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lmginric's Message Board Messages

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On Jan 16, 2013 2:16 AM since1972 wrote:

On Jan 16, 2013 12:35 AM lmginric wrote:

I was diagnosed stage IIB in 1990 after a suspicious lump in my neck was noticied by an attentive physcian.  In retrospect, I had symptoms, night sweats and intense bouts of itching, but I was 19 and clueless.  I had the gruesome, laparotomy to stage the cancer and a splenectomy at the same time.  Followed by two courses of upper mantle radiation and one course of lower mantle as a precaution. I responsed to treatment relatively well, skin burns, exhaustion, and ultimately shingles which put me back in the hospital but I got back to college and graduated with my class after missing an entire semester for surgery and treatments!  Happy to report, went on to marry my college sweetheart and have a baby after one miscarriage.  I was told I would probably not conceive but the surgeon did tie my ovaries to something in abdomen but out of the field of radiation.  I will be forever grateful for my beautiful daughter.  Which brings me to around 20 years later, when a suspicious lump resulted in my thyroid being removed. It was non-cancerous but that could only be ruled out upon removal.  This past spring, one week after my father's death at 63 from melanoma, they found a basal cell carcinoma on my chest just below my radiation tattoo.  There is no way to know if this is radiation related or sun exposure related.  Either way, I am vigilant now about sunscreen.  My mom died of breast cancer when I was 17 and she was only 37.  Now that my daughter is 14, I am finally ready to take the BRCA 1 & 2 test to find out if I have the gene.  I hope to be negative for my daughter's sake but will not be totally relieved because of everything I'm reading about the incidence of breast cancer in women who had the radiation for Hodgkin's.  Does anyone know of any reasearch groups studying the long term effects of radiation treatment?  I'd like to become more proactive in my own healthcare and share my story if it will help someone else.  Thanks for reading!

Hey there! Congratulations on hanging in there through such a long, long road to survival. I can certainly appreciate many of the things you've struggled with and I'm sure you'll hear from others as well. I am a 40 year surivor of Hodgkins and have had many of the same issues you have had- same surgeries, treatment, etc. Even basal cell carcinomas. Like you my surgeon did a procedure at the time of the staging lap (and splenectomy) to shield my ovaries from radiation. Unfortuanately I developed a cyst from an infection introduced during the surgery which resulted in blocked fallopian tubes. I had one pregnancy but it was an ectopic- almost didn't get out of that one!! I was lucky to be able to adopt- 4 children! and also like you am eternally grateful for my role as a mother.

As for the breast cancer concern I think you'll find through this site and others that it is certainly something women who have been through what we have need to think about. My understanding is that part of the larger issue is that IF diagonosed with the disease the problem is that our treatment choices are much more limited. Most of us who have had the kind of mantle radiation we received (mine was in the 70's) cannot receive much more if any. Your radiation treatment may have been different so I would find out. But that's essentially the dilemma- not just if you are diagnosed but if you are what you can do about it.

I can tell you that I made a decision (which I realize is quite personal and NOT for everyone!!) to have bilateral masectomies about 12 years ago. I had zero evidence of breast cancer at the time. I just decided that I wanted to give myself the best chance possible of never getting breast cancer. I have never, ever regretted my decision. It was just one less thing for me to be scared of. And, quite frankly, thanks to reconstruction I look pretty great!! I tell you this with some hesitancy because I realize it sounds like a lot to take in but I think if you explore this decision with your doctors (hopefully someone who is well versed in long term survivor issues??) you'll find that I'm not alone.

I am followed at Dana Farber Cancer Inst. in Boston and they have a terrific long term survivors clinic. I know Memorial Sloan Kettering does as well. I'm sure there are others. These places may be the best at providing some guidance as well as up to date informaion on some of the questions you raise.

Good luck to you! Please know that I am thinking of you and will be happy to write again if it's helpful. Take care- Erin

Oh Erin- Your reply is an answer to my prayers!  I know you've had a long journey as well and I'm so happy you were ultimately blessed with 4 children.  Thanks you for sharing what you have learned about breast cancer treatment limitations. I was recently startled to stumble upon an article about that and it started me thinking about having a bilateral masectomy.  After having my child, I developed multiple and massive fibroids.  My ob/gyn was also a skilled surgeon and she recommend total hysterectomy and wanted to remove my ovaries.  I was still so young but she was fiercely protective of me, having treated me since I was 16, and suggested "taking out the ovaries is just one less place the cancer can come back".  I'm so glad I followed her advice and that's pretty much where I am with my breasts at this point.  I told the genetic counselor, I feel like a sitting duck.  I get my breast checks, I get my mamograms, I paid for my own MRI out of pocket because my insurance company said it was "experimental" after they authorized me to go ahead and get it per the doctor's recommendation.  My body is riddled with scars and although I have my pride, I don't really care about another scar.  I'm just concerned I might not heal very well given that the basal cell recovery was more than I bargained for with infection and spitting sutures.  But I know I have the best surgeon in Richmond and if he says he can do it, I will give it serious consideration regardless of the BRCA results.  My thryoid blood tests were always "normal" until it was removed and biopsied and although it wasn't cancer, Thank God, they did determine I had Hasimoto Disease, which went undetected by blood tests.  So I guess the point is, in my experience, I've found my gut instincts are generally pointing me in the right direction.   It's great to hear from someone who followed theirs and is happy with the decision!  Thanks for taking the time to write to me, Erin.  I'm so glad you did!  Take care of yourself!  Fondly, Lisa

I was diagnosed stage IIB in 1990 after a suspicious lump in my neck was noticied by an attentive physcian.  In retrospect, I had symptoms, night sweats and intense bouts of itching, but I was 19 and clueless.  I had the gruesome, laparotomy to stage the cancer and a splenectomy at the same time.  Followed by two courses of upper mantle radiation and one course of lower mantle as a precaution. I responsed to treatment relatively well, skin burns, exhaustion, and ultimately shingles which put me back in the hospital but I got back to college and graduated with my class after missing an entire semester for surgery and treatments!  Happy to report, went on to marry my college sweetheart and have a baby after one miscarriage.  I was told I would probably not conceive but the surgeon did tie my ovaries to something in abdomen but out of the field of radiation.  I will be forever grateful for my beautiful daughter.  Which brings me to around 20 years later, when a suspicious lump resulted in my thyroid being removed. It was non-cancerous but that could only be ruled out upon removal.  This past spring, one week after my father's death at 63 from melanoma, they found a basal cell carcinoma on my chest just below my radiation tattoo.  There is no way to know if this is radiation related or sun exposure related.  Either way, I am vigilant now about sunscreen.  My mom died of breast cancer when I was 17 and she was only 37.  Now that my daughter is 14, I am finally ready to take the BRCA 1 & 2 test to find out if I have the gene.  I hope to be negative for my daughter's sake but will not be totally relieved because of everything I'm reading about the incidence of breast cancer in women who had the radiation for Hodgkin's.  Does anyone know of any reasearch groups studying the long term effects of radiation treatment?  I'd like to become more proactive in my own healthcare and share my story if it will help someone else.  Thanks for reading!

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About lmginric

Survivor
Breast Cancer, Hodgkins Disease, Melanoma, Skin Cancer - Basal Cell
After Treatment

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