page. Then put in the search criteria you are looking for. If you find someone you are interested in connecting with, you can send them an internal CSN email.

    I wish you the best.

    Take care and be well,

    Dana
    CSN Dana
  • karinlee
    karinlee Member Posts: 15
    #3
    AuthorUnknown said:

    Hello,

    You may want to do a search of the personal web pages to see if there is someone with similar experiences that you would like to connect with. To do this, click on "Personal Web Pages" on the left hand side of the this page. Then put in the search criteria you are looking for. If you find someone you are interested in connecting with, you can send them an internal CSN email.

    I wish you the best.

    Take care and be well,

    Dana
    CSN Dana

    Dana,

    Thanks for the tip.

    Best,

    karin
  • MichelleKynkor
    MichelleKynkor Member Posts: 2
    #4
    karin, I also had a similar experience. I am 45, had Hodgkins when I was 19. Had a spleenectomy, and radiation. Last year I found out I had breast cancer (bilateral mastectomy and 6 mos of chemo), and thyroid cancer (had a thyroidectomy and the radioactive iodine pill). It was a tough year. Physically and mentally. I'm still having a bit of a tough time. I call it "post traumatic cancer syndrome"! Would love to talk to you about it.
  • karinlee
    karinlee Member Posts: 15
    #5
    MichelleKynkor said:

    karin, I also had a similar experience. I am 45, had Hodgkins when I was 19. Had a spleenectomy, and radiation. Last year I found out I had breast cancer (bilateral mastectomy and 6 mos of chemo), and thyroid cancer (had a thyroidectomy and the radioactive iodine pill). It was a tough year. Physically and mentally. I'm still having a bit of a tough time. I call it "post traumatic cancer syndrome"! Would love to talk to you about it.

    hi michelle,

    thanks a ton for your response. i am sorry you have had to deal with all that junk. even though i am sad for you, i am happy to have met you since it sounds like we have had very similar experiences. i am grateful that the radiation seemed to cure me from hodgkins, but getting breast cancer from radiation is another tough thing to overcome, don't you think? did you get thyroid cancer from the radiation as well? what is the current state of your health? how do you feel mentally? i have had a tough time lately but i am starting to come around and find the mental strengh again. would love to hear from you again!

    best, karin
  • blue1993
    blue1993 Member Posts: 1
    #6
    I had hodgens in 1984 ,had chemo and radiation .I had breast cancer 4 years ago I still have my right breast.I had blood work done recently ,Dr. says my blood work was off , I need to see her in a couple of weeks I think she is looking at hodgens with the blood work. anyways I am worried hopefuly its nothing .
  • klheureux
    klheureux Member Posts: 2
    #7
    hello all. must say that it makes me simultaneously happy and sad to hear all of your stories.

    i have a similar story and have also felt that members of all the cancer support groups can not relate to or help in my situation. i was diagnosed with Stage IIA NHL in 1989 at age 11 and treated with approx. 7mos of chemo and the standard 21 day round of modified mantle radiation. I responded well to treatment then and experienced little complications, if any, for nearly 18 years.

    In 2005, I developed a thyroid goiter that tested benign in biopsies. But after seeing a specialist, I decided to have it removed prophylactially. The pathology revealed two small tumors and I was subsequently treated with radioactive iodine treatment.

    That experience was a real eye opener. Up until then, I'd felt that I had paid my dues and would live a normal existence. But I slowly, reluctantly read up and became educated about the reality of being a survivor - and more specifically - a childhood survivior.

    Because of the thyroid cancer, I was referred to a clinic that helps childhood cancer survivors monitor risks and immediately began a customized follow-up screening program. Heart, bone density, lungs checked out fine. But my first breast screening took me down another long journey. After about 4 months of scans and biopsies, I was diagnosed with Stage I bi-lateral breast cancer. Not even a year after my thyroid surgery, I found myself undergoing a double mastectomy and reconstruction.

    I was tested for the breast cancer genes and was found to have none, so doctors all believe both malignancies were a result of radiation treatments.

    Luckily, I was able to avoid further chemo and radiation with both experiences. And I also feel very lucky to have hooked up with the clinic, as I would most certainly be facing a more dire situation down the road.

    I just celebrated my 30th birthday this past summer, and had my final nipple reconstruction surgery this October and am doing, feeling well. But I am just starting to come out of that rough patch mentally, turning to yoga, bike riding, music (I used to have a rock band and am starting it up again finally), and survivior advocacy to help me through it. But I so still struggle every day to remiain positive. Cancer is hard to escape. There are reminders everywhere you look, and just when you start to feel normal, you see a pink ribbon or hear of someone just being diagnosed or worse... and you have to muster up all your strength and energy to focus on the positive and keep looking toward the future. And although I am relatively well-adjusted, I feel isolated from most of peers who go about their normal existences. Not to mention the burden of maintaining health care. I find that to be my biggest struggle as I have a bit of an entruprenurial spirit, but feel trapped in corporate America for the benefits.

    What I mean to say is that, sometimes being a survivor is harder work then when you are actually fighting your battles with cancer, because at least then you know what you are up against.

    But as much as I get down and discouraged, I do find hope everywhere. One of the things I focus on is doing everything in my power to to keep healthy and mitigate further complications by staying active and eating well. I also have faith that, even if something else happens down the road, there will be better treatments for those complications - new drugs, less invasive surgeries, gene therapies, etc. Who knows? After all, had each of us had initially had cancer as little as 10 years before when we did, our chances of survival were pretty low. And while thoughts of the future can be daunting as a survivior--Good or bad, we don't know what the future holds. So I try to stay focused on the "good" possibilities of the future.

    That said, I am glad to have heard your stories and would love it if we could introduce "our-non-cancer-selves" to each other and keep in touch over e-mail. If you up for it, I will start...

    You can check out my web portfolio at http:///archives.kelly-lheureux.com/ which will tell you lots about who I am and what I like to do. Then, feel free to e-mail me at kelly@go-togirl.com to tell me your stories about both your cancer and general life experiences. It's great to connect, but important to remember that we are individuals first, and survivors second (or in our case, third and forth too ;-)

    Best wishes. Hope to hear from you (and any others with a similar experience) soon!
    *kelly

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